It has been a good week for Calvin. His retching has been mostly under control and he’s aspirated only a few times. Both of us are a little shocked he’s pulling through so well.
I’m reading Disability and the Gospel by Michael S. Beates. He has a 30 year old very impaired daughter, Jessica. When she was 16 they were sure they were losing her and all had gathered and said their last good-byes. But instead of dying her body miraculously began to function again. He notes:
It was a strange time because while our friends were praising God (and rightly so!) that he had saved her from death, Mary and I were conflicted. We were “ready” for her to be with Christ, but now she was with us again. We came to see that Paul’s expression of faith in Philippians 1 applied to Jessica as well. Though he wished to be with Christ, God deemed it more needful that he remain in the body–for the sake of others. We determined Jessica’s ministry, her presence among us, was still needful in God’s eyes. God surprised us.
This seems to be our story in many ways too. Calvin struggled so much for simple survival the first year and only had a very short life expectancy. Contrary to what everyone has expected he is getting stronger! I used to never buy clothes for the next season because I never knew if he would not make it to the next season. Now I find myself saving Noah’s clothes for when Calvin turns four or even five.
So many are rejoicing in how well Calvin is doing, and we are too! But there is a part of me that is afraid of him living. The Beates state it well:
The death of a newborn child, while excruciatingly painful, is also graciously final. People move on. Granted they are never the same, but still necessarily move ahead. But the brokenness of lifelong disability leaves many people in a state of chronic sorrow. And too often, the Christian church in the West communicates to people that sorrow and brokenness are conditions we expect to overcome and conquer.
But the hard truth is some us, by God’s difficult providence, find ourselves facingbrokenness day in and day out with no prospect of significant change in the situation. In fact, though you walk on with Christ, by faith, often with gritty devotion and hard work, not only does the situation not get better or go away, but too often it gets more and more difficult with every passing year.
The book goes on, not leaving us in this dark picture, but showing how this low and needy place is a place where God works. And this is our hope in the midst of a tiring, never-stopping, stressful and broken situation that is not ending. God still has a place and purpose for Calvin even though I do wonder sometimes, “What’s the use Lord? Why not take him?” That’s usually cried on days when Calvin is miserable with seizures or not able to breathe.
That desperate strange place of hoping his little body would be still has largely left my heart. Instead of hoping for death we are looking for Christ’s sustaining hand, for little flowers in desert places. And in all the looking there are so many little joy-surprises. He is filling our hearts these days with Him, with praise and joy for this life He’s given. For all the mountains and valleys. He’s there every step of the way. We are looking forward to tomorrow because in it His sufficiency and beauty will be painting the picture of our sad story. He will make it beautiful.
Soli Deo Gloria.