The question of sin...and FASD

We have all been to WalMart at sometime in our lives I am sure. Some of us more than others. I am a Target kind of girl..I even have a red wallet that I keep all of my Target coupons, prescriptions and gift cards in. But on a Sunday evening after 10pm when I need a drug testing kit, WalMart was the place we headed. It was one of those moments you never imagined when you dreamed of parenthood....not for a second did I imagine that I would be waiting outside a Walmart bathroom while my son takes a drug test..but that is our reality these days.

Our son runs away. He steals anything he can gets his hands on. He refuses to go to school. And now it is confirmed that he smokes marijuana. He has FAS. And each time he crosses another line, we wonder what will be next for our family.

He is a sinner. I am a sinner. But, there is one thing I want to make clear. Sin is sin regardless of the sinner. In a world of relativism..where each person decides for themselves what is right and what is wrong...the concept of absolute truth has often been lost. Stealing is sin. Lying is sin...regardless of the sinner. What I wrestle with is not what is sin and what is not..but what I wrestle with is the element of accountability regarding the sinner.

Brain damage caused by Fetal Alcohol Syndrome (FAS) clearly effects the ability of my son to stop the impulse to engage in behaviors that lead him to sin. Does he sin when he lies and steals? Absolutely. Do I sin when I spend time deciding whose sin is worse or when I feel better about myself when my kids are behaving well? Absolutely. Will he be held accountable for his actions in the same way that someone who is not effected by brain damage? That is the question. Some of his behaviors are within his control and as a parent, we need to help him understand the consequences of sin. Some of his behaviors are a direct result of his disability.

The Lord looks on the heart...we see the outward appearance. On the outside, the sin in Jordan's life is running rampant. It breaks my heart. It causes me to fear for his future. Reality is, he may not survive through his teen years. His behavior is dangerous, reckless... He has three charges filed against him and now we will be heading into the juvenile justice system. He has spoken to the police more times in one day than I have in my life. Clearly, he is out of control..

But, in the midst of all of this, there is a young man who often asks God for forgiveness for the sin that he can see in his life. He wants to change. And then the next moment comes, and he steps right back into sin. And I do believe that there are times in the midst of all of this murky, muddy mess that he has created out of his life...I do believe that when God looks at his heart..he sees something much different than we are seeing on the outside. He sees the heart of a broken child.  He sees the forgiven, cleansed heart of a sinner saved by His grace. And when my son steps into sin over and over again, His Loving Father is right there pouring our abundant love and grace. And each morning I pray that God will protect him from himself...and that he will draw near.

It is not my role to judge someone else's sin. It is not my job to figure out how God should decide to share his forgiveness and grace. I just know I have a son who is broken...by his sin and by his disability. We are a family broken and hurting as we watch our child follow a destructive pattern of behavior. There are few people that I can share our struggles with, especially within the Church. I understand how difficult this is to understand to someone outside of this FASD world.

Even the most disabled of our children have sin in their lives. Will God judge them to the same standard as He will of someone without a cognitive disability of this sort? I believe His mercy and grace will be applied to each person according to the heart of that individual. He knows the heart, the intention, the ability of each of his children to stand against the temptations of this world. He knows Jordan's heart...and may He increase his faith in abundance.

I believe that my son's brain will be healed and made whole again on the other side of heaven. I believe that God will use FASD for His glory, in His time.  And I am thankful for the lessons I am learning each day... for the lessons in patience, grace, compassion, humility, and the faith as big as a mustard seed. My sin is magnified by the FASD in my children..and I cling even tighter to the one who has no sin...to the one who redemption for the sinner.

Everyday joys in the midst of struggles...

