Saturday, February 16

Are the Episodes Who He Would Have Been?

Yesterday morning I got the boys breakfast (gluten free Rice Krispies) and as I walked back downstairs I hear Trevor yawning... waking up. I go sit at the side of his bed, he opens his eyes and peers up at me around the sunlight coming in beside him, "Trevor?"

Another yawn, "Mhmm?"
"Do you remember when Trisitan was a baby....?"
"Way back when?" He gives a half grin. An expression that is so very Trevor. One side of his lips curl up farther then the other, the opposite eyebrow arches while it's twin stays relaxed.
I laugh a little as an image of our youngest, Trace, with an almost identical expression flashes through my mind. "Do you remember how he use to never want to take the bottle? And I'd force him to, putting my my fingers through the back corner of his mouth forcing his mouth open the same way I force the cats to take medicine?"
"Yeah, I remember."
"Do you think those episodes ARE the way he would have been? If I hadn't forced sensory and everything else on him? If I hadn't forced him to be normal?"
(You can read what the episodes I'm talking about are like by CLICKING HERE)

"I don't know." All traces of humor are gone, "Maybe."

I knew it wasn't the best way to start the day. But I couldn't stop myself from talking about it. It's been gnawing at me since yesterday. Since I thought about it, "No one seems to remember. None of our family seems to remember that he use to be so different. They use to talk to us about it, but now no one seems to remember. They don't remember that he went from normal to just laying around, they don't remember the not eating, not drinking, not talking, not walking, not holding things. They say things like, 'You act like he isn't normal.' but they don't seem to to remember that he isn't normal, that he hasn't been since he was 6 months old." The words tumble out. The frustration of years condensed to a few sentences spoken to the only other person who I KNOW understands.

I still look at pictures of that first Christmas. Sometimes I wonder who that Tristian was going to be. Would he have been very different then the way he is now? The bubbly excitable, somewhat uncertain little boy I love so very much? Is where he is now somewhere between who he would have been if he hadn't gotten sick and what would have been if I had just let be what would be. He was 6 and a half months old the Christmas of 2007. He was such a happy baby. So busy, already crawling, already sitting up. So in love with everything and everyone. Just weeks later he was different, we thought maybe he was getting sick, or maybe he was about to hit a milestone or something... Then I checked on him one night and he wasn't breathing and nothing was ever been the same again.

Trevor sighs. I know he feels the same way. I know it frustrates him too, "I don't know, I don't think our family remembers how bad it was because they didn't see it as much. My parents saw him a few days a month, it's easier to think he was like the other kids."

My turn to sigh. I know he's probably right, "And if it he was having too bad of a time we just didn't go to family stuff. They never saw the worst times."

Almost never. I remember a family get together where a toddler Tristian was screaming, it was at a Leake reunion and he screamed for hours while I rocked him in a sun room away from the rest of my family, only seeing the occasionally person as they walked through from outside to get something from the kitchen. I was desperately praying he would go to sleep so that he would stop screaming. We were in St. Louis, I'd came with my parents and Trevor wouldn't be there until he got off work and could drive up- hours away. I don't know how many other times I've sat and rocked a screaming Tristian for hours when he didn't seem to want anything other then to scream until he fell into a fit-full sleep. That reunion was a nightmare.

I've only went to one other Leake reunion since, the next year. When Tristian didn't act like the rest of the cousin's children (all within a few years of his age) and my sister (whose daughter is a year younger then Tristian) made a comment about it out loud in the middle of our entire extended family, I was so angry and upset. My cousin Heather(who has a daughter Tristian's age) immediately came to his defense to say she thought he was great. Whether she believed it or not I'll always be particularly grateful for her support that day. The next year I couldn't breathe and wasn't going on my own. The next year we all had colds that day, but I don't know if I would have went or not if we had been well. This last year... I just didn't go. No excuse. Trevor is always working for them and I just didn't want to deal with it alone. Maybe this year, now that things are a little more normal. I don't know.

I got off on a tangent.

I don't know.... I don't know what these episodes are. I really just don't know.

Tristian(6mos) & Cousin Tyler(1.5years)
Christmas 2007
Mid November 2007 These pictures went on our holiday photo card =)


  1. What an absolute cutie pie baby he was. It's great that he has improved so much, but I do 'get' the hardships that come from the family not understanding. It's hard when they don't 'get' it. Really really hard.

    1. Thank you.

      It is very very frustrating.

      Thank you for 'listening' =)


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