Off he goes.

Deep breath. That should help... right? Maybe not. I knew this day was coming, but in my mind, not yet. 2 1/2 years old? Preschool five days a week? Really? Is that a good idea? Am I a bad mom for putting my little man on a school bus, before he is even potty trained? Well, maybe, I guess....but I don't think so.

Remy started attending the Douglas Road Elementary Special Education Preschool classroom.

I

could

not

be

happier.

He is doing so many new things every single day. I am so proud to be his mom, and forever grateful to live in a "from birth" state. Children in MI, who meet eligibility requirements can receive special education services through the school district from birth. Most states do not start serving children within the school system until the age of three. This, I am sure of it, has played an enormous role in the progress he has made.

Thank you Dr. Chugani, and Kathy, and Dr. Sood (not part of ISD, or even the county, but a HUGE part of our lives), and Kim, and Carolyn (Marilyn too), and Miss Nikki, and Jolynn, and Brenda, and Brandy, and Kirsty and EVERYONE ELSE at the ISD for preparing my perfect little boy for this transition. Miss Michelle, we look forward to an amazing couple of years in your classroom.

Check out Rem on his first day...loving his "pack-pack".

Look at that beautiful squat. It's the little things...

You can't tell, but he is actually looking into the door of the bus, right at the bus driver. Not too sure about this.

All strapped in and ready to go (glasses are off to keep him from throwing them around the bus).

Look in the back seat, you can make out the profile of his hawk. Sad mommy is super proud.

This is only the beginning. And I am loving the way that things are unfolding.

Something to remember me by......

Brodie: "I still want to be an artist when I grow up. And a professional skateboarder."

Me: "Still? Thats sounds really cool Brode."

Brodie: "Do you like my background? I am working really hard on this background. I'll do the monsters next. Should I do two or three monsters on this background?"

Me: "It's looking pretty good dude. How many monsters do YOU want?"

Brodie: "I think three, and I'll do the whole bodies."

Me: "Good idea man. I love it."

Brodie: "If I'm an artist, and I die before you....all you have to do is go to the museum and look at my art. That way you can always remember me."

Me: "Wow Brodie, I hope that doesn't happen."

Brodie: (with an amazing little out-of-the-side-of-his-mouth smile) "I know, but if I do die before you, won't you like to see my art in a museum?"

Me: "That would be awesome."

He is crazy-awesome. I love him.

Pins and Pals....

Happy Birthday to my sneaky little monkey. Of course, it is belated on the blog....as are most things. The celebration, however, was right on time. My Matai is 5.

Wow.

My "middle" is 5. Somehow that feels both wrong and amazing all at once.

I guess a lot of things about motherhood feel that way.

So...one beautiful little boy, bowling, birthday cake, and a zillion little buggers to share it with.

Why is he so positively gorgeous? It really doesn't make sense... but he makes my heart melt.

Well, most of the time. (smile) (maybe a wink too)

The "others" had fun too, and of course, they are painfully beautiful as well......

Are we in agreement here?

Sleep....whats that?

Wow. Just wow. I am exhausted. I would have thought that the worst possible symptom of Tuberous Sclerosis Complex was Infantile Spasms. Surely it is, but at this point I am realizing that it is all relative to the current situation. Remy's sleep schedule is

kicking

my

butt!!

He has, for reasons I can not understand, decided that his two year old body does not need a nap during the day. I, for one, would not complain about said lack of nap if he would at least agree to a decent bed time. Wait, maybe not. See 8 pm bedtime....see Remy up by 2 am.

WHAT IS GOING ON HERE!?!?!?!?!?!?

Apparently, this "normal" when it comes to TSC. "Normal". Thats a funny word. He is an amazing miracle of a little child, don't get me wrong. I would stay up for the rest of my life if it kept him from seizing, but holy crap. I mean, really?!

I need a nap.

Some nights, a little late-night-elmo is in order. He will smash his little face against the side of his playpen just to get a glimpse of his furry little friend.

~sigh~

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.

Hmm.

Catastrophic.

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

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,

every

single

day.

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.

$$$$$$

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.....