Suddenly my son’s health seems like a big deal

There is a short passage in “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance 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.

What if there were a magic pill that cured Down syndrome?

A friend of mine here at the Walter Cronkite School at Arizona State University sent me this thought-provoking story about the deaf subculture. She is very smart and obviously saw the moral and ethical disability conundrums that are wrapped up in a frighteningly untidy ball here.

The story discusses the controversy and cultural issues raised by the increasing availability of cochlear implants which many in the deaf community fear will destroy the deaf subculture. The story points out that many deaf people are passionate about their culture and many are critical of people who choose hearing over living a soundless life with sign language.

I really can’t discuss that phenomenon because I am not deaf nor do I have a deaf family member. I can’t imagine being unable to hear the sounds of the earth and the workplace, but most of us can’t imagine dealing with a different disability.

Where the debate inevitably takes me is to Down syndrome. In my book,  Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance I write in the acknowledgements section of the book: “I have no intention of entering the hot button arena of abortion, but I can say unequivocally that I believe our world would be an inferior place if there were no Down syndrome children. The pursuit of the perfect baby would deprive our world of real joys and triumphs.”

Believing that aborting all children with Down syndrome is wrong and would diminish our society is a ridiculously easy place to stand. People with Down syndrome, like my 35-year-old son Jason, do deeply enrich our world just as deaf people do. I ardently believe all diversity makes our world richer and gives it genuine texture that can be celebrated.

But, for argument’s sake, let’s say there was a pill that immediately fixed Down syndrome. And, what if, like the cochlear implant, there was some chance it wouldn’t work. Would I hang on to my diversity argument or would I move mountains to get that pill for Jason to allow him a chance to live a more normal life?

Again, for me, I’d step all over people to get Jason that pill and the “Down syndrome culture” be damned. Certainly our society would lose something important, but how could I possibly deny Jason all the joys that come with normal intelligence?

One of the arguments of people who oppose cochlear implants is that it implies deaf people need to be fixed and they resent that. That argument bothers me because a lot of us have twisted limbs, cancer or a score of other maladies that get “fixed.”

I cannot walk in anybody else’s shoes and I don’t have a deep understanding of the deaf subculture or cochlear implants so I will never criticize anyone in that community, but if I could fix Jason’s Down syndrome with a pill you would see nothing but a blur.

Tim J McGuire is the author of “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance

The mystery of Jason–5 and 35 at the same time

One of the main themes of my book Some People Even Take Them Home,” A Disabled Dad, A Down syndrome Son and Our Journey to Acceptance is that my Down syndrome son, Jason, is five years-old and 35 at the same time.

Sometimes he is a scared, befuddled and overwhelmed child and at other times Jason is a man of the world with wise insight largely fueled by television and movies. When he visited Arizona along with his siblings over Christmas the five-year-old was on full display.

Within minutes of arriving, Jason arranged the five stuffed toys he brought from his group home in single file on his bed against the wall. He does so unabashedly but please do not call the toys dolls or toys. That insults the 35 year-old Jason who maintains a self image of an adult.

The adult Jason expects the privileges of an adult, but is absolutely stunned when you are unhappy that he has mixed his clean underwear with dirty underwear. A five-year-old just can’t see why such niceties matter.

On his trip his siblings got a delicious look at Jason’s self image. As we discussed the book somebody brought up the far-fetched notion of a movie about the book. When Jason’s younger brother, Jeff, asked who Jason wanted to play him in the movie, Jason never paused. “The Rock,” he declared with no hint of irony.

The Rock, or Dwayne Johnson, is a muscled wrestler and actor who was once a defensive tackle in football. The similarity between Jason and The Rock go no further than the fact they are both males. That does not faze Jason in the least because a five-year-old wants what a five-year-old wants.

Logic and realism come to us as we grow older, as we mature and as we gradually come top grips with what we are and what we are not. Jason has never been able to make that journey. He is sweetly funny about his state, but his lack of recognition is bitterly disappointing and frustrating too.

That is the debilitating reality of a cognitive disability.