While I have a few moments to spare, I'd like to thank all of our family and friends who came out to Sherwood Brewing last night for the Utica Unicorns/FXAM fundraising night. Some of you traveled a great distance on a Thursday night to hang out with us, and that hasn't gone unnoticed (Dennis & Beverly!). Our local friends, so many of you came out tonight and between the rush of people as well as trying to calm the kids' anxieties, it was a whirlwind. It almost felt like a wedding reception, with the blur of activity, people, snippets of conversation, and pausing for a few seconds to take a sip or bite of something.
Adam, Bruce, & Curtis, thanks for stepping out of your comfort zone and giving Sherwood a try. :) You guys completely made Lori's night, more than we can express in words.
FXAM crew, this evening wouldn't have happened without you. You welcomed us into the fold, showed us that we're not alone, and even though we can't participate as frequently as we'd like, you're always in our thoughts. We wouldn't have gotten as far as we have with the kids without your support and guidance, as well as just the occasionally well-placed "it's gonna be okay."
From pediatrician and dentist recommendations to even something that seemed as simple as melatonin, they've been completely life-changing in our house. To be able to meet a medical professional whose first question is NOT "fragile what?"
And of course, this evening DEFINITELY wouldn't have happened without Sherwood Brewing Company and the old Alpha Team & regulars (Mary, Erica, Meridith, Rob). Lisa, Ray, and Corey, thank you all so much for this and so much more. We had to leave in a rush, so we weren't able to say hi & bye to everyone, or even see who came after we left.
But know that you are all loved and appreciated. We feel beyond humbled and grateful for your love, support, patience, and friendship.
Friday, August 19, 2016
Tuesday, August 2, 2016
The On and Off Switch
Part of neurological disorders is that the brain can be sending out so much uncontrollable energy on its own through the nervous system that, at the end of the day (literally), the body has no more of its own energy left and is just operating on the "fumes" of nervous impulses.
Think of it in terms of being so exhausted by the end of the day physically, but your brain won't shut up and so you have difficulty getting to sleep. Now imagine that in a 4-year-old.
Every.
Damn.
Day.
Of.
His.
Entire.
Life.
We who are in our 20s, 30s, 40s, and beyond every so often have reprieve, because chances are that those fits of nerves come from our daily routines -- job, chores, errands, social obligations, etc. Henry doesn't. He doesn't have the luxury of being able to take a sick day to unplug and unwind (and thus, by extension, neither do we).
This is how his brain is wired, which means that, short of chemical intervention, he can't escape from it.
But this post isn't meant to be a downer or to bum everyone out. It's meant to set the stage for a cute moment that just occurred (because we have to take these moments every chance we get).
Henry was clearly falling asleep while playing because he had nothing left, physically. His body was cashed out but his mind kept going. It got to that delicate point where even though he was trying very hard to remain engaged, his physical being had had enough. So it was time for bed.
I called out, "Henry, bed time!"
He may be non-verbal and very delayed in communication and comprehension, but he knows certain terms, words, and phrases. "Bed time" is one of them (as is "bath time," thankfully).
I walked up the stairs and he tried to sit up....and failed. He curled up into a ball, forehead to kitchen floor. "Bed time," I said again, gently.
He struggled mightily to push himself up to his feet. He got up, and made the semi-circle around me toward the stairs.....and misjudged his turn radius. He was so tired that he turned too wide and nearly crashed face-first into the wall. Luckily, he stopped himself just in time, but it was enough.
I grabbed both his hands and helped him up the stairs into his room. He collapsed onto his bed, and, as per our nightly routine, I tried to lift the bottom half of his body onto his bed and he started giggling because he's just naturally ticklish. I flopped him into bed, gave him his monkey, pulled his comforter over him, patted his head and said "good night."
This was about 15 minutes ago. He's already asleep.
Think of it in terms of being so exhausted by the end of the day physically, but your brain won't shut up and so you have difficulty getting to sleep. Now imagine that in a 4-year-old.
Every.
Damn.
Day.
Of.
His.
Entire.
Life.
We who are in our 20s, 30s, 40s, and beyond every so often have reprieve, because chances are that those fits of nerves come from our daily routines -- job, chores, errands, social obligations, etc. Henry doesn't. He doesn't have the luxury of being able to take a sick day to unplug and unwind (and thus, by extension, neither do we).
This is how his brain is wired, which means that, short of chemical intervention, he can't escape from it.
But this post isn't meant to be a downer or to bum everyone out. It's meant to set the stage for a cute moment that just occurred (because we have to take these moments every chance we get).
Henry was clearly falling asleep while playing because he had nothing left, physically. His body was cashed out but his mind kept going. It got to that delicate point where even though he was trying very hard to remain engaged, his physical being had had enough. So it was time for bed.
I called out, "Henry, bed time!"
He may be non-verbal and very delayed in communication and comprehension, but he knows certain terms, words, and phrases. "Bed time" is one of them (as is "bath time," thankfully).
I walked up the stairs and he tried to sit up....and failed. He curled up into a ball, forehead to kitchen floor. "Bed time," I said again, gently.
He struggled mightily to push himself up to his feet. He got up, and made the semi-circle around me toward the stairs.....and misjudged his turn radius. He was so tired that he turned too wide and nearly crashed face-first into the wall. Luckily, he stopped himself just in time, but it was enough.
I grabbed both his hands and helped him up the stairs into his room. He collapsed onto his bed, and, as per our nightly routine, I tried to lift the bottom half of his body onto his bed and he started giggling because he's just naturally ticklish. I flopped him into bed, gave him his monkey, pulled his comforter over him, patted his head and said "good night."
This was about 15 minutes ago. He's already asleep.
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