Wednesday, August 31, 2011

wow…I hated that movie


I’m not sure how else to put it other than to just go ahead and say…


I hated it!


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. 


Anyway…


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.


Barf.


Gag me.    


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…dietssurgeries!) 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.


…danielle

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.

9 comments:

Anonymous said...

I loved the way you expressed your son's gifts.
Almost lyrical ....

He wears a smile that outshines the sun.
He wears unconditional acceptance and love.
He wears a suit of armor made entirely of courage.
He is perfect in his brokenness.

Mrs. M said...

Wow.
When I read the "mentally retarded...." portion my instinctual reaction was a gasp and a loud OH MY GAWD!!!
I just cannot grasp that mindset and that terminology. Won't even go there.
Sick.

As for your little miracle boy, he is absolutely worth every effort you and Jonathon have made....and all that you will make in the future. That's what parenting is all about.

Thanks for the Netflix info because we too are sans cable and Netflickers!

teamaidan said...

Thank you so much again Danielle for processing something I couldn't quite do. I watched this a few months ago when considering diet as treatment for Aidan. My husband thought I was crazy and I cried through the entire thing. I WANT THAT MIRACLE (the seizure free one) and you're right, the ending was very sunshiny, making my ache greater. The only reason I was ok with the struggle of wondering if their son was worth saving is because they hadn't actually lived it. I feel like they were questioning without the full experience that a child could have MR (insert your own term) and still be full of joy and courage and incredibly valued. Can't wait to dig into the movies you recommended.

happy's mommy said...

Anonymous...thank you for the blog-liment. I've been told I wax poetic when I'm all feisty about something. ;)

M...Netflix IS our cable! That's why I'm SO annoyed they're charging double fees!

H...Gifted Hands is wonderful! And Flipped is beautiful (IMO) but bitter-sweet too. Tear jerker city.

...d

Adesta said...

I'll have to admit, I was pretty outraged on your behalf when I read what the father asked in the movie....Sharing in Trevy's journey these last few years, albeit from online only, I've seen and felt the emotions that you and your family have gone through to bring some semblance of normalcy to Trevor's life. You have braved the unknown and have risked a lot to get Trevy to where he is now. And although you may have doubts now and then, I fully believe that you have done exactly what God wanted you to do. Toby, Bri, and Trevy couldn't ask for better parents and I couldn't ask for a better friend. You are an amazing woman D, and not only in my eyes.

Also, right after I read the father's comment, I wanted to run and gather Trevy in my arms and hug him. It should not matter what disabilities a child has, they are worth saving no matter what has befallen them. It isn't their fault, they certainly haven't asked for these things to happen to them!

*sigh* I'm sure he had his reason to feel that way, and I respect the man for bringing these concerns to light, but I know that I could never react that way had it been one of my children. I hope that I would be like you and do everything in my power and beyond to help bring my child a life that is as normal as can be.

The Lundgrens said...

Oh no! I was probably one of those who suggested it as a goodie. I'm sorry you didn't like it.
It's not an "enjoyable" film as the intensity of seizure-land is very well portrayed and seizure-land is well...as we know...sucky.
Still, I will always admire Jim Abrams and his work to bring the Keto Diet out of the wood works. Because, as you said, it IS the miracle for SOME kids. And by golly, we should be hearing about the diet option FIRST, from our neuros. Not later....after everything else has been tried. And the movie did help in those efforts. So, for that I am thankful.

happy's mommy said...

Adesta...I can always count on you to be my cheerleader!

K...you're a cutie pie. So you're allowed to disagree. ;)

...d

Sinead said...

I've watched the movie. The person it is based on is a grown man now. I think the character of the Dad, as a blue collar worker from a different time than this, might have said that because men of that generation grew up in segregated environments and didn't have any appreciation of special needs. So it might have been quite realistic even though wrong.

I think the script is awful and some of the acting is awful but if you watch to the very end (which you can do by watching segment 10 of 10 on youtube) you will see that many of the cast we actually people who had been on the diet so that's why the acting was quite wooden.

I know its the shiny happy people version of keto but it was meant to raise awareness of keto as a viable alternative to the plethora of drugs pushed daily for epilepsy.

Emma's on the diet. Its not going to change who she is but it has helped her development quite significantly so that pleases me a lot.

Anonymous said...

Oh my goodness, well witten Danielle. I had forgotten about this movie... when our son was facing his first surgery our local paper wrote a story about him just days before we flew from Kansas to California for the surgery. I received a phone call from a woman who desperately wanted to make sure that I'd seen this movie because she didn't think that he need the surgery. She couldn't remember what they had done for the child in the movie but it was some diet. I helped her fill in the blanks telling her about the ketogenic diet and how it was unlikely to work on a child who has a known unilateral abnormality (HME) Of course, I appreciated the call but it was somewhat unnerving. Do people really think that a parent would willingly choose to have half of their child's brain removed without doing the research. (the lady who told me to have my child's poop tested instead of surgery is a story for another day...)
Hugs to you and Trevy...