A Call from Hollie

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Hollie with an ‘i’.

She was being patient with me.

‘dot.’

I got it.

‘bc’

‘childrens’

‘dot sea eh’.

You need a #referralforthisclinic.

 

I’m being dramatic.

When you look at the BC Children’s website – you may not have – you will see that there are several categories to log in to:  allergies, asthma, cancer and blood disorders, gastroenterology, gender, multiple organ transplants, neurology, pain, plastic surgery, renal, rheumatology.

BC Children’s Hospital.

Children’s.

In case you were wondering, I got a call today.

I got a call because in spite of work transitions, bill requirements, taxes being due on Monday, emails and texts from people who want things right now (because it is important), Gabe needs an EEG.

We live in Canada’s north, so…Gabe needs an EEG  thousands of miles from home, and he needs it next Monday.

Hollie said:  if you don’t come now, he won’t ‘fit in’ until September.

She was good, and kind and trying to be helpful.  I was thinking about telling my new boss that I would have to have next Monday off.  It wasn’t Hollie’s fault.  I took her info.  She waited for me to check my schedule.  Like a saint.  Like a goddamned saint.

If this seems big to you, let me tell you.

  • Gabe had six tonic-clonic (grand mal) seizures a week (minimum) starting in August 2011.
  • Gabe has Todd’s paresis – a condition where one hemisphere of his body is effectively paralyzed for up to an hour after each seizure.
  • He has been seizure-free since December 2015.
  • His medication costs $500 a month.
  • I’ve lost jobs, relationships, and what feels like years from my life.
  • He is whole, and smart and really good.
  • I am lucky. We are lucky.
  • They are checking him because it might be gone.
  • They want the test to see if he can do without the meds.
  • I am terrified.
  • I am terrified for him.

What if they test him and they are wrong?  What if they test him and say it is gone and they are wrong?  What if they pull the meds…and they are wrong?

But, what if it is gone?  This is the scariest of all.  What if they say it is gone?

Because then I will spend the rest of my life waiting/not waiting for the next seizure.

Or what if it’s not?…that’s worse still.

My boss said:  ‘oh Angela, you do what you need to do.’

Like a goddamned saint.

I’ve known her for three days.  Three.

And here I am…8 PM in Yellowknife…thinking these things while he’s in Whitehorse at the movies.  I’m grateful he can do that.  So many kids can’t do that.  Which is perhaps something you can only really understand if Hollie calls you, and you go have to go to the BC Children’s website.

People say they don’t know how we do it.

If you’ve seen what I have…you would know how lucky we are.

We are lucky.

I am scared that luck won’t last.  The luck has run out many times before.

I will let you know how it goes.

Thank you Hollie.  Thank you.

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To Rock It

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“He said ‘you didn’t rock it.’ ”

My son looked at me, half-frustrated that I asked for the follow up, and half-gutted by the statement.  I listened, walked away, bought him a movie ticket, dropped him off, went back to work, texted a friend, picked him up, came home, put him to bed and cried.

‘You didn’t rock it.’

We live in sensitive times. We talk about pyschosocial hazards and mental health in the workplace now.  We know better, we do better, we are better.

‘You didn’t rock it.’

We are sensitive people.  We mind our words.  We pay attention.  We try to use the right pronouns.  We check our privilege.  We ‘get’ it.

We pat ourselves on the back all day long about how much attention we pay to what people are going through.  We are better than the folks who don’t accept differences, or advocate for social issues.  We are ‘good’ people.  Just look at our walls.

‘You didn’t rock it.’

Maybe he blew an audition.  Maybe he blew a test.  Maybe he didn’t show up for something he was supposed to show up for.

However, let me assure you, teacher.  He definitely rocked it.

You see, my kid has lived half of his life with a serious chronic illness.  He has suffered hundreds of painful, humiliating, depressing and uncontrolled seizures.  He has known the heartbreak of thinking he was better, and discovering that he was very much not.  He has carried the load of knowing that ALL his life, he will need to be medicated, that he can’t be the pilot he once dreamed he’d be, and that at any goddamned moment he might collapse in front of his friends and lose control of his body.

Every day, he wakes up and puts on his socks and faces all of the struggles and dramas of adolescence.  He does this as a kind, outgoing, accepting, empathetic and loving kid.  He works hard in school, laughs, plays, and is the bravest person that I know.  He does this while smiling.  I suspect that is why you don’t know that he is one of the mightiest warriors that you have ever met.

Maybe you didn’t notice.  Maybe you think he’s just like everyone else.  Maybe you see Clark Kent and not Superman.  He’d consider that a win.

But whatever you do, don’t tell him he ‘didn’t rock it.’

Because you don’t have the slightest idea what it takes for a kid like my son to be the person he is.  You don’t have a clue what his medication does to his body, the way the thick fatigue overtakes him, how his face erupts with acne, or the way he faces the serious look on his pediatric neurologists’ face when she talks about the critical importance of adolescent dosage compliance.  You don’t know the stress he was under each and every time that a doctors appointment made him late for your class.  You don’t know the effort that goes into being ‘just like everyone else.’

So tell him the areas that he can improve, tell him that you believe in him, or tell him that you know he can do better next time.

But when he stands up bravely in front of you, trying his best, being and good and fair to everyone, and somehow the dragons win that day, do not tell him that he ‘didn’t rock it.’

Because, privileged teacher, that child rocks it in ways I hope you will never have to understand.