Last week, we were able to attend a few hours of the 1st Disability Conference at Bethlehem. Greg Lucas, who is my favorite blogger (and now my favorite speaker!) on disability was a part of the conference and I was so excited to hear him. It was so refreshing..so renewing to sit in a room alongside of so many others who have a heart for those who struggle with disability...who share in the paradox of joy and sorrow coexisting within one heart and mind. Dr. John Piper spoke of that paradox beautifully...and even though I left with just having experienced bits and pieces of the whole conference...the nuggets of truth I heard have renewed my spirit. It was just what I needed since I returned home that day to the sage of Jordan's extended "disappearance" from our home.   God's timing is so perfect..even when we may not always think so..He is good.

And in the midst of our struggles, we have such joy. We are busy with the kids always...with birthdays (those have a way of popping up every year!), and football games, and theatre productions, special olympics bowling, frog catching and all around family stuff. For each struggle that we face, their are 10 little triumphs to be celebrated...and our eyes are more open to see them all.

We are reframing our reality as it is now. There will be more struggles ahead..there are incredible struggles right now that we are facing...and yet we can see the bigger purpose...we are standing solidly on our feet again...and our dependence on Christ is has grown beyond our imagination. God has been so faithful. I feel like our vision has cleared and we can see the big picture...we can see the Hand of God. And it is good...

"Create in my a pure heart O God, and renew a steadfast spirit within me..." Psalms 51:10

Runaways and FAS

 The Martindale family has become well known to the Elk River Police..led by a nearly 16 year old with FAS. This time, his runaway behavior has brought us back into their radar. Jordan leaves for days without telling us where he is at. He begs anyone (and I mean anyone..) to drive him around..to let him sleep over. For the first time, we filed him as a runaway. He is so vulnerable. We could press charges, but we didn't. He lies and lies about his whereabouts and he when he finally returned today, he lied to the police about where he was.

He has FAS. He lives in the moment. He lies. He steals. He runs. He refuses to go to school most of the time. He doesn't think about how his decisions effect others. He has a normal IQ. He makes poor choices...and then he makes the same poor choices over again. He wants to do what is right. His impulsivity is too strong and doesn't allow his heart to guide him. He is a precious child. He is our son. 

We are so thankful for the police that are here in our city. They have been understanding and kind and have helped us to try and help Jordan understand the severity of his actions. But, reality tells me, his brain damage tells me, that his behavior is not likely to change anytime soon. And so we wrestle with making the right decisions for our son.

He is disabled...and yet on the outside, he just looks like a troublemaker...a juvenile delinquent.  And little we do, or the police we can do, will be able to keep Jordan safe from his own actions..he is a danger to himself. He is so very, very vulnerable. And it is heart breaking. 

It is frustrating. It is frightening. It is maddening to go around and around in circles trying to land on the truth..only to be reminded that we must let our desire to fill the gaps...to get to "the truth" fall by the wayside..because we will never have the answers that we seek to find. There will always be gaps in our understanding of where, when, who, and especially why. It is disheartening to know that this is just the start of some really rough times for our son...

And amidst all of the emotion, I feel calm...or is it numb? I am not sure. But, it allows me to not overreact...to hold my tongue..to speak from my heart. I believe that God has graciously given me this sense of calm to allow me to care for this wounded child He has entrusted in our care. And don't get me wrong...I have spent too much time trying to reason with him, lecture him, and even threaten him. And when that didn't work, I threw up my hands in defeat. But defeat, I believe, would mean our love for him would be lessened...and it only deepens. There is no defeat in this war..we are just in a dark battle right now. When I imagine what life feels like inside of this young man's head, I can only feel compassion. We love you Jordan. We will be a soft landing for you. We know that being 16 with FAS is a confusing time..you are scared, you are fighting your limitations, you are angry for the past hurts in your life, you are feeling lost and alone. We will always love you and pray for you. 

God is in control. You are no runaway from God. He has you in His sight always..and He will never let you go..ever...

My beautiful, beautiful boy....

Who would have ever known that Elijah would have come out of a bone marrow transplant with so many unexpected surprises in store for all of us. He is so happy....so smiley....so adventurous...so silly. He feels good..better than ever. Maisy's make a wish trip was filled with fun for Elijah...and he loved every minute of it. It was a re-do of his own trip...only this time he felt well enough to enjoy it.

