I’m not sure how else to put it other than to just go ahead and say…
I hated it!
Just wait until I tell you what I’m talking about before taking my side. Because chances are…you might not agree with me. And I’m totally comfortable with that. See, I’m on this new mission to be totally completely honest. All of the time. Including now. Especially now. When I’m discussing something that I abhorred from the tips of my chipping multi-color (compliments of Bristel) polished toes to my splits ends!
And the worst part of it is…
I was really looking forward to it too. What a let down.
We’ve been dvd watching fools. Ever since we learned that Netflix would be joining the Capitalists R Us Club. You did hear that new this month Netflix will now be charging a fee for each service? No more dvds and live streaming together. Oh no. Now you have to pay for them separately. And since we be
poor frugal, we’re opting out of dvds. But before the charging begins we made sure to watch as many as we possibly could. Funny how when they were included in the cost we rarely ordered any. Now that they’re not anymore…suddenly we have a queue a mile long! Go figure.
On the list was a movie that I have vague recollections of hearing was a goodie. And anything that has anything to do with epilepsy always makes it on my Trevy’s-mommy-dar. And so it was that First Do No Harm was added to the que.
We’d already been all warm n’ fuzzy after watching Gifted Hands (such a great movie! Thank God for doctors like Ben Carson!) and Flipped (even Jonathan cried during this one! Seriously. Queue it before the fees kick in!). We were primped and ready for another misty-eyed-sappy-leaking-popcorn-eatin’ movie night.
Right from the start First Do No Harm was hyper stressful. Which is a good segue into the only positive from our perspective. The movie was hugely successful at projecting the stress and emotional havoc a diagnosis of catastrophic epilepsy brings. It’s not just a cliché, you know. Your life really can change in an instant. Ours did.
We could appreciate theirs did too. We could empathize with the constant lost feeling. The trying this. Trialing that. The side effects. Each option worse than the last. We have stayed up nights researching. We know too well what it feels like to watch your child slipping away right before your eyes and not having any control whatsoever. We’ve met elusive and arrogant specialists. And we’ve gone behind their backs too. In fact, while Trevy was in Detroit for his surgery Dr. Rockstar ran into our local chief of pedi neurology at a conference. A natural flow of conversation was about Trevor. Being in Detroit. Having almost half his brain removed. Dr. Chief was shocked. We’d cut him out of the loop a long time ago. I dare say, we are saturated in understanding the responsibility we have to question and collaborate in our son’s care. And I also understand the passion to protect and preserve your child’s cognitive development fuels the pursuit of treatment options. I know that. I lived that. I’m living that. Our family understands the financial burden and insurance battles. Hence the downgrading of Netflix next month. Gas for outpatient therapy or Netflix? Hmmmmm? What to do…what to do…
What’s the opposite of resonate? Nauseate? Maybe. I’ll go with it cause it fits. There was already a deep disconnect with our hearts and the direction of this film. However, the part that nauseated us the most was when the dad essentially asked the question…
If our son is going to be mentally retarded (implied by the seizures) is it even worth trying to rescue him?
By time that little scene played out Jonathan and I had already bought out of the whole agenda of the movie. In fact, that’s precisely when we turned it off. And not fast enough either. We couldn’t take another minute of that crap. Jonathan, who may have been even more disturbed than I, immediately googled the movie to see how it ended. We already had a good idea. But we just wanted to know. And sure enough. Mom discovers the Ketogenic Diet which cures their son who regains any developmental deficits he’d incurred as a result of intractable epilepsy and they all live happily ever after with the child parading into the sunset on top of his mommy’s fave horse.
Listen, I understand the theme is based on a true story. And I understand the Ketogenic Diet has been a miracle for some children. Just like ACTH and radical brain surgery has been a miracle for some children. Don’t miss my emphasis on some. I know a handful of children who have found sustained success with the Keto Diet. I am in complete agreement with John’s Hopkins new protocol of trialing Keto first to battle Infantile Spasms. I wish to God we had trialed it with Trevy in those beginning months. Although, even if the diet (or other treatment options) is successful in achieving seizure freedom that does not always mean typical cognitive development is a given. Which was really a main theme in this movie. But don’t mistake my disturbia for being anti Keto. I’m a gazillion-billion times PRO any (meds…diets…surgeries!) treatment that helps rescue children suffering from seizure disorders. Especially of the catastrophic nature. .
What I am not a fan of is this idea that the end game…the golden ticket…the pot of gold at the end of the rainbow is being…
mentally not retarded. (Insert the words that suit you better: Mentally handicapped. Mentally challenged.) Like anything other than cognitively whole is worst case scenario. Which was the gist of movie as far as we could tell. Silly me. I thought there were other darker ends that were worst case. I thought seizure freedom was the most important thing.
I’m not bitter that some children do escape catastrophic epilepsy unscathed. I celebrate that. Genuinely. I wish it for all these little babies. But sadly…that is the exception. Not the vast reality. And the movie…in my mind was misleading and disturbing in it’s agenda. Maybe there was a disclaimer at the end. Like on those weight loss adds. Where the skinny girl standing in the fatty’s jeans disclaims “results not typical”. Maybe there was something like that. I don’t know. I couldn’t stand to watch another moment. All I wanted to do was race upstairs. Pull Trevy from his crib. And hug him so tight he’d know to the depths of his soul that he is loved. Scars and all. Instead Jonathan and I just sat on the couch squeezing each other’s hands like we meant it. And I was intensely grateful for a husband who has a beautiful and deep rooted sense of what is really important. I could feel our hearts knitting closer together. So, okay, maybe there are two good points to the movie?
Trevy wears scars left by catastrophic, uncontrolled seizures. He is cognitively impaired. He is a functional maybe two year old…trapped in an ever growing four year old body. His future is still playing out. We have no idea where he’ll developmentally land. But we do know where ever that is will never be cognitively scar free. Because Trevy wears scars left by catastrophic, uncontrolled epilepsy.
He also wears a smile that outshines the sun.
And joy that radiates from every pore in his body. Every curl on his head.
He wears unconditional acceptance and love. He’ll say hi to you even if you are put off by his loud and quirky ways.
He wears a suit of armor made entirely of courage. Daily.
He is perfect in his brokenness.
And yes…he has always been worth rescuing. Cognitive impairments included.
ps. This post is a representation of my own, personal opinions. To which I am entitled. Compliments of the US Constitution. I welcome comments, even those that are not in agreement. However, I also practice my right to moderate.