more than meets the eye

I get it.

Why it's hard for some people to wrap their minds around Trevor's IS diagnosis & our obsession with what the future holds for him.



I mean, look at him. SO beautiful. Healthy.

So NOT sick.

On the cover anyway.

And really he isn't. Entirely. I get that too.



But Trevor is more than meets the eye.

He is an IS baby.

Just a few months ago his baby body was wracked by forty plus seizures a day. Just a few months ago our lives crashed into a world we had no idea existed. Just a few months ago we were forever altered in the deepest core of our beings. Just a few months ago we watched as a combo of Hope & Nasty was injected into our baby.

The hope hanging in the air was tangible. So was the nasty. Would he be a miracle? Would he not? We stood there...frozen. An undone mixture of faith & fear. You don't have the luxury of hindsight when you enter IS.



It is a land of little to no answers. No assurances. A lot waiting. A lot of testing. A lot of doctor speak. It's like all these little tiny pieces of some gigantic puzzle that you're supposed to try and put together. Try and force them to make sense. Only you're working blind. Like some morbid practical joke all the pieces are dumped in you lap...but there's no box cover to offer guidance.

It can make you crazy if you let it. So many times I have.


And I think in a way that's why I had butterflies before going to Boston. It was like my mommy-instinct felt that some of the pieces were going to start fitting into place. And I wasn't sure I was ready to glimpse into the picture gracing the cover of our life's puzzle box.


I knew it was bigger than me. I've always known.


Let me assure you that Trevor is okay. But it's not as simple as we were starting to hope.

The speech delay. The way his right thumb is smaller than his left. The slowness of his right side reflexes. The pre-mature favoring of his left hand. The zombie movement in his right arm & leg. The slump of his right shoulder. The struggle to crawl. The frequent falls. The continued abnormal EEGs. The spasms. The cord around his neck at birth.


Each one a piece. Alone...they might not be remarkable. Significance comes when you fit them together.

We learned this week that Trevor is not cryptogenic. His IS is symptomatic.


Trevor has Cerebral Palsy.


The doctor assured us that it's a mild case & he has great hope for Trevor. Our hour long conference included introducing AEDs - which he strongly believes Trevor needs. The very real possibility of brain surgery - to remove Trevy's damaged left temporal lobe. The doctor witnessing a Trevy tumble - and seeing it as something not so innocent. But rather as a seizure. How even with therapies Trev will probably never be the star athlete or give eloquent speeches.


But with lots of love & fight...he's going to be okay.


When I let myself linger on what this means for our future...my insides quiver. I've never claimed to be more than I am. A coward.


But in my heart I know he's going to be okay. We're going to be okay.

I believe it!

I believe it!

I believe it!

Because Trevor is SO much more than meets the eye!