Not just an Ordinary Life...

Measuring the value of life...

2012-02-01T14:17:00.001-06:00

What is the value of a life? Immeasurable, precious, worthy of protecting... or does that value depend upon circumstances? As I care for my children, my disabled children...I see the value of that life every day. No matter how profound the disability, I see a unique and God given personality, a soul that pierces mine...a life of inifite value...one worth every moment of the care that they are given every day. I take that for granted...I expect that others see the same precious child that I see...I expect that others can see through the disability, the frailty..and see a person created in God's image. But then I find myself in the hospital with a very sick little boy and quickly I am reminded that others do not see through the same lens that I see..

The doctor who oversaw Isaac's care when he was hospitalized for RSV must think the lens that I use to see is cracked..warping the image of my son. It seems that he feels we are not facing reality. He, just as he did the last hospitalization has pushed us to consider signing a DNR/DNI (Do not resusciate/Do not intubate) order for Isaac...an end of life directive.

He sees a patient with a severely damaged brain with no hope of progress. He sees a patient who can not move his body and needs help to clear his lungs of the virus that has overtaken it. He sees parents that are too emotionally connected and not able to see the "suffering" that he sees. He sees a patient who has no quality of life.

I just see my son. I see a little boy with a life worth living until God chooses to take him home. I see a little boy with a ministry that far surpasses my own. I see Jesus reflected in Isaac's eyes each time I listen to him sing to the old hymns he loves so much. He changes the world with his smile, his interaction and his sweet, sweet spirit. There may be a time when we need to consider end of life directives for our little boy..we are fully aware of that. But, this is not the time. He may be profoundly disabled..he may need 24 hour care from others. He may not be able to move his body. But, it is a privelege to care for him...and my eyes are opened to the truths of the gospel that I didn't see as clearly before he came into our lives. Isaac has so much that he enjoys..he grins ear to ear when he hears his parents voices. He has unique and special relationships with his brothers and sisters and those who love him. If quality of life is measured by the joy one feels in their heart, then Isaac has more than enough quality of life to share with the world..and he shares that joy freely.

Through Isaac, God has given us new lenses to see the world...a world in which all life is of value..no matter what. And we will not measure the value of life by external circumstances. It is God who gives and who takes away all things...and we will continue to place our trust in His timing. He knows and cares for our little boy better than we ever could...because he is His son. Sweet Isaac is of infinite worth...and we are so blessed to belong to him...

The gift of a new chance at life...

2012-01-31T20:57:00.000-06:00

We met with the Transplant Doctor today to talk about Elijah and the results of his 6 month bone marrow biopsy. But, before we even ever made it out of the house I was reminded of the little miracles that we have experienced these past months. Elijah hopped out of bed this morning excited to go to the clinic. When I said Good morning and asked him how he was feeling, he told me. He told me how he was feeling...it sounds so simple. Something so simple has been so difficult if not impossible for my sweet son challenged with autism. Not only did he communicate how he was feeling, he also asked a question about our day. "What friend is taking me to the clinic? Mommy friend or Daddy friend?" I could not have been more proud to be called a friend and a Momma to this amazing little boy.

And the news regarding Elijah's progress was yet another source of joy. Elijah continues to have 100% donor cells in his bone marrow. He most likely has RSV but his new immune system has been able to handle the assault of this potentially difficult virus. That gives me such hope that his transplant has worked! Most all of his blood work looked really good. His white blood cell count is still low as well as his platelets and hemoglobin with no clear reason why. But, we are choosing to reflect on the all that is going well for Elijah...truly he has been given a new chance at life! With 6 months having gone by, I can dare again to dream of the future we will have with Elijah..we are so blessed.

I didn't often dream of what Elijah would be like as a teenager or an adult. I guess it was fear that held me back from imagining the future...Elijah has grown so much these last months in ways we never expected. The relationship that we share has grown deeper and brighter...he has opened up and shared his fears, his joys and his wonderful, amazing sense of humor. While before I could only speculate what Elijah was thinking and feeling, now I know.

Elijah has been given a new chance at life...and we have been given a window into the heart and soul of our son...

Life will never be the same..each of us have been changed by the love God has poured out upon us...we have been touched by the miracle God chose to perform in Elijah's body and mind...and we are truly blessed..

Wow...what a ride we have been on

2012-01-28T20:20:00.000-06:00

What a ride it has been just since our last hospitalizations...By midweek last week, we had 5 kids home sick with coughs. By Wednesday evening, Isaac was admitted to the hospital with RSV. He is a sick little guy that's for sure. He just has little left to give when he gets sick...especially with something as awful as RSV. His lungs were not moving air and it was taking 4 liters of oxygen to keep his sats up. We debated about calling an ambulance but in the end we decided that I would take Elijah's nurse with me in the car to Mpls Children's. Once we arrived, they quickly determined he had RSV and we were admitted.

We are weary and it is showing. It was just three days in the hospital but it felt like a month. The three short hospitalizations we have had already in 2012 have taken a toll on all of us. Since transplant 6 months ago, we have been running full throttle making sure that all the needs of our children are taken care of. At times, I have wished for a pause button on our life so that we could take care of the overwhelming medical issues without all the rest of life running us over. But, despite our weariness, we have a sense of overwhelming thankfulness that our kids are ours...and that we have been blessed to belong to them.

We decided that we could provide the same care at home for Isaac as he was getting in the hospital and so he came home last evening. He is still very sick but we are grateful to have some nursing care at home as well as a new vest system that helps us to "shake" the junk out of his lungs so that he can clear them more effectively.

The other kids have been so understanding of the time I have spent away from them during the last six months, but it's all getting old and they need their parents home. I felt like I needed to get home because Elijah is also sick with a low grade fever..and RSV is very contagious. If Elijah has RSV, it could be very dangerous for him...and he very well could be in the beginning stages of it. I wanted to get home before I may have to leave again.

When it rains it pours...that is so true. We are in the midst of the storm. But God's provision and compassion has also poured out upon us. And each time I feel like we can not hang on much longer at this crazy pace that we are keeping right now, I am flooded with reminders that God is in control..that He knows every detail of what we are going through right now and he holds our fragile children in His hands...He holds each of us there...and I so need to envision his strong, tender hand holding my fragile self up right now.

We are weary, but not without hope. And in that hope, we will continue on...

He's Home!

2012-01-15T14:37:00.001-06:00

We are home! The doctors agreed to let us administer the IV antibiotics at home and come into the clinic for labs and so we were discharged! Elijah was very excited to come home again. The sepsis responded very well to the IV antibiotics he was given. It was so good to have him treated with a few hours of the fever developing. I still can't believe he had a 104.9 temp and he was sitting up and playing his ipad and watching TV. I wish I could get in his head and find out what he is really feeling...there are so many mysteries with Elijah.

He handled this hospitalization so well...each time I get to spend such concentrated time with him, I get overwhelmed with the intensity of love I have for him. He is fragile...in so many ways and yet he doesn't know it. When ever I get a glimpse of his sensitive side, I am so touched. Glimpses like this are rare..and I often forget that even though he can't communicate his emotional side very well, that underneath it all..he is a very sensitive and affectionate little guy. He may not readily be able to handle physical touch, but he longs to make a connection with his family and friends. Every act of love and kindness shown to him (whether he responds back or not) are stored within the heart of this little boy. He wants to please. He wants to be loved. He has dreams and preferences. He is no different than any one of us.

I was taken aback by the progress he has made in his communication even since his last hospitalization. He was much better able to tell us how he was feeling and to ask for what he needed this time. He never ceases to amaze me. He touches so many people..he is pretty unforgettable. And each time someone takes the time to talk with Elijah who so easily could be ignored, it melts my heart..and again, I am overwhelmed with the love shown to him. It eases the fear I sometimes have that the world can be so harsh to those who have a disability.

Sepsis is such a serious condition, especially post transplant. I consider it nothing less than a miracle to see how well Elijah came through it. God continues to give us such precious gifts...more time with our special son...now that is a prayer answered yet again.

Thanks for your prayers!!!!

Elijah update: Day 168

2012-01-13T14:24:00.001-06:00

Elijah is doing very well. He seems to be feeling good and he has had NO fevers for 24 hours. He has been on the IV antiobitics for 3 days now. Typically with sepsis, kids remain hospitalized for a couple of weeks, but I am hopeful that once he is stable and they are confident nothing new will grow from the cultures, that we may be able to continue the IV antibiotics at home...It will be a lot of work as he has them 8 times a day right now (vancomycin and ceftazadine every 4 hours alternating), but there is nothing like home after a hospitalization. So, my thoughts are that maybe we could get out by the beginning of next week.

Tomorrow, I have a 6 hour seminar to attend on using the iPad for kids with deafblindness. I have been looking SO forward to seeing all that we can do with our kids with special learning needs using the ipad, that I don't want to miss this class. I think we have things arranged so someone will be here with Elijah and Mark can be home with the others so I can attend. I can't wait.

I have developed a cold...and poor Elijah is now stuck in a hospital room with me! So, I will be masking up so that he doesn't get a virus on the top of sepsis! I have a rotten headache from all the congestion, and am feel very worn out. This is the first time I have been sick in the 6 months that Elijah has been immune deficient..and I am so thankful for that. I can even imagine what it was like for him to have a 104.9 temp...he must have been so achy and miserable.. He is such a trooper!

Elijah has been smiley and naughty this morning...such a good sign that he is feeling better! We are so thankful!

Elijah Update: Sepsis

2012-01-12T13:58:00.001-06:00

Elijah continued to have a high fever overnight but this morning his fever has been around 99-100 degrees. They sent blood cultures from both lines of his hickman central line yesterday and bacteria grew from both lines. He has sepsis and they are treating him with strong IV antibiotics. It will be a waiting game as they allow the cultures to grow and tailor his treatment based on what they find. They are hoping not to have to pull his line because he still needs it. Most kids wouldn't need a line by now but his counts have not been where they should be. We would most likely need to have them replace the line. This gets tricky because Elijah has had so many lines that there are very few sites on his body available to place a new line in.

He remains in good spirits and frankly, you wouldn't know that he was so sick. He did tell me that he feels better than yesterday. His head and his hands feel better, he says. I am sure he was incredibly achy and had a headache when his fever was so high. Yesterday, he told the doctors he was feeling great. I wish he could be more accurate with telling us how he feels at the time he feels it. But, It is amazing to watch him be able to tell me how he is feeling..if he is scared or hurting. This is incredible progress and it makes me so proud of him. He has come a long way!

It has been so nice to see old friends from the bmt unit. Everyone remembers him and he has felt more comfortable seeing so many familiar faces. It was a flawless transition to resume his cares from home to the hospital. Elijah is a complicated kid on lots of meds...to have a smooth transition of care is saying alot!

So, now we are in another waiting game. We wait each day to see what grows in the cultures. He will be here until there is no bacteria showing in his line or bloodstream. I am so thankful that he got to the hospital when he did. Sepsis is a serious complication for post transplant patients and treatment needs to begin asap. Last night they were hopeful that this was just a virus. It's definitely not a virus.

God has allowed us to feel His presence so strongly throughout this whole journey and He has given us a special amount of grace and peace throught this new challenge before us now. We are fully relying on Him. We are confident that He is in control of all things...and we will continue to look to Him as Elijah's body fights this infection.

Elijah readmitted

2012-01-11T20:52:00.000-06:00

At noon, Elijah was happy and playing normally. One hour later, he began spiking a temp and wanted to rest. Nothing normal about that for him. By the time we made it to the hospital, his temp was 104.5. he was readmitted to the bmt unit. his temp is still 104.9 with Tylenol. They have taken blood cultures, started him on antibiotics, and are consulting with Immunology tomorrow. He was just in the clinic yesterday and things seemed stable. He looked at me about an hour ago and burst into tears. This is only the second or third time I have seen tears during the past 7 months...unless you count mine..He is an amazing little boy..so gentle and sweet. It is so hard to watch him struggle and so easy to love this little boy. He has many friends on the unit and they have been glad to visit with him.I am praying for a restful night fOr Elijah..he needs to gain his strength back. Please pray for him tonight if you could.

Isaac's Emergency Room Visit...

2012-01-11T11:29:00.002-06:00

Isaac enjoying a Minnesota Wild game last month!

It's all in the timing. Raising medically complex children (or any complex children...come to think of it, raising any children) involves learning when to do what needs to be done. As time goes by, some parents get into a rhythm...they learn to trust their God given instincts and they know when the right time is to say no and to say yes. Some parents struggle with getting the whole timing of parenting down. Some parents getter better at it with each challenge they encounter...

Case in point..when to head to the emergency room. Assessing when it's time to head to the Emergency Room for a medically complex child is always a fine art. Too soon and it just exposes the child to a whole new set of germs. And too late is just not what I want to think about...Let's just say, I rather err on the side of too early.

And so, Isaac and I spent 16 hours in the ER. We were actually admitted to the hospital but there was no room in the inn (or any inn in the city.) Not the best night to find ourselves in need of medical care with no reservation. But, Isaac was vomiting up dark, old blood. He had had some drainage like this from his g-tube in the past, but this was different. Not only was it draining, but he was profusely vomiting this stuff up. We had already received orders from the doctor to bring him to the Emergency Room if there was more than 100ml's or if it was bright red drainage. He clearly was within those parameters. I like parameters...I don't need to do much deciding as to the next step... And so at 8pm in the evening, Isaac and I headed to the ER.

It was packed in the ER....really packed. In the midst of Isaac retching and vomiting up blood, he was smiley and happy. His smile and laugh did not put him into priority status by any means. Usually, when we arrive in the ER, we get triaged right back to the unit...but this was not happening tonight. We sat in a waiting that look like a United Nations convention of sick toddlers. RSV has hit the Twin Cities with a vengeance and the infants with awful coughs were right sitting alongside of us. It was germ central but I had a little baby coughing up blood from who knows where...and so I didn't question my judgment to bring him in..yet..

During triage, the nurse (albeit very pregnant and working triage on the one of the busiest nights in the ER) tells me that I need to get on the scale first..they would weigh me and then I would hold Isaac and get his weight that way. What?!!! We were at Minneapolis Children's..the largest children's hospital in Minnesota. Proud of myself for my assertiveness, I said no. He had just been weighed that day by a nurse and he gets weighed weekly. I had a detailed record of his weight with me. She gave me the answer that everyone gets..."We need to take use our own scale. We need it to be accurate." Like weighing me first and then me holding the barfing child is going to more accurate! So, when I refused, she finds another nurse and says in front of other patients, "She won't get on the scale, can you do it?" This situation was becoming even more embarrassing..and so I got on the scale. What a way to start out a crazy ER visit!

So, once we made it back, we were able to see a friendly and helpful ER doctor who decided to admit him. But there were no rooms at the hospital or for that matter, any children's hospital around. So, we were staying in the ER. Several patients were being transferred over to St. Paul Children's and staying in the ER sounded better than a transferring adventure at that point. After an xray, IV insertion, and some blood work drawn, we were settling in for the night. There are no pillows in the ER, no "comfy" sleeping chairs, no way to leave your child if you need to walk around the halls to take a break. We were boarders in the ER. Thankfully, my sister came to help out.

By the morning, with no sleep and a child that had stopped retching and there was no sign of blood, I began to wonder if we should have waited to bring him in. Don't get me wrong, I was thankful to be thinking this...it's always better to have a not so sick kid in the ER, than a really sick one. But, it just seems that coughing up blood is never a good thing...

Once, Aaron was shooting spinal fluid out of the back of his head. Now, wouldn't anyone agree that that is an emergency? It seemed like it to me and I would think any other mother out there. Not, to the neurosurgeon who was out of town. His response to my frantic phone call was..."as long as it isn't more than 8 ounces of fluid shooting out, you don't need to bring him in..." In my world, no amount of spinal fluid shooting out of my child's head is acceptable and so I took him in anyway..to a different facility. And he was okay...but I needed someone to take my concerns seriously, do a CT and glue his head shut for me..thank you Minneapolis Children's!

Our experience in the ER was a positive one overall...the doctors were outstanding and the nurses were great. We certainly understood that they were doing all that they could about not having a bed for us in the hospital. Finally, one of the gastroenterologists came in to discuss what we were going to do. He apparently was having a bad day. He asked me, "I understand he was vomiting dark blood but, why did you bring him in?" and then "Were you expecting us to do an endoscopy by coming to the ER with him?" No...I was expecting you to help figure out why he is vomiting up blood. I didn't come in with an agenda. I wasn't using the ER as a way to avoid scheduling an endoscopy. My son was bleeding internally. It seems like a good time to go to the ER.

After an initially tense discussion with the gastro doctor, he stopped reacting and started listening. He explained to me that it is not uncommon for kids like Isaac to have this kind of bleeding. Isaac can not tolerate anything in his stomach..his feedings and medications are all given into his jejunum. Kids who have retching like he does can develop irritations in their stomach, develop internal granulomas, or have irritations along their throat as well. Isaac had very strong hiccups that preceded the bleeding. The hiccups or the retching could have broken lose a sensitive spot in his tract. He recommended an outpatient endoscopy.

That is all I needed. I just needed an explanation of what was most likely happening. I needed to hear that. I may be familiar with medically fragile children and the issues they have...but I am not, nor ever claimed to be, an expert in any field...except my child. I am a mom. And when my child is sick, I just need someone to listen, to share my concern and to help me understand what is going on. I need to know what I should do if there is a next time. And I need someone to recognize that my concerns deserve to be heard and respected...because my child is worth the time it takes to listen.

So, we are back home and Isaac is doing fine now. It was scary, but he is doing well now. An experience like this reminds me of how fragile Isaac is...and how precious he is to us. We are so thankful. There are a lot of children sick right now..and a lot of dedicated hospital staff that are working tirelessly to care for them. They could all use our prayers...

Seeing Mountains...when there are barely molehills

2012-01-06T23:01:00.000-06:00

My last post reminded me of what happens when I take my eyes off of the One who is in control of everything. When I am faced with the big stuff...God's presence seems so evident..when the odds seem insurmountable without His help, I find it so much easier to keep my eyes on Him.

It's the little, every day stuff...the frustrations, dealing with the "system", human error and opinion...all these things can so quickly make me stress out...how quickly I forget that God is in control of ALL things...not just the big things...but ALL things.

Oh, how I want to remember that God is in all things...How I want to live in His presence when speaking with the medical appointment scheduler, the social worker who may have very different set of priorities in life than I do, or when I life just doesn't seem fair. How I want to pray without ceasing......not just in the great times or the big struggles...but in the midst of the little stuff that I so quickly allow to steal my joy...

Sometimes, I can create mountains out of issues that are barely molehills...more like pebbles on the path. Sometimes, I need to look deep within myself and ask what is really going on that has brought me to this point of frustration...and usually it doesn't take long to see that I've looked away...and all I want to do is keep my eyes on Him...because He is in control of ALL things..big and small.

Support that doesn't always feel like it...

2012-01-06T11:59:00.002-06:00

Some days, I just want to go back to bed and put my head under the covers..and most of the time, dealing with the professionals who are suppose to be helping us are involved. A new social worker should not cause one to feel like they want to give up..but it seems that my first reaction to these changes is just that...a new diagnosis for me...overwhelm induced coma syndrome...

January 1st is the beginning of a new budget year. We have two adult children who have an annual budget that helps us to care for them. Out of the funds, we pay for staff to assist them, medical supplies not covered by insurance, and other services that make it possible for them to live at home. The money doesn't come to us...it is managed by a fiscal agent. We must write a budget every year and get it approved by our County. The alternative for them would be a group home placement..and that would cost WAY more than what their in home support budgets cost. We choose the CDCS (Consumer Directed Community Supports) option which allows us to use the money flexibly so that we can purchase services that are tailored to the unique needs of our children.

There are some of you who have no services and wish that you had the problems I am going to tell you about. I get that. I wish that everyone had funding options available to care for their disabled children. I know that so many people do not have any supports and I am amazed by your resourcefulness, creativity, and commitment to caring for your child without help.

The County social services programs have changed over the years. In the beginning, there was much scepticism regarding the concept of allowing parents to decide what their children needed. Then it seems that people started to "get" it...by recognizing that parents know their children best, it only makes sense to allow them to decide what support would benefit a child. We have had WONDERFUL social workers over the years...they have fully embraced the concept of family centered care and recognized that supporting families supports kids, Our social workers, both in Anoka and Sherburne Counties, have been instrumental in the success of our kids...and they have empowered us to continue advocating even when we faced giants telling us we wouldn't win.

But, now the tide seems to be turning again...I am feeling like the bad guy...like my every advocacy move is met with criticism and scepticism. I don't think it is just our situation, but I am feeling like the climate has shifted and the "system" is beginning to be afraid of giving parents too much control.

