Given the experience I have had with special needs and the time I have had to get used to the idea, I have been pondering why I still feel such a roller coaster of emotions over it constantly. Sure, autism is tough to manage, but I have been down this road before. And yes, boy number three has more physical movement struggles than I have dealt with before, but there is something else. I thought about this all week and then it hit me: I have a chronically ill child. Yes, autism is chronic, but what I mean is: my third born feels physically sick more often than not. I am talking about the extra diagnoses that make him medically fragile.
Some of the things we deal with are reflux, gastroparesis, food allergies and fatigue. On a daily basis, he may feel too full after just a few bites of food, might have a burning throat or upset stomach, or be overly tired while his peers run circles around him. It is heartbreaking as a parent to see your child in pain so often. Our medicine cabinet is much fuller than I would like. We have tried many medicines to control the symptoms as well as added some vitamins to the mix. His formula is a special kind that requires a prescription as well.
And then there is the great unknown, and the fact that his collection of symptoms suggests a larger, all-encompassing diagnosis that has so far alluded doctors. The immature gait, the unexplained fevers, the slow stomach, the lack of energy, it all adds up to something, they say. "Something"- and yet no one knows what.
At certain times I have expressed my desire to appreciate every day, but I doubt I have ever written with brutal honesty this simple fact: I do not know how long my child will live. Yes, his ailments may turn out to be pesky things that will improve some with time, and he may learn to adapt and live a full life. Without a clear diagnosis, we live in doubt and sometimes fear. I do realize we are not alone in this, and that many other parents, TOO many other parents, share this experience. And yet somehow it has been hard for me to identify my feelings about it or want to share.
This is why I drop everything and lay down with J.C. when he wants to cuddle. This is why I sneak into his room to look at him sleeping at night, or why I sometimes am secretly excited if he wakes up. This is why I do enjoy my breaks but miss him after a few hours away. He calls to me... time calls to me... more precious when it might be too short.