an unskewed view

Not to keep beating the drum...

but it's just SO frustrating sometimes.

Dealing with people who get hung up on Trevy's cute factor. The but-he-looks-so-normal people. These are usually the people who only see Trevor for a few minutes out of the week. Or in passing. They're the ones that miss seeing the-more-than-meets-the-eye Trevy. Cause seeing Trevor cry through a cluster of 20 back to back seizures multiple times a day has a way of balancing out the looks-so-normal factor.

I remember in our beginning days with Early Intervention just feeling like banging my head against a wall!

Our first (ink still drying on her degree) Occupational Therapist (who to this day I kinda hate) actually looked me in the eye one day and said,

"I work with VERY affected kids all week. And I really don't think your son needs any therapy"

Just like that!

She couldn't see past the cute. And we (with a this feels rather good flare) fired her for it.

But sometimes one of your child's TEAM members comes in. And you just click. Connect. At the heart. You know it's not just a good fit. It's the right fit!

That's the way it was with our Mrs. Speech.

I know you're supposed to keep professional boundaries n' stuff. But it's hard not to breech them when your Mrs. Speech cheers louder than you do with each accomplishment! And cries with you during clusters. Those moments blur the boundaries.

And our Mrs. Speech has a realistic bent. Which was SO refreshing. In that weird...I don't wanna go there but what if my child isn't okay kinda way.

She would always say things like...

I can't promise you what Trevy's future is. But I can tell you today...he's AMAZING!

Blur blur blur go the boundaries...

Which is why it was heart crushing that our time together was being cut short by a move. Half of our hearts were thrilled for this new chapter for her. The other half was boo-hoo-ing like crazy!

Of course we couldn't let her go without a little gift. After all the gift she's given us this past year has been priceless.

I knew immediately I wanted to give her a hand-made Maasai Christmas star. One that I had purchased myself. In Arusha, Tanzania. Bronzed from the African sun. And speaking Swahili. Before I'd been introduced to the Seizure Monster. And the radical life changes it brings.

Because we only have a handful left I tend to be selfish with them. But I knew she would love it big time!

So a red one went in the bag...

Along with this picture of Trevy...

This picture is our absolute favorite!

The dirty mug...

The sparkling eyes...

The mischievous grin...

The so beautiful I think I might die face...

Tears welled up when she opened the little gift bag. As expected...she adored the star. But the picture of Trevy was truly her heart melter. She said it captured everything she knows he can be. And she would keep it forever!

And we hugged goodbye last week.

The sad tide although less keen...has been lingering. Sometimes the sad does that. It's just so darn hard to shake.

Which is probably why I blubbered as I read her letter. Post marked from her new home. Delivered with the Saturday mail. And even though it's super personal. And though you may not blubber like I did I still want to share how she sees Trevy. Her unskewed view...

"The Tanzanian star...will hang on the wall and be a guiding force for me. Trevor's little mug shot...will...grace my work office. He will be a reminder of what the French call the joie de vivre and to always remember to take pleasure in the simplest things in life.

It has been a real pleasure meeting and working with you all, especially Trevy. (personal side note: it melts my heart when others call him Trevy) Though Trevor's words are emerging, he communicates beautifully through body language, facial expressions, and overall body movement. I will miss his funky little dances that show excitement. I think the thing that amazes me most about him is his zest for life. Even when he has had a rather tough cluster of seizures, he bounces back and is raring to play and explore and he continues to make gains. His outlook on life is the perpetually "half full" theory and I feel ashamed when I complain and kvetch about what ails me. He is truly an inspiring little boy and I feel that I am a better person to have known him."

After I pulled myself together. And the snot stopped dripping. Letter laying in my lap. My heart was pinched.

Sometimes I allow the sadness to just soak...and seep...and saturate...until everything is colored sad. But that's a skewed picture.

Because the real reality is in between the sad there is much to celebrate.