We spent so much time speechless..watching him live in ways he has never lived before. He swam...he hadn't been able to be submerged in water for a year and a half. We watched him wanting to snuggle, to tease, to play with his brothers and sisters. He discovered roller coasters..and loves them.  As soon as he saw indoor skydiving, he couldn't wait for his turn.

In order to participate in indoor skydiving, you must wear a special suit, ear plugs, goggles and a helmut...each of these used to be insurmountable barriers for Elijah to participate in things that he wanted to. He just couldn't get past the sensory issues he had with all of this. But, he wanted to skydive. And he worked past his struggles, his fears. And we could barely hold it together watching him. We all were so near tears...so filled with emotion...didn't know whether to laugh or cry. Each time I see these pictures, I get choked up...I am soooo very proud of him. I am so humbled by the God given spirit of courage and strength he displays each day. He is a new boy. He is a survivor. He is ours. And we could not be more thankful that we have been chosen to walk this rough road with him these past years. He is a beautiful, beautiful boy...

Maisy's Make A Wish!

With over 30 pieces of luggage and medical equipment to maneuver through the airport, it was quite an adventure!

She earned her 1st flight wings in the Cock Pit!

Maisy and 3 others were upgraded to First Class on the flight there!

In the Limo on the way to the airport...Maisy isn't the only one excited!

Our Villa at Give Kids the World!

There is so much to share about Maisy and her wonderful Make a Wish experience. From the day we began on this journey to her have her wish fulfilled, Maisy has been the princess. And last week, as we left for the Give Kids the World Village in Florida...Maisy had the chance to meet the princess like she dreamed of.  We went to Disney world, Universal Studios, and Sea World. She even went indoor skydiving at Ifly. And then there were all of the wonderful activities and fun right at the Give Kids the World Village. 

Twelve of us. Two parents. Two nurses. Eight Children. It was crazy. It was hot. It was overwhelming at times. It was wonderful. It was a once in a lifetime experience for Maisy. You could even say it was magical.

I have so many pictures to share with you. I have so many moments that took our breath away to share. From the day Maisy's wish granters met with her to find out what her wish was to the day the Limo dropped us off at home, it has been a great experience. And not just for Maisy. All of the kids had a great time. Elijah was unbelievable..he was the most excited to try indoor skydiving..and I can hardly even think about it without tears rolling down my cheeks. He loved his time in Florida...and it was heartwarming to watch him have sooo much fun. 

So stay tuned..there is so much more to come...

The difference a year makes: BMT 1 year out!

 July 29th, 2011...The Bone Marrow Transplant as it occurred..Elijah sound asleep during the process.

 Our precious boy so fragile and sick...

90 Days in the hospital. 

80 days of fevers.

  Infections. 

Nausea.

Surgeries.

Scans.

 Mouth Sores. 

Pain.

Anxiety.

TPN feedings. 

Isolation. 

Bone Marrow Biopsies.

Transfusions.

Perplexed Doctors. 

25 medications.

Central line for 1 year.

6 months of living next to the hospital.

9 siblings dealing with the stress of a family separated.

 3 more readmissions for infections and surgeries.

New friends made.

Amazingly gifted medical staff caring for Elijah.

Unbelievable changes seen in Elijah's ability to handle medical procedures. Miraculous changes.

Countless friends reaching out.

Our every need cared for. 

Strangers touched by Elijah's story. 

A family drawn together through the struggles.

God's provision evident every step of the way.

God's love shown to us at every turn.

Faith strengthened.

Life changed.

Forever.

NOW:

100% percent donor marrow.

Successful transplant!

Only 7 medications (before transplant 

he had twice as many, 

during transplant quadruple that amount).

No more GCSF shots every other day.

Getting ready to go to school for the first time..

A happy, healthy 6 year old boy..

A God that was there through it all..comforting him..calming us through the unknowns..the uncertainties...

What a difference a year makes...what a difference God makes..

