Turning agony into ecstasy....

 

‘Pain is the difficult doorway to hidden generosity.’~ David Whyte

I wanted to write a blog post about something inspirational. When you only post twice a month, it should be worth the effort. But then my middle son, Sam, got very sick with that nasty coughing virus. I’ve been consumed by caring for him, as we dived down towards and then narrowly avoided pneumonia. I began to feel the opposite of inspirational – in fact, more like that embarrassing stage of tiredness and desperation where you start to break down a bit in front of people. All creativity seemed to temporarily flee.

Some weeks ago, I had written a short non-fiction story about the arrival into our family of my middle child, and my subsequent first experiences with Down Syndrome. I submitted the story to the Chicken Soup for the Soul anthology, Hope and Miracles. This was my way of dealing with the past.

 

Sam turned twelve on Tuesday. It’s hard to believe it’s been twelve years since he crashed down the walls around my heart. I know I haven't been the same person since meeting him and thank goodness. It's true what the Maori say, that people with Down Syndrome have more 'wairua' (spirit) than other people.

 

One morning this week, my youngest son, complained. "Does Sam get to stay home again? It's not fair!"

I said, "Sam is really suffering."

"No, he isn't, he's just faking."

 

But this is one of the amazing things about Sam, is that he's never 'faking'. He doesn't know the meaning of the concept. Sam is himself, as he is, how he is at all times.  He's pure. I love that. What winds me up is there's so much misunderstanding about these people, and it just makes life more difficult for us as the parents and caregivers.

 

I’m moved to write about this  topic because two times during the nightmare of the last four weeks, as I’ve nursed Sam around the clock with the coughing virus, I've come up against the dragon of ignorance that exists around Down Syndrome.

 

 

The first time it happened, a nice doctor at the Emergency Department, prescribed medication. We got home and I read the instructions: they required Sam to ‘hold a teaspoon of the medicine in his mouth for a few minutes’. I laughed and threw the box away. I felt surprised the doctor would think Sam was going to “hold” anything in his mouth for a few minutes. I thought, ‘perhaps this guy has never met a special needs person before.’

The second time happened after we were discharged for the second time from the ED this week. The spunky young doctor sent us home with a prescription for Sam’s sore lips. I read with horror, the instructions asked that Sam keep ten mils of the gel in his mouth, gargle it and then spit out. I mean, c’mon! You did just meet my son, doctor, didn’t you? You were there? Do you really think he’s going to be able to hold the gel in his mouth and then gargle and spit it out? Seriously!

 

That’s when I began to get a bit steamed, and moved into a state of consternation.

It isn’t rocket science, folks. This sweet pure soul who is Sam, is like a small child in a big child's clothing.  Think of him as a five-year-old in a twelve-year-old's body. He needs medication that is simple to use and tasteless to take – please don’t prescribe big tablets that I have to grind up into powder, because Sam can’t take tablets. Please don’t prescribe gels that require a flaming degree in science, and a meth lab to use!

 

Sam has taught me a lot about Down Syndrome. And because of Sam, I got to enter the amazing fraternity of parents of special needs kids. This is a deep group. These mums and dads have been through the fire, they’ve done their warrior tests, and they’ve been enriched for their trials. A more incredible group of people you couldn't hope to meet.

 

Sadly, folks with special needs are often a misunderstood, overlooked section of the community. But it doesn’t always have to be that way. I see a much better, brighter future ahead. And I feel it’ll be paved by sparks like my son, and all the other amazing, bright, young things (and not-so-young things) like him.

 

As a writer, I can’t help but be affected in the way that comes most naturally...the story seeds are being sown...I don’t know how, or when, or what the fiction will be. I only know that the feeling becomes more certain. I will write story about them. Something wicked this way comes.

 

You must stay drunk on writing so reality cannot destroy you. ― Ray Bradbury

 

Ttl,

Yvette K. Carol