Maybe I am judging things wrong...maybe it is because we have so much exposure on our Counties' radar. With so many children with needs...mental health needs, medical needs, developmental needs, maybe their bristle every time they hear our name. Is it just that we have so many children? so many children with needs? Is it because we fight for supports that are being taken away? Maybe the amazing social workers and professionals that we have encountered over the years have raised the bar for us. They have taught us well in the way that they encouraged us to be creative in the ways that we care for our children...our service plans are as unique as our children. That's how it should be..

And then there is "public opinion." I think I am over that by now but there are times when I am met with the judgement of others who are not raising children with special needs. We have adopted children with disabilities and sometimes that means that our County will pay for 4 hours a week of housecleaning...not because we have a lot of children, not because we deserve it, but because it helps us to keep our children who have immune deficiencies and severe allergies healthy...

There are a few times when I meet someone who reacts with anger towards the services we receive..they see PCA's as free babysitters and homemakers services as wasteful..and to them, I remind them that there are over 500 children in Minnesota alone..many with special needs who are waiting to be adopted and you too, can receive "free babysitting and housecleaning" if you adopt one of them! That usually quiets the jealousy monster in them...

So, as I come to the end of this post, I don't feel like climbing back in bed..I have reminded myself that I am thankful for the services that we do have and that I am not going to stop fighting for what my kids need...even if I am perceived as the "bad guy" by some. Thanks for letting me sort things out in this post...and get my perspective back! My kids who struggle with disabilities struggle with being overwhelmed and frustrated every day...I will remind myself that the frustration I feel is nothing compared to the struggles they face...I have so much to learn from my kids...

"Special Needs" Adoption

2012-01-04T22:48:00.000-06:00

Special needs adoption..it's what we do..it's who we are..and our life's calling... yet I wonder what that term really means. In the beginning, "special needs" meant some serious disabling conditions. Aaron was our first adoption...and with his laundry list of conditions preceding him, it was clear that we were entering the world of special needs adoption. When I heard other people speaking of "special needs" when the child they had adopted could walk, talk, and had a normal IQ, I didn't quite know what to think. And sometimes, I resented it...

Getting out the door with a child who doesn't walk is an event in itself. Never having the chance to hear your child's voice, to listen to their hopes and dreams is heart wrenching. And unless you have experienced this first hand, you most likely don't realize all that goes into everyday activities. And then add medical issues, medications, gtube feedings, and life seems nothing like what it once was. Not only the physical toll but the emotional aspects can overwhelm even the parent who "knew what they were getting into." And sometimes, when you are caring for a profoundly disabled child, you can begin to feel like you have the market on grief and struggle..that somehow, no one elses pain is quite like your own.

The next adoption we entered into was very different... a bright light of sunshine with an intense personality came into our lives..and in comparison to Aaron and McKenna's intense needs, she seemed pretty easy. As she grew, her FASD challenged us beyond anything that we had imagined. And while her struggles introduced us to a whole new world of "hidden disability...we did not fully realize how similar all disability was.

Now, years later, I have changed what my perception is of a "special needs" adoption. I think any child who is need of a home has special needs...especially those who have entered the world of adoption through the foster care system. They each experience loss at some level and each of our children have been affected by physical, mental and emotional disabilities... It has been a humbling experience..one of realization and soul searching...my stubborn arrogance took up space in my heart that should have been filled with compassion for those raising children with "hidden" disabilities..

It's tough to raise a child with a profound disability. It's feels impossible at times. But, I have learned, the emotional aspects of raising a child with a hidden disability...FASD and its cousins...the loneliness, grief, isolation and struggle that a parent goes through is just as tough..and often times, it is filled with even greater struggles. The emotional and spiritual drain and isolation takes a toll on parents. And, just as our kids who have disabilities are more "alike" than "different" than their peers..so too it is with us parents who are raising children with special needs. Coming together and supporting and loving each other regardless of the disability strengthens all of us. Division and separation does not serve anyone well....

One by one each of our children have taught us so much about life..about unconditional love and about the hidden blessings in disability. I have learned so much about suffering and servitude, I have learned so much about humility and faith. I would not want life any other way...It is my honor to serve my kids as they face the challenges they have been given.

So, I no longer waste time measuring the sacrifice, the suffering of others compared to mine. I just want to give fully to the kids I have been given and support others who have found themselves in the world of special needs adoption..whether they knew they were entering it when they began this journey or not. ...Instead, I want to count the blessings, measure the gifts of grace and give thanks for the amazing friends I have been given on this journey...

...friends who accept and pray for each one of us in our family, are slow to judge, quick to forgive and share the joys in this journey. The friends I have been given cry with me, celebrate with me and laugh with me as we muddle through this life we have been given...as we seek to not waste a minute of it. I am pretty sure I have the most amazing bunch of friends a person could have...and it was our children that helped us find each other along the way...

2012: All Things are His...

2012-01-02T09:13:00.003-06:00

Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect.
Romans 12:2

That is my prayer for 2012. I want to be transformed, renewed...as I seek a deeper and soul searching relationship with Christ. I want to look at ways..old habits that don't bring glory to God..that keep me stuck in moments of discouragement, doubt and negativism...I want to see all things new...and allow God to continue the process of transformation he has begun in me.

I have been given such a gift this past year....an even greater understanding that it is within our minds that we find contentment, peace and renewal. It is not in our circumstances....but within our souls, that we are given glimpses of the depth of contentment and joy that we experience only through a choice we make to listen to Him...live in His light...and to feel His amazing love for us. And it is then, when we feel His love for us, that compassion can pour from us...because he first loved us.

This year, I want compassion to flow from me...I want to be slow to judge...I want to look up and not "around"...focusing on what God wants ME to do...within my own home, my own community, and the world. I want to stop comparing myself to others and the ministries they have...how sad that must be for God to watch...watching his child wanting what others have been given instead of using the precious gifts he has given them. What a waste.

I don't want to waste what God has so graciously given me...not time, not talent, not the vision he has given me to see Him in new ways each day. None of it is mine..not my time, my talents..none of it..It's His.

And that is what I want for this year....to see All Things as His. I have no doubt that if I focus on this one truth...that All things are His....my year will be transformed...my mind will be transformed. And that is my prayer for 2012.

Lessons in generosity and humility...2011

2011-12-30T12:47:00.000-06:00

We have felt generosity in action this year in ways that has overwhelmed us...inspired us and humbled us...

This Christmas, we sat down to a dinner fit for a king made and donated by people that we had never met...it was a wonderful gift that stretched well beyond the sharing of a meal...we felt taken care of, and loved. It was Christmas filled with such praise and a sobering awareness of the gifts of life that each of us possesses...

This month, we have watched as kind and compassionate people have donated over $1000 for the orphans that Tyler works with in Kenya! Hearing Tyler's voice as he heard the outstretched hand of concern for the kids and feeling the responsibility upon him as he struggles to know how to use the money carefully and wisely as he takes care of the greatest of needs of children who need so much...Even though Tyler was not home at Christmas, he has been touched by the warmth of home through the willingness of others to look beyond their own walls and reach across the world to help others...

Our Bone marrow transplant journey began last January as we sat in Dr. Smith's office and discussed the options. The year 2011 can be summarized in three letters...B M T. The process has consumed our families day to day activities through out this whole year. And yet, three words summarize our year so much more....God's Provision, His Compassion, and the Lessons that he has taught us.

God has provided all that we have needed this year. And he used the generosity of His people to show care and concern for us. So many people have shared their time, talents, finances and friendship with us. They have reached out and so graciously given to our family. We have never experienced such generosity before..and it has taught us so much. The compassion that has been poured out on our whole family has given us a renewed understanding of God's provision for us. We spent little time worrying about the needs of our family...our faith has grown in immeasurable ways.

This year has expanded our hearts and our minds in so many ways. We have learned more and grown more than I ever could have imagined. Our kids have experienced the gospel lived out...as they watched God take care of every need. They learned lessons firsthand about generosity, about humility and about love...as they watched God's people reach out in love. They have learned what is really important in life...they have learned that without Jesus, nothing else really matters. And they have learned that God's promises are true...He is faithful, He is trustworthy and He is kind...and all things work together for good. We have all been reminded that God will do what is best for us...no matter what the outcome...that even when things are hard, God is still in control...and that it is all for His glory.

This year has been filled with lessons in humility...acknowledging that we could not do anything to save the life of our son...that God was in control of all things and that we did not make it through this year because of our strength or might..but that it was in our weakness that we have clung to the only one who could see us through all that came our way...Jesus Christ. We were faced with our weakness and our inability to do things alone..as so many of you stood alongside of us and helped us get through the struggles of this year...humbling...

..but such a tangible lesson for each one of us. We can do nothing of our own might..as strong as we may think we are...not even our next breath can be taken without God allowing it. It is such precious irony that it is in our weakness, that we are strong. That is how God works. When we cling to him, than there is nothing we can not do.

This year has been a year of miracles. It has been a year of blessings that have overflowed all over us...this year was one of our toughest years yet...and I would have to say we learned more than we ever have as a family and as followers of Christ. We have been given a lifetime of lessons lived out right before us...I wouldn't want to change a thing about this year. ..It has been a gift..an absolutely humbling gift. As we say goodbye to 2011, we are filled with hearts overflowing with gratitude and love. My heart is satisfied...and it is filled with confidence that nothing can separate us from the love of Jesus Christ...nothing...

For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.Romans 8:38-39

Best Christmas Ever...

2011-12-29T14:34:00.001-06:00

Dad's garage sale santa suit always makes for a few good pictures..no one is fooled by who is behind that beard..they can't wait to sit on Daddy's lap!

My best Christmas ever...

We were all able to attend Church together on Christmas Eve. We decided to give it a try with Elijah and a mask. He does seem to have a cold now..but a managable one. It was a wonderful time all together..celebrating the birth of Jesus sorrounded by our church family....

We had a great Christmas filled with lots of relaxation and fun. It was peaceful. There was a sense of the ultimate gratefulness that Elijah was right alongside of us...enjoying opening presents and listening to the Christmas story..

The gift of our struggles this year just keeps on blessing us...the depth of our joy..the gift of vision that allows us to see things that were not visible to us before...we have been blessed in ways we didn't even know could be. And it wasn't about the gifts, the food, the "stuff"...it was all about the baby in the manger who was born on this day...

This was the best Christmas ever....

So blessed...

2011-12-23T19:14:00.003-06:00

So blessed...we are so blessed. In rough times, in our good times..we have never been asked to handle any of life on our own. We just been asked to follow the one who was born in a manger..the one who was sent to save the world..the one who has given us so much to be thankful for...

May each of you be sorrounded by God's grace, comforted by God's tender touch and overtaken by the wonder of the miracle that took place 2000 years ago...

Merry Christmas..

Christmas..

2011-12-22T09:08:00.000-06:00

Our Christmas this year is infused with contentment and gratitude, but I still find myself feeling sad. It comes in waves as little things remind me of things we are missing... Sad that Tyler won't be home...Sad that Evan will never be home...Sad at how close we have come to losing Elijah...sad that we aren't farther in his recovery...Sad that we haven't been able to go to Church together in 6 months...

I don't want to lose the joy of Christmas really means. I don't want to get lost in details...I know we all carry with us the ghosts of Christmas past...and some of us may carry the burden what Christmas futures will hold...my prayer is that we can all live in the Christmas present...

Christmas is one of those times when the bar we create for ourselves is often too high...our expectations are not realistic...perhaps unattainable.It isn't always about having family all together and recreating the feelings we had during a Christmas season long ago...Christmas is about today with the people who are with us this year...our Christmas this year means just our immediate family home as Elijah still must avoid crowds...and I want to be there fully embracing what we do have, what we have gained this year as a family and what God has done for us this year...I don't want to get lost in the thoughts of what we don't have this year and what we "should" be...

..Christmas is about any amazing miracuous event that has changed the world...Christmas is about Jesus and his birth and that is anything but disappointing...

I think it is time to go drive-by-caroling!

Pics of Kibera--slums of Nairobi

2011-12-20T19:30:00.000-06:00

Tyler sent some pictures of Kibera..the slums where he is working. Some of the children that attend a school there are pictured. The roof and walls need to be replaced here...ANYTHING you can give will go directly to provide basic care for these kids!

Tyler and the kids...

2011-12-16T20:01:00.001-06:00

Tyler and the widows on the Island of Mfangano...

The slums in Kenya where Tyler is spending time with the orphans that live there...

When he was home in August...

There is something so special about this Christmas..There is no having to spend time reminding our selves what Christmas is all about. No getting lost in the details that have nothing to do with what Christmas is all about.

On an ordinary day, in an ordinary place, in an ordinary way...the not so ordinary happened...our Savior was born. How can we comprehend fully what happened on that day?! How can we best celebrate something so profound and eternally significant? Everything seems so ordinary...

This year, we have lived on the edge of life and death along with Elijah...we have contemplated what it means to live for our Savior who was born in a stable so long ago...

This year, Tyler is spending his Christmas in the slums of Nairobi. He is spending his Christmas with the kids who are orphaned in the slums...so many of them with disabilities....all of them are facing challenges that we can only imagine.

We have spend this year helping Elijah to fight for his life. Yet, children around the world are dieing everyday...not because they have a rare, life threatening disease..but because they had no food, no shelter, no vaccine for malaria...a preventable disease. Kids are suffering with no family by their side and facing death because of preventable causes.

Today, we sent money to cover malaria shots for all of the kids at the school on the island. $40 covered all of those vaccines for 60+ kids. The next check will go to pay for Christmas dinner for them (including a bottle of soda for each of the kids...a very special treat.) We can touch kids around the world with the love of the gospel while not even feeling a much of a pinch...a reflection on life here in the United States...and it is our desire that our family give sacrificially beyond just skimming from the top of our excess...we have been given so much..we own nothing...it is all God's and holding tight to something that is not ours to begin with reflects our hearts more than it does our financial status.

We have so much here..even though this year has been a rough one for us, our struggles are nothing compared to what the children around the world living in poverty are dealing with each day. Nothing.

So, next, we are working on collecting money to care for some of the orphans living and attending a school in the slums that Tyler has connected with through one of his professors at Daystar University. He was planning on going to Rwanda to visit a friend but instead he has decided to use the money it would have cost to travel and use it for the kids. Many of the children have down syndrome, cerebral palsy and other disabilities. The shelter they are living in is falling down around us. They have little clean water and the conditions they live in are horrific. The shelter needs to be replaced. The needs are so great, Tyler is having a hard time knowing where to begin...but we are going to help him serve by beginning with the basics...

So, our kids are working to collect money to start meeting some of the basic needs. Food, shelter and medicine seem to be the immediate needs. Can you help? If you are able to share even a little bit, we promise 100% of your donation will go directly to these kids. They really need you. You can donate any amount thorugh paypal on the side of the blog. The message of the hope of the gospel will be shared one need met at a time...

Tyler has promised to share some pictures with us of the kids...coming soon.

Day +141:Lots of Questions

2011-12-14T19:38:00.002-06:00

Elijah is a mystery. He always has been. And he continues to be...but nothing is a mystery to God and we are relying on that truth. Elijah is 141 days post transplant. His donor studies show that his new donor marrow is working...all the cells lines that are expected to be growing are found within his marrow. The cells are seen in their infancy...which is to be expected. But, they aren't making it to maturity. Something is stopping the cells from developing into mature cells. Something within Elijah's body is attacking his new cells.

Elijah's numbers (white blood cell counts, hemoglobin, platelets) have never been strong. But, there has always been a possible explanation. We are running out of explanations now. First, it was the adenovirus. It became clear that Elijah was much more sick than he appeared on the outside during his months with this infection. But, he has been free of adenovirus for several weeks now. Sometimes the medications that kids are on post transplant can interfere with cell growth. But, even that possible explanation is not holding up with Elijah.

And so we are left with little understanding of why. It is not like the transplant did not "take." A boost of cells or a repeat transplant would not solve the problem here. The cells are being manufactured in his body, they just aren't surviving like they should. His system is still very weak.

But, he looks so good. He is robust. His hair is back. His sense of humor and sweet personality touch are hearts with even more depth of emotion. Even though his system is still so weak, he has stayed healthy and infection free. That is amazing. Elijah has always looked so good..even when we know that he is not. The doctors are perplexed. They wish they had answers to explain what is going on.

And so we hold tight to the promises that we hold so dear. God knows. Nothing is a mystery to Him. He will reveal to us exactly what he wants us to know. We have entered this Christmas season with so many unknowns..to us. I have always just wanted the answers...either way, good or bad, just give it to me straight. And then I will deal with it..That is the way I want to run my life...instead of leaving it in God's hands. But, God is graciously and so patiently teaching me that His ways are so much better. I want to have control of this situation even if it is just in the knowing what will happen. This Christmas, I will lay my burdens down...all of my burdens including my uncertainties and fears.

I have felt the touch His healing hands so many times in my life. Our tender, loving God has held Elijah securely through more than most of us could imagine. I have every reason to believe that He will never leave us or forsake us...and we will rest in his promises and we wait for his answers...

Lessons learned from a look into life...

2011-12-11T20:38:00.001-06:00

Maisy dances to her own music..but her enthusiasm is contagious..

Isaac is enjoying having the whole family back together.

A little Karaoke and some dance moves..what a fun day!

Maisy loves princesses!!

Karoake at a Chrismtas party was so much fun!

Elijah is chunky and hairy because of the meds and TPN feedings he is on. He looks so good...and he is so happy to be home...

We don't often have the chance to take a look from the outside into our own lives...we don't get a chance to peer in and see our life from a new perspective. Elijah's bone marrow transplant has given me this extraordinary chance.... Since the moment Elijah and I walked back into the front door of our lives, life has been beyond busy...Catching up with a life that is filled with children (with disabilities and such...) is potentially an overwhelming and joy dampening experience.

I am so busy. The paperwork threatens to drown me..The meetings and appointments that need to be made is mind boggling. The stabilizing that needs to be done to reestablish the rules and routines that we value has begun. The reorganizing of the whole house to get it back into smooth running order has taken away any spare moment we have had.

And then there is just the daily care of each of our children. Wow. I needed to step out of my life to see how much work it is to be us. Our kids need 24 hour care. Just because we need a nap in the middle of the day does not mean we are lazy or old. We have earned our wrinkles, our waistlines and the bags under our eyes. Elijah is doing well. Isaac has had a really rough few weeks and with every 2 hour nebs, little sleep has been had by all.

And the holidays are approaching. I ambitiously (crazy, I know now!) had Christmas cards printed up. Since I have not yet sent out most of the thank you cards from Kenna and Aaron's graduation party, I don't know what I was thinking. And then there are all of you who supported us with your prayers, your meals, your gifts of gas cards and so many other ways that you have showed your support...the cards have not been sent to you either. We are more grateful than you know...but there is just no time left in our days to get out a thank you card at this time in our lives.

And amidst all of what is going on in our lives, I have a new, renewed perspective...I am so incredibly, happily tired. Our days start early and end late. Many days, we don't even make it into our pajamas before we fall asleep at night. I am lucky to get a shower in every few days.

We are beginning to settle in. Soon, settling in to our routines will allow us to take a break every now and then. But, until then, we will treasure every moment we have caring for the family God has given us. We have been given a glimpse into our own lives..and I don't ever want to lose this perspective. We are so very blessed.....I love this life...there is no better place to be than right where God wants us to be...where each moment is His and our hearts are filled with gratitude. I love this renewed perspective...

Silly faces and charades....more Thanksgiving fun

2011-11-27T10:34:00.001-06:00

Norman Rockwell never painted a scene like this...

...and I think he should have!

a game of pudgy bunnies...

charades, anyone?!

One word....love..

A stray cat that lives in our garage...she loves people..anyone interested in a giving her a home for the holidays?!

A big brother to look up to...

A miracle among us...

A family filled with differences joined together by similarities..all made in the image of God.

We are thankful for...Laughter

2011-11-26T17:01:00.001-06:00

Elijah and I have been home a week. We have been very busy! With unpacking our things, settling into new routines, getting accustomed to the care it takes to keep Elijah germ free and healthy, and helping the other kids adjust back to all of us under one roof, there has been little time to tell you all about it.

We are home and so very happy. I am tired. The med routine right now involves care every hour. All 24 of them. Elijah has smiled more in the past month then I have seen in a long, long time. He is so glad to be home and so am I. Our home is a healing home and I love living there...

Our Thanksgiving was all that Thanksgiving should be. Filled with thankful hearts, children and laughter. The 22 pound turkey was in the oven by 8 am. Then friends (who, between the three families have 21 kids themselves,) shared with us side dishes, desserts and lots of love. We could not have felt more blessed.