The gains that Trevy's making. Pessimistic me tends to focus on how slowly they come. Rather than allowing my heart to swell that they are still coming!

His funky little dances. That communicate so clearly how happy he is! Truly. Deeply. Saturatingly happy. For some reason I tend to remember mostly the tears. And seizures. Instead of letting myself dwell on the fact that my son can feel happy. Until his little body can't hold in the funky dance anymore.

His zest for life. That shines SO strongly that even an amateur mommy photographer can manage to capture it...

His ability to roll with the punches. I've been so sad about how tired he is after a cluster. Instead of embracing the reality that he doesn't stay down! It may take five minutes...or ten...or twenty. But he doesn't stay down! He's eventually climbing on the dining room table again. Or dancing precariously on the window sill!

The sad that so often saturates my heart-eyes. So often prevents me from seeing how "half full" Trevy lives.

My God...

he IS inspiring!

And it took a letter. From a very special soul. From our favorite Mrs. Speech. To help me wipe the sad from my eyes.

And see MY son. My beautiful...zest for life...glass half full...inspirational son!

Oh sheesh...

And now I'm all blubbery again!

I need to tuck this letter somewhere easy to find. To read on those sad tide days.

And I'm thinkin'...

Maybe more people than I know see Trevy as a whole. A flurry of struggle and courage. A mix of sad...and half full. A combo of yeah I have seizures...but that don't mean I can't climb on the table! And funky dance while I'm up there!


JSmith5780 said...

We STILL communicate with Austin's first Ms. Speech. 4.5 years later, if something great happens, he asks to call Ms. Nancy. And Ms. Nancy LOVES to hear from Austin. She still makes him cookies and drops them off at Nana's house for him. It is therapists like these who shape our kids lives and leave lasting impacts on us!

I am so glad you have that letter as a reminder that our kids are special and loved not just by us as their parent but by others also.


~Mama Skates~ said...

LOVE this post - u got me all choked up, as usual! ;0)


labonte4 said...

I actually thought Trev's little dances were just the cutest thing. And it takes time...lots of time...to make your way through all the emotions and ups and downs this takes us on.

Like I said...when I feel your sadness and hurt....I wish I could just pick you up and put you a year from now. It DOES get easier. More words will come...and he def. has the potential...behind all that cute. I can just feel it!

blogzilly said...

Wow, almost had made it until 5 PM with no tears today, til I read this. But it's the good kind, sorta, not the bad kind. Just truly moving words...and a heaping bowl full of stuff for me to think about. :)

The 'word verification' in order to post has a way of making me laugh a lot. Today's word? Modown...

Holli said...

First of all, I can only imagine how heart-wrenching it must be for every cluster to be accompanied by cries and tears. Although distant most times, Austin has never really done this...maybe a few times in the very beginning. It knocks the wind out of me when he's clustering and smiling at the same time, much less crying. I want to cry for you just thinking about it.

But that aside, our kiddos are a picture of perserverance. They just keep going despite everything. It's truly amazing.

Your post was very similar to the one I had prepared but opted out...mine didn't have such an encouraging ending (one of those funky days). I'm so glad you wrote this though, because it reminded me that Austin is a "half full" personality too..I could learn a lesson or two from him!

And, while I'm writing a book here, I'll mention that we are actually starting speech therapy this afternoon. She's come out 3 times already since Nov. for consults and evals, and I have a feeling that we're going to love her. I've said that from the very first meeting. Unlike our OT who has done a "balance check" on Austin while he was having a cluster...can you believe that? Nudging on him while he was having seizures? I wanted to choke her!

And in response to your last comment...I see the similarities too...and it gives me just as much hope and comfort! And as crazy as it sounds, I'm hoping table-climbing days will come! :)

Anonymous said...


Some parents I click with - at the heart level. Others...

And Ms. fired-OT will likely get better, if she learns from the opportunity you gave her.

Hugs, Barbara