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!!