The kids made placemats for each other and shared what makes them thankful. As we shared the blessings we have been given this year, we found our hearts overwhelmed with praise. And then we shared a meal. Together. Just our family..Elijah can't be in crowds and we must minimize the risk of germs..so it was just us...minus two. Tyler and baby Evan had a placement at the table...filled with words of love for them. We talked to Tyler on the phone who had forgotten it was Thanksgiving...it isn't celebrated in Kenya. He called to see if we could help his friend who had been robbed. We talked about how much we missed him at the table. And then we talked about how long it has been since we have held our sweet baby Evan...we talked about how we are not made up of a body with a soul but instead with are souls who simply have a body. Evan's body is no longer with us..but his soul never dies. We talked of how thankful we were to have had him in our lives..and how we will see him again.

We marvelled at what God has done in our lives this past year. We talked of all the blessings we have received all throughout this year..even in the midst of struggle and uncertainty. We couldn't keep our eyes off of Elijah as he sat alongside of us...each of us aware of how incredibly amazing it is that he is here with us...There is nothing like a Thanksgiving when God has performed a miracle and the evidence of his healing is sitting right beside you. Each day is a day like no other for our family...

And then we laughed...and laughed. We somehow ended up with a surplus of whipped cream at our dinner. We decided we could eat our jello without it and would surprise the kids with some crazy fun. And there is nothing like a whipped cream fight outside on a gorgeous Thanksgiving day. It was warm and wonderful outside..and the whipped cream started flying..we had a wonderful time..and there was nothing like the laughter of the family to make us feel at home.

It was a wonderful day...it's so good to be home...and we are so thankful...so very thankful..

Elijah: 6 years old...

2011-11-21T22:48:00.001-06:00

Today, is a day that we were never sure would be one that was going to be celebrated here on earth. Elijah turned 6 years old today and it was wonderful..really wonderful. It wasn't flashy or filled with matching plates and cups. But, it was packed with such meaning for all of us. He had a long day at the clinic with appointments and transfusions. The staff at the clinic who we have had the privilege of getting to know well all signed a card and gave him gifts and a balloon. He was happy. It could have been a very stressful day for him...but the staff knew him and they kept it low key...no big loud exclamations, no bursting into song, no cheering and clapping no matter how badly they wanted to celebrate in the usual ways.

Elijah doesn't like clapping or cheering. He doesn't like high fives or hearing people say...yeah.. He doesn't like candles or blowing them out and he doesn't like singing...so as you can imagine, today could have been a very rough day for him. But it wasn't. It was his best birthday yet. He was excited to tell people that he was six. He was able to tell people that he liked presents. He was able to say no to a hug or a high five and have people respect his wishes. They got it..they "got" him...and they showed love to him in the way that he needs it to be shown.

After going to his favorite clinic building that he calls "River Park Pizza" which is really River park Plaza (but he read the last word wrong) and riding the elevator for a long time after his final appointment for the day, he headed home. We just moved back home on Saturday and it has been a whirlwind of activity since then. We moved out on a 90 degree day in July and arrived back home in the first big snowstorm of the year. A lot of adjustment has been happening around here. The kids are all adjusting to listening to two parents instead of one. The parents are adjusting to the new changes that have happened over the past months. And Elijah has transitioned really well...he is so happy to be home.

For his birthday, he directed the festivities. We sang in a whisper to him. He liked that. We lit one candle at a time on his elmo cupcakes and he chose someone else to blow them out. After repeating that 6 times, he was ready for presents. Everyone remained calmed and waited for him to handle his birthday in his own time. He ripped open the wrapping paper on the first gift...and proclaimed, "uh..oh, I broke the present." We all wanted to burst into laughter, but no one did..that would have scared him. He liked his presents and he could tell us which one was his favorite..these are rare and treasured moments.

Inside, we all wanted to cheer and clap..Elijah handled his birthday amazingly well. We all wanted to pick him up and hug him and shout and dance and sing. I just wanted to cry because of the depth of emotion I have experienced watching my sweet son face all that he has this past year...I don't think I have ever been so proud of someone.. This boy is amazing... and he has been given a gift that has changed my life forever...his ability to touch the hearts of so many through his sincerity, his courage and his joy in the midst of pain and fear. My tears would have been of pure joy..because if anyone deserved a celebration, it was Elijah..and even though it was not as we might imagine, it was his celebration just the way he wanted it to be.

Yesterday, when Elijah's feeding was complete and we were able to disconnect him from the tubes that are attached to him 18 hours a day, Mark said to him..."You are free as a bird.." Abstract thinking like this is usually a very difficult concept for kids with autism to grasp. And I am not sure what went through Elijah's mind, but he quickly started out with a smile that turned into bursts of laughter. And when he had a chance to talk, he said, "He has wings..." He was so right...he does have wings...

Elijah, you have been wings here on earth. This year has been all about flight for you...You have taken off and grown in so many ways. You are talking more, sharing your thoughts and feelings with us for the first time. You are climbing in our laps and snuggling and allowing us to hold you and hug you and show you how much we love you. It is clear that you have a sensitive spirit that wants to please and you have shown us how important it is to you to do the right thing. You have been given a fresh start in life... You have been given wings to fly and you have not allowed fear to stop you from spreading those wings and taking flight. It amazes me that in the midst of your physical struggles, that you have grown so much in so many other ways at the same time. God has big plans for you, my sweet and precious Elijah, and I am so honored to watch you live out this life that God has given you. Even though winter has arrived here, you are in the springtime of your life...and I am so thankful and so very, very proud of you. Happy 6th Birthday, my sweetheart...

In ALL circumstances...a renewed pespective.

2011-11-18T16:34:00.001-06:00

a photo taken by the hospital just a few weeks after transplant...

Of the many gifts I have received spending my days at the Bone Marrow transplant clinic, one of the most amazing one has been a spirit of thankfulness...Thankfulness that is not based on hollow and whimsical thoughts about how we are thankful for things that are of no consequence. The spirit of thankfulness that I have been given is profound and transforming. Being thankful in ALL circumstances ...that is the concept I needed to really learn...

Sitting at a clinic for hours most every day, I have observed a lot of things. Mondays and Fridays seem to be the most difficult days for families.. Families are tired..they are at the end of their ropes after a long week or weekend of caring for a sick child. Several times, I have stood awkwardly in the hallway as a parent yells at the staff and storms off vowing never to return tot he clinic because of an extremely long wait to see a provider. And yet, I know that the next day at clinic, that parent will be back...facing another day of necessary treatment alongside their child.

A few weeks ago, a mom, with her two small children stormed off the unit because something did not get done for her child that was should have been done. My thought for a moment was," that mom has issues"...it was clear that she didn't handle her frustration well at that moment. Then one week later on a cold and windy day, I was pulling into the Target parking lot. I saw that same Mom struggling to carry bags of groceries across the street to an apartment with her little boys by her side...
one of those little boys was just months post transplant..as evidenced by a bald head and a familiar blue mask to keep away the germs that could threaten his life.

How quick I was to judge. How silly I am to think that I have it rough going through this transplant process with my son. I have an incredible family, my needs are met, my son has been brought from the point of near death and given a new chance at life. I have transportation and a warm home and a faith community that loves, supports and accepts me and my family We have food and clothing and life. We have breath within our bodies and we have Jesus Christ. Above all, I have a God that takes care of all my needs. I have a God who has not given me suffering and trials because he does not care...I have a God who desires that I experience the full satisfaction in really understanding what it means to be thankful...in ALL circumstances.

This Thanksgiving will be like no other. I don't care what we eat. I don't care what we do. I just want our home to be permeated with thankfulness. Somewhere along the way, in our culture, we decided that pain was to be avoided at all costs (I guess that is just part of our original sin nature.) We work hard to shield ourselves from the elements...the rough times...from sacrifice...the pain. We started to live our lives as if God owed us a comfortable life free from difficulties. And when that doesn't happen, we often get angry and shake our fist at God...how could you do this to me, God?! We lose our way...

My life is filled with blessings that look like burdens to many. It is filled with opportunities that look like struggles. There is joy when it seems like there should be only sadness..and their is peace and contentment when fear seems like it would permeate...Yes, God uses our struggles and our pain to bless us in ways we could never have imagined before he opened our eyes to see it.

I am so thankful that my eyes have been opened to sights I did not even know existed. The world seems new to me...the world is illuminated by the light of Jesus Christ. It's so beautiful...and I can not help but praise God for all that I see! We are living each moment as we cling to Christ...and His stronghold on us is our comfort, our strength and our new vision...and I am so very grateful.

Give thanks in all circumstances; for this is the will of God in Christ Jesus for you. 1 Thes 5:18

dAY +112: Home?!

2011-11-18T09:00:00.001-06:00

Well, we were really trying to make the move home over the weekend. But, one of our nurses just tested positve for strep...and two of our kids get strep very easily. Isaac is one of them and he has been having trouble all week...just not himself. Initially, we thought it was due to a new medication. But, off to the clinic we go to test them for strep!

So, are plans are back up in the air. We have come to far to jeopardize Elijah's health..but this could be a long winter here at the apartment!

Elijah: Day +110 Bone Marrow Biopsy Results!

2011-11-16T07:52:00.001-06:00

Most of the studies from Elijah bone marrow biopsy results are back and things look good! Elijah has 100% donor cells in one of the lines of cells and 93% in the other line of cells. This is good. His new marrow is making all the types of blood cells that it should be...the cells are just very small and immature. There were not able to get a cellularity percentage because the sample contained some bone as well as marrow. But, considering little is left of Elijah's old marrow, the cellularity should be much better than before transplant.

So, what does all of this mean? Elijah is doing well after transplant...he took a long and windy road, but he is on the right road! He is still on TPN (IV) feedings because of his intolerance to handle his gtube feedings right now. He is still is very immune suppressed and in many ways has bloodwork results that look more like someone just weeks out of transplant versus months. His numbers aren't strong..but he had been fighting the adenovirus for so long that they haven't had a chance to grow..his body has been fighting the infections caused by the adenovirus.

The adenovirus is still detected but in small amounts. Elijah's hemoglobin was 7 after surgery which explains most all of his symptoms the past days (high heart rate, fatigue, being cold) and he was a bit dehydrated. With a transfusion and some extra fluids, he already is looking better. We meet with the ENT to discuss his ongoing sinus issues post transplant on Monday.

So, we are making plans to re-enter the home front! Lord willing, by next week, we should be able to be back home. We will keep the apartment until the end of November in case things do not go as expected. Going home will involve lots of driving back and forth to the clinic, and we will remain in "post transplant mode" for the next year...but we will be home!
He needs to be home..each morning he asked if we are going to go home..and I can't wait to answer "YES!" sometime soon.

Elijah will still need to wear a mask as much as possible. We will avoid public places and crowds whenever possible. Thanksgiving will be just our family this year. The house needs to be thoroughly cleaned and disinfected before we get there. We must take careful precautions to keep him healthy and infection free while his newborn immune system grows and gets ready to take over the job of infection control. We have lived in this world for a long time with Elijah because of his fragile immune status before transplant. So, there won't be huge changes for everyone. But, with a house full of people, it is going to be a continuous challenge to keep the environment germ free!

So, there are the details. The wonderful, amazing details. He is coming back home! I, again, have some initial fear about this new phase for us..fear that we will not be able to keep him from an infection. But, quickly, I am reminded of God's faithfulness along this journey and the fear is gone. God has given us the grace, the strength, the peace to have walked this path in ways I could never have imagined..why stop trusting Him now?! He has performed a miracle in Elijah's life...and I can not even begin to express all the gratitude that I feel. And so, I will do what I know how, and keep walking on this path...knowing that without a doubt, He has been, He is and He will be in control of all things!

God has provided us with all that we needed to get through this phase of Elijah's recovery..and we won't stop trusting him now....I can't wait to be home again.... We can't wait to be home all together again...the other children need it so much...They need to have their Momma home..they need to have their sweet brother home alongside of them..This story is not just Elijah's...it is a chapter in our family's story that has forever changed each one of us...strengthened us, challenged us...and filled us with thanksgiving...

...and what a thanksgiving we will have...home all together!

And so I sob...

2011-11-15T20:13:00.001-06:00

There are news stories that peak our curiosity...that educate us...that make us wonder..and there are news stories that impact us so deeply...unexpectedly and painfully. And I sit here sobbing, trying to pick up the pieces after reading the story about a 14 year old girl with a cognitive disability. She was bullied, ridiculed and belittled..not by other students..but by her special education teacher and her para.

The girl did not want to go to school..something she used to enjoy. The parents talked to staff and to the supervisors but they assured the father that nothing was happening. And still not convinced, he sent a concealed tape recorder. And for hours each day, the parents of this child had to listen to their daughter and the verbal abuse she was enduring all day long in school. And so I sob...

I sob for this beautiful, precious young girl. I sob for my own children. I know my kids with disabilities have endured more than I know. There are some things I know have happened over the years...a teacher who announced to a whole classroom of middle schoolers that our daughter was going to be moved to the special education class because she couldn't keep up. McKenna has been told to lose weight, wash her hair, and stop staring...all things that aren't in her control. A bus driver threatened to put hot sauce on her tongue when she was in 2nd grade..and it scared her so much we could barely get her to ride the bus that year. My other kids have been called liars, lazy and been accused of just trying to get attention when they have asked for help. Each time that we found out about the taunting, the hurtful comments, we addressed them immediately...but what about the times we do not know about...

I sob for the future of my kids...when we are no longer able to care for our children with disabilities, they most likely will live in a group home setting. How can I assure that they will be treated with dignity and grace, with compassion and kindness...it scares me to death to think of what might happen to them when I can no longer watch over them...

The vast majority of special ed staff we have worked with have been compassionate and caring people. They treat our children with respect and professionalism. But, the risk for abuse and neglect is so high...our kids are SO vulnerable. McKenna has an IQ in the 40's..who will believe her when it is a staff persons word against hers? Even she would doubt herself if questioned over and over...

I could easily get paralyzed by this fear. I think about the times that I get so tired of dealing with the cognitive disabilities of my kids...I tire of their dependency and I get frustrated with their needs...and yet I love them deeply. But, when my child becomes some one else's pay check and the people getting paid little to care for them at school, on the bus or in a group home.... how much easier is it for them to be disgusted or annoyed by the needs of some one they see as "retarded" or "stupid?"

And so I sob...and collect the pieces of my heart...and remind myself that God is where I am not. I just know that I can speak out, educate, and advocate for those with disabilities. And as I examined what upset me most about this, it was the anguish on the face of the father of this disabled child. I want to be there along side of other parents who must face this world and the sin in it. I will do what I can to change the way that the world sees the weak, the disabled, the vulnerable. I can not protect my children from evil, but I will speak for those whose voice is weak....

Cast your burden on the LORD, and he will sustain you... Psalm 55:22

15 years old...hope as we look to the future..

2011-11-14T21:13:00.001-06:00

We went to eat at the Midtown Global Market...where everyone could eat what they wanted...

Kaden just learned about the "real" vikings and couldn't wait to buy a hat!

15 years old. FAS. Early trauma and abuse. PTSD. The future. Hope.

Those words don't often find themselves in the same sentence. But, Jordan embodies all of these words...and I am thankful beyond words to be able to watch him thrive in the midst of struggles and challenges.

Today is Jordan's birthday...15 years old. It was 9 years ago that we met him. Nine years ago..we were anticipating his "move in" date. He had been in foster care for a year after spending 5 years in his unstable, chaotic and neglectful birth home.

He was smiling the day we met him..from ear to ear. He was unusually charming. We should have known his charm and fearlessness just wasn't right...that it was hiding the pain and fear that was hiding deep with in him. He had long stuffed all the emotions that were pure and from his heart...he could no longer trust that who he was and what he was feeling was safe...and it definitely wasn't enough make others love him or keep him around...and so he watched others and started to act like them..they looked happy...so he was happy..but he wasn't.

And now 9 years later, he can feel again. He can feel anger, and fear, and joy. And even though it often makes him panic or retreat, he often pushs through it. He is healing. He is learning one day at a time that he does not have to be the strongest or the best to be safe..that showing weakness does not mean death. In his old world, weakness, meant he could not survive...and the risk of vulnerability was too great. He wouldn't allow us to see him sick or scared or struggling...and if we did, he crumbled.

And now, he is 15 years old. He has stumbled, struggled, and learned to be a boy. And now, he is learning to be a man. He has a long way to go...but in his own time, he is making so much progress. I am not naive...I know that he will stumble along the way...steps forward, steps back...but now he does not live in fear the way he did when he was still living in survival mode.

Each of the kids, in their teen years, take a special trip with Dad. Jordan is ready for his. Up until this year, he wasn't ready...if we tried to bring him somewhere special, he would do his best to sabotage the time together...he just didn't feel worthy of any special treatment...of unconditional love. But, he is ready now. He and Mark are taking a trip to New Orleans to see a Saints game for Jordan's 15th birthday. Mark is not a football fan...actually never watched a game that Jordan was not playing in. Jordan is a football fan and loves the New Orleans Saints. That is all it took...because he is a fan of Jordan.

Happy Birthday, Jordan. You bring me hope. You brighten my day. God is by your side...we are by your side, no matter what.

Looking a little better!

2011-11-14T08:57:00.001-06:00

Elijah's heart rate is still up, but the bleeding from his nose has decreased, and overall he just seems to feel a little better! He has been talking about what he wants to do today..and talking about all of his favorite subjects like elevators and Target. What a sweetheart he is...Thanks for your prayers.

Brothers...

2011-11-13T21:22:00.001-06:00

Brothers. They fight. They tease. They taunt. They roughhouse. They get wild...really wild. I wonder if they will ever understand that they have something so special...a friend for life. I wonder if they are learning anything about getting along..about what it means to see the loyalty, the love that each has for one other...brotherly love that looks like something so different when I see their relationship at times.

And then, in the quiet moments, I see the tenderness they have for each other. And in the noisy moments--the rambunctious ones...I see the "we are stronger together than we are apart" attitude...it's the language of the bond they share. I see the laughter.... the connection they have...one that has to do with a secret world they have shared growing up alongside each other...

In moments like today, I don't wonder as much if they have learned the lessons I so want to them to learn...because I have seen the lessons lived out between them. In between the struggles, I see compassion, I see love and I see friendship between brothers. And for this glimpse of hope, I am so grateful.

Not much change..

2011-11-13T12:14:00.001-06:00

Not much change with Elijah today. His heart rate is still high but his temp has not increased. He is tired and doesn't want to talk because his mouth is bothering him. His nose is still bleeding. His response to the surgical procedures reminds me of how fragile a body is after a bone marrow transplant. During work up week, he had most of the same procedures that he had on Friday.
He recovered quickly even with all of the challenges he began this journey with.

He is weak. He doesn't have a lot of reserves to be able to "bounce back" from over three hours of anesthesia as well as the procedures.

I am reminded today that life is so fragile. Elijah is being held up by the grace of God..

God's grace has been poured upon us in such great abundance. His grace is sufficient...

Elijah update

2011-11-12T23:03:00.001-06:00

Elijah is having a rough evening. His heart rate is high (145 while sleeping) and that usually indicates that something is brewing. His temp is up just slightly. His heart rate could be up because he is feeling pain from his sinus procedure, line placement, or bone marrow biopsy. I know he is uncomfortable..his mouth and nose are bothering him...he still has some bleeding through his nostrils. He asks me over and over to clean out his mouth with a swab..He doesn't seem in pain and I have given him tylenol with codeine...but he may just not been able to tell us.

I am praying that there is no infection or illness. I am praying for a restful night's sleep for him. He wants to be back home...we visited today and it was hard to watch his face as we drove off. Each morning when he wakes up, he asks if we are going home. I tell him..."soon" but truth is, I don't know when that will be.

11.11.11

2011-11-11T22:00:00.001-06:00

I like the number 11...I have 11 children...need I say more?! And today, on 11.11.11, my entry was selected to win $1100 from KARE11 news! Every hour, the station awarded grants to deserving non profit organizations that were nominated by people in the community. The $1100 grant will go to Hopekids--an organization near and dear to all 11 of our children and their very thankful parents!

Isn't that great?!!

Elijah's long day...

2011-11-11T17:51:00.001-06:00

Right before surgery..the Verced has already been given and Elijah was very happy at this point! Verced made him feel very relaxed before he went back to the operating room.

