Friday, April 20, 2007

It's been awhile since I have posted, although I keep up-to-date with everyone else's blog. It is so selfish of me, I know; and when others don't update their blog, I am always, "What's going on over there? WHY haven't they written anything???" Poor Nancy, you must get my mind waves going a mile a minute because I know I'll get some super-dooper brain lesson from you and if your entry isn't new, I am trying to tell you telepathically, "Let's go!" :)

There have been reasons why I haven't updated. First, it was because I felt like I had nothing to say - everything was pretty much going as usual and how many times can I say, "So, we're trying to help Brady gain weight; he's moving along fine, slow and steady, blah blah blah." And then it was because there was too much going on and I couldn't quite decipher WHAT to write.

I do feel a change in the air, though.... a small but steady shift in my life that exists although I can't place my finger on it. I am slowly feeling a break from my normal routines, a break from friendships that I can't determine the causes, a realization that life is about to change somehow.
It is very odd and I can't really offer anymore explanations. I just don't know. Maybe it will all unfold in front of me and I will see what life will bring me. Maybe I am just getting older.

I have had a few "a-ha!" moments. I have realized that Brady is on more of an uphill path than I see some of the other WS babes out there. It doesn't make me vengeful or unhappy for the others, just a little more sad for us... which I think is very hard for me to acknowledge. I am always the one encouraging and although I do acknowledge things really bite sometimes, I still have that inner positive attitude.

I have also realized that raising a special needs child will require many conversations with my eight-year-old. He and some friends were talking the other day and said someone was "mentally retarded" and I instantly went into defensive mode explaining that it wasn't funny and it is not something to joke about. Later on I talked to Michael when it was just the two of us and asked him if he knew what being mentally retarded meant. I know he is just talking the talk all kids do, that he isn't trying to be mean. So we chatted. I said how it took some people a longer time to do things but it was okay, everybody goes at their own pace. He understands that Brady is delayed in general, and he pointed out how Brady didn't walk yet or even crawl and our friend's baby was running around the hosue who is a few months younger. He still wanted Brady as his brother, no matter what.

Then he matter-of-factly asked me outright, "Is Brady mentally retarded?" I hesitated because I don't really know how to answer that. Is he? I know he has Williams. I know he is delayed. I know he has SVAS. I know he has radioulnar synostosis. I know we have no idea how much help he will need in school yet. Is this a label for my eight-year-old to have about his brother? On the other hand, Brady seems "normal" to Michael, so would having this label be a good thing for Brady to have while still seeming "normal"? (Did you follow that?)

So I half-chickened out. I said something like, "Well.... kind of, but because he has Williams he has delays and he may need help learning." Michael was fine with that and didn't ask me any thing else, although we talked for a few minutes more. I think he mulled over that conversation in his head though, because the next day when I was taking him and some friends out he said, "Did you know my brother's mentally retarded?" I almost hit the brake. I explained to him later on that while we aren't secretive about Brady's Williams', we don't outright tell everyone we walk into. I told him, "We don't say, 'Hi, this is my son Michael and he's allergic to peanuts.' " He seemed to understand that and I have to remember he is only eight.

And on the other hand, I met a woman yesterday on the ballfields whose son has PDD-NOS and while we chatted about some of the similiarities between her son's childhood and Brady's, her son came up three times to get money for more food at the concession stand. She rolled her eyes and said, "Yep, he had feeding problems!" Obviously not anymore! He also didn't say his first sentence until he was four... now he didn't keep quiet! She said, very profoundly, "Just to show you, you don't need to worry about everything... it all happens in their own time." I don't think she realized she was being profound, but I did walk away a little lighter.

Monday, April 09, 2007

Tuesday, April 03, 2007


For it to be April 3, there should be birds chirping, sun blazing and bits of green poking out of the ground. The air should be warm and smell like rain. WELL.... here in New England it is cold, drizzly and gray... not light gray but more like gray-to-black. We had a small peek of spring last week but we're back to a wintery mode. All we need is another April Fool's Day snowstorm like we had 10 years ago to top off the week.

It's like we're in a standstill -- not quite spring weather yet, but too warm for the sweaters. We are in a plane inbetween winter and spring. Coincidentally, that is where Brady is too. He was having a gusto end-of-winter, eating food pretty well, sleeping on a schedule, learning new tricks, sitting for a good amount of time. Then we went to the nutritionist who was happy in general with him, but we're still trying to add in more calories. Since then, he has been not eating a lot of food and not drinking a lot of bottles. I will probably find out in another week or so that he has an ear infection or strep throat or something... there are no symptoms but ironically this kid never complains, just doesn't eat! Of course if I used not eating as a symptom of an illness we'd be at the doctor for fruitless appointments every day.

If you looked at Brady, though, he's not a skinny little peanut. He seems very proportionate, just small. He is growing length-wise, and his cheeks and belly jiggle when he bounces around. He is more active, which also accounts for not gaining weight really fast. Argh - seems like a nevernending cycle.

PT-wise he's doing pretty good, still making strides. I am hoping he will be able to do more when the warmer weather hits and we're outside more.