Maisy, Elijah and I went to see Elmo Live last week. Maisy danced in the aisle, jumped up and down and wore herself out. Elijah listened intently...seriously...almost as if he wasn't enjoying himself. But, he was. He studied everything that was going on..soaking in all that was happening on stage...cautiously keeping his guard up..never quite knowing when people around him were going to clap or cheer. He hates clapping and cheering..but he loves Elmo. "Dr. Elmo" as he calls him. He says his two favorite doctors right now are "Dr. Smith (his transplant doctor) and "Dr. Elmo." We had a precious time...
...and I was busy thinking how thankful I am that our days fly by around here when we are waiting for news. We are still waiting to hear if a bone marrow match has been found for Elijah. Matches are generally race specific and so the pool of potential donors is much smaller for him. His birth family, although willing to donate, are not likely a match. And so we wait. Most days, I find it so hard to watch time to fly by...but for this week, I am so thankful that my days have been filled with laundry, and dishes and organizing...it has given me an opportunity to turn my thoughts to prayer instead of worry or fear. I have felt God's presence like a warm, soft blanket in these cold January days in a way I can not express in words. He has been so faithful to us as we wait..
God has given us many confirmations these past two weeks that we are heading in the right direction with treatment. He has eased our minds in ways that we didn't expect. We were pleased to find out that Dr. Harris, the leading doctor in treating Shwachman Diamond Syndrome from Cincinnati, recommends only one other facility besides his program...and that is the University of Minnesota. There are four kids in the US with SDS that are going to transplant this month and one that may need a repeat transplant soon. There are some great parents who I am able to connect with through an SDS yahoo group that have provided me with a wealth of information and support over the years. I am so thankful for them.
I am fighting off the feeling of being overwhelmed...I have so much on my mind, I feel like I am getting confused and forgetting things. I am working on getting as much prepared ahead of time as I can...and I am feeing good about that process. The details are overwhelming....But, it is well with my soul.
I do not want to waste any moment of our families journey through Elijah's bone marrow transplant...it is an opportunity to share God's faithfulness, His undying love, the peace that passes our understanding. On the first day that we met with the doctors regarding Elijah's condition in 2006, the doctor told us that Elijah was truly between a rock and a hard place...at that time, he told us that he will die without a bone marrow transplant and that he will die from one. We took him home from the hospital that day, after having just lost our son, Evan 6 months earlier...knowing that the odds were against his survival.
And now it is almost 4 years later, and Elijah is still here...and that is for a reason. From the day that we met our son, Elijah, we knew a truth much bigger than the doctors may have seen that day. Elijah is between THE rock and a hard place...and I want him to be no where else than right where God wants him to be. And we will stand beside our rare and precious little boy as he fights a rare and life threatening syndrome....and we will watch in amazement as God uses this struggle to touch the hearts of those who have not seen God in all circumstances before. He is here beside us...He will supply Elijah and our family with all that we need..and we will place our trust in him alone..not a transplant, not a new treatment, not in life here on earth at all cost. God has already done a miracle in Elijah's life when he called him a "child of God." What more could we ask for?
“Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life?
But seek first the kingdom of God and his righteousness, and all these things will be added to you."