some things and a must read post

Not much exciting here going on today so I want to share a link to a post that a friend wrote about her child. He has SMA like Casey and Colin. It truly is a must read!!

Oh, I stopped by the Milton Public Library today for the FIRST time since it was renovated. Wow, nicely done! I picked up two books on CD for Casey; City of Embers and one by Carl Hiasen, and a dog training book for myself.

Jaxon and I had a little training today. I made him sit before we went out which he does fine. Once outside he starts jumping and gnawing on my arm. Have to study up on walking on a leash, sigh. We played some good catch. I'd throw the ball or the new Frisbee and say "bring it!" He get it and bring it back. I'd say "drop it" and show him a piece of kibble and much of the time he'd drop it. I'd have to snatch the Frisbee up pretty quickly and throw it or else he'd grab at it. Little baby steps today.

The boys had a low-key day. Poptropica, some Scooby Doo on-line games and then some wii.

I must also mention Hurricane Irene. So scared for so many of our SMA friends that are in the path of this storm. I know some will be evacuating and I pray for everyone's safety. On a less urgent note, our concert may be canceled due to the storm. What a bummer that would be, but better safe than sorry, especially after the disaster at the Indiana State Fair with Sugarland tragedy.

So here is the post:

Today...
by Kathleen Weber Piazza on Thursday, August 25, 2011 at 8:04pm

August 25, 2011

As I sit and write this entry, there are a few things I need to say immediately:

- Today...is Nicholas' 1st day of college!

- Today...is proof that DREAMS do come true!

- Today...is a MIRACLE in the works!

- Today...is the hardest, scariest, most anxiety ridden day that I have known in a long time!

My heart feels like it is going to beat right out of my body...doesn't anyone around me see it?...can't you hear it?!

Sending your child to college is an emotional time in any parents life. Imagine sending your medically fragile, wheelchair bound, totally dependant child who "they" all said would be "dead before the age of 2" ("they" being the doctors who 1st diagnosed him, I believe it was a "world renown" dr)...Imagine the stress I am going through - I really don't think you can...unless you are a parent of a child with SMA. We SMA parents are a unique breed...we never asked to join this club, yet we are dedicated to it 100%. We can create, build, adapt ANYTHING so that our special child can have the most normal life experience ever!

As I sit here in SUNY New Paltz, Wooster Science Building (we actually found a great little lounge area complete with a huge ROCK coffee table...GEOLOGY is what Nicks' major is and he currently is in a geology lab class)..Oh sorry, I kind of went off track...as I sit here in this science building, I am overhelmed by the fact that my son is EXACTLY where he wants to be...he is living his DREAM! AMAZING!! I can barely write as the tears flood my eyes and stream down my face. I could never have imagined when we were first diagnosed 17 years ago that this is where we would be today!

I'm trying to blend into the walls so that Nick feels his accomplishment without me hovering, but let me tell you...it is VERY difficult! I have always been the one caring for him, sensing what he needs I think sometimes before he even does. Now he is a young man, "walking" through the halls of college...WOW! I thank his nurse for attending with him, I know he is in good hands...but still I worry, wait, I pray. As an SMA parent i think we worry more than any other parent on this planet! It sometimes becomes unbearable, all the worrying, a feeling like nothing is possible. But TODAY...EVERYTHING IS POSSIBLE! TODAY...IS A GREAT DAY!

1st day of Kindergarten!

1st day of College!

The pictures didn't post :( but it's a powerful message.