Waitin’ On A Sunny Day

“It’s rainin’ but there ain’t a cloud in the sky
Musta been a tear from your eye
Everything’ll be okay” (Bruce Springsteen)

I was in hospital two weeks ago and I called Ellie Mae a Superhero.  I wasn’t referring to her as a Starfire type character with the power to harness solar energy, more like an X-Man, with a mutated genetic trait whose ability on this occasion was an immunity to drugs. (If you’re not a comic book geek you won’t understand any of that!)

Following a long period of epileptic seizures she had three doses of “Rescue Meds” at home to sedate her and break the cycle.  At the hospital she was given four more without success.

But talking to the doctors we agreed she was a Superhero.

“Hold her tight Dad, I need to get this needle in the back of her hand”

That was to insert a canula, they were concerned enough that there was no time for numbing the area with the usual array of magic creams.  Just hold her tight.

And they did it twice.

My response was “She’s had worse”.  Because of course she has, she’s had more hospital visits and procedures than most of us.  I’ve never had an overnight hospital stay, she’s had a lumbar puncture, she has no competition in the superhero stakes.

 

The doctor told us the issue may be a growing tolerance to her drugs.  That’s great news because as any epilepsy sufferers will know medication is a moving goal-post.  In the time they take to work you get used to them and have to change.  This one treats your hand tremors but makes you sleepy, that one makes you more alert but gives you hand tremors.  It’s frustrating but acceptable.

On Monday we were expecting to be given a change of drugs, maybe a course of steroids to break the cycle, and then go home.  Instead we were told we had weeks rather than months or years left with her.

I knew the doctor was wrong because we’d been told that children with Batten Disease rarely reach their teens.  I’d played safe and decided in my mind that we had her until she was 10.  At 10 years old I’d start to panic, wondering if each day would bring some development we couldn’t get back from.

But Ellie Mae is six.

Two days after going to hospital we were told she probably had days rather than weeks.

I shouldn’t have been surprised because even Superheroes die.  Superman, Batman, Spiderman, Captain America, all the Robins, Flash, Daredevil, Green Arrow, Green Lantern, Phoenix (and it’s every couple of weeks for her).

They’ve all succumbed at some point and some of them were pretty heroic, but they all chose their path.  Yes, I appreciate that Daredevil didn’t ask to have toxic waste spilt in his eyes as a child but he did decide what to do with the power it gave him.  He could have chosen to just muck around the rest of his life.

But Ellie Mae didn’t choose any of this.  She accepted the disease when it first appeared and gave herself to tests & procedures; EEG’s, lumbar punctures, MRIs, general anaesthetic, local anaesthetic, eye tests, swallow tests, hearing tests.

And she dealt with it all with her usual cheeky manner; as Rod once told me, she was always the happiest girl in any room.

Ellie Mae passed away at 10:30 this morning, 7th May.  She was 6 years old and had been fighting Batten Disease since she was 3.  She chose to fight it in her own style, with little complaint and often seeming as if she didn’t have a care in the world.

A Princess and a Superhero.

“Hard times baby, well they come to us all
Sure as the tickin’ of the clock on the wall
Sure as the turnin’ of the night into day
Your smile girl, brings the mornin’ light to my eyes
Lifts away the blues when I rise
I hope that you’re coming to stay”

 

“I love you to the moon and back”