We’re gathering up the goods … Again.
The gummy bear blanket
The favorite books – HUG, Dora’s Starry Christmas, The Owl Babies
Three of the same fidgets for peeling / picking / pulling
A bag of Kix for the car on the way home
We’re headed to the hospital … Again. Three times in three days.
This time for the Brain MRI – under sedation. Lying still simply would not be possible for my girl. She would be terrified. Instead, she will fall asleep with Mama at her side and, as I’ve already told every hospital worker with whom I’ve come in contact, she will wake up with her Mama at her side.
There’s an odd familiarity to all of this. An eerie deja-vu. Walking the path of a new diagnosis, a new awakening, a new relief, a different fear. Learning a new type of advocacy, a new language, joining yet another new ‘club’. And, as we move through the haze of it all, an oddly similar sense that once again, we stepped into the middle of a minefield and got grazed by a bullet.
As they told me during the 24 hour EEG to push the red button whenever there was ‘an event’ and I said, “From what we understand, her seizures are entirely sleep potentiated. I don’t expect to push the button at all,” I felt it. As so many of you have come forward with advice about how to handle grand mal seizures, and I’ve said, “Oh, that’s not what we’re experiencing,” I’ve felt it. As we’ve learned more about the type of seizures that we *think* she’s having and the fact that they are, by far, the most likely to be outgrown, I’ve felt it.
I once wrote,
My Brooke’s autism – our family’s autism – is a fact of our lives. It challenges each and every one of us – none more than my baby girl.
We walk a high wire, arms out, heads up. We search for our footing; we fight for our balance. We scan the crowd. We seek compassion. We sniff out pockets of understanding.
We hound the experts; we beg, borrow and steal the tools for our girl to live the fullest life she possibly can. We pray for acceptance. We try our damnedest to celebrate what we have the luxury of calling her differences.
It isn’t easy. Not by a long shot.
But our neighbors on Autism Street live vastly different lives.
They live in houses where autism is about survival. Where there are no words. Where connection, engagement, a momentary, fleeting interaction is everything.
Where constant vigilance takes its toll. Where sleep is a precious memory. Where children growing up and growing stronger is terrifying.
Where tempests brew without warning and siblings are versed in self-defense. Where psychotropic drugs are a necessary evil. Where cabinets and pantries are secured behind lock and key. Where seizures are constant. Where skills once mastered vanish with the wind. Where potty training happens – again and again and again.
Where children vanish in the blink of an eye – wandering into the world armed with superhuman coordination, uninhibited by any sense of danger.
When we host a block party here on Autism Street, we’re reminded that our high wire act is really awfully quaint.
It seems our epilepsy might be the same. While the toll that it has taken on my girl’s language is by no means benign, it looks so far as though, God-willing, it will be manageable.
And that, for whatever reason, we’ve once again been touched by something potentially disastrous, yet spared the worst of it.
I don’t know where I’m going with this. We leave for the hospital in 45 minutes. There’s not enough time to play wordsmith, nor to find a tidy ending to this post. Besides, it’s a story that is still unfolding, bit by bit and test by test. All we can do is keep walking.
See you on the other side …