Yesterday, we drove from New Albany, MS to Edmond, OK and it was a long day. My 4 1/2 year old son, Isaac, had a severe tummy ache. Something that we are all too familiar with.
He has so many amazing skills and he is smart, so smart! There are however, a few things that he has to work at more than most children. For example: making eye contact doesn't come naturally for him. We've been working with him since he was 2, and he has improved so much. But we do still have to constantly remind him, "Isaac, I need your eyes..." is a sentence that can be heard multiple times a day in our house. If you ask him, "What is your favorite ________?", he will likely have a hard time answering unless it is a question we've coached him on. If he gets a new stuffed animal, and you ask him, "What are you going to name it?", he probably won't be able to answer. Socially, he is somewhat awkward. He simply doesn't pick up the social cues are completely natural for most of us. But our biggest battle by far has been potty training.
At 4 1/2, he has recently bladder trained. Praise the Lord! Bowel movements on the other hand are a never ending battle. It is common for autistic children to withhold BMs and potty training is undoubtedly difficult. But with Isaac it is complicated further because in December 2010 he was diagnosed with something called Hypoganglionosis. What is that, you ask? Well, we are supposed to have ganglion cells in our large intestines and those cells are what cause the bowel to contract. While Isaac does have these cells, he doesn't have as many as he should. The result...severe, chronic constipation. Combine that with the fact that he withholds BMs (for weeks at a time) and welcome to our nightmare!
Surgery is something that we discussed with the Pediatric surgeon when Isaac was diagnosed, but we decided to hold off. We want to see if he adapts and learns to overcome the handicap of having less cells as he grows. You have to understand that it's not a decision we made lightly. The surgery is not exactly simple. He would probably have to have a colostomy bag for quite awhile, then eventually they would do another surgery to resection his bowel. We are not opposed to it, but if there is any chance that he can learn to have bowel movements without going through a serious surgical procedure, we would certainly prefer that. But alas, it is more than a year later now and we have seen no improvement.
So, yesterday I took this video before we started our road trip...and he continued to be completely distraught and obviously in sever pain for the rest of the day...this is a very small glimpse of what we go through on a daily basis:
My reason for writing this post and posting this video is simple. I believe in the power of prayer. Please pray for Isaac. Pray that he would stop having such problems with his tummy. Pray for his comfort, that he would not be in pain and that he would not be scared. Pray for wisdom for Nathan and I as his parents. We most often feel completely at a loss. We don't know how to help Isaac, and that is a hard place to find yourself as a parent. Pray for doctors and therapists that will be involved. Just PRAY! And please, pass this on to anyone who would be willing to pray.
