Amazing Work

Pretty much anyone raising money for a good cause will ask you to give generously so that their charity of choice can continue their ‘amazing work’.

I’m lucky enough to be about to set out on an amazing bike ride to raise money for a very special charity. I’m doing it to help them continue their amazing work. Before I ask you to make a donation, though, I’m going to ask you to read more than a description of services.

You need to know what you’re giving. I want you to understand this time, what ‘amazing work’ is.

Let’s start with goodbye

To help you understand, I’m going to let you in on a personal experience of mine. It’s a topic that nobody talks about openly and certainly nobody asks about.

Just about dawn on the very first morning of 2011, my wife gave birth to an beautiful little boy. We named him Thomas and he was perfect in every regard: an exquisitely tiny little face, tiny little hands, tiny little body. His only flaw was timing, in that he was born too early to survive.

As the final stages of labor commenced the doctor explained that he may breathe a little, or not at all. I couldn’t decide which would be worse — to never see him live or to have him die in my hands in the minute of his birth. I still can’t.

The nurses cleaned him and wrapped him. We held him and wept. It passed and came again, the grief. Came and passed again. And again. It came and subsided in shuddering breaths, days and nights passing outside the window without meaning. Our ears were ringing.

In between sobs things were very still. The between-times were sometimes remarkably normal, even boring, and at other times sublime. I would hold his tiny body — nearly weightless, like a bird’s — and just look at him, like any parent stares at their newborn. Without the chubby tummy or cheeks that babies put on in the latter weeks of gestation, he was stick thin. Frail and dignified, like a miniature old man. His four fingers together were as wide as my one.

Eyes red and glazed with amazement, I would smile. Even in the absence of a living boy I felt waves of joy at his birth, at being able to see and hold him. I wondered:

Where did you come from, my tiny baby?
Where did you slip away to?
Why couldn’t you stay?

I love you…

“My baby has died;” I would tell myself, and breathe. “And that’s ok.”

That’s how I made my peace.

Our counsellor was kind and possessed a kind of gentle wisdom that helped us navigate ourselves. She taught us about the grief that comes from losing things that were never had in the first place, except perhaps as hopes—even hopes we didn’t know we’d begun to harbour.

My wife and I held each other, a lot. We watched the world go about its business through the window and listened to the cries of newborns in the rooms down the hall (happy for their parents, it wasn’t distressing). We filled in the forms and read the booklets. We spent endless hours holding Thomas. Gentle words and small gestures would make us cry. We took the time given to us — by staff, and family, and friends with great thanks.

It was the most precious thing we had.

The un-understandable.

I might have lost everything I had hoped for the future of my tiny little son, but truthfully, our bond had yet to begin. A part of my grief was simply for missing the opportunity to know him, and since that time there have been occasions when I’ve wondered how it must feel to lose an older child. They make such an impression on you that it’s a common thing for parents to joke, more than half seriously, that they don’t know what they did before kids.

Every parent knows the tiny joys of watching their child take on the little abilities of life. Clenching and unclenching fingers. Moving limbs. Eating, walking, recognising and naming, pointing and talking. Learning to communicate and with each new word and thought and gesture, each puzzle-piece of ability and personality becoming someone.

Watching and guiding the formation of a whole new person as they emerge out of the deep ocean of whatever-it-is below the surface of life might just be the truest wonder of parenthood.

Sometimes kids get sick. Some kids get sick and don’t get better. Everyone ‘knows’ this, of course, but it’s difficult to understand what it’s like to have a child with a terminal degenerative disease. It’s the process of reversing parenthood. Holding your child’s hand as their abilities rewind all the way back until the undoing of life, and holding it still once they’ve gone.

I don’t understand how to tell a six year old girl that her sickness means more than not going on to Grade One with her friends. That it means she won’t get bigger and stronger any more, that from now until as long as it takes, she will grow ever weaker, til she can no longer stand, lift her head, no longer speak. I don’t know how to un-know that joy, or how to explain to her little brother that his sister is dying. I don’t know how you decide how or when or whether to explain what death is to a four year old, not when it’s that close.

Amazing work

Incredibly, somehow, there are people who do. They know what comes next, and how to walk the path gently, all the way to the end.

This is the amazing work of Very Special Kids, whose gifts include bereavement support and a sensory room so that kids who can barely move and are panicked can immerse themselves in something beautiful for a time. A family retreat for families who need nothing more or less than escape. A service called ‘sibling support’, which needs no further description and has no expiry date — sometimes lasting for years afterward. And a gift called ‘just a normal room’, a room in which to slip away forever, in the arms of those who would hold you forever if they could, with nurses and doctors and medical support, that is not an ICU, but a normal bed, with a normal quilt and a normal child’s bedroom lamp. Just a normal room where your family can lie and hold you until they’re ready.

I know how powerful time and love and small kindness is when the hole in you is so deep and wide you can’t yet feel its edges. It’s the most precious thing you can have.

That’s what ‘amazing work’ is. I’m raising money so that Very Special Kids can make their services available to a few more families next year.

So, now you know why it’s important for me to ride a bike for Chain Reaction, an organisation of business people and cyclists, that supports Very Special Kids and the Starlight Foundation, and to ask you not just to help out, but to be really generous. It means the world.

Please give whatever you feel you can or should.
There isn’t thanks enough in the world.

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