Sunday, July 24, 2011

Precious Time

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.


g-girl said...

that's all anyone can ask of you. :) you've got to cherish every moment.

Erin said...

He is a precious little one and you are such a precious mama! I pray that God blesses your family and you feel His presence everyday. You are so positive and encouraging. I enjoy your blog!

Smilen Champ said...

My name is Jenna and I came across your site. Your son is an amazing, courageous, strong and determined fighter. He is a brave warrior, smilen champ, inspirational hero. He is a precious and special gift, and an earthly angel. All your kids are lucky to have a great loving, kind, caring and concerned mom like you. I was born with a rare life threatening disease, and have 12 other illnesses. Plus developmental delays. I am not healthy at all and always in pain, I can imagin what you go through, just by me seeing my mom and dad go through what they do with me. You and your son with be in my thoughts, and I wish you all the best in your fight. My site: I love it when people sign my guestbook.