Monday, February 22, 2010

Just a thought...

I keep reading. I can't stop really. I love to absorb everything that I can related to Remy's disease.

His diagnosis is Tuberous Sclerosis Complex, but what got him, what really knocked him down, was infantile spasms (caused by the numerous tubers on his brain). The more I read about infantile spasms, the freakier they sound. They are described as a rare and CATASTROPHIC form of epilepsy.



Call me crazy, but catastrophe, in general, is not welcome in my child's brain.

Monday, February 15, 2010

baby steps

I'm having a moment. Actually, I've been having a week. A week of spaztic irrational fear that I wish I could talk myself out of. For the past year, I have been home. I have been here with my kids,




I have loved it. I'm not saying it has been easy...but it has been necessary. Remy needed me, he needed ALL of my time. His body was broken, and he couldn't fix it on his own. I committed to taking him to every appointment, every day, so that he could find his stride.

He has.

(big grin!)

Five therapy sessions a week have pushed this amazing little man to a point that we weren't sure he would get to. Independent walker!!!! And of course shortly after his first steps came sentences. We have a talking walking two year old, and needless to say, an indescribable sense of pride for our "broken baby". Broken? Hmmmm.

He is ready for more. He is ready to see the world, and make friends, and expand his language and social skills (anyone who knows Remy might laugh at the idea of him needing to work on his social skills, but I promise, he does), and to learn appropriate play, and group behavior. While I long to give him these skills, I myself lack the skills to teach him.

Enter the special ed preschool program and Douglas Rd.

Off he goes. Well, probably. We still have to work out the details, but he is ready. I saw it in his eyes at our visit, when he played, and laughed, and.....ran. All with other kids. All with a smile, and sense of wonder that I would be crazy to stifle. Of course he needs me. He will need me for a really long time. And of course I need him TO need me. But today, he needs me to let him grow....

and I am ready.

I think? (this is me holding my breath)

Oh yeah, and I think I am going back to work. I just happened to find the job of my dreams in the midst of all of this. Maybe God is giving me a much needed distraction. Or maybe he is just letting me know it is ok. It is all ok. I am ok. I have survived the worst that life has to offer, and have learned so much about who I am and what I want to be to the world. I want people to feel whole, because I feel whole. (: I've got a lot to give.

Thank you Remy, for reteaching me how to be me.

Wednesday, February 10, 2010


Brodie: "Mom, did you know that if you have broken jewelry, you can get money for it?"

Me: "Really Brodie? How is that?"

Brodie: "You can take all of your broken pieces of jewelry to Cash for Gold."

Me: "Oh, wow. I didn't know that."

Brodie: "Yeah, you can get a lot of money that way. Up to $1,000 a day."

Me: "I wish I had some broken jewlery."

Mind you, this is all while he is drawing pictures at the kitchen table (in his underwear), which turned out to be a toilet, a plunger, and poop. I don't know why gross bathroom pictures made him think of selling jewelry, but who am I to question the inner workings of a 6 year old's brain? But again, I say, I wish I had some old broken jewelry.....