After over 3 1/2 hours in the operating room today, Elijah is just beginning to wake up. It is almost 6pm and he is still at the hospital. He was at the hospital for bloodwork at 7:45am. They were able to do all the procedures that they had hope to be able to do. He has had so many surgeries, it is very difficult to get in an IV and especially to find a vein to place the central line. They decided to use the same vein to try and save the few good veins that are left. His sinuses were very packed and he has narrowing of his sinus passages. They will be culturing what they got out of his sinuses and we will meet with the ENT to discuss what they find next week. He has been having a lot of bleeding from his nose. He did have a platelet transfusion yesterday and so the bleeding should be settling down. His hip is sore after the bone marrow biopsy.
Poor little guy! His arm and chest hurts where the line was placed. His nose and sinuses are sore and uncomfortable and his hip hurts. They have given him tylenol with codeine to ease the pain. We should be able to leave the hospital soon.
It's been a long day...and sweet Elijah has held up well...but I just want him to be able to rest comfortably overnight..please pray for restful sleep for this little guy. He really needs it.

Mother and son...

2011-11-10T20:33:00.001-06:00

When Elijah was in the still in the hospital, my talented and sweet friend offered to come with her camera in hand and snap some photos of Elijah and I together. Of course, I am so much more comfortable behind the camera, but I was so thankful that she offered to capture this part of Elijah's journey.

I love the pictures...they capture the love I have for him and the joy I feel when we are together...and they remind me of how much I love this little boy.....

Tomorrow is a big day. Lots of procedures, lots of questions....maybe some answers when we get the results in a week or so.

What a gift this has been given to spend this one on one time with Elijah. What a privelege it is to be his mom. He turns 6 years old next week...We both have wishes. He wants a banana, a flower and a white birthday cake. I want the chance to be his mom for a long, long time... To read him stories, to ride the elevators alongside of him, to watch him as he grows stronger, and to hold him when he is afraid....and to tell him that I will love him more than he can ever imagine.

It's all going to according to planned

2011-11-09T08:50:00.000-06:00

The bumps in the road..the low counts...the uncertain days..the recovery...the joy and peace that we have found through it all...it's all in the plan..

This child tucked safely in the arms of his Daddy..it all goes as planned. Isaac is a blessing beyond what we could have ever anticipated.

I love it when I am reminded of God and His character when I least expect it in the every day things we say or do. It all goes according to plan..that is statement that we may say at times. We like it when it goes that way. We get stressed and unsettled when it doesn't. I am so thankful today that life always goes according to planned...if we believe that God is sovereign..that He is in control of all things. It's going as planned, maybe not as I had expected or would have thought I wanted...but it is going as planned..His plan. Thanks, God!

The heart of man plans his way, but the Lord establishes his steps. Proverbs 16:9

day +100 and 2

2011-11-08T18:10:00.002-06:00

Day +100 came and went without fanfare...Elijah is back on TPN feedings to give his gut a rest. And it has been working. The pneumotosis is almost gone! The last few blood tests to determine if adenovirus is present have been detectable but below 500. That is great! His other counts are still low so it we are looking forward to Friday..when he has several procedures done including a bone marrow biopsy. The ENT will also do a sinus wash since his nose has been running for many months now. They are planning on clearing out his sinuses and then culture what they find there. They suspect that their is something going on that they have not yet been able to identify.

So, Lord willing, Elijah will have a bone marrow biopsy, sinus wash, and a central line removal and placement. He has to get transfusions and IVIG (immune system boosters) before he goes into the operating room. Right now his platelets and white count are still very low.

I have learned so much during this journey..some deep and spiritual..others simple and anectodal:

1. I have learned I could live just about anywhere. I love the city. I love the suburbs. I love the country. I didn't know that about myself. There is so much beauty in all of those places.

I love the beauty of the city. The architecture, the people, the cultural opportunities, the community feeling, the convenience. The time I have had hear on the campus of the University of Minnesota has been really nice...I think this campus is often wasted on the young. I graduated from the school many years ago...but I didn't appreciate all that it has to offer until now.
I love the suburbs..I grew up on a beautiful dead end street...the street was lines with elms and oaks that grew so large the branches made an arch across the road. It felt safe, quaint and comfortable. I love to pick up the local paper, the Anoka County Union, and read the stories of local news...the names are so familiar, the places haven't changed much...the feelings of home.
I love the country. We aren't out far into the country, but we live down a country road. Each time I drive down the road that we live on, I am filled with awe. It is beautiful. I love the llamas and the goats along the road. I love the beautiful quiet...the quiet that when listened to, does not seem so quiet anymore..the sounds of russling leaves, the squirrels, the birds...it's a symphony that amazes me with it's surprises.

2. I have learned that it is more expensive than I realized to feed and house one person. It is just more expensive...I am used to buying in bulk..I am used to getting deals. I don't have to worry much about waste. But, buying for one is not easy. I don't want to buy a gallon of milk but a 1/2 gallon costs the same. Things are not made for one...I have gained new insight and empathy for what singles face...and just because there are two of us here, we have not spent one 1/12 of what it costs to maintain our whole family.

3. I have learned that I spend alot of time in the car! I have really enjoyed having more time to spend doing what needs to get done when I don't have to drive an hour to get there.

4. I have learned that there is so much out there they I haven't yet explored in the Twin Cities. I have lived here all of my life and yet, I have learned so much more about the city that I hadn't seen before. It has been boring for Elijah to be in isolation over the past months, and we have spent alot of time driving through the city...looking at the buildings, the communities, the pretty lights in the evening, the city parks, and the unique and quirky shops and services. What a blessing..can't wait to explore it more when I am in a different season in my life.

5. I have learned that my happiness is not in a city, a community or in a place. My heart is with Lord and He has blessed us all in the midst of the struggle. I have learned that my heart is with my family..and I can't wait to be reunited fully with them. We are almost there!

Not that I am speaking of being in need, for I have learned in whatever situation I am to be content. I know how to be brought low, and I know how to abound. In any and every circumstance, I have learned the secret of facing plenty and hunger, abundance and need. I can do all things through him who strengthens me. Philippians 4:11-13

When Adoption doesn't have a happy ending...

2011-11-06T08:41:00.001-06:00

Once a family says yes to adoption, the course of history is forever changed. It's that way for us when we are adopted by God as his precious child. We don't come to Him as a baby...pink and angelic..like a newborn...we don't come as a "blank slate" when God picks us up out and calls us His. We come scarred with sin, broken and in need of a Savior.

Most of our children have come to adoption through the County foster care system. Many people fear that system. It isn't a well oiled machine...nor should it be..It is about children...And the people who are given the responsibility of deciding what is best for a child. Many of the social workers, guardian ad litems and judges we have met along the way have taken that responsibility seriously. We have been blessed by knowing so many conscientious, dedicated workers in the field of child protection. Some have allowed their judgment to be clouded by "rights." While the rights of people should always be considered, children in the system are not afforded those same rights. And there are times when I have cried out in agony "Who is defending the rights of our children?" It is beyond a tragedy to see children suffering because their drug addicted biological parents had "rights." I believe that people can change and that the great majority of parents who have found themselves in the child protection system want to make those changes...but their children don't have time to wait until their parents get their act together...they need parents now..not 5 or 10 years from now.

And just as in anything that we do, we can decide to do it well and for the right reasons, or we can use it for our own selfish advantage. Our own agendas get in the way. Our own need to feel esteemed or powerful can steal adoption's precious purpose. Every situation is different and I don't mean to say that adoptions that don't have good outcomes are the fault of anyone. But sometimes, as with all parenting, the parents' issues get in the way. Most of the time, the process of adoption reveals to us the longings and losses in our own hearts..and healing comes to us in places we didn't even know we needed it in. Otherwise, the pain just gets perpetuated. My hearts is aching for several young people that have crossed my path this past week...stories of adoption that did not have an ending that was filled with unconditional love and a promise for a better future for a child.

Kids who come through the foster care system and are not able to be reunited with their biological family usually come in to the system a mess. They have lived through unstable situations, moved around, experienced abuse or neglect, and find it difficult to trust. And if they survived all of that, they must survive the culture shock of entering foster care. Everything that had been "home" to them, is gone. The smells, the sights, the chaos, the uncertainty...it strangely felt like home. Foster parents who take the time to listen, hear the cries disguised as difficult behaviors. Social workers who take the time to listen, hear the cries of the foster parents and help support them in the difficult journey of adjustment. It isn't pretty most of the time.

And then these same kids must move again. Imagine a lifetime of trauma stuffed into the heart of a 6 year old. And now all of us adults are so excited...Everyone has come with smiles on their faces and balloons and a party...because it is time to move again...but this time, they tell you, it's going to be different..you are entering your forever home...you are going to be adopted. What does permanency mean to you as a traumatized kid? It has no meaning because you have probably heard it before. Your heart has been crushed too many times and you aren't about to let that happen again. Everyone is happy around you and you feel on the outside yet again...because that is not what you are feeling at all. Why am I so different that everyone else, you wonder? They say they will love me, but I know it's not true...it has never happened before.

And so adoptive parents have an ominous task ahead of them. They themselves may have come to adoption because of a need of their own, but now it is no longer about them..but it is about the healing of a hurting heart. We all enter new situations in our lives with images of what that new experience might be like..And when we adopt an older child, those images are plentiful. We just want to add a child to our family and we imagine all the wonderful, special memories that we will cherish forever. And then comes reality. It's the toughest road we will ever walk...but so worth it the first time that struggling, wounded child looks to you for comfort and reassurance...even if it takes 8 years to get there.

This week, my heart is breaking for adoptions that were not about the children...the wounded children. In the County system, the training is usually plentiful..and if you are not scared off after the horror stories you hear in the training, the County, thinks you should be good to go. Not so. Because most everyone in the training room who stick it out through the end is thinking...but I will do it different. It won't be like that for us. The Christian parents often convince themselves that since God has called them to adoption, that He will grace their new child with healing that doesn't involve this much struggle. And the Christian parents struggle even more with the behaviors of their children...it just plain makes them look and feel bad and their expectations are so high. They wrestle over what is sin and what is something that is out of their child's control. Some adoptive parents just continue the cycle of abuse and neglect because they didn't listen...they weren't willing or able to let go and give it all for the sake of healing.

Kids disowned by their adoptive parents when they turned 18. Abuse and neglect at the hands of adoptive parents. These are the stories I have heard this week. Wounds from the past being reopened because adoptive parents didn't listen to the fearful and hurting hearts of their children. And then there is the denial that can be damaging as well...denial of brain damage caused by prenatal exposure to alcohol. Kids who are expected to perform well beyond what their capabilities lie. Kids who feel like they will NEVER measure up..and so they give up.

My heart aches. My mind races. What can we do to help the kids? How can we support adoptive families better through this journey? And how can we help adults who have suffered at the hands of those who were suppose to love them unconditionally? I guess for now, I will just start with the ones that God has placed in my life...I guess we start by loving them...unconditionally.

..at a standstill

2011-11-03T21:39:00.001-05:00

There are times in life when it seems that my world stops spinning while everyone else is moving forward. I can't return calls, answer emails, get paperwork in on time or even have time to think much of anything else. I at a standstill these past few days.

Elijah has pneumotosis intestinalis (sounds like a new species!) in which there is air along the lining of the colon. This is not a normal finding and certainly not typical of post transplant complications. He has been in pain, had bloody stools and a distended abdomen and so he went into to clinic today for testing and to get a treatment plan. The doctor decided the first step was to give his gut a rest. That means he is back on TPN feedings (all of his nutrition will drip through his central line 24 hours a day.) His gut needs time to heal. Most likely an intestinal infection is the cause of his condition, but because this is not something seen often, they are not sure.

So, it isn't a perforated intestine (wonderful!). I was worried that he could be developing a life threatening infection in his peritoneum. It appears to be something less life threatening. It is serious. But, it is treatable. His white blood counts and ANC are still low, so there are lots of reasons to keep Elijah's condition in our prayers. He is fearfully and wonderfully and uniquely made...that is reason enough!

Our sweet boy has handled the pain and discomfort so bravely. It breaks my heart to see him have a look of fear on his face. He woke up afraid this morning..not sure how to handle the pain. But, after we stopped all of his feedings and helped him through the retchiness, he seemed to be feeling better. He was clear in stating that he was NOT all better when asked at the clinic. I was so proud of him...because he usually does not have very good self advocacy skills (and usually makes me look like an overreactive mother!)

And I have finally become very comfortable in the role as overprotective mother. Confident that God is in control of all things, I have learned to trust the guidance that he gives me through what we call "motherly instinct." It's God given and it is trustworthy when we seek Him to direct us. He has not let me down. If his line had not come out, he would have not had an xray. If he had not had an xray, we would not have seen the air in his colon. The gift of a failing central line was evident...and we are thankful.

So, day 100 is almost here. I am glad that we have not depended on the numbers, the statistics and the "typical" course of treatment to determine our source of hope. I am thankful that our trust is not in doctors, or "odds." Our trust is simply placed in God and his sovereignty over all things.

So, life is at a stand still. No plans to move home. Not much time or energy to do anything else or even think of anything else except Elijah's complex care schedule. God has been so gracious to us by allowing us margins in our life....margins that have made it possible for life to stand still for a time. I can tell you that there are sure to be things that we have forgotten along the way, bills that are late, forms that didn't get filled in, but we are able to prioritize that which is most important right now...and that is the precious life of our sweet son, Elijah.

Unexpected complications

2011-11-01T22:42:00.001-05:00

Today I heard the words, "Elijah is not following the typical course of recovery following a bone marrow transplant." I am not sure why those words caught me off guard, but they did. My heart sank and I have been fighting fear all day.

Elijah's adenovirus counts have swung up and down without a pattern that has been unpredictable. His other blood counts have not risen as expected. His kidney function is up and down with no clear trend downward. And, an xray today showed something that is difficult to explain.

A quick x-ray to see the position of the central line became more complicated. It was clear the line needs to be replaced. But, the radiologist called our transplant Doctor because of what else he saw on the xray. Elijah has air that is showing up around his small intestine and colon. This is typically an emergency situation because it is indicative of perforations or other significant health issues. But, Elijah, is showing few signs of a serious situation. But, that is the case with Elijah...what is going on inside of his body rarely matches with how he appears on the outside.

Last week, he had symptoms that were concerning to me...a distended abdomen, diarrhea, and fatigue. It has remained a struggle to try and figure out the source of any of Elijah's symptoms becuase of his complicated multi-system disorder. The nurse practitioner covering the clinic last week was not concerned with the symptoms...In an effort to be positive, it seems like she doesn't really listen to concerns. It is frustrating to share concerns with a provider that doesn't seem to want to hear them. But, I would think that if he had a very serious complication that was brewing last week, that Elijah's symptoms would have already escalated.

Thankfully, our transplant doctor was back in the clinic this week. Elijah no longer has a distended abdomen. He does have fatigue and diarrhea. Our doctor listens. She is thinking of Elijah and his case well beyond the 20 minutes she spends with us in the clinic. I respect her knowledge and appreciate her willingness to call in other specialists to provide Elijah with the best possible care.

And so, nothing much changes with these new findings. We still do just what we have been doing all along...we continue to be hypervigilant in caring for Elijah. He will be carefully monitered in the clinic. We will watch for any changes in his condition and we will pray. Just as we have done since the day that we meet our little boy.

Please join me in praying for Elijah...maybe I am just over reacting to the words I heard today. These unexpected complications are only unexpected to us...not to God who holds the past, the present and the future. Elijah has never followed a typical course in his life. But God has led us down this path with full assurance that He is in control of all things. And we will rest in His faithful promises..

For I know the plans I have for you, declares the LORD, plans for peace and not for evil, to give you a future and a hope. Jeremiah 29:11

Day +94

2011-11-01T09:39:00.001-05:00

The last few days with Elijah have been precious. Wearing a costume can be sensory overload for Elijah but he wanted to be a dinosaur, and for a few minutes he wore his costume. The staff and kids at the clinic were all dressing up and he wore the costume, minus the large dinosaur head on top during his time there yesterday. It was a lot for him to handle.... all the new sights and sounds. We didn't push anything..just let him participate as he wanted. And, overall, it went well.

His heart has become very sensitive...more so than ever before. He gets upset if he feels that I am not happy with his behavior. He has burst into tears several times because I told him "no." Even though he seems so out of touch with other people's emotions, he has shown real improvement in this area. Snuggles with Elijah are not plentiful and when they occur, they are even more heartwarming...

Elijah's central line is coming out. We go to the clinic today to see what they want to do about it. We need some access port for lab draws..and he can't tolerate regular pokes..emotionally or physically. So, we should leave the clinic today with more of a plan for the next days ahead.

As we enter into our 5 month away from home, I am longing to be home and all together again. It is so hard to have my heart's attention drawn in so many directions...knowing that we are not able to all be together again yet. It shouldn't be long though...

I have missed so much and yet have gained so much more. We all have...

Elijah update: Day 91

2011-10-28T18:13:00.001-05:00

Elijah is doing much better. His adenovirus numbers went way down after 3 doses of the medicine used to treat it. His kidneys seem to be stable although his creatinine is still elevated. He is blood counts aren't great...WBC is only 2 and ANC is 900. But, they may be low because of the treatment of the virus.

Elijah and I decided we needed a little taste of home yesterday and so we added a pet to the apartment. Elijah is now caretaker of two goldfish that he has affectionately named them: Gold and Paul. There is a funny story behind the name Paul. Elijah has a physician's assistant named Paul. He has a nurse in the infusion center that he really likes named Jim. He choses to call Jim by the name Paul (which happens to be his brother's name). So, basically, any male in the clinic is now called Paul..even though he knows clearly what their actual names are. It makes me laugh everytime I hear him say "There is Jim..his name is Paul..."

So, now that he decided to name his fish "Paul"..the joke can just keep on going...

It is not easy to describe to you what it is like to be a part of this new family of people that are all sharing similar journeys...we know the staff all by name in the clinic. We see the same families and kids each day. We are treated like friends...and within this community, Elijah is valued for his uniquenss and sweetness. He is treasured at the clinic..and that warms my heart beyond what you can imagine... and I know that while we will be thrilled to not have to visit the clinic three times a week, we will miss our new friends....

Denial, part 2

2011-10-26T22:43:00.000-05:00

In an attempt to shorten up my blog posts, I seem to have created lots of questions. My last post was about denial. But, I didn't mention what it was I find myself in the state of denial about! Here it is...my FAS'ers. We have 5 children who have a diagnosis under the Fetal Alcohol Spectrum Disorder (FASD) umbrella. When the kids are doing well, I start to doubt their diagnosis. I don't know why...

Sometimes, I just wish it weren't true. I don't want to face the future knowing what struggles lay ahead for my kids. I don't want to think about putting my daughter on birth control when I want to believe that she will be able to make good choices regarding purity. I know she has the desire to make the right choices, but I also have to remember she may not have the ability to use wise judgment when she finds herself in compromising situations.

And when I look at my son who is doing really well now...I forget the huge issues that he just worked through only a few months ago...I forget that he is doing well because we have carefully structured his environment for safety and survival. He hasn't necessarily changed...his environment has. And I forget that there could be so much going on that I may not even be aware of. With little impulse control, lack of social skills, heightened sexual impulses, immature thinking and limited ability to use problem solving skills, I expect that there are situations that will come to our attention at any time. It is the nature of living with a child with FASD. Life is going along just fine, until the phone rings...and it is the teacher, the neighbor, the police, or the mother of another child...

I am hopeful that my children will mature and gain life skills. I believe they will. But, I also must remind myself that they have damage to their brains that will not go away. It's permanent. They will not grow out of their diagnosis. Their potential has been limited by their inutero exposure to alcohol. And that is why I find myself seeking refuge in denial..and I think I have seen some of you hanging out there alongside of me!

Welcome to the scenic State of...denial.

2011-10-25T17:19:00.003-05:00

I don't live there...in the State of Denial..but I do seem to rent a vacation home there. Imagine Denial's tourism ads...
...you'll never want to leave.
...almost heaven.
...like no place on earth.
...smiling faces. great places.
I have allowed myself to find refuge in denial when the reality of the issues in my life seem to much to handle. It is a coping mechanism that I has worked for me since I was very young...but I think it is time for me to stop visiting here...it's time for me to find my refuge in the Truth that never changes..

It's time for me to say goodbye to denial once and for all..I have a God that has never asked me to be strong enough to handle the obstacles in my life...He has asked me to look to Him...to cling to Him...to place my trust in Him alone...and that is so much better than any trip to the land of denial....

Post Transplant" Day +87!!

2011-10-24T20:19:00.002-05:00

I stopped counting the days after we left the hospital. It didn't seem helpful anymore. It reminded me of how long it had been since we were all together as a family. It reminded of me of how far it was until we would be together again. It was overwhelming to imagine that we had entered the hospital at the beginning of July and may not make it back home until late into the fall...

