Christmas day brought the gift of leaving the ICU for a new room back on the third floor, a place which has become a second, maybe third, home for Ryan and us. We had desperately needed the ICU and all that it entails for a few weeks but felt so grateful to be past it. The medical team had so intensely and tenderly cared for our boy and us during some hard, dark days.
Watching Ryan show signs of life returning and healing taking place was an indescribable gift. As C.S. Lewis describes, “miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see.” In the last weeks, I have seen the small letters.
On Christmas day, as we found our way to room 3513, I hoped we were closer to the end of Ryan’s remarkable transplant story; but December 27th came with new symptoms. Ryan is experiencing graft versus host disease. This means that Sharon’s immune cells are mistakenly attacking Ryan’s normal cells. The doctors have added/changed medications and are working to treat this, but we find ourselves again, or maybe just still, asking for protection over Ryan’s fragile little body. We find ourselves waiting and aching, taking in the moments where he decides to laugh and play but also the times when he’s too tired or it hurts too much. I am asking for relief to be today but growing in the awareness, once more, that healing cannot be rushed.
For all of the prayers that are being prayed for this beautiful child of ours, thank you. For the love and support that has come from far and wide, we are grateful. In all of the heartache and joy of this season, I trust that God is with us and is for Ryan.