Thursday, November 13, 2014
Thursday, July 10, 2014
I have often felt a guilty pang sharing the happy moments.
Because of Trevor’s medical challenges I am very sensitive to those that are living some of the darkest moments of their lives right.this.very.moment.
I never want anyone to feel like I’m rubbing our “happy” in.
If that makes sense.
It also drives me bonkers that people see a snap-shot in time and so easily believe it represents the whole.
Trevor has many, many happy moments.
I cherish them deeply. He has taught me how to appreciate glimpses of beauty in a way that would never have been possible without him.
But our happy is always mingled with tragedy.
In so many of those happy moments we see glimpses of the boy he could have been…
and our hearts smile-grieve.
And long deeply for the day when Healing washes over him…and us all.
coupled with distorted perceptions…
could never share the whole story.
But nothing other than living IN the story can ever fully capture it.
This past year in particular…I have been overwhelmingly drawn to embracing the happy moments. Cherishing them even more. And sharing them too.
Maybe it’s because Trevor could have died last year. Indeed, his sister still has nightmares that he did. So scary was that night.
Maybe it’s because we’ve faced some other real health scares this year as well. The kind that effect Trevor but don’t belong to him.
Maybe it’s because this world is so saturated with sadness and groady and bitterness on every side that sharing our happy moments with each other isn’t only sweet…
These thoughts have been swirling in my heart for a while. Sharing them today was inspired by this post. Which you should totally read!
Thursday, June 26, 2014
Most of the seizures Trevor has had throughout his life have been quick, jerky movements. In seizure-ville, these are known as Myoclonic Seizures. I've seen hundreds of thousands of these seizures since he was 7 months old. I hate to say that I've grown comfortable with them. Because I'm not comfortable with seizures period. But I know these nasty little beasts. They are predictable for me. I know when to worry and when to just give him cuddles.
He has yet a new seizure type emerging, though. And it’s totally throwing me for a loop. I hate them. They are so much more visually disturbing. His right arm raises up. Not straight, though. It’s crooked. Shaped like a half moon. And sometimes it will rest on his head involuntarily. Almost like he's patting himself. His head turns slightly to the right and his eyes are…just weird. Everything slows down. His movement, his speech. To me, it feels like I'm watching a robot "power down". His body kind of hunches over. And he moans. It doesn't really last that long. Anywhere between 1 to 3 minutes. But compared to the quick myos it feels like an eternity. And I hate them.