Friday, October 26, 2007

I have "met" so many people online whose children have Williams Syndrome. Some Brady's age, some older. Even though all the kids are different, I can get some kind of idea what is ahead of me. They all have differing challenges, but the core is pretty similar. I also remember when Brady was first diagnosed, I was told if Brady were to have a syndrome, Williams was the one to have -- I think in terms of future problems physically and mentally, plus the "happy" gene that follows so many of the WS kids.

I see Brady is delayed. I see Brady is a little peanut. I see Brady slowly getting to the crawling, walking, running stages in his life. I don't see a child who will not do what all the other children are doing. Will Brady be able to play baseball as good as his brother? Probably not, but that could have been like that anyway... nothing to do with Williams.

Today we had a sales rep from an equipment company join Brady's PT appointment, along with another PT who specializes in equipment. The equipment were items that would help Brady in his quest to walk and to aid with his low muscle tone. Things like specialized strollers, with removeable seats for a highchair or car seat; walkers; bath tubs in help him sit upright. Even though Brady has been making great strides, he is still working on everything. He sits great, sometimes he still squirms to lay down. Some items - like a walker - would be an aid for a few months or so; a stroller he could use up to age five if his energy is low. It would all be covered under insurance.
The other PT was nice and helpful; the equipment man was nice and helpful. Heck, here is an adorable picture of Brady and Lisa using the walker -- upon which he immediately started moving while he was in it:

Then they brought the stroller out - a stroller similar to the hundreds I've seen at Children's Hospital with severely disabled children in them. I immediately froze a bit, not that anyone noticed because they were too busy talking about all the great benefits. I understand why they brought it, I understand if he has trunk support while sitting at a table he can concentrate on doing OT type stuff without concentrating on sitting. I understand. And Brady's PT Lisa said how it would be great to use now while he's trying to reach his goals, that he wouldn't need to use them for a long time because he would reach his goals.
But I don't see my son in equipment like that. In a specialized bathtub. And not that he needs it, but the catalog was filled with other equipment that was for more severely disabled children. But the catalog is here in MY house, sent to help MY son. How ironic, just when he has come along so far, I see something like this and it hunkers me down to earth. I know once I get past the moment, I will be fine and realistic about his needs. But it was NOT the way to start my morning.


Julie said...

Those are how my bad days feel. Most days he is just Noah, sweet, loving, funny Noah. But on the bad days I do feel sorry for him and myself and remember that he isn't just like every kid his age. I said before I know all kids are different and for the most part I feel that way but on some occasions, and they don't last long, I am shook back to the reality that he isn't just different because of uniqueness, but because he has a syndrome. I don't think any of us could have dreamed we would be here when we were pregnant. No one ever thinks it will happen to them.

camille said...

Wow, that's hard. Those moments when you really feel different from other people are so hard. And I think, for the PTs and OTs of this world, those magazines and pieces of equipment are more "business as usual" for them instead of them being able to understand the "AGH you want to put my child in what?" feeling. Hang in there and keep trying to stay focused on the accomplishments he's made, because he has come really far. We love ya, Brady!!

Nancy said...

While I was reading your post, I just had a little lightbulb moment.

I used to see a child using equipment, whether it be leg braces or a wheelchair, or a walker, and feel sad. Now I just see them as extremely wonderful tools. I don't feel sad anymore. That's all they really are.

I think Brady is ADORABLE in the photo. Looks like he is ready to take off!

Margaret said...

Hearing you, loud & clear, Kerry... somedays it's the smallest thing that pulls the rug out from under you... when you least expect it...

Rock on, Den MOM! :)

Ange said...

I felt the punch in the gut right along with you. Brady is going to surprise us all! Yhat i am sure about.

Heather said...

Kerry, this might be what he needs to really take off. You may be surprised. Once he gets a taste of being upright... Ya never know..
ps: I know it is hard to think of your baby that way. Hang in there, he'll get it. Lot's of love, Heather

Every minute counts.... said...

I too have had that happen on too many occasion to mention. I think it is hard to see your child as anything but the wonderful kid they are. You overlook what's "wrong" because that is who they are. I have had people ask me "why does Abi need DAFO"s she walks around just fine?" yes it is hard to put her in them but she does need them or they wouldn't put them on her. She also used a walker simialr to the one in the picture with Brady. It took her no time to get the hang of walking after using it. It is worth it but hard. Feeling for ya!!

Ava Jewel Leilana said...

Brady is so cute! As from what I have read he has come so far, hang in there.

Michelle, Tim, Aidan & Ari said...

Oh goodness, I know exactly the feeling you felt. I think it comes when we are reminded (with what feels like a neon sign) that our kids are truly different and that "it wasn't supposed to be this way". It stinks. I don't think it will ever get easier but I do think as time passes and the rug is pulled out from underneath us...we are, with each passing year, a little quicker to stand back up.

Michelle said...

I think that would have thrown me off first thing in the morning too.

what a cute pic of Brady in the walker though!

Katie said...

i hate 'those' moments. The ones that come out of nowhere and smack you square in the head yelling "this isnt 'normal'!!! "

You know the theory, of course and in this case, these products are designed to help and they will. But it still hurts.

Amy said...

I freeze and grind my teeth every time Avery's therapists recommend specialized equipment, or try to "adapt" her stuff. Her therpist secretly hate me because I can be so stubborn. My opinion only, and just an opinion, some things are only great in theory and do not always come in handy in real life. HOWEVER, for Brady I would get him a walker for sure! And a stroller sounds great. I use Avery's all the time, and could see using it for awhile. But I can relate sister!!!!

Tara said...

My heart sank as I was reading your post. It's days like that that really bring you down. The pictures is adorable and I do hope this equipment helps Brady...but it's so hard seeing your child "need" these things to get them going. Hang in there,