But, here we are at day +87! It is miraculous, really. Elijah is still fighting the adenovirus..but he is doing it with the same positive attitude and joy that he has always had. We are almost to day +100!
I can honestly say I am filled with gratitude. There is no room for much else. Elijah is alive! He is thriving! We are so blessed to have been able to walk this path with this little boy.

I did not know how much my love could grow for Elijah. I have always loved him deeply...but going through this with him has stretched my heart beyond what I could have imagined. Each time I walk into the clinic with him, each time I check on him as he sleeps, I am filled with thankfulness for the opportunity I have to be his Mom. I am so proud of him. So proud...of his courage, his attitude, the beauty that shines through him.

He touches the heart of so many people. His challenges might initially draw people to see him as he waits by the elevator waiting to press the buttons for anyone walking by...but it is his joy, his sweet personality that draws them in. He is a popular little boy at the clinic...and I get to be his mom.

I would walk this journey again and again with this little boy...God has blessed us with each moment together.

It's a gift...

2011-10-23T09:36:00.000-05:00

Each moment you have on earth
each breath you have been given...
It's a gift.
How we wish away the moments as we wait for life to get better...to get easier...
How we recognize God's gifts to us when all is well, in the moments that are easier to live in..
but how quickly we wonder where God has gone when life feels like it is falling apart..
It is all a gift from God..the joys, the struggles...the disabilities, the challenges..even death.
Embrace life...all of it.

Forgive..let go of what you think you are owed..of what you "deserve"
Let go of what might have been...
Seek joy...by seeking God and who He is...
Give joy...by serving others...
Extend grace and love in the same way that God has extended it to you..
Hold tight to the ones you love...and expand that world each day...

Stop moving so fast..filling up your days with stuff that does not matter...
Slow down...listen, live each moment as if you know that time is fleeting...
Share your life as a gift to others and point them to the one who gave you the gift.
Share with them that Life is a precious gift...
the laughter and the tears...
Dont let your life pass you by while you were waiting for things to "get better."
This is it. Live it. It is a gift.

Amazing!

2011-10-21T18:54:00.001-05:00

The world of adenovirus is very perplexing. One week ago, Elijah's counts were very high..and it was determined that we needed to treat the virus with a tough drug. But, the results came back from Monday's lab test today and the counts were way down and he hadn't even started treatment! Since then, he has had two treatments already of the Cidofovir but now it is unclear if we will continue to treat it or not. It will depend on the latest lab results. The test must be sent out to a specialized lab and it takes quite awhile to get results back. This is part of the trouble with trying to treat something based on not-so-current lab results.

So, the great news is that the adenovirus appears to be at much safer levels and we may be able to stop the drug that could further damage his kidneys...I am beginning to wonder, though, how accurate the testing is considering the wild swing in numbers that we have been getting. Elijah's white blood count, hemoglobin, ANC and platelets are all running very low right now as well.

When Elijah is not feeling well, it is even more difficult for him to communicate his needs. He never says he isn't feeling well. He always replies "happy" if asked how he is feeling. But, I just know he is not feeling well. Some doctors understand that and respect what I have to say about how he is feeling..others are not so understanding. I know I must be his voice. But, sometimes, I get tired of practitioners contradicting me as if I don't know my son...I don't want to hear, "But, he looks good to me!" ever again...

But, God knows. God cares. And God will continue to care for us in beyond what we ever could have imagined. Thanks for your prayers!

It is well..in the midst of struggle

2011-10-20T05:20:00.000-05:00

Sept, 2011

I feel like I am learning a new language...one that only is spoken in transplant centers around the world. It is a language immersion type curriculum...the best way to learn a new language but the most uncomfortable way at first. I speak about Cidofovir and Probenecid like you might even know what that is. The fact is, I have never heard of most of what I my mind is immersed in right now until we entered the doors of the transplant unit.

The big words of the day racing through my mind are Cidofovir and adeno...One is a treatment for the other...but the treatment is not a "clean" one. It is potentially damaging to the kidneys...and it already has in Elijah. But, it is the only current treatment available. And so we move forward, three times a week, administering a medication that has the potential of helping and hurting.

The medication isn't an easy one to administer. It only takes one hour to give the expensive medication intravenously, but the regime to help protect the kidneys is a process that takes 9 hours to complete. Premeds, flushes, and more flushes..then two doses of another medication to again help protect the kidneys.

Elijah does not have a temp and he has remained well hydrated. If either of those things change, we will be back in the hospital immediately. Most kids would already have been admitted given the intense regimen of treatment right now. I feel like I can handle it from here. We have made it clear that if at anytime, the doctor feels he can be better treated inpatient, that we would not hesitate to bring him in, of course. But, we have medical equipment most families don't have...an oximeter, a feed tube to keep feedings going, and medical training that not all families come into transplant with.

We have stepped up our time in the clinic..his kidney function, electrolytes, and blood counts need to be monitored much more frequently now. He gets infusions to boost his immune system weekly as well as transfusions when needed.

Elijah still looks good...you would not immediately see that he is not doing well. But, we who know him well, can see it. He doesn't slow down his activity level, but we know he is breathing harder and faster. He doesn't tell us that he is uncomfortable, but we see it even though others may miss it. His joints hurt..which happens often for him when his blood counts fluctuate. He is a sick little guy..but just has it has been before transplant, besides the bald head and blue mask, no one would no it from the outside.

My hearts breaks for another family on the BMT unit. Their son, Tyler, is fighting for his life and his body is not handling the stress of all of the treatment that he has endured. He is only 2 years old and has only been off of chemo for 4 months of his life. His body is weak and his kidneys, liver, heart and lungs have all been damaged. Please pray for him and his family. I have not met this family but I have been praying for them since they arrived on the unit when Elijah was still an inpatient. They have three young children...I can not even imagine what stresses they have been under through this time. You can read about his journey on his caring bridge site here. They could use your financial help as well...if you would like to give, their email address is listed on their caringbridge site and you can donate through paypal.

We have been separated as a family for 4 months now. It has been stressful to say the least...But, It has been an indescribable blessing to be able to spend such precious time with Elijah...the more time I spend with him, the more I see God working in him and through him. God is here...and we feel His touch in ways that I could have never imagined before going through such an immense struggle,

There is no possible outcome of this transplant experience that we fear. There is no victory or challenge that we are not convinced has come from God. Elijah could be healed with no signs of long term damage to his body. He could end up on dialysis. He could die. That is the reality of living with a life threatening illness. But, as we pray for healing and protection from the damaging effects of the treatment, we also pray that we will rejoice in knowing that God is in control of every detail of Elijah's life...and we will walk each step of the journey knowing without a doubt that God will never leave us or forsake us...he has shown us his faithfulness and mercy and he will not stop pouring out his love upon each one of us. Again I can say..it is well with my soul.

Prayers for Elijah

2011-10-17T16:52:00.000-05:00

Elijah's adenovirus counts have shot up...he has 115,000 copies of the virus in the blood now. The doctor's have decided to put him on the Cidofovir for three weeks. They explained today that this isn't like most virus and their treatment...typically, when you treat a strep virus for example, with an antiobiotic, it goes away. With adenovirus it isn't that easy. But, we are praying the the numbers would go down so that Elijah's immune system could have a better chance of fighting what is left.

He has been feeling pretty rough the last few days...The medication is given through IV and the process is somewhat complicated. PHS, the company that assists us with taking care of Elijah at home will come out and teach us the process of adminstering this medication.

I wonder if I could test out of nursing school by now...I'm thinking maybe.

Please pray for Elijah..and for all of us..we are getting tired.

Elijah: Day +76 More than a slump

2011-10-15T08:00:00.001-05:00

Elijah's adeno virus counts are very high. They are much higher than they ever were when he was hospitalized (up to 38,000copies) They have continued to go up and down for several months now and the debate has always been when to treat it. We spent a very long day at the clinic yesterday with treatments that needed to get done to boost his immune system and build up his neutrophil count. He is neutropenic and his white blood cell count is below 1.9. We didn't leave until early in the evening..

The issues remains that Elijah still has few symptoms...only diarrhea, stomach upset and now red eyes...but he has remained fever free and has had no rash or other symptos that he can tell us about. And despite being quite sick, he really does not show it on the outside. The last few days, he has been emotional...which is the first sign that something is not right. But, even that comes and goes. If the treatment for adeno was safe, he would be on the medication right now. But the medication, is hard on the kidneys and he has already been on it for several weeks while in the hospital. And his kidneys showed signs of being stressed when he was on the medication (Cidofovir). His kidney function is still not back to normal.

Thus, we are back to the same story of Elijah's life...his outside does not match his inside. I can't help but wonder how much his difficulty with communication is impairing our understanding of how he really is feeling. When he appears that he is doing well on the outside, his bloodwork tells a different story. So, on Monday, we will meet with specialists (ENT, and infectious disease) to get some opinions about the way to proceed with treatment. There is risk in either...if we don't treat the adenovirus, it could overtake his system. It is a serious, life threatening post transplant complication. Or, do we treat it and risk permanently damaging his kidneys. That is the question before us.

We would appreciate your prayers for Elijah.

Last night, at the Elk River varsity football game, the coaches and team helped to raise money in the "Give it up for Elijah" campaign! They collected donations and the team members did push ups while a local business pledges 50 cents for every push up completed. We were not able to be there, but Jordan participated and my sister was there as well. We are so humbled to have the support that we have had through this journey... it has been amazing to watch perfect strangers become friends. We are so grateful for the incredible people who have come alongside of us as we help Elijah through this fight for his life.

I'd choose you all over again...

2011-10-13T21:58:00.000-05:00

I've been the Mom of kids with challenging behaviors, disabilities and disturbing pasts for quite a long time. I have a learned a few things over the years.

I have learned that this life is tough..and there are times when I wonder what I was thinking when we decided to take this road less traveled..but there has been beauty that only those who venture off the main highway of life could have experienced. You, my children, have shown me beauty that has pierced the darkness.

I have learned that there are kids out there who have suffered beyond what we can imagine..and they just might live next door..not only far away in an orphanage. I have looked into the eyes of my son..and fought to help him see that he is lovable, that he deserves to have a family that will love him no matter what... and that he was not a mistake.

I have learned to stop dealing with behaviors and start seeing the voice behind them. What is the need that my kids are expressing through the crazy behaviors they exhibit? I see the fear in their eyes and I must deal with the fear that I hold onto as well. We grow together, little by little...

I have learned that stuff is overrated..and so is sleep.
I have learned to talk less and listen more...
I have learned to love without looking back at what might have been..
I have learned to enjoy my kids at the level they are at..not where I think they should be...
I have learned to sorround myself with friends who understand my journey..who will listen to me when I am weary and who will laugh with me when all I want to do is cry...

But, above all..no matter what, my children....I want you to know without a doubt...

I would choose YOU all over again...

The 60 day slump--10 days late...

2011-10-11T15:56:00.001-05:00

In the bone marrow transplant world, there is something that is called the 60 day slump. Typically, around the 60th day, counts dip. Elijah's counts have all dropped down to levels that were much more common right after transplant..His white blood cell count is 2.1 and his ANC is about 1000. Those are low but not out of the ordinary for this stage of the process. He seems a bit more tired but overall has plenty of energy to get through the day.

The adenovirus counts in his blood keep going up and down. They were back up in the beginning of last week and down again by the end. Today, at clinic, they sent urine, stool, blood and nasal swabs to test for adeno again. We are only going to the clinic about twice this week, but both days get long.

Elijah is getting bored hanging out at the apartment for so long...we take alot of walks, ride the elevators in the apartment, and mail letters (he has been watching an elmo video about sending mail!) He is getting a little "stuck" watching the same videos and playing the same games each day...and so I am trying to change things up as much as I can for him. He thrives on routine and so, while I try to keep things predictable for him, I don't want him so dependent on routine that he can not handle the unexpected in his day.

This process is not about the balanced life...it is about the extreme in many ways. By stretching the limits, the chance at survival is increased. By hanging just on the edge of the extreme, then the balance that must be achieved can occur...suppressing the immune system to make sure that Graft vs. Host disease does not flair up..and yet having enough immune system to fight off infections that can quickly becoming life threatening. I am amazed at the doctors and staff in the BMT unit...they are so good at what they do.

In our boredom, I am reminded of what a rich life we have. My life is filled with a faith that renews me each day, rewarding work, energy to do the things that need to get done and plenty of joy in each day. As we stay isolated from the outside world for the most part, I am reminded to be thankful for so much in my life. I am thankful for health, for a great big family that keeps life filled with adventure...I am thankful for the opportunity to serve others with the gifts God has given me...

Lord willing, It won't be long and we will all be back together in the same house (probably some tie in November)..and my compassion has been swelled for all those whose families who must be separated like this..

And I am thankful with how Elijah is doing on his journey with Schwachman Diamond Syndrome...He is alive! And I don't want to ever forget what a gift that is!

When my best is just not good enough..

2011-10-10T13:53:00.000-05:00

What if my best just isn't good enough?

My kids ride a rollercoaster one by one into the depths of places I never ever wanted them to
be..the friends they choose...the impulsive choices they make....
As I watch them do and say things that are as far from the faith I so wanted to share with them?
What If I shared too much of myself and not enough of Jesus?
What if the best I have got to give is just not enough...

Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things. Phil 4:8

That is what I wanted their minds to be filled with..instead there is little room for the pure, the just and the lovely..because they have chosen to fill their minds with so much crud and filth.

What if there is absolutley nothing I can do to lead them out of the deep ?
I am so disgusted...so sad... Have I used their mental health issues, their FASD brain damage as simply an excuse so that I don't have to take responsibility for their choices? Why didn't I do more...pray more...teach more....instill more Biblical truth into them?

Have I let them down? Have I let God down...and then He reminded me...

Your best just isn't good enough. It isn't. It never will be. You must rely on me..my best is so much better than good...and it is always enough.

And so I will take a deep breath again...I will rest again...knowing that I must place my children back into His arms...and leave them there...because when I try to do it on my own, my best just isn't good enough...He knows their hearts, He knows their minds..and I will trust Him to see them through to completion.

Not that we are sufficient in ourselves to claim anything as coming from us, but our sufficiency is from God. 2 Cor 3:5

Ah, Lord God! It is you who have made the heavens and the earth by your great power and by your outstretched arm! Nothing is too hard for you. Jeremiah 32:7

The white picket fence life....

2011-10-09T11:09:00.003-05:00

Several years ago, I received a call from a mom who was 30 weeks pregnant. Her son, she was told, would be born with the same birth anomaly as McKenna was born with. The prognosis for her baby was guarded. One thing she knew for sure was that she had not planned on raising a child with a disability. This mother was a confessing Christian...one who believed in the value of life when it included healthy children..but she had not extended that value to those born with disabilities.

She told me she wanted the "white picket fence" life that everyone else wants. She wanted three healthy children and a dog in a beautiful home in the country. The picture of her perfect life did not include this child that she was carrying...the broken one. I was in shock as I listened to her tell me that she would not be changing the diaper of an 8 year old..that just wasn't going to happen. And it didn't.

I shared with her our story...I share with what a privilege it has been to serve our children by taking care of their needs. I shared with her that she did not have to muster up the strength to handle this unexpected change in her plans, that God would meet her right where she was at and he would give her the strength she needed. But, mostly I prayed. It was clear that her mind had been made up long before I answered that phone. She would have the doctor deliver the baby early...without a c-section. Given the condition the child had, that meant almost certain death. She could chose to let her child die while still maintaining her position in the Church..no one would know the decisions she had made.

This little boy lived only for a few hours. I am certain his short life was not in vain. Today, this mom has that "white picket fence life as she wanted..at least it appears that way from the outside. But, I wonder. How did this little boy change her heart? What goes through her mind when she sees a Mother pushing the wheelchair of her child? Has her heart softened? Does she think, better them than me? ..or does she grieve the loss of this not so perfect child.

So, when I am out with my children who are disabled and I see others looking at us and then quickly look away...I wonder. What are they thinking? While, in the past, annoyance or anger would be my reaction to their looks. But, my heart has softened over the years and I have started to consider all the different emotions that could be stirring up in a person who sees a disabled child. They could be staring for so many reasons...curiousity, pity, compassion, or conviction... Are they holding onto guilt for the choices they had made? Are they grieving a loss that no one else knows about? The burden of caring for a child with a disability in nothing compared to the horrendous weight of hiding a secret that is crushing your spirit.

Trying to maintain the white picket fence life keeps out the messy, the disabled, the struggling...and it doesn't allow the Truth to enter...and it is the truth that sets us free. I am pretty sure that if I had a white picket fence... the paint would be yellowing. It would be chipping off and the boards would be warping. But, I would be free! And there is nothing better than feeling the freedom that only comes from God..

Day +70: I am Elijah..

2011-10-08T20:52:00.005-05:00

I have a life threatening illness that has changed my life forever.

I have autism, but it is not who I am.

I am courageous, kind and joyful.

I don't see my illness

or my disability.
I just live the life I have been given.

...every moment of it.

I am thankful.

I am a survivor.

I am filled with courage even though

I don't even know it.

I am a hero...

Just ask my Mom.

I am Elijah...

fearfully and wonderfully made.

The legacy of a faithful friend...

2011-10-07T17:43:00.000-05:00

She was meant to be a healing dog...we found her at a dog rescue just a few weeks after our sweet Evan passed away. Hope needed something to help her heal and so we decided to add Honey, our shih tzu, to the family. She had not be in her foster home long..the rescue dog fair was the first one she was brought to...we could tell she was smart, sweet and well trained and we wondered how she found her way to the city pound..abandoned. Because she was a rescue dog, it was required that she needed to be spayed before she was adopted. We agreed to bring her in the next day to get the procedure done.

When I went to pick her up from the vets that day, they asked me to wait until after the clinic has closed because the vet wanted to talk to me. Oh great, don't tell me I just adopted a dog with special needs, I thought! And when I went back to his office, as empathetically as if this was my child, he told me that our new dog had cancer. He had removed large mammary gland tumors and that the cancer looked like it had spread to lymph nodes. He told us there he didn't feel that we could treat the condition and that we should just take her home and love her until the tumors grew back. She may have a couple of years left, he said.

So, the healing dog who we adopted needed healing of her own. The rescue agency said we didn't have to keep her...but what message would that send to the kids...if anyone was going to adopt an abandoned dog with cancer, it might as well have been us. We had adopted a dying dog to help our kids to heal from the death of their little brother...what were you thinking, Lord? It didn't make a bit of sense...at the time.

That was over 5 years ago..until today when Honey had to be put down because she was in so much pain. Honey was smarter than any dog we have known..she could do more tricks than I ever could and she brought us all so much joy. We think she about 12 years old..and she lived with cancer well beyond the doctor's predictions. She was a faithful friend...patient and loyal to our unique family.

And so each child is reacting in their own way. One seems completely unaffected...a coping mechanism that he employs often. One has gone into a rage...screaming about everything but what really is bothering him. One is crying uncontrollably, as usual, when even the slightest sadness comes her way. And these aren't the kids that I worry about the most...one whose anxiety disorder is flairing up lately and Elijah, who will come home to one less furry family member whom he loved..

So, our dog died today. It is something God will use to teach our children how to deal with death and grieving. It is hard. It is a gift. Honey was a gift to our family...even in her own struggles, she has helped us to heal the hearts of our children who could relate to her...she was sick and abandoned..and she deserved a family of her own...no matter what.

Honey was a healing dog...in ways we never expected.

Defending a Brother

2011-10-06T21:42:00.001-05:00

Jordan Number 49

Jordan is in high school. He is 4'9" tall. He plays on the freshman football team. He is the smallest on his team. He isn't going to be tall..a product of his fetal alcohol syndrome. But, it didn't stop him from signing up for football...a sport he has never played before.

He made a great tackle in the game tonight. As we were cheering on the sidelines, a large group of high school soccer players were just coming to near the fields and started to watch the end of the game. Several of the boys announced to the others..."Look at number 49..do you see that kid...He is so small!" The team stared and laughed at the number 49...my son. The sting for me is long gone...and I was just so thankful that Jordan could not hear their jeers. But, my heart ached to think of him walking through the halls at the high school. I know he feels uncomfortable and insecure...and we are working so hard to build up his confidence only to have it torn down so instantly...
But, it was not the insensitive comments that are the story here...it was the response of our 7 year old son, Kaden. He heard what they said. He knew who they were talking about and he wasn't going to let it go...This little boy walked up to the large group of high schoolers and yelled, "Hey, that's my big brother you are talking about...and you are being mean...and he is really strong!"

