Friday, June 3, 2011
The kids are constantly coming up with new ways to impress me and to be cute. They are, however, all at a stage in which they are constantly testing limits and asserting their independence. This is not so cute. For the most part, though, they are very sweet to one another. Today, Ben was yelling, "I stuck, I stuck!" so Jack dropped his notebook (gasp) and headed to the rescue yelling, "Help Ben, Mommy! I help Ben!" The boys also love to give Molly (the cat) their blankets, and even give her a book once in a while. They are very sweet to her and she is very patient with them, luckily.
Mairead is continuing to make progress. We saw her neurologist this past week and he is really happy with how she is doing. Unfortunately, we are all sort of out of ideas for how to help her to progress any faster. Now, we just have to give her time and see how she does both in school and at home. Our first appointment at the stroke clinic was July 1 of last year, so when I think about how far she has come in that year, I realize that she has made amazing progress. I can't help but to want her to make even more progress, though, because I hate to see her frustrated and I hate to see the increasingly obvious differences between her and her peers. We will all just keep doing our best- that's all we can do.
Every time I go to Children's, I thank God and my lucky stars and anyone else who will listen that Mairead and the boys are as healthy as they are. I have my struggles with Mairead and there are some days when life is really, really hard. But I know it could be much worse. When we go to neurology, we go to Fegan 11 (one of the towers at the hospital). From the waiting room window, we can see the windows of another tower (I think it's Hunnewell). When I took Mairead last July 1, we could see the room of a little girl named Ella Grace. Her name is colored on the windows, she has pictures, stickers, etc, all over the place. It was clear she was a pretty established resident.
Well, we have been to neurology 5 times since last July, and I always look to see if her name is still there, or if maybe she has gone home. Today, Ella is STILL there. She has been in the hospital, in the same room, for over a year. Now, I am afraid that next time we go, I won't see her name and I will fear that she didn't make it. I have obviously never met this little girl, but I think about her often (is that weird?) and I pray for her and her family. Can you even IMAGINE your child being in a hospital room for over a year?
Anyway, I am definitely not a 'life with a child with special needs is all puppy dogs and rainbows' person, but man, what some of these families are dealing with is just heartbreaking to the nth degree.
So if you can, send a little prayer to Ella Grace in Boston
I apologize for the decrease in blog posts lately. I have been having a lot of pain in my wrists-- enough so that I actually went to the doctor for myself instead of for the kids. The NP suspects (as I did) carpal tunnnel syndrome. I have to have an electromyogram at the end of June as well as consult with an orthopaedist to see what should be done, with options including cortisone injections and surgery. I am pretty anxious about all of it seeing as I have three little ones to take care of, but I also have to be sure I don't do permanent damage to any nerves. Wish me good luck!
Have a great weekend, everyone!