Elijah is a new little boy. We didn't fully realize how sick Elijah had felt through his whole life because sickness was all that he had known. Now, we see him free from so much of that pain.

 He smiles more. 

He laughs more. 

He hugs more. 

He interacts more. 

He plays more. 

He loves to climb trees...who knew? 

 A special organization called "Icing Smiles" made a dream cake for him as we gathered some special people together to celebrate his one year anniversary of transplant. He loves elevators and Caillou and so that is what she made for his cake.

 Elijah is still immune deficient. In many ways, we must think of him as a newborn. He is beginning his immunization series again as the transplant process wipes out all immunity. We need to be cautious of infections and be careful with his exposure to illness. His platelet count (89,00000), white blood count (4), and hemoglobin (9) are all  low...but that is not unexpected due the infections he has had over the past year. There are a few blood levels that the doctors will be watching closely, but overall...the transplant has given Elijah a new chance at life..it was a success. I say the words and then I pinch myself. It was a success..I so wanted that that I have had a hard time believing that it is for real and not just in my head. It has given us our sweet Elijah back to us...

Elijah is healthy. He still has a g-tube. He still has severe pancreatic insufficiency. He still has chronic lung issues. He still has autism. But he can live with these conditions. He couldn't live with bone marrow failure. So all those issues seem like nothing to us...because God has given Elijah a new start at life..and Elijah is enjoying every moment of it!

Thank you for your prayers, your meals, your cards, your support...you have been a part of this miracle and we are forever grateful.

Some will grow out of all of this...and it will be me.

Something will grow out of all of this...and it will be me. I am confident of this. Blogging helps me. It helps me to sort out my feelings, my thoughts, and helps me to see the direction I need to be heading. When I try to wrestle with my thoughts without sorting them out, writing them down and pondering the responses...I remain stuck in the muck. I don't see things as clearly. So thanks. I need you.

And this is what I have learned from my post yesterday which was no doubt a spilling of such mixed emotions...and lots of sadness that I have been feeling lately.

There is so much to learn from the tough times...
God is teaching me so much...
He is softening my heart...
He is opening my eyes...
He is teaching me to love...
more genuinely...more compassionately..more unconditionally...
He is making me more like His son...and I want to be more like Jesus....and I have such
a long way to go.

I need people to meet me where I am at..to love me where I am at...to accept me where I am at...
and don't we all? Don't my struggling children?

Yes, it would be more fun, more comfortable, easier to be around me when the tough times were not hanging over my head. And yet, my friends who rally around me...listen, love, and accept me where I am. They don't just leave me there...they walk with me...in the rain. They don't share easy to share spiritual fixes for the problems going on in my life...they listen and they love. And so does Jesus.

I am learning so much when I look up and not around. When I stop focusing on the problems and start looking up...I am reminded that God is using this suffering to teach me things that will allow me to help my children grow and heal...I will walk with them in the rain...I will not try to fix their problems..but I will listen, I will pray, and I will persevere with them...and we will learn together what it means to live and to love....really love like Jesus does.

I know that I will bounce back...and I appreciate the kindness that has been shown me as I share my struggles honestly with you. I have been treated with patience and love. I have not been made to feel like I should not have such feelings, such doubt, such times of discouragement...and yet sometimes when my kids struggle, that is what I feel towards them. I don't say words like this..but they know. I am learning to be a better mom through the hurt in my own life...and that gives me hope that God does know exactly what he is doing in my life. And my faith grows...

So, I am growing. It has been tough...no doubt..but He is renewing me and reminding me that He has called me to this life...not because He knew I could handle it, but because He could. I must put my children back into His hands and stop trying to do the work I was never intended to do...

God is teaching me in spectacular ways...He is allowing me to experience what it feels like to be accepted and loved fully right where I am...even when it isn't in the best of places...and I will do the same for my children. They need me to love them fully and unconditionally right where they are at in life....and to let go of expectations, and pride, and my own agenda.

I am learning to love more deeply...and I am grateful.