Wednesday, November 11, 2009 for BALL!

Oh, Remy. My sweet, crazy, drooling Remy. How I love him. Every little thing that he does seems to just throw me into this crazy whirlwind of emotion. Every new word, every new movement, every new song, every new game....all of it. I can't help but celebrate. I can only imagine what other people are thinking when I cheer, with unbridled pride and joy when my GIGANTIC two year takes a measly three steps to me. Measly? Perhaps you haven't met Remy:

Have YOU tried to navigate your very typically sized body with no motor cortex. Easier said than done. Well maybe not, I guess. It doesn't really sound that easy now that I think about it, but the point is, that he doesn't have any idea. He stomps around in his walker, experiencing the world in a vertical position, just soaking it all in. He is oblivious to the people who walk up to me and say "Is there something wrong with him?" "NO! I just thought the $500 piece of durable medical equipment was cute. Don't you?" Don't get me wrong, I don't mind questions...I love any opportunity spread awareness about Tuberous Sclerosis Complex and the amazing results that we have had from his Epileptic Resection Surgery (woot woot Dr.'s Chugani and Sood). I am thinking about a bumper sticker. Maybe it will say "I left my motor cortex in my skateboard helmet." Oh, or maybe "Chicks Dig Scars". Who knows. Maybe I'll never make one at all, but I SO want Remy to have a sense of humor about it.

About all of it.

To him, there is nothing that makes him different than other kids. He may, however, be developing some kind of a complex as we pour over him with cheers, and clapping every time he does something. As far as I'm concerned, he SHOULD feel amazing, and I will make sure that he does, every chance that I get.
When he is a teenager, and I am able to witness him drive a car for the first time, I vow to cheer just as I do today when he puts a bean into a container. When he has his first kiss, I may just have a violinist on standby, and I will be screaming like a fool. And I promise, there WILL be bull horns at his wedding.
That's all so far away from where we are right now. Right now, we will celebrate all of the itty bittys. When he makes up a new game where he give zooberts to his therapy ball, and wants to take turns bouncing our faces off of it, I will be proud. I will be in awe of the strength inside of such a little guy, and of all that he has overcome.

Ah! He is just the cutest, most amazing I right?


  1. You know Remy is quite possibly my favorite kid around.

  2. This is awesome. You make me want to cry with how proud you are of him, as you should be. Love you and your crazy life.

  3. I love the way you write...from the heart!