They have their own struggles every now and then, but each one of them would stand up and defend the honor of a brother...no matter what. The love that our children have for each other was evident on the sidelines today...and it is evident in the way they care for each other at home. I hear the tender words spoken to little Isaac when they do not know any one else is listening. It gave me peace of mind to know that they are looking out for each other...even our second grader watching out for his high school brother. "He's my brother and I love him"..he told them....I don't know a thing about football but I did learn something tonight about courage and love...

Texting as a tool

2011-10-05T19:30:00.002-05:00

Before our teens had cell phones, I worried about how this was going to go in our home...particularly with those effected by FASD. We set up a contract for each of the children when we felt that they were ready to start having phone priveleges. The contract was simple and straightforward..they were not allowed to erase texts, they would need to give us the phone immediately if we wanted to spot check their activity and they needed to check the phone in at 9pm. Each child had different rules as they proved their ability or inability to handle the rules. Eventually, we discovered that our cell phone carrier could turn the phone off when we decided and then we didn't have to discuss it's use after a set time at night.
We have had plenty of bumps in the road, but for the most part, things have gone pretty well. What has been the unexpected benefit of our teens having cell phones has been texting...

I have found that texting has been a tool that I have used to connect with our teens who have not been easy to talk with in person. Particularly for Jordan, I have learned so much about his heart, his hurts, his fears and his difficulty with language comprehension.

Texting has been a teaching tool for each of the kids, especially Jordan. I feel like I can be a remote external brain for him. I have used texting to help him know what to say in situations he has been in. Last evening, while Mark was speaking with Jordan's therapist, Jordan was busy texting me with his interpretation of what he heard Mark saying. His perception/comprehensionn of the conversation was all wrong. Because I had a chance to hear how crushed Jordan felt because of the misunderstanding, I was able to talk him through over the phone...and in the end, instead of shutting down, he was able to talk about the hurt he was feeling. I learned that so much of the issues we have had with him have come from fear that rules his being from deep within. Through texting, I have been able to deescalate his flight/fight response and calm his heart.

I have made a breakthrough with my approach to parenting my kids who have trauma backgrounds or FASD. Instead of trying to change them, I realized that it was me that needed to change. Early on, I focused on trying to train, teach and change the behaviors that I saw that scared me for their future. I worried about them getting pregnant, ending up in prison, or dropping out of school. The longer I have been on this road, the more I have realized that, while I can help them learn, I can guide them, advocate for their needs...there is something so much more important that they need from me. They need to know I love them no matter what. Jordan is 15...my time is short with him. He has a broken heart from early trauma and abuse. He often feels insignificant, dumb and unlovable...He needs to feel loved, accepted and a sense of belongingness before I don't have the chance to give him that.

And so I have focused on the short time I have with him...and I am committed to loving him with everything I have got..and the best way I can show him right now..the best way he accepts my love, is through texting...
..and so throughout the day, I send him messages...messages of love that he can't accept when we are together...messages that tell him how much I love him...how thankful I am that he is my son..how excited I am to see what God is going to do with his future. I pour love upon this child over and over...and he soaks it in like a sponge. He is healing little by little...

...and the blessing has been with each time I send him a message, I see him with empathy and compassion, my love for him grows and grows and I become a better Mom to him. Texting has been a tool that has allowed me to help my son receive love that he so desperately needs. I am able to love and accept him where he is at right now...God has blessed us in expected ways...

I want to live radically..

2011-10-04T17:10:00.002-05:00

I have been thinking alot about living radically.

I want to live every moment of my life..really live it...
not just waiting for life to happen to me..
but I want to
...live like Christ died for me...because he did.

I want to..
...live like today is sacred..like each moment
is a gift from God. Because it is.

I want to...
...live like my days are numbered..because they are.

I want to..
...love abundantly like Christ loves me. With no expectation of
love in return...because God has poured out his unconditional love
on me as a sinner who did not deserve his love..but he poured it out
lavishly upon me anyway...

I want to..
be true to who God made me to be..not how I
think He should have made me, but I want to
use the gifts he has entrusted me with..
gifts that are uniquely mine given to me by God.

I want to..
...live with a passion that is fueled by
Christ and all that he has given me. Because all things
come from him.

I want to..
live with a thankful heart..that overflows freely to those
who need His touch in their lives...

I want to...
live with wild abandon for Him...
I want to live like I know without a doubt,
that He has my back..because He does.

I want to...
see the broken hearted, the hurting, the
sick..and extend the hand of Christ to them.
Because that is what He did for me.

I want to...
find beauty in the ashes...I want to be driven to seek the
blessings in all things..because He has promised me that all
things will work together for good. Because when I searched
for the beauty, I have found it..time and time again.

I might not be the most influential, the most respected,
the most theologically correct, but I am a child of the
King and I just want to live like it...

...every minute of the days I have been given...

Day +66

2011-10-04T15:33:00.002-05:00

Elijah is doing great! His clinic visit went very well...his labs look great. He is doing remarkably well at this stage of the transplant process. Today, Elijah sat on the chair in the lab by himself while the technician drew several vials of blood for testing. He didn't even wimper. The child life specialist has made a checklist for him of what needs to be done, and as long as it is on his list, he does it! The autism has come in handy in many ways as he faces so many difficult things each day. The routine of BMT is very predictable..and that is a blessing for him. He will only be going to clinic three times a week this week and then, if all continues to go well, twice a week next week! God's hand upon Elijah has been so evident through this whole process..Elijah shares his story even if he does not have the words to tell it.

He doesn't like the sound of the bugs buzzing by...

There is such beauty where ever we look..and we are determined to see it and soak it in...

Transparency

2011-10-03T15:24:00.001-05:00

Yes, that is an "underwears" hat that Elijah is wearing! He thought it was SOOO funny.

Honestly, I don't know how he is doing it. I don't know how he has held it together these past three months. He has had some help, no doubt, but the weight of the burden of taking care of 8 children all with disabilities is hard to imagine. I have been rotating kids through here at the apartment. The two I have had for the weekend don't sleep. Their FASD is so evident... especially when I have had a chance to step away from my life and then get a glimpse of it with new eyes. Kaden slept for 2 hours. That is it. Jordan slept for 3 hours and then in the morning, was tired and slept again. Combined with the overnight cares that Elijah requires, I am running on empty.

Mark has done that every day for three months...alone. FASD is draining...even when a family is intact and functioning well. It has a way of driving you crazy in ways you can't imagine if you don't live with it on a day to day basis. Caring for those who are effected by disabilities is draining..but God has given us just what we needed to get through. And we would do it again all over if asked by God..in a heartbeat.

We are transparent around here. We share the good times and the rough ones, because when I am transparent with others, I am better able to let go of trying to preserve some image that isn't real. When I am transparent with others, I can be transparent with myself. And when I am transparent with myself, I can lay my faults, my fears and my failures before God with more honesty and humility. Living with disability isn't always pretty, but it is always worth it. There are times when I wish I could stuff all my junk back in and pretend for a bit that I am not a mess, but I am thankful that I am not able to.

I value honesty about what it means to follow Christ. If we don't represent Him with truth, then we are really not representing Him at all. And besides, it takes far too much energy trying to keep up an image that isn't real..and I just don't have time for that. So, sometimes, I wonder if I share too much of our struggles, our doubts and our fears. But, I know that there are others out there that feel unlovable, undeserving of God's love...and I want them to know..

That God will be there when you call out His name..

and that He wants you to come to Him just the way you are...

...with all of mess you have created, with all the fears, and doubts that lie within your heart.

...He wants you to know that you are never out of His reach..NEVER.

He loves you...just the way you are.

He gives power to the faint,
and to him who has no might he increases strength.
Even youths shall faint and be weary,
and young men shall fall exhausted;
but they who wait for the Lord shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall walk and not faint.
Isaiah 40

Day +64: A week of clinic visits

2011-10-01T22:24:00.002-05:00

Elijah reclaimed his special spot in the red circle just outside of the elevators at the BMT clinic. He loves it there! There he can watch all four of the elevators as they go up and down...and if he is lucky, someone will ask him to press the button for them!

The week went by fast as we head out each morning to the BMT clinic. Bloodwork, weight checks, Immune system boosts, flu shots, and special nebs keep us busy every day. Elijah and I have adjusted well here at the apartment..it really helps that Elijah thrives on routine...he reminds me of "what's next" all day long. We are busy, but doing well.

There are moments as I am doing all things that need to get done..moments when the thought..
"I can't possibly do all of this" come to mind. Lord willing, we have about 5 weeks living in two households... There have been some tough moments along the way. But their have been many, many more unexpected blessings that God has given us to enjoy...

The tender moments between Elijah and the other children will always be some of my favorite memories of all time. Each of the kids have shown such compassion and love towards their brother...and what could be better than that?

I am truly blessed...

birthday pics!

2011-10-01T19:04:00.002-05:00

Some birthday pics!

Happy Birthday Hope!

2011-10-01T12:12:00.001-05:00

I always knew that Hope was a beautiful name...but as the years go by, I am even more convinced that God had chosen that name exactly for her. She came to us with that name at 10 months old. Her birth mom named her..we did not choose it, but we could not have chosen a better one.

Hope is the oldest of our children to be affected by FASD and ADHD. There have been times over the years when I focused on the things that our kids with those diagnoses could not do well. There have been times when I spent moments worrying about their futures...wondering how they could possibly survive in this world without skills that seemed necessary to survive.

And then there was Hope...she has graciously allowed me to learn along side of her. She is sunshine..that is all I can say. The gifts that God has given her, not in spite of, but through her disability, are gifts that will carry her far in this world. She has a spirit of joy..she spreads it where ever she goes. She holds her friends and family near to her...she does not miss a chance to tell them how she feels about them. She is caring and compassionate and stands up for the underdog even when she may put herself at risk of harm or ridicule. She is fun, carefree and ready for an adventure at every turn. I need her in my life..she balances me.

She has shown me that the future for our kids with FASD and ADHD is bright. Although there have been many struggles that Hope has faced, she has not lost hope for the future...and neither have I.

I see a teenager who loves the Lord and is committed to serving Him in all that she does.

I see a girl who is not afraid to face struggle and disappointment to follow her dreams.

I see a girl who has matured in ways I was not sure would happen...

I see my daughter who God made created for a very special purpose...and with each passing year,

I stand in awe at the placement of each child into our family...he knew just what all of us needed.

Happy Birthday, my sweet Hope!!

Turning 19...

2011-09-30T20:12:00.002-05:00

The Martindale daughters all have birthdays within two days of each other. Hope and McKenna were born on October 1st, just two years apart. Maisy was born on the 29th of September. McKenna began it all in many ways..on the day that we sat in a obstetricians office trying to comprehend the news that our daughter had not developed inutero the way most babies do...her skull was not formed correctly and the lining of her brain had pushed out of the opening in her skull. She will not survive, they said. And if she did, she would have no quality of life.

And, in the Martindale household, those are fighting words. No quality of life? Who gets to decide that? Who has the right to say that a child with a disability can not bring blessing to this world and be blesssed beyond what we could ever imagine? How arrogant it is to believe that only those who are born without a disability can find true meaning in life...We had a decision to make, they said. And we chose life.

And now she is 19 years old. No longer a child...but still so much a child. She is staying with me at the apartment with Elijah for a few days. How ironic it has been to think that we are sorrounded in the college apartments with lots of 19 year olds. 19 year olds who were born the same year as McKenna...they started kindergarten with her and graduated from high school alongside of her..But they grew up. McKenna did not in so many ways. It hurts. My heart aches as I see other kids her age moving on as they enter a new phase of life. It's hard to think of what might have been if God had decided to make her like the other girls. She would have been amazing that is for sure. I just know it. But, I will never know...I just know who she has become just the way she is...

She was born with a disability. Often, she is messy, awkward, and intense. She is completely dependent on her parents and is, in so many ways, more like a 5 year old than a 19 year old. She wears her heart on her sleeve...and is not inhibited when she says or does much of anything. She will tell you how she is feeling..without any attempt to make herself sound smart or better than God made her to be. She is kind and sensitive..and has a great sense of humor..

She is purely who God made her to be...

...and that is a refreshing trait to share with the world. She loves deeply...lives in the moment...

and has taught us so much about patience, priorities and about quality of life.

Quality of life is not measured by intelligence or productivity or about success. It is measured by the moments we spend living as God intended us to live. Quality of life is about who we live for, not who we are. And it does not depend on our IQ or ability to contribute to society...

...although I know that McKenna has so much to contribute to this world while she is here...she slows people down, forces them to listen and allows them to see the pure joy of living. She has quality of life. So, I will allow myself to grieve for a moment on her 19th birthday, and then I will look to the lessons that God has taught us through her disability...she opened up a world to us that we may never have known...our family has expanded to include a whole world of those effected by disability..and we have been blessed in ways we never would have expected on that day in the obsetrictions office 19 years ago...

..and we are forever grateful that we have been blessed to share our lives with her...

Life in the Maisy lane...

2011-09-29T06:48:00.000-05:00

4 years old today!

Life in the Maisy lane has only one speed...and our life has never been the same since she came into it! She is so filled with life...so filled with joy..so filled with spunk. I don't think I have met the person that does not smile when they meet her. She even has a radar that seems to be able to find just that person that needs that little extra boost of sunshine for the day...and she brings it on.

What do you give a little girl that gives so much each day? Well, we all know that she loves attention..certainly the world is her stage. And so a chest with dress up clothes and an audience of her family and friends should be just the ticket. I can't wait to get home this evening to celebrate with her. I miss my sweet baby girl so much being away from her on a day to day basis--but just hearing her little voice over the phone energizes me for the day (I get the energizing feeling while Dad is getting the worn out feeling trying to keep up with her!)

God has given this girl a special gift...He is using the testimony of His faithfulness and love through her story each day. What an amazing tale He has to tell..and Miss Maisy has been given a voice to tell it...

So, on your fourth birthday, my dear daughter, may we be able to give you back just a portion of the joy that lives with in you..just a fraction of the joy that you have brought into our lives. You are a blessing beyond measure.

Where are the parents?

2011-09-28T20:54:00.002-05:00

When you see a teenager who is acting out...Who is getting into trouble... Who is acting disrespectful or is pregnant or pierced in places you don't wish to discuss...what thoughts run through your mind?

If you have young children..or compliant teenagers...or no children, you may be thinking..Where are the parents? What is going on at home? They should do something about their child! If my child EVER acted like that, I would not allow it.
If you have had those thoughts, I want you to know something. I want to tell you where the parents are:

They aren't in bars, never home, uncaring, selfish parents who don't put the needs of their children first. They aren't uninvolved, uninterested or uneducated. And then just add FASD into that equation...the disability that shows itself in negative behaviors but appears invisible to the rest of the world..

And so, where are the parents or kids with FASD?

They are on doing the best they can with children who have been exposed to alcohol prenatally, who wrestle with ADHD, anxiety, depression, past abuse or neglect...

They are on their knees praying desperately for their child...the child that they know...the kind, loving, sensitive and sweet child...not just the one the world is seeing..the rebellious, angry, acting out child.

They are trying to adjust to the new challenges that have been thrown their way because their child has brain damage that will not go away...yet, their child looks so normal on the outside. The world sees a delinquent, while the parent sees a kid with a brain that is not able to think through their own actions.

They are busy trying to get services in place...social services, IEP's, counseling (even if it doesn't help), psychiatrists on their child's team. They are busy jumping through the hoops that are required to get what a child may need in the future.

They are tired. They are tired of feeling like a rotten parent, a rotten employee, a rotten spouse because they are emotionally and physically drained from dealing with a troubled kid. They wait for the phone calls from the school or the authorities with reports that humble a parent beyond what they every imagined possible.

They are busy monitoring all the aspects of a teen's life. They must be hyper vigilant about their child's use of the phone, the internet, facebook. school functions and "friendships." They are busy monitoring unsafe situations that present themselves every day for their FASD teen.

They are busy advocating for their child..constantly educating Teachers, Principals, clergy and social workers who should know, what it means to struggle with FASD....poor executive functioning, poor impulse control and behaviors that are perceived as being lazy, unmotivated and disrespectful.

They are busy doubting their own abilities to handle all that may come there way. They are busy trying to sort out the "big stuff" from the "small stuff." They are busy second guessing their own instincts when the world seems to think they should be able to fix their child's behavior if they just follow three easy steps, or if they would stop letting them eat so much sugar, or if they would just be more strict with them.

They are learning to love their child unconditionally...through the good, the bad and the really ugly...They see beyond the behavior and love the child. They have to..because not many others will. They grieve what could have been before the child's life was changed by alcohol long before they were born. But, they dream for the future...they hold onto hope that their child will learn, will mature in their own timing. They know without a doubt that God sees their child's disability but does not stop there...He understands the struggles, the limitations and the precious gifts and talents he has entrusted them with. He does not see as we see...He sees our child's heart.

The parents are busy helping the world see the child that God created, disability and all. They are busy teaching their child to see themselves as God sees them...created in His image..fearfully and wonderfully made. And through it all..He has a story of hope and redemption to tell. And the ending is filled with a future that only God knows...

...so where are the parents? We are busy loving our kids through it all...

⁷But the LORD said to Samuel, "Do not look on his appearance or on the height of his stature, because I have rejected him. For the LORD sees not as man sees: man looks on the outward appearance, but the LORD looks on the heart." 1 Samuel 16"7

Day +61: Apartment Life

2011-09-28T18:50:00.001-05:00

I let him take his mask for just a minute outside today. But, otherwise, he must wear it whenever he leaves the apartment. He is beginning to get the fuzzy look caused by the cyclosporine that he is on that helps prevent graft vs. host disease..

We are settling in to apartment life... my roommate and I. The supplies are all organized. The routine is coming together...the daily clinic visits fill our day..the medications, IV's and TPN feedings take up the rest of the day. Elijah is doing well out of the hospital...he is happy and excited to be free to walk around the apartment. We are loving our time together to hang out.

On some levels, he is doing well. Most of his blood levels are better than they ever have been since transplant. His white blood cell count is 5.2 which is nearly double what it was in the hospital. He has had no temps and seems to be feeling really good...he gets tired, but does not let that stop him. He walks up to the clinic visit from the car each day...he doesn't want to ride in the stroller. He is amazing.

One area of concern is his continuing adenovirus. It is still growing in his blood, urine, and stool. He has persistent diarrhea (which could be from a number of reasons.) The numbers of the virus in his blood are more than double what they were at the peak of the adenovirus in the hospital. But, at the same time, he is essentially asymptomatic. He does not have a temp. In the next days, the doctors will decide if he needs to go back on the Cidofovir. That is the med that has been hard on his kidneys during the last course of treatment. If he were to get a fever, he would be right back in the hospital.

Things at home having been heating up. Mark has had to speak with the principal twice this week regarding one of the teenage boys. Those of you who have multiple children with different may be able to relate. When some of the kids have particularly severe issues, the milder kids can fall through cracks..even with us as parents. The child that is having difficulty now, in any other family, may his issues may have been more pronounced (ARND, ADHD.) In our warped world of pretty severe developmental and mental health need kids, he looked really mild. I even slipped into the fantasy that maybe he really didn't have any issues and I was just seeing things that didn't exist. Even though in my gut, I knew that something was not right. But, he was so mild compared to so many of our others. I did him no good by denying the issues that were there...

And then he walks into the Principal's office on Monday morning to report to the Principal that another student should get in trouble for their actions at a football game. He proceeded to explain that he "took the kid down" because the other child kept asking to fight. He was defending his friend. So finally, Brennan just "had to fight him" and wanted to make sure that the other kid got in trouble...the principal was laughing because she had not experienced this situation before...the classic FASD reasoning at it's finest. And that was just the first of a series of issues this week.

I feel sad that I didn't look into medicating Brennan's ADHD. It is tough to get a rebellious 13 year old to start taking med at this point. I did get an IEP and a formal FASD evaluation which confirmed my suspicions. It breaks my heart to see him spiralling down in the last few weeks.

So, I fear that we are now entering the phase of juvenile delinquincy. And he still is just my little boy...funny, sensitive, kind and smart. It breaks my heart...but I am not the first to walk down this path. I am not walking it alone...and that gives me hope.

A perfect Sunday...

2011-09-26T06:17:00.000-05:00

Some days are just perfect. The sun shines. The air is crisp and cool. The mood is calm and relaxed. Sunday was that kind of a day. Mark came up to the apartment with the kids who were healthy to spend the day. They didn't realize that Elijah had been discharged...and they were so excited to take a walk outside with him. He was so excited to see them as well. It was wonderful to hold them again..to see their smiles, their delight, their tender hearts. They are so gentle and kind to Elijah..even though I wanted to keep the focus off of Elijah for a few hours, and let the time be about the other kids..they held close to him and wanted to make sure that he was having a good time. There is nothing better for a Mom's heart than to see children reach out beyond themselves to care for another..Today, was that kind of a heartwarming day.

