There are so many little things that need to be considered on the eve of long hospital stay. The hunt for soft shirts that button down the front for our little boy who is experiencing pain from the many procedures and essential lines placed that will give him transfusions, medicines and eventually bone marrow.
The dishwasher isn't working, the washing machine is broke, the lining of the pool has a hole in it and we can not find Elijah's ipad...something we bought for him in anticipation of long days in the hospital. He reads and plays and listens to nursery rhymes independently with his ipad. One of our older boys (with FAS) mentioned that his friend wanted to buy it for $10. We are praying that our son did not decide to sell it to him. But it wouldn't surprise me if he gave it away. We are hoping that some parent out there will notice their child with an ipad if that is the case.
The time has arrived. We are ready. There are so many uncertainties, financial stressors, emotional stressors and little details that we must now let go of. There is so much more to focus on...what an opportunity we have been given to allow Christ to shine through...we will not face Schwachman Diamond Syndrome as if we have no hope. We will cherish the gift that we have been given to us through our son Elijah...who has a beautiful precious story to tell through his illness.
These last days before admission to the hospital, we have spent little time focusing on the information out there, the statistics out there about children with SDS who face bone marrow transplants. Instead, we have spent our time coming together as a family and celebrating the faith and hope we have in our Savior. We have spoken about what it really means to be healed and what our desires are for our whole family through this experience. We are all entering a new chapter of our life story...and we have the chance to make this chapter one of finding beauty in the mess of it all..not one of anxiety, fear or anger.
This chapter in our lives has been given as a gift not a curse. And we will embrace the giver in the midst of the struggle. May our lives be our thank you...
Elijah is still excited to go to the hospital. I am not sure how he will handle the fact that he will not be able to leave his room for a month or so...meaning that the elevators that he loves so much will be just out of his reach. But, judging by how he has handled things so far, I am trusting that God will help him through this as well.