Monday, August 15, 2011

Day +17: Looking around...

I have been looking around. I have noticed things that I had not seen before. All the units have an animal theme...some floors have aquatic animals as their theme, or birds on other units. The bone marrow transplant unit has a land animals as the theme...not the fast, sleek, avenging kind of animals...No--the featured creature on the BMT unit is the turtle. I hadn't noticed that before. There was no chance placement of this creature on the unit. Turtles are not known for the speed or agility. There are no need to tell kids to "slow down" as they are walking through the halls after they finally can leave their room after weeks of no blood cell counts. The pace is set...the turtle tells the story.

Elijah's counts are still not in. He is still running a fever (102.5.) Turtles are slow and steady...they set their own pace. The turtle and Elijah have alot in common. It's day 17--he still has no white blood cells. Some of his other counts that we don't want to increase are rising...liver enxymes, renal issues. His nausea persists along with mild bleeding issues. The whites of his eyes have fresh red blood streaked through them. His energy level is up and down...but mostly down. He is drinking sips of water!! After 5 years of therapy to try and help him drink anything by mouth, he has decided to drink some water all on his own. He may have only drank an ounce or two over a whole day, but it is so great!

Before transplant, I order a necklace with the verse, Jeremiah 29:11, on it. This verse (For I know the plans I have for you declared the Lord, plans for wholenss and not for evil to give you a future and a hope. Jer 29:11) is the one that has carried us through so much with Elijah.  I ordered the necklace on Etsy from a mom who is raising money for adoption (theAdoptShoppe). I had shared a quick bit about our story of adoption and a link to the blog with her.

When my necklace came, there was not one pendant but two. I had just written a post about "Looking up...not around." I said in that post, that if I had a mantra, that would be it...I need to be reminded so often to look up instead all around. She had made me a pendant..with those words. When I opened that package, I was in tears. What a precious, thoughtful gesture from someone who I had never met.

And so today, I have changed the necklace I have been wearing to my "look up" necklace. I have allowed myself to look around...without first looking up. It is like looking at the sun without sunglasses. The light is blinding...overwhelming, painful. My life and the reality of it right now is blinding, overwhelming and painful.

  • My little boy is hurting..he is sick...he is fragile..and I can't do a thing about it...that alone can be too much to bear..
  • My son has not stepped foot out of this hospital room for one month now. When I get the occassional chance to walk out of the hospital into the fresh air, I am often overwhelmed...so quickly we can lose perspective. I must remind myself of  what the weather feels like, how bright the sunshine is, and how it feels to have wind blow in my face. Elijah has not had that chance for a month...how will he handle all of the "outside" world when he gets the chance.
  • I have 9 other children who need me...and most of them have their mental health and medical issues that make the seperation from them even more difficult...
  • I am lost at how to help the other kids...going home for a few hours is hard on everyone. I must face so much that needs to get done...paperwork, appointments that need to be made. They are used to their routines without me and I am used to my routines at the hospital.
  • I want to want to spend the time I have with the kids at home...but I am just so tired ...I really just want to find a quiet place where I can be alone and let my body and soul rest. guilt. yuck.
  • This road is far from over for Elijah..this is a long haul..no sprint here..the marathon began on the day Elijah was born and will not end after transplant. This is a lifetime of tough. That reality is hard to face when you look right into it head on.
  • I feel sorry for our family...why must they have to go through so much? Our kids have already lost a brother...they have learned so many lessons of compassion, grief and the faith that holds life all together after it seems to crumble...do they really need more lessons?
  • I have already lost a son. I have chosen a cemetary plot...a headstone. Will I be asked to do that again? 
  • I am afraid of how I will reenter my life again after this...with several more months ahead of living away from home and trying to somehow to manage a household of 12, how long will it take to recover? To find my routine again? To be able to feel as if we are no longer in crisis mode? 
  • Elijah's counts are vital...we must be diligent beyond most any one's imagination...for.the next year, we must be focused on his health..that is what we signed up for when we decided to do the transplant. But I know each of the kids need a mom who will take the tiem to  see how they are doing as well...they need a mom who cares about their relationships, their learning, their struggles. Can I be that Mom again? I want to be.
  • I wonder who I will be after all of this?
See what happens when I allow myself, for just a moment, to look around? It is of no use. Instead today, I am going to go through this crazy, hopeless list and filter each fear through the lens that is Christ. And in the sifting of the self pity and fear, only one thing will be left...and that will be faith. I will remind myself each time these thoughts go through my head that I do not grieve as if I have no hope. I will not deny the grief and suffering...somehow kidding myself that life right now is not filled with it. Grief and suffering are not out of the realm of God's design for my life. Instead, I will not let it swallow me up. I will embrace it as a gift from God that is beyond my understanding.

I can face these days ahead---when I look up, not around.
I will filter the realities of my world through the hope and perspective that only God gives.
He is good and he is kind..He holds the answers to my questions. He holds the hope for our future.

So, we are turtles around here...and we will do what we do best...slow and steady....acknowledging God's perfect timing...his perfect plan for our lives.
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