What hurts the most.....

I don't think  there is a parent alive who would not agree that one  most painful experiences is to see their child hurt, and not be able to help them. When Matthew was born, he was airlifted to Arkansas Children's Hospital. It was where he needed to be, and there is no doubt in my mind that they saved his life. I would have liked to have stayed with him 24 hours a day, but at the time, it was nearly impossible. We could only see him certain times of the day, and I had family to take care of.  I stayed as often as I could. One time while I was there, Matthew had to go have some tests done, so I went with him. In the next room, I could hear a child calling for his mom. I still hear him to this day. "I want my mom! I want my dad! Anybody!" It broke my heart. There was no one there for him. I called Mike when I got back to the room and told him from that moment on, Matthew would never ever be at the hospital alone. He might not even be aware that I was there, I might not be able to help him, but he would never have to be there by himself.

As I mentioned before, the challenges Matthew faces today, are different from the ones he faced in the beginning. Fighting illnesses and infections is difficult, but they run their course and are done. The challenges he faces now are more difficult to handle.One of the hardest is that he cannot tell us when something is wrong. Whether it be a tummy ache, a headache or other ache or pain, or even just if he is having a bad day, he cannot tell me. It's frustrating for me....even more so for him.  We take for granted our ability to convey to others any discomfort we might have. "It's too hot." "It's too cold." "I'm hungry." "I'm sleepy." We are a bunch of whiners. Can you imagine not being able to express yourself?


Another challenge  he faces is what seems like a compulsion to hurt himself. Currently, it is by pinching himself. I realize that it does not sound bad, but believe me, it is. He has small, strong hands that are capable of producing horrible, tiny bruises. Not just one, but dozens. There are many times when he breaks the skin. This has been going on for nearly 10 years. Until  year ago, he would go through cycles where he would do it constantly for a month or so, then stop for months. For the last year, it hasn't stopped. We have talked to doctors who give scenarios as to what could be causing it. We have tried assorted medications. There has been little we have tried that has helped. At the moment, we have to keep restraints on his hands almost 24 hours a day, to prevent him from pinching himself. Just this morning, when I went in to get him ready for his bath, I found him on the floor in his room with one of the wraps off. He had done significant damage to the tops and bottoms of his thighs, as well as the upper portion of his left arm. I wanted to cry.

A very dear friend suggested some brilliant ideas for me to try with Matthew to see if  we can  break this cycle. I discussed these ideas  with his occupational therapist and we have decided to implement these ideas. His OT explained to me that when special needs children go through puberty, it can cause severe regression. He is almost  back to square one. I am excited to see what kind of progress he will make in the next few months.