The evening we arrived home and the next day following were so overwhelming for me. There were a series of issues relating to the IV meds that Elijah came home on. The hospital didn't send the order on time. The company who was suppose to deliver the meds didn't. The educator who was suppose to teach me about administration didn't do that part of the training. So, by 11pm the first night at the apartment, I questioned whether we could really do this at home. With my son's life at stake, my anxiety was running high. Far too many what ifs and insecurities of my own abilities to do this were racing through my head. We had come so far to make a mistake now. I was scared.

Thankfully, one of Elijah's home nurses came for the training on the night he was discharged (After working a 12 hour shift with Isaac!) If I hadn't had her here to work alongside of me through our first evening and next day home, I think the doubt and fear could have overtaken me. Even with two of us, we worked nonstop to get the meds schedules figured out, learn how to give drip IV's in home style, and get all of his cares done.

By Sunday, I had premeasured all of the med doses for the next day and had them labeled so that I could easily see what needed to be given when. I double and triple checked all that things that were on my mind. We organized the apartment so that the supplies were right where we needed them. By the time Mark and the kids came to visit, I was able to relax and enjoy time with the kids. Playing outside, hanging out in the apartment and doing all the things that we would have taken for granted before. It was so good for my soul...

Today, we head to the clinic for our visit outpatient visit. We will go everyday for bloodwork, infusions, transfusions or any other fusions they can think of. He has not had blood work since Friday..the longest he has gone since transplant. I will be glad to get a glimpse of what is going on that can not be seen with my eye. They say to plan on staying for 8 hours but it could be just a few hours if all is well. I am not sleeping well..can't tell if it is that I need to sleep with one ear open waiting for the next alarm to beep or if it is just that my body is not used to getting much sleep. Either way, I can get up here and not have to worry about waking the whole family...I will enjoy the late night solitude while I can.

Our new normal...it is hard, but it is good.

Leaving the hospital...

2011-09-25T11:15:00.000-05:00

It was early evening before Elijah was discharged from the hospital. So, armed with a shopping bag filled with 29 medications, an appointment at 9pm with the infusion team who was bringing the IV meds and equipment, and holding the hand of the sweetest little boy, I walked out of the hospital with my son for the first time 9 1/2 weeks.

If you remember Ariel from "The Little Mermaid", than you have a glimpse of what it was like as we drove off to the apartment just across the river.

"Mommy, look at the trees..."
"Oooohhhh...Mommy, is that the transplant (aka hospital)?"
"Mommy, I see the buildings. That's soooo cool."
"Those are REALLY bit trucks, Mommy!"

As if for the very first time, Elijah was filled with excitement over the world and all that it is filled with. His wonder and amazement at all the sights and sounds was captivating..refreshing ..heartwarming. His joy and innocence was instantly contagious and I could see the beauty again that had long lost it's charm. The world was new again..and it reminded me that it's beauty reflected just a glimpse of the creator who made it. It was a series of magical moments and I did not want them to end.

I could never have imagined that I could love this boy anymore than I did before. But, in these moments, I was filled with such love and utter joy at the little boy he had become...the one that God had created him to be. At five years old, he has faced more than most of us have in our lifetime. And he did not lose his innocence, his joy, his kindness, and his precious sweetness. He has not lived for a moment feeling that the world owed him something because he has suffered...He did not question God and His love through it all. He has not complained or whined or even worried much. He has taught me more than I knew I needed to learn..I simply didn't know that I could love him any more...

I have learned so much about the heart and soul..when a heart is full..then maybe it is time to stretch it..expand it..it won't snap..it will stretch and expand...to hold even more love...if we are willing to stretch the limits, our souls expand to hold it all. On our wall at home, it says, "Where there is God, there is love. Where there is love, there is room for one more." I wonder...What if we had not been willing to stretch our hearts beyond what seemed to be full already? What if we had said no to God when he asked us to adopt this little boy? Would we have learned the lessons he wanted us to learn? Would I have missed out on the blessings God had intended to give me through our life with our son?

Elijah has changed our lives...we would not be the same without him..He has ministered to my aching heart with his smile....his innocence and his positive attitude. Last night, as I tucked him into bed, as he was hooked up to IV meds and TPN feedings, and a tube feeding...as he barely had energy to crawl up into his bed, he asked me to read him another Bible story..."Just one more, Mommy." Thank you, Elijah, for reminding me what is really important in this life.

Ready for discharge...I think..

2011-09-23T13:53:00.004-05:00

Well, I am not sure how I feel about leaving the hospital. We have cleared out most of the stuff that had accumulated in the room in the past 2 1/2 months. We have started to say our goodbyes and make check lists of questions we need answered. I am not sure what to think.. But, when I weigh it out, it sounds like it is feasible. We spoke with the ENT and Infectious Disease Doctors..The attending doctor (who sees patients at the hospital for two weeks at a time) is the head of the department, Dr. John Wagner. He is super nice, obviously knowledgeable and really willing to listen. Elijah still has adenovirus as I have mentioned. He also has diarrhea that looks suspicious of C-diff...something common to acquire if you are on lots of rounds of antibiotics. He is leaving the hospital with 29 prescription meds to be filled by the pharmacists here. His blood pressure is up and has required medication to bring it down and his temp is not high but seems to be inching up.

So, you can see why I am a bit apprehensive....but (and here is the internal list I keep repeating to myself)...we are five minutes from the hospital. We can check his temp and blood pressures as much as needed. We have 24 hour access to doctors if needed. We can be readmitted at anytime. We have PHS (pediatric home service) that is coming to set up IV and TPN feedings...and they are always available on call with questions.We go into the clinic every day for labs, cultures, weight checks or anything else needed.
I think we will be just fine. really I do. I think...

day +56: uncertain discharge plans

2011-09-23T09:02:00.001-05:00

All of Elijah's favorite nurses and care providers are working today..yet another gift! The doctors just came by with a look of apprehension on their faces. The adenovirus was still found in his blood, urine and stool. The levels had actually increased quite a bit since the last study. Clinically, he looks great. But, his body is still fighting this unpredictable virus. They are consulting the infectious disease staff to see what they recommend. He could possibly leave on Cidofovir...the medication that treats adenovirus. But this med is the one that is hard on the kidneys. It is given intravenously and is about a three hour process. Blood levels and kidney function tests are essential.

I have expressed to them that we will stay if they feel that would be best...and if they feel it would be safe for him to be outside of these walls, we would do that as well. We have come this far, I don't want to be taking any unneccesary chances.

He has been talking about going out of the room a lot this morning..his dreams are not big..just wants to get out and see the 6th floor and see the pictures on the wall. Then he wants to go potty in the bathroom on the 2nd floor. He doesn't ask for much! He is even wearing shoes for the first time in months...and was so excited to put them on. He hasn't been out of the room for weeks now and if he stays, he will still be in isolation. If they do decide to keep him, please pray that he his little heart will not be crushed.
I will keep you updated...

Discharge and the cross...

2011-09-23T07:43:00.000-05:00

Elijah's temp is stable..and discharge plans are still on. We have the choice to leave today, or anytime over the weekend. Because we are comfortable with administering IV meds and TPN feedings through his port, it is up to us. Lord willing, we will pack things up and leave this afternoon. I get goosebumps just typing the words...

Getting some red blood cells for the road..these are the kinds of last minute things that get done around here!

I am nervous. I am overwhelmed with praise. I am grieving. I am giddy. I am in awe of God's touch upon our precious son's life. I am aware that this is just a transition..not the final chapter in this BMT journey. I am amazed as I look around and try to imagine how we made it through a 9 1/2 week hospital stay while caring for 9 1/2 children (I am counting Tyler as 1/2 because he about that much self sufficient~!)
I have a lot of questions racing through my head..it takes so much planning to set up a hospital room in a rented apartment on a college campus. As I was making my lists, removing the precious artwork that Elijah's friends and brothers and sisters had drawn for him, I could not shake the feeling of grief.

I felt grief over the loss of time with our other children...
Maisy turns four next week. Where did three go?
Jordan started to play football for the first time...I wasn't there..
Life kept going on at home without us..
It seems that joy and grief are close friends...the odd couple of friends..
but when I see one of them stopping by..I know the other is not far behind.

And just as the waves of grief were rolling in, Elijah and I were given something so spectacular. A sunset so bright its rays of light filled our hospital room. The rainbows it created bounced off the walls...the IV poles, the sterile sorroundings. It was a light show like nothing I had never seen..or had the eyes to see in such a way before.

And as the sun began to set, it slid behind the cross...illuminating it. The cross...I could barely see it before..without the light. That is just what I prayed for all along..that God's story of faithfulness through Elijah's life would illuminate the cross. I prayed that everything else that did not matter would be drowned out by the light of the cross...

The grief was gone...in that instant...

There was no more grieving over suffering that my little boy has endured..the victory of life and death has already been won. Our hope is in the cross. God has shown his grace and mercy through Elijah's journey. He has wiped our tears..he has held our trembling hand..he has listened to our hearts..and given us peace when it made no sense to have it.

There was no more grieving over lost time with my other children...we have Jesus. How silly it would be to grieve the mundane, when we have been given a chance to show our kids what faith looks like when life gets tough. Our faith has grown together even though we have been apart....God has taught them so much more in these last months than I could have ever have in a lifetime. 10 lifetimes...

Few moments have been wasted on the unimportant as we faced this battle. I want to have just one desire and that is to live my life in a way that reflects my faith in a God who is so worthy...and on the eve of discharge..I saw it with my own eyes.

We have a kind and compassionate Father who scooped us up and held us tightly through this journey. He will not let us out of his tender grip...he has been so near to each of us...reminding us of his never failing love and compassion. He has carried Elijah through the pain, the struggle and the fear...and there are just no words to express the praise that fills my heart...

In an effort to share this story, I am reflected in His light...
This journey is not about us...but it's all about His story that is written through our lives...

...and may it be that my words and actions reflect the light that illuminates the cross.

...pointing to the cross..that is where I want to be and what I want to do..for as long as I live.

Kindergarten in the hospital

2011-09-22T09:51:00.000-05:00

Miss Debra comes each morning at 9am for an hour to work on school stuff. It started out rough until we set up some structure to his class time. We limit interruptions, we have a written schedule of the activities that will happen during that time and we keep things moving...without a lot of down time. He loves it and looks forward to it each morning. Miss Debra will continue school once we leave the hospital each day at clinic.

It warms my heart to see him smile. He laughs and teases...and is enjoying all kinds of new books that he reads to his teacher. Today, he was answering questions about himself...like most kids do in kindergarten...things like name, pets, age, height and weight...only in the hospital would a kid know the answer (in kilograms) to exactly how much he weighted..as he yelled 18.7 without hesitation! I guess if you get weighed twice a day and have an amazing memory, you can do that!

His spark is back..his precious, silly and wonderful little personality has returned full force. Even with his fragile status, he is healthier than he has ever been. God does miracles...what a gift it is watch it happen right before our eyes. This journey has been hard..and it is not over..but God has chosen to teach us so much, to pull us into his loving embrace..and to deep our assurance that He is sovereign, He is merciful, and He is good...all the time.

day +55: Temp is rising..

2011-09-22T08:04:00.003-05:00

Just as we thought we were getting out of here, Elijah's temp is creeping up..it is 100.2 right now...100.4 and we stay at least 3 more days. Could you pray with us that he isn't developing something else?

Plans for discharge!

2011-09-21T22:31:00.003-05:00

We are making plans to be discharged from the hospital on Saturday. Lord willing, on that day, we will move to the apartment near the hospital. There is alot to do between now and then and will be busy getting ready to continue his care there. Tomorrow, we will review all the cares that he will need...TPN feedings, IV medications, daily clinic visits, and other details. Once he is discharged, I will be very busy. We will still deal with living in two seperate houses and Mark will continue to run nonstop managing the other kids at home...
Tomorrow, the 6th doctor takes over for his two week rotation at the hospital. Each time, we must get used to a new team. Hopefully, he will be on the same page as the last one regarding discharge. Sometimes, leaving the hospital can cause anxiety for families...but we are so ready to get out after 9 1/2 weeks, that we are thrilled to be able to take this next step. Just as each step has been in this process, God has graciously given us peace and sustained our every need. We rest in the confidence that He will continue to show us such love...
Elijah seems to be feeling great..he is silly, talkative and fun to be around! The nurses tell me that he is the first child with autism that they have treated on the unit. He has been an excellent teacher for them as they learn that Elijah's autism does not define who he is...they have enjoyed his sense of humor, his sweet personality, and his unique gifts and talents. Elijah has ministered to the staff at the hospital while they were caring for him. They have been blessed...and so have we.

Day +54 Post transplant: Teaching Hospital model

2011-09-21T09:51:00.002-05:00

So, the nurse that stressed me out yesterday morning turned out to be one of our best nurses...It wasn't her that needed to change...it was my attitude. She even asked to be on our care team this morning because she enjoyed working with him so much. I have yet to meet a nurse in here who was out to cause us trouble, I haven't met one who didn't care about their job. Some have been able to work with Elijah better, some weren't a good fit. But overall we have had a great run here at the hospital. The room has been beautiful...We have both slept well despite nurses in the room nearly every hour. When I have had a concern, I have been listened to and changes have been attempted.

I must admit, we entered this hospital with a bit of an attitude. The University of Minnesota was not our first choice...our heart is down the block at Minneapolis Children's Hospital. Not because of the medical care...we have found the doctors to be excellent in both systems. There, we have seen an emphasis not only the medical issues that are going on, but also the whole child and their whole family. We have been spoiled with excellent care there. For us, they are "home" and the University is just a place we visited when services (like transplants) couldn't be done there..Visiting the U of M over the years always left reminding me of why I love our first home.. Children's health care.

We have had some rough times in the past with a system that needed change when our children were younger. We have dealt with doctors and staff who have not been sensitive to the unique needs of our special needs children. This is a teaching hospital and that is the emphasis above other things like family centered care. We appreciate the teaching emphasis and I welcome every intern and resident to learn about Elijah...because I know that years from now, when I child comes in with an unknown condition that includes bone marrow issue, pancreatic insufficiency and skeletal abnormalities, they will think of the little boy they met when they were in residency. I want them to remember SDS and the other unique conditions that my children have. And without teaching hospitals, we wouldn't have the excellent care we receive anywhere.

Despite our original misgivings about the hospital, we have found our experience here to be excellent. The staff have proven to be amazing. We tell our children not to judge a book by it's cover..and yet I so easily slipped into that myself. I was wrong. This staff genuinely rejoices with us when Elijah is doing well and suffers with us when he is not.

But my grumbling heart has been exposed. My quickness to judge has been revealed. My unwillingness to let go of the attitude that we deserve more... The self pity...ungratefulness has been displayed...God has so graciously displayed my sin for me to see...He didn't hit me over the head and crush me with the weight of my own sin. Instead, as I was quick to judge, he so quickly reminded me of my own heart...he has illuminated His truth...that he who is without sin should cast the first stone. The teaching hospital model is working within my heart...Jesus was not sent to heal those who were healthy..instead he came to touch the wounds of the sick...He has touched my heart..bringing me to repentance..and lifting me up out of the muck. There is no room from petty judgement towards others up here in the glow of His light. A heart filled with gratitude has not room for entitlement and pride.

I just want to be closer to my Savior. He has created a longing within me that drives me to want to cling to His Word..His truth..His character. And when he allows me to see the sin that gets in the way of a clear view of His goodness, He is teaching me..loving me in ways only He can.

Thank you Lord, for every minute of this trial you have given us. Thank you, for the forgiveness you have extended to me...for the lessons you have taught me...for the joy you have filled me with..a joy that is driven by a desire to know you more...

How can a young man keep his way pure? By guarding it according to your word. With my whole heart I seek you; let me not wander from your commandments! I have stored up your word in my heart, that I might not sin against you. Psalm 119:9

Is now a good time to scream?!

2011-09-20T11:26:00.004-05:00

This is what 7 weeks in the hospital look like....each bead represents a procedure or a difficult part of this journey..beads of courage. He has two more weeks of beads to add today!

Nine weeks today. Nine weeks of a speaking about nasal drainage, temps, diarrhea, retchiness, urinary output and pain. Nine weeks of dealing with occupational therapists, physical therapists, speech therapists, doctors, interns, residents, students, social workers, child life specialists, radiologists, housekeeping staff, respiratory therapists, volunteers, "in hospital" teachers, patient care representatives and dieticians, nurse practitioners and nursing assistants and the nursing staff...

Nine weeks of saying the same thing over and over...and over...I don't even know what I think anymore, what I know anymore...what is important anymore in Elijah's care. I just would like to scream for a minute if you don't mind. Okay. Good.

A new nurse today...a nurse who knows it all. A nurse who contradicts everything I tell her. She has been doing this job awhile and I know that she holds a bigger picture than I do of the whole bone marrow transplant process. But, he is my son...he is my little boy and I have earned the title of expert on him. Listen to me and I will listen to you..we can put our heads together to give Elijah the best of care..but it takes two. Meet me in the middle and we can go from there...

Elijah is doing well today. But, his nose drainage has turned thick and yellow. That is if you talk to me. It is clear and runny if you talk to the nurse. I had a feeling that I was going to get this so I kept the kleenex to show the doctor...funny how you just know when you need to do something like this. I bet you are just as sick of hearing about nasal drainage as I am?!! Thanks for sharing in my pain...

So, I wish I could just go into a padded, sound proof room and let out a nice scream. If there was a sink in there, I would try to dye my hair as well...

That is life in cell block 4121 for today...

Grateful for a sense of humor that has still held strong..and a thankful heart that takes over most of the time! Grateful for friends who encourage me, laugh with me...and love me no matter what....

I don't want to be a complainer..a grumbler. God has heard our prayers and given us the grace to face all the bumps in the road that have come our way. He has been kind and gracious and patient with me. I want to extend that same grace to this nurse..to the staff that I interact with each day. God has given us many opportunities to share our faith here at the hospital...and I do not want my pettiness to stand in the way of a chance to share the message God has given us...God is faithful. He is the same yesterday, today and forever...as He loves us without limits. He has given us new mercies everyday as He supplies our every need.

All about Elijah..

2011-09-20T08:40:00.002-05:00

Outside of Elijah's room, I post some basic information about working with Elijah. The child life specialist at the hospital originally wrote something up..but that was before he was admitted. Things change pretty quickly with him...but his underlying needs remain the same..Most people take the time to read it before they enter the room. It has been very helpful. This is what it says:

Pleaseread before working with me! I am Elijah and there aresome things I’d like you to know before you work with me today:

I donot like clapping and cheering! Please don’t say “yay..” or cheer evenif I am doing something great...Youcan encourage me by being very calm when you tell me I did a good job.

Threewords: quiet,predictable and calm arereally good to remember when you are with me.

Ihave some stuffed animals that are my good friends. SOMETIMES,I like them to help me when I am getting my blood pressure and weight. Meowis my favorite stuffed animal. But I have many more that sometimes are on “timeout.” My animals may not be around, especially when I am not feeling well.

Ithelps me to have a schedule of what is going to be happening next. If you can,let us know when you will be coming so that I can know what is coming ahead.

If Iam really upset, don’t use a lot of words when telling me what you are going todo. Just get it done.

Ifthere are a lot of people in the room, try and allow just one person do thetalking. I get so overwhelmed with a lotgoing on at once.

I change my mindoften…please be patient with me. But, if I continue to change my mind…you cantell me to make a final choice and stick with it. I just might be seeing how far I can pushyou.

Donot ask me if I want to do something that HAS to be done. IfI don’t have an option, don’t give me one. Do give me choice about things thatI can control!

Youcan pretty bet that I am going to say “No” to any open ended question. Are youin pain? Do you want to me to listen to you?” I am going to say NO. If youreally want to know how I am feeling, do NOT say “Do you have any pain today?”I will say NO.

I love numbers, letters and elevators! I am asuper smart kid whose preferences change all the time…but my needs stay thesame. So just when you learn some of the basics about me, I might change thingsup! But one thing will remain the same…I need a calm and predictableenvironment with the ability to control some things in my world.

Communication in all forms

2011-09-19T19:41:00.000-05:00

Communication in all forms is vital. I have had a chance to observe different communication styles by so many different hospital staff people as they constantly stream through our room. Even the written signs throughout the hospital strike me as funny...awww...when you spend 9 weeks at a hospital day and night, there are many things that entertain you that you may otherwise not have paid any attention to....like these signs:

This sign causes so much confusion. People read the first three words..push on bar...and then a VERY loud alarm sounds.... for a very long time....right outside our room. You must have a name tag that needs to be scanned to get off of the unit. This is the only sign that even begins to explain this...and it doesn't explain it well. The fact is, by my informal study, most people don't stop to analyze the exit of the unit..they just push the bar...and I don't blame them.

