Friday, April 8, 2016

Some Days & The Sum of Our Days

Simon is turning 8 years old tomorrow.  

Jaime and I, for the last week or so, have remarked how we can’t quite believe it. It happens every year around this time that like most parents, we can’t believe we’ve made it this far. And, like most parents we remember when we thought we’d never leave the hospital with a live child, or that he’d be heart stable and only on two meds and not twelve. Like most parents we see this birthday and are once again amazed that he’s going to eat his birthday cupcake by mouth instead of surgically inserted feeding tube. Just like any other parent we’re concerned about his party and how his classmates (and their parents) from his Special Day Class are going to mix with our mostly queer friends and their mostly typically developing children.  You know, stuff like that.  But seriously, this time of year is both amazing and wonder-full and incredibly hard.

It’s starts to percolate and simmer for me usually a week or two before April 9th. This is that time, 8 years ago, that an unsuspecting and very excited Laura, got to have 3 months and 3 weeks to be a ‘normal’ new mom with all of the insane feelings and questions and exhaustion that most new moms feel. I worried about feeding and sleeping and pooping. Not much else.

It’s a time when I think/grieve the coming August 1st anniversary when it all came crashing down. It feels so strange to know now that those 3 months and three weeks, as intense as they seemed to be, were nothing, nothing at all, compared to what the next 4 months/7+ years would be like.  I didn’t even know what a G-tube was. Hard to believe that there wasn’t a time that I didn’t know about that but there wasn’t.

Then there’s the reality of the present.

We are about to celebrate 8 years of Simon on this earth. He is amazing. He is wackadoodle crazy. He is funny as hell. He is infuriating. He’s sometimes such a mystery and other times so predictable it’s scary.

He is changing and growing in so many ways.  He’s autistic. He’s atypical. He’s into Power Rangers like I used to be into Michael Jackson. He’s losing teeth with new ones coming in at all sorts of crazy angles. He’s learning to shake his butt and is competing in his first Kung Fu tournament tomorrow. His pragmatic speech and ability to converse is growing by leaps and bounds and when there’s a big transition coming up his scripting/echolalia and chirping increase exponentially. (A friend and fellow mom of a child with Autism and I were laughing last night about how it’s true for our kids that “sometimes they seem soooo autistic and other times we’re like ‘meh….they seem kind of normal.’) Simon is now able to get his haircut without being held down and even attended Spring Break camp this year without a single incident (3 days with an ABA aide and two days without!).  He wakes up almost every night and comes into our bed. He has mood swings and still can’t tell you what’s bothering him. He’s not attached to certain things that you think he might be and bonded to other things that I wouldn’t expect in a million years. He can remember names and places from years ago but can’t tell you how he got that bruise on his face (any parent’s nightmare). He’s reading. He likes spicy foods.  He’s got those bright blue eyes that sometimes sparkle like perfectly cut sapphires. He loves the attention of older females and is a master at drawing said females to him. He loves spending time with his Mama playing with his action figures on his bed in his room. He learned how to take his medications in pill form this year but still gags throughout most meals-just because. He loves music. And burps. And farts.

Being his mom is so hard. It’s exhausting and there’s no mastering it.  It’s also so right and exactly what I’m supposed to be doing. I don’t understand it at all but when he’s lying next to me and throws his arm over me half asleep, it’s the easiest thing in the world. When he repeats “I like big butts and I cannot lie” in public for the 15th time in five minutes it’s a little harder.

The world is a better place for having Simon Lev in it. My world is better; more complicated, full, deeply brutiful, and rich.   Thank you Jaime for staying strapped in on the roller coaster with me.  Thank you Simon for being exactly who you are and continuing to become the perfect you.

And thank you to everyone that supports just that.

A long long time ago, in a galaxy far far away...

Checking out the Gibbons at the Zoo, like we do.

First Hair Cut in 2 years

Touring the Fire Station
 after delivering them homemade cupcakes

Driving the Tiller Rig

With a thermal sensor

50+ pounds of gear

On the Job!

Watching The Chipmunks on TV

Likely embarrassed by something Mama and Mommy did/said

Almost 8 and beautiful

Happy Birthday Simon Lev!!

1 comment:

Laura Parrott Perry said...

Happy almost birthday, beautiful boy. I remember when I was teaching in special ed how myopic we could get when things were hard. We'd be in the trenches helping students fight the same battles over and over- and when you're in it that can feel a lot like defeat. It's only when you step back that you realize the very battle you'd been fighting was a pipe dream at the beginning of the school year. Mothering is such sacred yeoman's work, and you two do it so well. It's lovely to witness.