Help Us Help Henry


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Two weeks ago was Henry's first MRI. He had to be sedated and it was traumatic for all. In three weeks he will have to go under again to be hooked up for an EEG. After which, he will be expected to remain in his bed for 24 hours to undergo testing for seizures. Nervous, exhausted, overwhelmed–these words do not even begin to describe the emotions these procedures represent. What is more, is the startling reality that a parent must wade through lost reports, unresponsive experts, insensitive schedulers, later than late appointments, unclear instructions, and rushed through explanations on top of the day-to-day tired toddlers, scary unknowns, scrapes and bruises, therapies, and most grueling of all, the waiting. While I don't mean to underscore the fact that we have had some exceptional therapists, physicians, and case managers it is important to note that we have had just as many failings. It took four doctors and five months, before one, instead of assuming I was just another worried mom, took my concerns seriously. It took another three doctors to convince someone to look at my sons brain, and this was after diagnosing him with a BRAIN disorder. It has taken endless petitioning to get henry basic services through the state, only to have them stopped and started over situations out of our control. And don't even let me begin on the hours spent on the phone, on hold, just to be connected with someone on the other line who seems to have no concept of the fear and sadness one must be experiencing in scheduling their two year old's first sedation, MRI, or EEG. The truth is, I get it, these professionals see hundreds of children and these conditions and procedures become routine. I'm sure it is impossible at times to not feel jaded. But they are not routine for us. For mom and dad and scared little baby, they are new. They are not our 9 to 5, but our 24 hours, 7 days a week, 365 days a year and we are paying you to help us with just a few hours of that. #henryjamesandhisbigadventure

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Last night I looked to the right of my bed to find henry fast asleep on the floor. His therapy, though play-like, leaves him absolutely exhausted, and for good reason. He is asked to push past his natural inclinations and connect. To lift his eyes to meet another's, to vocalize back and forth and back and forth until it is a conversation, to use not only his mouth but his hands to make arbitrary movements that seem so meaningless but are so meaningful 👉👍👋. To so many of us, these things come very naturally, something we often take for granted. Not henry, after four months of hard work, he has re-learned and learned 19 words, he is beginning to point, learning to pretend, and has a pretty mean wave "buh-bye". A lot of people told me "when he says no, you'll wish he hadn't!" But every time I hear that scratchy determined sing songy voice shout "nooooooo" I am overcome with happiness. That "no no no!" is a clear reminder of all that is possible. #henryjamesandhisbigadventure

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