do you see what I see?

A friend and I were recently chatting about photography. My other (than blogging) hobby. I thought what she had to say was SO beautiful. And dare I use the word…profound? Insightful. Spot on. Especially considering a comment left many moons ago…by a different friend has stuck with me. Occasionally tumbling around the place in my heart that tries to figure life out. After looking over a picture marathon…he mentioned that there was something different about how I choose to snap shot Trevy. I think she captured…and completed…that thought perfectly!

I know you’re dying to read what she said right?

Well…if you know me at all… Copy and pasting queen am I.

“I read into people’s photography. I think in pictures, we photograph what
we want to see, that’s why I feel like you always have super close-ups of
trevor. You want people to see what you see, you want them to peer into
those beautiful eyes and see the life that is there and the life that has
been taken away.
You also do a lot of side shots because it shows that he
does focus on life and he always looks like he is pondering a thought in
those. ”


Speechless here.

Except to say…that is Photography me.

And no pressure now…

But I’m wondering…

As you scroll through these pictures…

Do you see him?

A little boy SO full of life…

And promise…

And beautiful soul shining out of his eyes…

Radiating from his smile…

But what about the sad? Do you see the seizure monster lurking. Lying in wait to steal life from him. To make him sit on the side lines…far from the water play and laughter. As the electrical storm brews over to the boiling point. And the lightening inside is visible to the world for a spell. If they could only see. All these are the things I see on a daily basis. That I try desperately to share with the world. Because I think his is a story worth being told. Beauty and tragedy included. Monsters and miracles…

And even though I may not focus in as much on The Sibs…

I see the beautiful spirits inside of them as well…

And how our sweet Seizure Boy…

Completes our family…

And makes us who we are…

Who we are Supposed to be…

As together. Because of our Seizure Boy. We’re learning to fight…and love…and accept…and be a family…


And I am not blind to the beauty that Trevy brings…

Except perhaps when my eyes are clouded with tears…

Last thought. A close friend…who yet remains nickless…but is very much loved. Viewed the two pictures directly above. And emailed me what she saw.

A beautiful…amazing…courageous…Seizure Boy.

The Tractor pictures were snapped right as the Monster attacked. I can see it on his face. The tightness of his cheeks. The pursing of his lips. The rigidness in his body.

But as morbid as it may sound…thank you for seeing him. And The Monster he wars against daily. Thank you for not missing a thing…


11 thoughts on “do you see what I see?

  1. It's the eyes. There is a fear in the eyes that these kids express as they stare into some sort of crazy abyss that they cannot explain or describe to anyone and therefore can request no comfort from.

    So we, as parents of these kids, have to be cognizant of every small detail, no matter how seemingly insignificant, to be sure we can provide that comfort without them having to ask.

    And with that, heading back over to the hospital. Great photo shoot BTW…loved it.

  2. just have a way of combining the right pics and words to make me cry. part of it is because you say what i feel, but just don't know how to express.

    i think your friend is right. you want everyone to see trevy as you see him. as this amazing, adorable, curious little guy that is filled with wonder…little guy that is having too much taken away by the seizure monster. our kids are supposed to be full of these precious moments, and not be robbed of them.

    my fave pics of kylie are the profile pics, because that shows that she is our baby..with the little baby profile. i couldnt take many pics of her when she was puffed up on the ACTH because i didnt see her the way the camera saw her…so i wouldnt take many pics of her looking at me. it made me sad, because that wasnt my baby.

    so yeah, i totally get what you mean and why you photograph trevy the way you do. capture him as you see him, as you want others to see and know him..know him as he should be known, as the little boy with the amazing smile and full of wonder…wonder that sadly gets lost amid the seizures.

    just remember that his joy returns with a big old smile for you guys, and he is not lost, he is your baby boy..always and forever.

  3. I don't want to overstate my ability to see into your photos as much as YOUR ability to capture your children such that…I think I do see what you see.


  4. What a beautiful blog… An incredibly brave and wonderful child…. And a mother who would do anything for her children….
    love it.
    Marcia K

  5. As I told Ken in an earlier comment, DON'T STOP taking your photos for even a month!

    I haven't taken near as many pictures as Colby has gotten older….And I SO regret it…

    You capture all of your children so beautifully….Your talent is an amazing blessing…Nurture it and continue…You have so much to share…And we all benefit….


  6. I LOVE your photo taking abilities…the way you are able to capture the moment.

    I have been thinking about you A LOT lately as your DATE is right around the corner. My heart pounds as I think about what this DATE means. You and Ken going through what I went through not that many months ago…it is still so raw but so far away for me. I wish I could be there with you but you know you are forever in my thoughts and hopes.

  7. Amazing. Your ability to capture your kids is simply amazing.

    And yes, I do see both sides of Trevy in the pictures you take. I can see the excitement of trying something new and, unfortunately, I can see the seizure monster just lying in wait…And I ache with the knowledge that sooner or later, that seizure monster is going to attack and steal away his fun and enjoyment.

  8. I was unable to read this amazingly honest and beautiful post tonight as I had so many tears in my eyes. Ian has linked this into Jude's blog. Every time I read about Trevor or hear what is happening in your life I just think how strong you are. ACTH seizures and everything that comes with it can be horrible and very hard, but true there are those chinks of sunlight that break through the grey. Trevor is beautiful. All the best Rachel Marrey.

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