Saturday, June 18, 2011

Officially handicapped :)

At least according to the NYC DMV, I have on of these nifty little things stored safely in my glove department. Its a drop strange but also a relief. So far I used it on Friday when I took the kids to CVS and Stop & Shop. Amazingly the three closest spots were taken! But i parked in teh next row. I looked around a drop as I got out, wondering if people would look at me funny but no one seemed to notice or care. The question is what would happen if a friend or acquaintance saw it. Truthfully, i'm getting better at just being open about the CMT so its probably not the end of the world.

After getting what we needed, I was really in luck. It was POURING rain. Imagine if i had to walk further! Its enough that i'm running (well, no no really but walking quickly anyway) in my crocs which are so slippery when its raining, trying to shield my two kids who melt in the rian and get the groceries in. Score one for a handicapped spot! I also like the fact that you get to put it away when you are not using it, makes it less obvious for when i just want to fit in.

In other news I have been shirking on posting because I am crazy busy now!! Mainly work related activities -- remember I work in a school and its June, which means end-of-year stuff, slideshows, goodbye parties, etc. Thankfully as exhausting as it is, its also so exhilitriating to feel so good at what i do and so needed by those who are benefiting from my time and energy. Hope to share more when I get a few minutes! Throw in kids graduations, a handful of weddings, concerts and other parties and theres isnt a moment to breathe. Hope to update more soon, but may not be till things calm down in July!

Thursday, June 2, 2011

Clumsiness and kids

Poor baby. He falls a lot. Has three scrapes on his knees and legs. Sound familiar? I really thought he would be my CMT-less kid who started walking right on time and wouldn't fall. I'm so sad that hes not. Who knows, maybe hes ok. but I look at him and feel guilty. S is also clumsier than most kids her age, but shes one year older than more steady. Any time i see her galloping on the cement, i cringe and pray that she doesnt fall. ANd when she crouches down and keeps the stance (something I cannot do), i secretly cheer.

Its ok. Y cries and than picks himself up. He doesnt seem to mind his scrapes. Hes really a baby in a lot of ways. He barely talks and always wants to be held. And hes over 2. Truthfully, I dont mind him being a baby. The two kids are so close in age that i dont mind having a kid and a baby. But i do want him to run around more and not be afraid of falling.

I used to be clumsy. i never understood why, in dance class, i couldn't get up without pushing the floor. I definitely tripped more than my friends but I didnt even realize it was connected to this weird disease that my uncle and brother have and we sort of have. Its so weird how little my dad was affected. i wish he was alive so i could talk to him and see his feet (and for other reasons :) ). I also had my share of dislocated knees (my whole family had them). But i didnt really feel like CMT affected me until I started to date and realized what a big deal it was.

I knew I might be passing on my CMT to kids. I'm ok with it. I mean obviously i kind of have to be. There is PGD but its not for us. SOmetimes I wonder how my DH is so OK with the possibility of passing CMT down. I love him for it. Plenty of guys (and girls) would not want it. But he kinda sees the big picture of whats important and that i am who I am despite (maybe because) of it, so no biggie. I am kinda torn of feeling like CMT is not really a big deal, just some minor inconvenience that thankfully doesnt affect the brain or lifespan and you can have a pretty normal life with it, good job, family, friends, etc. Than sometimes i'm like 'this is awful. it cripples you. youre so afflicted. Its the worst thing EVAR!'

I have a kid in my class thats so athletic and graceful. SOmetimes i dream of having a kid like that. who is everything i, and all my family members, aren't. My cousins are pretty athletic even though their fathers father had it (but not their father). Its not that important. I just would love for them to not be affected, or if affected, have it so its not a huge part of their lives. i hope by the time my kids are grown, there is a cure or a very easy way to make sure its not passed on.