Hollie with an ‘i’.
She was being patient with me.
I got it.
‘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.
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.