There is a short passage in “ about the day after my son, Jason, was born with Down syndrome. The staff pediatrician at the hospital was discussing the diagnosis with us. I wrote this:
He (the doctor) actually began the conversation with good news, but his delivery rankled more than it comforted. He had ordered an x-ray which revealed Jason’s esophagus was connected to his stomach. That’s not always the case with Down syndrome children. And, as far as the pediatrician could tell there were no heart problems, which is the other huge risk factor for Down’s babies. Jason was perfectly healthy except for that pesky mental retardation,(1979 term.) That blessing of good health didn’t impress us much that morning, but we have thanked God for Jason’s exceptionally good health practically every day since.
Jason has been incredibly healthy as a child and now as an adult. He has been so healthy I am afraid I took that good health for granted.
Jason fell on the Minnesota ice and snow a few weeks before Christmas. When we visited during the holiday he complained that his back was hurting. So last week he visited his doctor.
His house manager wrote me after the appointment and said, “Jason was seen last night by his primary physician for his lower and mid back pain. He had three x-rays taken. The doctor stated that his bones were close together, but nothing that would require surgery. He suggested using ice as needed for pain and rest.”
On the face of that note Jason is fine. There is nothing to worry about. But I did and I do.
The words that leaped off the page for me were, “but nothing that would require surgery.” I had never come close to imagining Jason undergoing back surgery. In truth, I have more or less lost sight of the fact that Jason is aging and that he is going to have to deal with all of the things associated with that process.
Selfishly I think about how disruptive a major Jason illness or surgery would be for my family, but once I get past that I am frightened to death about how Jason would deal with a debilitating illness.
I am afraid that sort of experience would be overwhelming for him and that makes my stomach churn.
I can’t protect Jason from bad health any more than I can protect my other children, but in my mind they are adults and Jason is an innocent boy who needs my care and attention.
I am convinced Jason’s back will be fine, but this little scare has been valuable. It’s focused me on Jason’s vulnerability and caused me to think about some important contingencies around his future care.
And, I won’t take his good health for granted ever again.