For me, living with a child who has a life-limiting diagnosis is in some ways an exercise in denial. We have been given a prognosis of his life ending when he's somewhere between five and fifteen years old. Currently he's four and a half.
There are no prior case studies or research the doctors have pulled this number from because there are no previously recorded cases of a child with Connor's genetic condition. However, his specific combination of birth defects affect every system of his body except for his lungs. His heart defect can cause strokes (he's already had one), congestive heart failure or sudden cardiac death. He doesn't sweat-- we're not even sure he has sweat glands-- and so is at risk for heat exhaustion any time the outdoor temperature climbs over about 80 degrees.
He has seizures that begin in his brainstem and cause him to stop breathing; we've now resuscitated him over 60 times in the past two years. His seizures also put him at risk for aspiration pneumonia. He has only one kidney. He has no protective reflexes to slow or break a fall. As a result Connor's doctor's records usually read either "prognosis guarded" or "prognosis poor," depending on how optimistic that particular doctor is feeling the day of our appointment.
Connor's already beaten the odds. When I was pregnant with him we were told there was a high chance he would be stillborn. He was born limp and blue, but with a heartbeat. Then we were told there was a 90-95% chance he would not make it through his first surgery at four days old-- to remove a kidney swollen to a size larger than his lungs. He breezed through the six hours under anesthesia with no trouble.
After that we were told there was a good chance he wouldn't make it through his second surgery at a month old, to correct his twisted intestines. Then that he wouldn't make it to a year. And now we are just about to cross the threshold of the ten year period that has been outlined as the next time he's most likely to leave us. You can understand if we take this whole prediction thing a little more lightly than we should-- after all, the doctors have been wrong four times before. And our little guy is so full of life, so joyful every day, that it's nearly impossible to think about him being gone.
Truthfully we know that it is extremely likely we will outlive our son. My husband Jeremy and I have spoken a little about funeral arrangements and about under what circumstances we would sign a DNR order for Connor. But for the most part we've made a conscious decision not to think about it. We've decided that if we have a limited time with our precious son here on this earth we'd rather spend it celebrating each day he's with us. We're going to have more than enough time to mourn him once he's gone. Naive and overly optimistic? Maybe.
But it keeps us functioning and focused on what means the most to us right now-- giving Connor every opportunity to have a happy and satisfied life, no matter how long that life might be. And I think watching the way our son interacts with the world around him, his matter-of-fact acceptance of his physical limitations and the way he finds happiness in the smallest things, has affected our whole philosophy about life. Isn't love, happiness and satisfaction what we all need, no matter how long or short our lives are? What's the point of living ninety years if we're going to spend them miserable?
While we can't predict the future any better than the doctors can, Connor is probably not going to have a slow decline before he passes on. Most of the risks he lives with involve him leaving us very suddenly. In some ways I'm glad that's the way he's most likely to go: quickly and painlessly without knowledge of what's happening to him. Because I know that we're not likely to have any warning-- that each day could literally be our last day with him-- it makes me think of every single one as a gift.
We can't change the reality of our son's lifespan, no matter how much we'd like to. But instead of dwelling on it, we can take the time now to learn as much as we can from the lessons he teaches. Connor treats every second he's here as a chance to seek out joy. I think that's a pretty wonderful way to live.
Jess writes daily about her family over at her blog, Connor's Song.