Well...that's a loaded question. With a multi-layered answer.
For one thing...it's nigh impossible to find the time!
Literally...I have two hours a day.
Two precious hours.
That would be when Trevy's napping. Which is really the only time of day that he's not wreaking havoc. Ahem...I mean exploring.
And two hours really boils down to two minutes. Because I have two other children. Who no longer nap. Although I've been kicking around the idea of reimplementing...
Almost nine year old boys still need naps...right?!
Anyway. You get the drift. Trevy is keeping me hopping.
Which brings me to another layer of my answer.
Trevy is doing wonderful! And I want to dance and celebrate and climb on the rooftop and announce his amazingness to the world!
We are seeing developmental forward movement. He had maybe...on a slightly less foggy day...two words. Tops. Before surgery. Now he has at least 30! His pronunciation is very immature. Baby-ish. And you probably wouldn't understand him. But we do...so who cares! And his comprehension is through the roof! He can now follow simple one or two word instructions. Sure...we have to repeat the instruction multiple times and sometimes physically guide him in the right direction. But he's doing it, by golly! He's doing it!
In fact...the other day while I was primping in the mirror. It was one of those rare occasions that I decided I looked haggard enough to warrant a two minute Almay intervention. Which is why I was leaned over in the mirror. And not paying attention to Trevy. Except to hear him opening and closing drawers behind me. Cause - effect, people. He's addicted! Anyway...he evidently found my sock drawer. Cause next thing I know. He's tapping my foot. I'm not sure how many times before I noticed. I have a tendency to zone these days. But when I did finally notice...it about blew me over!
Because he wasn't just tapping my foot. He was tapping my foot with a pair of socks! My foot with My socks! And saying "saaaaah" "saaaaah" "saaaaah". In case you didn't catch it...that's his approximation of sock!!! One of his 30 new words no less!
The fact that he was able to sequence all those pieces together...open the drawer...find the socks...resist closing the drawer to instead bring the sock to MY foot...and say "saaaah". Repeatedly. Until I noticed. I mean...seriously...he had no idea we had feet on our bodies four months ago! Never mind the idea of accessorizing them!
Blown the heck over!!!!
And we're seeing amazing little things like that all the time. Right now it feels like every single day!
And I want to share my miracle with the world! I want to tell the cashier at Walmart. And the dude who pumps my gas. And his therapists. And doctors. My family. And friends...
and everyone who follows our blogged out journey here.
it's not so easy to pound out my heart thoughts lately.
Partly...because with each of Trevy's gains my heart squeezes with hope...and heartache. Heartache for those of you who are holding beautiful, amazing little kids through gobs of seizures. Daily. With no end in sight. My heart is shattered for you. Not a week goes by that I don't weep. Genuine salty tears. Weep. For your families. For mine. That our lives were ever touched by the Seizure Monster.
My heart squeezes with worry that I'll lose some friendships along the way. That maybe our relationship was forged by the sister/brotherhood of battling daily seizures. And now that Trevy is a handful of months seizure free and having beautiful miracle moments...maybe that changes things?
My heart squeezes the breath right out of me every time he does something funny. You know...funny. Like today. I'd cross my heart and swear I saw his eyes roll. Several times. But was it in my head? Because when I'm honest with myself...I know I have a bent towards drama. But still...it's hard to breath. And he's been clingy. Can he feel the breath of Monster on his neck?
It's hard to post about all beauty. When we're still living with the broken. Removing half of his brain didn't erase the touch of the Monster. The evidence is there. Slaps me in the face every Thursday. Gymboree day. EI Gymboree day. Somehow it hurts more to see the deficits next to other EI kids...than it does when he's with his peers. The evidence haunts our dreams...like Toby's the other night. When he dreamed Trevy spoke to him..."like a real kid". And asks me if Trevy will ever be able to talk to him. Or when Trevy rubs his head. He sometimes feels for the jagged line running the length of his skull. And I wonder if he remembers? The evidence is there when my mom and I have conversations like yesterday's. About changing her will. And leaving her house to whoever takes care of Trevy. Because who'll love and care for him when we're gone? The evidence in the pathology makes it hard to believe he'll ever be able to fully live independently. And Grams' basement is already essentially a self-contained apartment. Which sounds so melancholy, right. And yet we find ourselves thinking about it sometimes. And rewriting wills. Just in case.
There's joy. But there's also large doses of reality. And I want to share the joy...without diminishing the reality. And I'm not sure I know how to do that? Do I even make a bit of sense? Ack.
So I guess that's why I've been so quiet lately.
Also...I've been feeling icky. And writing letters to Little League boards. And juggling therapy every single day. And prepping for Trevy's first IEP meeting. Monday! Yikes! And hashing out approvals with insurance. And still dealing with radical brain surgery bills. And attempting to play mommy. Which judging by the, like, eight baskets of laundry piled in my bedroom...I probably should have spent my two hours folding clothes!
But for what it's worth...I don't mind spending it chained to the 'puter either. Cause you know...I love yas.