Sunday, December 2, 2012

In Which I'm Really Tired And Cheat

It's pretty late and I have yet another ridiculously busy day tomorrow, so I'm copping out and posting something I keep meaning to put up and haven't gotten around to yet.  Remember that speech I was supposed to give for CTC's fundraiser back in October that I didn't end up reading because Connor decided to have a ridiculously long seizure?  Several of you have asked if you could read it, so I'm going to just go ahead and put it up here.  Ta da! 


In the fall of 2006, my husband Jeremy and I loaded up our car and drove the 2,000 mile journey from Dallas, Texas to Fort Lewis, Washington, accompanied by Connor, our six month old son, and Cricket, our very carsick cat.  I figure since our marriage survived that car trip intact we’re stuck with each other forever. 

Also crammed into the car was Connor’s huge collection of medical equipment and a steadily growing laundry list of diagnoses.  I’d given birth to a medical landmark; our son had just been diagnosed with a genetic condition so rare he was the only known case in the world.  He has an unbalanced translocation—where one part of a chromosome is deleted and part of another chromosome is duplicated, and his particular issue is so rare that it doesn’t have a proper name—just a dozen word description of where on his genes the deletion and duplication occurs. 

It’s amazing how just a tiny error in the blueprint mapping out his body could have such dire consequences; Connor has over two dozen separate medical conditions caused by his genetic issue, affecting nearly every system in his body.  He had his first surgery at six days old to remove his right kidney, which was swollen up so large it was bigger than his lungs.  His second surgery to fix his twisted intestines was done two weeks later.  Whole swaths of his brain were missing, smaller or formed differently.  He had a heart condition, visual impairment and hearing loss, and profound developmental delays.

To make matters worse, at two weeks old he was taken out of his isolette for a diagnostic test, got too cold, went into shock and one of the fragile blood vessels in his brain tore, causing him to have a stroke.  This did further damage to a brain that was already struggling.  We saw a lot of grim-faced doctors who used words like “terminal illness” and “brain-stem response only.”  We were told he would never move his arms and legs with purpose, never recognize us or communicate, and would almost certainly die in the first few weeks after birth.  They were sure he’d never see his first birthday.

Despite the dire predictions Connor’s condition slowly improved until he was well enough to leave the hospital.  The kid snoozing in the car seat as we wound our way through the pass in Colorado and headed across Wyoming didn’t look like he was about to die at any minute.  He looked adorable.  He had a button nose, huge liquid-black eyes that would slowly change over the months to a startling green, and beautiful star-fish hands with long, tapering fingers.  He was also bald as a cue ball and missing his eyebrows, which had been rubbed off by the hat he wore in the hospital for his c-pap machine.  In my post-pregnancy emotional state I was nearly as concerned about the eyebrow thing as I was about his huge list of medical conditions, because I was convinced they would never grow back and he’d be made fun of in school not because of his disabilities but because he would be “that kid with no eyebrows.”

So we settled in at Fort Lewis, Jeremy reported in to his job as an army officer, and I set about the monumental task of figuring out how the heck to parent this special little guy.  Somehow I hadn’t been issued the magic wand with the ability to fix everything that I figured most new mothers were handed on the way out of the hospital, and my liberal arts degree left me woefully unprepared in the medical knowledge department.  I threw away my copy of What To Expect The First Year after it started talking about how baby should “have good head control and be pushing up on her hands” and holding my baby still felt like cradling a tube-sock filled with jello.  I felt increasingly isolated and helpless because I knew I needed to do something to help my son, but I didn’t have the knowledge or the tools to figure out what to do on my own. 

After about a month of waiting on a list, we were finally able to get Connor in at a program for physical and speech therapy.  We attended all of four sessions before the company abruptly went out of business, leaving Connor and hundreds of other local children out of services.  I put Connor’s name on the waiting list of every therapy clinic I could find, and a few days later I got a call from CTC.  They were opening up a clinic in the Tacoma area and doing their best to help as many families as possible, and they had a physical therapist who could work with Connor.  They’d add speech therapy in to his regime as soon as they could. 

CTC changed our lives.

Connor began working with Laura down in a tiny house located next to a junkyard that served as CTC’s temporary quarters while they worked on finding a more permanent area to house their offices and therapy rooms.  Soon sessions with Julie, a speech therapist, were added in, and later on Jolie, an occupational therapist, worked with him as well.  For the next five years Connor traveled to therapy several times a week, beginning in the little house, then moving to the upstairs rooms in a church, to their newly renovated building off of Hosmer, back to the church when the building flooded, and then to Hosmer again once the repairs were finished.  For the first time, I wasn’t alone—I was surrounded by people who understood how terrifying and isolating having a child with special needs could be, and who were eager to help empower me and Jeremy as we navigated our new world.

Under their care Connor began doing things that based on his medical conditions should have been impossible.  It was there that he reached out and activated a toy for the very first time.  It was there that he first sat on his own, wobbly but completely unsupported.  He received his first pair of ankle-foot orthotics and learned how to stand with assistance.  He rode his first pony at a CTC Harvest festival and loved it so much he refused to get off.  He began communicating with sign language, making choices, and allowing me to have a window into how he interacted with and saw the world.  I still tear up thinking about the first time he signed “Mommy” and reached out for me.  I don’t think there’s a more precious gift anyone could possibly have given me. 

Over the years CTC has become a life-line, and its therapists have become my friends.  They’ve thrown themselves into finding solutions for the unique problems Connor’s conditions present as they arise.  When Connor had his first-ever seizure and collapsed at a therapy session, they called 911 and held my hand until the ambulance arrived.  One summer when our unairconditioned apartment reached temperatures too hot to be safe for Connor, Laura even opened up her home to us so we had a cool place for him to sleep.  It’s not just a job for them-- they put their whole hearts into helping Connor, and he’s blossomed as a result.  I will be forever in their debt.

Thank you so much for helping CTC continue to make a difference in the lives of children like Connor and parents like me.  The therapists at CTC couldn’t give me or anyone else a magic wand to “fix” things—no one can do that.  Connor will always be profoundly affected by his medical conditions.  And that’s okay; he doesn’t need to be “fixed” because he isn’t broken.  But what they did do is help Connor become the best version of himself; to live as happily and as independently as he possibly can.  And they have given me and hundreds of other parents like me the ability to do something for my child; to help him become that person.  The things that Connor has learned at CTC have profoundly changed his life and mine for the better.

I will be forever grateful for that.


Simply, Sarah said...

I love your writing.

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Herding Grasshoppers said...

Oh Jess, that brings tears to my eyes - as much for the way you reveal your own heart as for the credit given to CTC :D

And so I click on comments, all weepy... and then read the comment before mine and I'M CRACKING UP! And that's nearly always the way it is when I read your blog - strong emotional connection... and then humor. (But usually it's YOUR great sense of humor, rather than a ridiculously disjointed random troll.)

Julie G

Fiona said...

I have NO idea how you could have ever read that in public.
It is an AWESOME speech, and I sobbed just reading it.
I don't know you or Connor personally, and it was beautiful, meaningful, and did I mention I cried?

But in response to 'Anonymous', hopefully you will find the 'right balance' soon, and stop making me cry ;-)

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