The transplant doctor came to check in on Elijah. She is young and smart. The U of M is a teaching hospital. When Elijah was born, it was obvious to the doctors at Hennepin County medical center, where he was born, that something seriously wrong with Elijah. They called in a hematologist from the University of Minnesota. And along with that doctor, who has since moved out of State, came with him a fellow...a resident doctor who was studying the pediatric hematology specialty. Her name was Dr. Angie Smith. She performed the first bone marrow biopsy on Elijah when he was just an infant. She has been a part of his highly specialized care team from the beginning.
It is rare for a child to get such an early diagnosis of SDS. The diagnosis often eludes parents and doctors for years. It can be a roller coaster of emotion for familiars knowing that thechios something wrong with their child but not being able to find out what it is. Elijah was born very sick. He could not breath on his own and needed a ventilator to help him breath. He was considered to be failure to thrive because his pancreas was not working properly. The doctors called in all sorts of specialists including s geneticist. It was Dr. Nancy Mendelsohn that first suspected Shwachman Diamond Syndrome and soon after a chromosomal study confirmed that suspicion. He had SDS and his bone marrow marrow already showed signs of failing.
Elijah's Mom was only 19 at the time. How overwhelming that must have been to know your first born son had a life threatening illness..one that is so very rare and so complex. I know she wanted what most every parent wants for their child..and I know she still does. She wants him to be free from pain, to be happy and to feel loved. She wants her son to thrive despite challenges. Together, we share the same hopes and dreams for Elijah's future.
Dr. Angie Smith then went on to establish herself as a transplant doctor at the University of Minnesota. When our hematologist felt that the transplant could no longer wait, he sent us to the transplant team..and to Dr. Smith. It gave us great comfort to know that she knew Elijah's case well. She immediately put our minds at ease with the knowledge, compassion and respect for us as Elijah's parents that she has shown us.
Last evening, I shared with her how well Elijah was doing. She shared with me the more technical side of "how he was doing." And together we celebrated the successes so far. I let her know that we were fully aware that things could change quickly from day to day. Her response reminded me of the reality of this journey. She said that in the next weeks, we just take things moment to moment..not day to day. That was a good reminder to me that in many ways, we are just beginning down this road.
Moment to moment...things can change so quickly for Elijah. This is a reminder of how precious our time is with our son..and truly how fleeting our time is on earth. Children grow so fast and they barely sit still long enough to study them like we could when we held them in our arms as babies.
I study Elijah as he sleeps. I am amazed at how beautiful he his...how fearfully and wonderfully made he is. I stare at his chocolate skin...a sweet mocha color that looks more pale than ever. His sweet, soft smile is evident even when he sleeps. He tucks his hands together under his head as he sleeps...it reminds me of the way a sleeping child would be portrayed in a golden book with Eloise Wilkins drawings on it's pages. His big cheeks, puffy and precious..they are his trademark feature.
I love to sweep my hand across his tight curls and kiss his forehead as he sleeps. I wonder when that hair will begin to fall out and if he will be bothered by it. I pray over him and find myself pleading first for his protection and for healing and then I find myself being swept up in praise for the gift Elijah has been to our family. I hold his sweet, small hand and give thanks for the blessings of peace and the calming of fears. I slip away from his bed, trying not to disrupt his restless sleep....my mind racing with the lessons I am learning through it all.
There are so many parallels between the way God grafts us into his family and the way engraftment is occurring In Elijah's frail body. The process is so similar..and 100 days from now, our goal is the same as it is when walk on our journey with Jesus Christ. Just as we want to see more of the donor's healthy cells than of Elijah's weak and damaged cells...so too, it is with us...less of us and more of Him.
So, we will live moment by moment...treasuring the times in between the nausea and the discomfort that Elijah is experiencing. If you ask Elijah how he is feeling, he will
tell you he is happy. Amazing, huh? There are so many lessons to be learned...and we pray that we would have ears to hear them and eyes to see the miracles before us...