No words necessary...

I'd hate to be on the 12th floor if they just moved the whole 11th floor over to another building!

9 weeks...

2011-09-19T08:02:00.001-05:00

A quick update on Elijah. He had a great weekend...feeling better than he has in months. He laughed and giggled and was silly..those are all great signs. My sister stayed overnight while we attended the weddings and they both enjoyed their time together. He is getting sick of me around all the time and it was a great diversion for him to have a new face around.

His fevers have been gone for several days! He remains in isolation because of the adenovirus. If all goes as it is now, we could be transitioning to the apartment by the end of the week. There are two issues that need to be addressed..

The discoloration of his skin is a
part of an expected of the sluffing off
the dead cells that are leaving his
body. His skin got very dark and
as those cells are sluffed off, his
beautiful color is shining through
again. For now, though, he is speckled.

The first issue that will be addressed today are his sinuses. CT's have shown that they have been packed with gunk from before admission. As I look back at pictures of him from the beginning, he has always had issues with a runny nose. He has had four CT scans and the last one was actually the worst. There is talk of draining his sinuses so they could get a better culture of what might be lurking in there. The ENT will be coming to talk about it today.

The second issue is his kidney function. Because of the continued sinus problems, they started him on one last broad spectrum antibiotic, vancomycin. He has been on this IV antibiotic before without any problems. But, because he is on cidofovir to treat the adenovirus, his kidneys don't seem to be able to flush the vanco out of his system well enough. the cidofovir is hard on the kidneys and Elijah's blood tests are showing the stress on his them. His creatinine levels are rising. So, they stopped the Vanco for now since his levels of the drug were too high, until they get an idea of what the ENT wants to do next.

These are all issues that come up post transplant. I can not tell you how much relief we have felt having Elijah's transplant doctor working in the hospital for these past two weeks. She is thorough and listens to our input. This isn't about her. This is about Elijah..and she gets that 100%...with no ego getting in the way. She has been such a blessing to our family..and we are so thankful for her.

..wonderful weekend

2011-09-18T23:03:00.000-05:00

We had a weekend filled with weddings...it was wonderful. My sister stayed at the hospital with Elijah while the whole family attended two very special weddings. The photos above are from Alex and Josh Cox's wedding on Friday evening...it was a fairy tale wedding filled with joy. You can see it on the faces of everyone there. Alex is the daughter of our very dear friends, the Rumseys...you can feel their joy as they welcome Josh into their family.

There was something special about this wedding...Yes, it was beautiful...the flowers were unbelievable..(Alex and Diane are floral designers!) There were special, unique touches throughout the whole evening..but that isn't what made this wedding so special.

It was this couple. They grew up alongside of each other at the same Church. Their first kiss was on the evening that Josh asked Alex to marry him. The purity and commitment to each other is so evident...so rare these days. Their relationship from day one has been centered on their faith...on their shared love for Jesus Christ.

This couple is unique in so many ways. Their wedding was so amazing...so filled with all the right things...faith, hope and love. And I am so honored to know them. I can't wait to see where God leads them in their future together. It is going to be as beautiful as their wedding day....

And then on Saturday, we were thrilled to attend another wedding. We met Sarah five years ago, when she came to our home to help us care for Elijah's medical needs. We didn't know a thing about her before she showed up that day and she knew only that we had a son with a rare syndrome in need of some nursing care. Quickly, we learned of her precious testimony of God's faithfulness in her life. After graduating from Bethel University in Nursing, she spent several years working in the Philippines as a nurse in an orphanage. She made an impression on us from that first day we met.

For 5 years, she has worked in our home. She has cared for Elijah as if he was her own. Sarah and Elijah share a special relationship. Not only because they have spent a lot of time together, in good times and in bad...but also because before she was a nurse, she was a patient. At the same age as Elijah is now, Sarah faced leukemia that brought her and her family through years of hospitalizations and treatments. God has created a special place in her heart for kids who face incredible medical challenges. She is like family to us...and we would not have missed her wedding for the world. I can not help but smile when I think of her new husband. He is perfect for her...it is so evident..a rarity to see two people that you know without a doubt that were clearly made for each other.

Their wedding was as unique as the two of them as well...very different than the wedding the evening before..but just as uniquely beautiful and touching. There was such a warm tenderness at this wedding...two servants of Christ coming together...and there was an excitement in the room as their loved ones took time to imagine how God will magnify their ministry as the two of them join forces in marriage. Greg and Sarah serve the Lord in everything they do. They have servants' hearts and they share a desire to place their lives fully in God's hands. Every second of their wedding shared their testimony...and their love for each other.

Greg and Sarah stopped by the hospital to visit Elijah before they left on their honeymoon. My heart that was swelling with joy as we were able to witness the amazing love between these two and their heavenly Father, also ached as we sat at the wedding without Elijah by our side. But, Greg and Sarah took the time on a weekend that could have been just about them to share it with a little boy who loves both of them so dearly. I am so thankful for them in our lives...we have been truly blessed by both of them.

Of course, Elijah does think that Greg lives in the zoo...it's a long story but it is so funny every time he says it...we haven't bothered to correct him...sorry Greg..guess you are officially part of the family.

The question of meds...

2011-09-15T07:24:00.001-05:00

I have talked about, read about and thought alot about the topic of medications lately. It is beyond my comprehension to understand how scientests formulate medications that can target specific bacteria, specific cells that need boosting or specific chemicals that need tweeking in the body. Fascinating to me...but beyond by scientific understanding. And yet, as I sit in the hospital room and see the IV stand near Elijah's bed, with line after line of medications being administered to him to him post transplant...medications that play a critical life saving role in his treatment, I am grateful for those scientists who do.

I speak with so many families who are "opposed" to exploring the road of medications to help their children with ADHD, FASD and other mental health diagnoses. Frankly, I don't think I have met a parent who wants to have their child "on" something...I sure know that I don't! But, if concerta and his cousins were suddenly pulled off the market, I would be a ritalin bootlegger because a few of my kids would suffer without it...that I know for sure.

Parents don't want their kids on medications..what they do want is to see the behaviors that they are dealing with to subside. Not because they are lazy or not spiritual enough and don't want to have to discipline or because they want a quick fix for their child's out of control or emotional behaviors. No different than if there child were having hives every day...a parent would bring their child to the doctor and expect that the doctor could help with the symptoms. Our mind and body are separate entities in most of our minds..and we see the treatment of mental health disorders often very differently than we see our physical health.

I wish I never had to walk into a child psychiatrist's office when McKenna was young. I went kicking and screaming, afraid of the slippery slope I might be stepping onto. But, I didn't kick and scream very long, because I was so tired...so tired of dealing with behaviors that affected our family 24 hours a day. What if it was just me? Maybe I was the one who needed the help because I couldn't handle her behaviors? I had taken every class and even hired a behavior analyst at that point to help us with our parenting technique. But, the brain chemicals in McKenna's brain were just our of whack, and she needed pharmaceutical intervention. And we learned quickly that there are safe and effective medications that can help.

And so as I cried through that first appointment, Some of the tears were about the sadness I felt and some were out of pure relief that maybe we could see the child we once knew again...one who didn't scream all the time. From that day, I have rarely looked back. It was the right thing to do for our daughter..and we were so relieved to have gotten over our fears, our misconceptions and our pride as we walked through the doors of the psychiatrist's office.

I hesitate to say to you out loud that 6 of my children take medications for mental health conditions including FASD, depression, anxiety, neuroirritability and sleep disorders. I shouldn't feel hesitation but those of you looking into my world without having lived with a child with mental health disorders may make assumptions about me that are not accurate. But, I think I am over that now...because I have stopped living my life based on what other people think a long time ago. I love my kids and I have fought hard to meet their needs. I am in the world of extreme parenting and it takes extreme measures to give my kids the best chance at a productive life. And sometimes, medications are a part of that equation. And when they work, they are a gift beyond what you could imagine. A chance to see a child through their behaviors and mental health issues..

I know that there is public opinion that psychotropic medications are being overused for children who have mental health disorders. I am sure that may be true...but I know without a doubt, that my kids need the medications that are prescribed to them as much as I need my insulin. I know that...I have seen what happens when they do not have the assistance of a medication to help their brain send the right messages to their body...when they are so hyperactive that they can not be kept physically safe, when they are so impulsive that they are not safe physically, emotionally and sexually. I have seen the anxiety in a young child's eyes that is crippling and I have seen really smart children be unable to learn because there minds are racing or too stuck on something. Several of my kids would not be able to participate in community activities and a few may not even be able to live in our home because of agressive and disruptive behaviors. It's the big leagues we are talking about...not the tweak of personality flaws.

It isn't an easy road...finding the right medications the right combination, and the right doses. It is a long process of tweaking and observing symptoms and possible side effects. There are always times when I think that maybe they don't need their meds..and then they inadvertently miss just one dose, and the teacher is calling or the bus driver has written a behavior report. I do believe that even the most oppositional of children want to be successful..they don't to feel out of control, fearful or depressed. Medication does not (and should not) change who your child is, it's role should be to allow them to be who they were created to be...

So, today we are meeting a new psychiatrist. We have had the same specialist since the beginning of our medication journey until his diagnosis of pancreatic cancer...we love him dearly and miss his thorough and compassionate treatment of our kids. But, we must move on, and by recommendation of many friends, we are beginning with a new psychiatrist, Dr. Elizabeth Reeves. It is hard to begin again, but I am also welcoming a fresh perspective..maybe she will have insight that we had not seen before in treating our kid's complex medical conditions. I wouldn't stop at just seeing our pediatrician when I needed a hematologist for my child's bone marrow disorder, and I wouldn't recommend that you do either (of course, many of you have no other option.) Find a specialist. It isn't easy. But, when you find the right one, it will be worth it. You still hold the ultimate key to your child, but the right professional can help shine the light on the lock for you...

You might just unlock a whole new world for your child...and your family.

What are you thinking, little one?

2011-09-14T20:41:00.002-05:00

What are you thinking little one? What are the questions tucked deep within your mind? How I wish you could tell me your fears, your hurts, your dreams. Oh, if I could climb right in and help you find the words that you do not have access to..words that would give me a glimpse of who you really are, of what you really think...and are just not able to be share with the world.

But God knows your heart...your dreams, your fears. He can speak the words you need to hear deep within your soul. He can meet the needs that we do not even know that you have. He can hear your heart...even if we can not.

What are you thinking little one? God is listening..and He will never stop.

Day +47: A grateful heart

2011-09-14T09:33:00.000-05:00

To thou who has given me so much... Grant me one thing more... a grateful heart.
-George Herbert

God has given me an amazing tutor...the most least likely of teachers--a little boy with autism and a life threatening illness. A little boy who only gives me glimpses of his heart...he shares his thoughts on his timeline..not when I try to find out what he is thinking.

I must wait...and learn from him when he is ready. There is no pushing this child with autism to tell me what he is thinking..especially feeling. I must be ready to listen when he is ready to talk. Not in my time, but in his.

Not in my time, but in His...waiting on God as he reminds me that His timing is perfect.
A lesson learned.

I must not wait to live...Elijah can't wait to start his life when he feels better or when things are going well for him. He lives each day unaware of all that he has been through. He doesn't spend much time wondering "Why me?" Life can change in an instant...it is fleeting. Elijah He just lives each moment...one day at a time.

I want to live every minute of my life...not waiting for things to "slow" down or the kids to get out of crisis. I want to live unaware of what I am going through and remember that no matter where I am and what I am dealing with, my task a Christian remains the same...to glorify God in everything.

To Glorify God in all that I do....with a joy that comes from pursuing God in every moment.
A lesson learned.

God is teaching me to be grateful for all things...Elijah is so happy with his "perfect'" drink by his side...his new found love for drinking water. He accepts the small world that he is living in right now. He finds comfort in what would seem unbearable to most people...a bed and two brightly colored blankets by his side. He does not ask for much...just a few things that give me peace in his world. He can not comprehend the deeper theological implications of finding contentment in all situations, but God has given him peace in the midst of struggle. Quietly, but predictably, Elijah says "thank you..." as doctors and nurses come in and out of his room...often causing him discomfort and anxiety.
"Thank you..I don't need anything..." he tells them.

To be grateful in all circumstances. A grateful heart changes everything...it replaces selfishness, and jealousy..and frustration, and resentment.
There is no room left for these when a heart is filled with gratefulness.

So, Lord, continue to grant me one more thing....a grateful heart.
A lesson learned.

Temps are back up...

2011-09-13T16:45:00.002-05:00

Just thought I would let you know that Elijah's temp is back up. I will still rejoice in his one day of fever free status. But, no one is talking discharge around here..and so I think they have a much better perspective of the up and down nature of things in the BMT unit.

He has had a rough day..there are just too many people coming in all the time. It is overwhelming for any body, let alone a child...with autism. He is feeling out of control of his world and the sensory overload of all the different stimulation that he has no control over has been really getting to him these last days.

We are working on developing a schedule for him so that he has a little more predictability in his day. But with so many different people in here from all different departments..the task is huge. I wasn't sure I wanted to take it on..but since he has a fever again and I am not dreaming of discharge anytime soon, I might as well take on the task. So, off I go...

Virtual support goes live...

2011-09-13T12:08:00.003-05:00

I used to attend support groups for adoptive parents. While there are other concerns that are often addressed in support groups such as these, it is apparent that FASD and it's issues, are the ones that most parents feel ill equipped to handle on their own. Within any group, there are parents who have recognized the diagnosis of their child and there are almost always parents who are unaware or unable to accept that their child's brain damage from fetal alcohol exposure. There is usually a parent who is so entrenched in the FASD world, that they see all childhood unwanted behavior as rooted in FASD even when it may not be the case. Sometimes, there is a parent who spends the time one-upping the group...with horrendous stories sure to top all others in the group. And at different phases of our life, we may be all of those people.

This extreme parenting we have been called to can be a lonely and often maddening journey. And there are times when the road seems particularly treacherous..like adolescence, or times of alienation when family and friends silently fade away..because of lack of understanding that FASD. Parents are often reeling from the diagnosis and are dealing with the hurts they have endured by those who have told them there child was fine and implied that they were problem..not the permanent brain damage caused by alcohol.

When parents find themselves entering on the on-ramp of this road, they are often confused, overwhelmed and lost without a GPS available...in need of help. Sometimes the GPS they have been given, by another parent, a book, or a doctor, seems to be leading them in the wrong direction and what they are hearing from the voice in the car doesn't meet up with what they are seeing right before their eyes on the road they are traveling on. The mixed messages get so overwhelming that many parents find themselves throwing the whole GPS out the window in an attempt to find their own way.

Everyone else seems to be speeding by them as they attempt to merge into the traffic that has now become their life. If parents don't look in the right places for the support they desperately need, it is like a frustrating attempt to merge onto this new road when everyone else seems to be unable to see you as you attempt to enter their lane. Worse yet, some see you and speed ahead..not allowing you in.

And then there is that person who sees you...they make eye contact...they slow down to let you in..and smile. You feel a calm warmth from that person who isn't so absorbed in their own needs that they have room in their world to acknowledge you. Those are the people that make support groups worth attending.

Having been on the road awhile, I have made connections with those that I consider my support group. My closest friendships have grown from support groups of all types. Many of you, though we have never met, share this roadway with me (I am the old, gray car with all sorts of dents in it!) You have slowed down and let me merge...and hopefully I have done the same for you. I have found such support in this virtual world. I no longer feel like I "should" attempt another support group...I find my support here and I hope that I am able to give support as well in this format.

And one of the MANY blessings that God has given me during our hospital stay is the opportunity to meet with my fellow bloggers and amazing friends (Dorothy and Barb) for a late night rendezvous here at in Elijah's hospital room. We all attend the same Church but have only actually sat down in person a handful of times together..with 26 kids (at least 10 with FASD diagnoses) we just don't find the time. So, for the last few weeks at the hospital, after Elijah is sound asleep, my friends tuck their kids in bed, grab chocolate and come on up to the hospital. We talk about tough stuff, we listen and share our joys and struggles and we laugh so hard we can barely stop. I look forward to their weekly visits like you would not believe...We don't get much sleep on the evenings we get together...but I smile every time I yawn the next day!

I only wish that we could include all of you in our madness...you would be blessed as well..while we can't have all of you with us...we will certainly do our best to eat some chocolate for you.

Day +46 Post BMT: Officially NO fever!

2011-09-13T07:20:00.001-05:00

Elijah's fever has definitely taken a downward turn...slowly but surely. That is so encouraging! It seems like the adenovirus that was found in his blood, urine and stool is responding well to the medications they are using. This is the med (Sidovofir) that can be hard on the kidneys. Some of his labs relating to the kidneys (creatinine and urea nitrogen) are above normal values, but not off the charts by any means. His labs are looking really good. His platelets (31) and hemoglobin (10.1) are holding their own without need for transfusions in about 5 days! He is doing really well. Some lab results are still pending but if they come back looking good, then I would think we would be on getting a visit from the discharge coordinator again. And the always tentative planning can begin...maybe Monday?

God and His people have been showering us with his grace and provision for all of our needs during these past 8 weeks in the hospital. We are greatly blessed.

Hopekids...one of our favorite organizations had their annual Hopekids festival right here at the University of Minnesota campus on Sunday. I was able to sneak away to attend with Mark and the other kids. Every year, it is one of the highlights of our fall! All the kids love it and start asking about it months ahead. Some like all of the food that is donated by local business. Others like all of the endless fun activities available to do. The shows and demonstrations by the Gopher Athletes that volunteer for the day are a hit with the kids as well. But my favorite part of the day is getting to connect with other families who have their own personal heroes.. their children who battle life threatening illnesses. It is so great for the other children to see that they there are other families out there that deal with the same kinds of issues there family deals with....and they can still have lots of fun!

Climbing walls, the velcro wall, bouncy houses and slides..that is just the beginning!

Isaas was so excited to be at the hopkids festival..was it the cotton candy that was the best?! I am not sure what he would tell us....but I think it might have been seeing Mom.

Aaron's favorite place was sitting right next to the dunk tank! He loved to get splashed each time Josh Taylor, the Hopekids director for the Minnesota chapter, got dunked!

I didn't know you could make a squirt gun out of a water bottle with nothing but your teeth..but the boys mastered that skill early on...they are overachievers!

And, my favorite picture of the day! I was thinking of titling this, "Kiss my small horse...", but I now that would be tacky now wouldn't it?! Isn't that a sweet picture?!

Posion Control on speed dial...

2011-09-12T11:25:00.000-05:00

Years ago when my FASD'ers were younger, I had poison control on speed dial. Liquid soap, vitamins, and drinking a juice box through a colostomy tube (now that one is a story all of it's own!) were just a few issues we have dealt with. Not only did we have the need to make our own share of calls, so did my dear friend and fellow Mom to a special needs son. who didn't want to have to place yet another call from their phone number...for fear that child protection would be knocking at their door.

Their son swallowed so many different foreign objects, his Mom became an expert in the fine art of post-intestinal tract treasure collection. Moms of typical kids might be thinking...why don't those Mom's make their home more "childsafe?" For some kids, there isn't a home in the world that could keep them safe enough. All the precautions in the world, do not stop some kids. Once, our friend's son took a picture off the wall and swallowed the nail that held it up..like I said, only by the grace of God are some of our children still alive!

As I have shared before, Elijah has been drinking water. Since he has never taken anything by mouth, we have been celebrating every sip. Yesterday, he asked for a green water bottle. He has a line up of open cups, sippy cups, water bottles and even medicine cups. But, when he asked for a green water bottle, I was eager to get it for him. So I asked some more questions. What does the water bottle look like? Not really expecting him to be able to tell me more, I was surprised when he answered..."There is a man on it." Wondering if maybe he wanted a water bottle like Kaden has...maybe superman or spider man or something, I asked "Does the water bottle have words on it?" With a big smile on his face, he yelled "Mr. Clean!"

I could not hold in my laughter at the point! We have never talked about what is a drink and what is not...I have never had to worry much about Elijah drinking or swallowing anything dangerous because he never put anything in his mouth (Those who know Elijah would be chuckling right now knowing that the only thing Elijah eats is an occasional "food" that comes from his nose.)

So, I guess I better put that poison control number back on speed dial.

And since both Elijah and Mr. Clean are both bald...sounds like a Halloween costume to me! Any one have a spare earring?