Wheelchair Practice

We have been going to Shriner's weekly this past month to give Nicholas more practice on the power chair. Since he will be turning two in May, we would like to order his own power chair within the next few months so he can experience some freedom from us carrying him all the time. He gets better with every try, but because he is still getting over bronchitis, he's not quite feeling like his normal self yet so he's been a bit weaker than normal.

Last Saturday, April 17th, marked the one year point of Nicholas's diagnosis with SMA. I was out-of-town leading a retreat, so I didn't think of it at all until I got home on Sunday. Our computer's screen saver is photos and videos of family and friends and on Sunday evening when I went to turn the computer off, I stopped and watched a video of Nicholas in the bathtub when he was around nine months-old. He had a bath toy in his hands and was bringing the toy up to his mouth to chew on and that's when it dawned on me that he has been unable to bring his hands together and up to his mouth for quite some time now. I continued to watch photos and videos pop up on the screen and I couldn't stop crying because I could see how much our little guy has declined physically in the past year. I don't think about it much on a day-to-day basis, but when it was presented in a slide show fashion it was extremely difficult to ignore. I guess I just keep thinking, "Well, he's been teething," which accounts for some of his weakness, although now I realize that not all his strength has returned and I am unsure that it ever will. As I write this I have a huge lump in my throat and tears blurring my vision because I don't know if this means we are closer to losing our son or if it is just how Nicholas will continue to live for a long time. Either way it's heartbreaking and extremely difficult and I wish there was something I could do to help my son overcome this awful disease.

Please keep us in your prayers this week-we could really use them.