why so quiet?

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!

See me.

Down here.

Spread eagle?

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.

And yet...

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.



Megan said...

I worry about friendships too. And worry about being insensitive to speak about how well Ella is doing in the presence of other IS parents who are still very much in the trenches of seizures. Or when someone calls her a miracle, and it immediately makes me think of all the others who are still waiting for their miracle. It's faith-stretching, and it's hard but also good. I'm learning that pat answers have no place in the seizure world.

I am so glad that you blog. I benefit so much from hearing your perspective.

Lisa said...

Oh Danielle...I could have written nearly every word of this post. I so get it! I too feel guilty that Julia is doing so well, I too feel my heart drop if I see a leg twitch or anything reminiscent of her seizures, I too feel happy and sad in equal measures all the freaking time...it's enough to make you question your mental health! I just get it. Equal parts gratitude and amazement and yet sadness over what should have been and won't ever fully be. We have a special needs trust in our wills for her, with competency testing at age 18, the works. A college fund that I am not 100% confident will be used.

Anyway...all that rambling is just to say, I hear you loud and clear! But most importantly...GO TREVOR!!! The sock thing is so wonderful.

Noah's Mom said...

Whew! So glad you are back. I've missed you. :)

MJStump said...

Sounds like Trevy is making leaps and bounds all over the place..how incredibly Awesome!

I can tell you that it wasn't too long after Kylie was seizure free that there was a loss of contact from some IS families. I'm sorry they are still struggling to gain seizure freedom, and can't imagine how hard and scary it must be for them to still be searching for their child's miracle.

No longer having the presence of seizures doesn't erase the past or the fear of their return or whatever else may come.

All we can do is just adjust to where we are right now and allow ourselves to get caught up in our new normal.

Glad you are back and still plugging away...its what you do :)

Hugs and prayers,

baby trevor's mommy said...

Oh stop it! You girls are makin' me ever more of a sap!



Sinead said...

You haven't lost me nor my wish fir Trevys continued growth. We didn't get our perfect outcome with no seizures and a huge vocabulary but I don't begrudge a perfect outcome to anyone. Besides our outcome was quite good and there's really no perfect outcome. It's good to hear about his developmental burst.

JSmith5780 said...

Hmm, what do i comment on first?

The comprehension in Trevy is awesome. I loved this stage with Austin, seeing all the neurons firing and connections being made at rapid pace. It is so exciting. And of course you are always looking, and watching and wondering. It never stops, BELIEVE me. I still see Austin get into a funk or be overly emotional for a few days and the back of my mind starts to race. I panic and then it goes away. I'm not sure I will EVER be able to relax completely.

As for friendships made. Everyone in the IS world will agree we need the positive cases, mixed in with the negatives so we can see the ups and downs. Sure it's hard to celebrate when you know someone else is suffering, but it gives them hope too, that their child will be where Trevy/Austin/Sophie/Kylie (and all the kids I am leaving off) are now. Don't ever apologize or feel guilty for celebrating successes. EVER!

And try hard not to focus on wills and such. Think about the progress Trev has made in just a few months. Now multiply that by years. He has so much potential. Don't ever count him out. I never thought Austin would make it to where he is, and every day he astounds me. Sure he struggles in school, but I never think anymore that he won't live independently. And like my screensaver says "don't tell me(Trevy) the sky's the limit when there are footprints on the moon"

Hugs for the day!

Adesta said...

So glad to hear that Trevy is doing so well. Even if it does make life crazy!! :D

Anonymous said...

Yey for Trevy :)

And yey for your post, I get you and I say 'ditto' cos you've put it better than I ever could x


Alicia said...

For reals....right now.
The sock story....be still my little heart. :)

Katy said...

sounds like Trevy is doing fabulous.

Hope for the best and plan for the worst--it's a motto I live my life by.

blogzilly said...

Because of my tardiness to this post, everybody else pretty much said anything that I was gonna say after reading the latest.

But I'm thrilled for you and especially for Trevor. It is an inspiration to hear about the positives, nothing more. Feel no guilt.

Oh and quick FYI... 'spread eagle'? I'd suggest dropping that from the vocab when suggesting people look at ya... :) Too much of a slippery slope on that phrase.

I crack myself up.

I really do.

baby trevor's mommy said...

Thanks guys...for celebrating with us...and being here for me. I need you.

And Ken...so big brother-ish of you!

I forget that menfolk read the blog too. I suppose I should have added "fully clothed" to that phrase. :)