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I live in Los Angeles, where I write and blog under the California sun.

A Mother's Voice
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When Liberty was born almost 16 years ago, I wanted to break the glass of the hospital window and shout out to the world that she'd arrived--that no-one's life would ever be the same because this six pound bundle was now on this planet. I held right there a miracle. She was a miracle and she gave me the gift of motherhood.

When Elliot was delivered almost two years later, the windows in our lounge were shut fast because of the noise I was making, but I had the overwhelming realization that here was a child who would stretch my love beyond a capacity I had previously known. And it's true. I worried then that I couldn't love a second child as much as the first. But how wrong I was.

Mathilda's birth was traumatic. Not breathing for the better part of the first ten minutes and reliant on the Professor whacking her back hard enough so that she would join us. Which she did. Eventually.

What I never saw coming was how a mother's love for her children would not only be a privilege and source of immense joy, but one that came at a cost. Because my job as I saw it was to go before them, honor the unspoken contract we have with our children to show them the delights of the world first-hand, but its dangers from a distance. Never once did I think as children, they would go places that I hadn't already been. Rather, they would follow in our footsteps whilst the professor and I held their tiny hands tightly along the way.

 
 

I remember a sad occasion way back where I went to the celebration of a baby boy who had only lived several hours. His parents, friends of ours, said something that stayed with me: "The thing is:" Steve said, "That Samuel is somewhere I've not been. I know he's in a better place--but it's just that I've never been there."  Steve and Julie experienced real horror lowering the casket into the grave then walking away from the cemetery leaving their son in a place where they could offer neither companionship or comfort. It was a double separation of sorts.

And of all the things I struggle with parenting a CWN, this is possibly the greatest. It's unnatural to me as a mum that one of my children occupies a place day and night that largely I can't reach. It feels wrong, wonky, as if the natural order of things has been inverted.  And the pain that comes with this dis-order has at times being physical. Like someone put their hand through my chest and twisted my heart inside out. Or, like an arrow shot through my achilles that has left me lame.

Until the every day things snap be back and keep me walking--car pooling, vacuuming and jokes at meal times about the dog. There's something about what I need to do each day that is centering and purposeful and I'm grateful in those moments for the simple pleasure of pairing the family's pile of odd socks.

And my voice--both spoken and written. It's the voice at night that tells my kids I love them today because they are who they are. It's the one that tells Mathilda when she's crying that if I could take her narcolepsy away, I would. And that whilst it's part of her, it's not all of her. My words go full circle, flying at me in unexpected moments when I know I've made mistakes as we all do. But it goes an extra mile before hitting a wall. A road-block that says "Wait a minute: You can't fix it. You as a mother can only go so far, do so much." Dare I say this sense of failure is proving be very hard to shrug off?

The pendulum that swings inside us as mothers is at the same time the thing that wounds us, but also has the power to shape those in our care. And regardless of where our children's futures take them, it's what will hold them fast, to us and to themselves and to those they in turn choose to love.

Love then, is not only that which suffers long and kindly as it says in St Paul's First Letter to the Corinthians. It doesn't stand alone, something we keep for ourselves. Rather, in the context of parenting  a CWN, it is the means by which we bear all things. And this has come back to me time and time again. That I'm to bear all things--the hallucinations in the small hours of any given night, and the exhaustion that defines each day.

And being complex, it also hopes. Love hopes for both today and tomorrow.

Our voice, our love, is the thing we give and is the mark we leave upon our children long after they have flown the nest.

Perhaps better summed up in Cheryl Strayed's words when she says goodbye to her young mother:

“I've given you everything," she insisted again and again in her last days. "Yes," I agreed. She had, it was true. She did. She did. She'd come at us with maximum maternal velocity. She hadn't held back a thing, not a single lick of her love.”

― Cheryl Strayed, Wild: From Lost to Found on the Pacific Crest Trail

With grateful thanks to my Mother who has loved me wholeheartedly always, regardless of our geographical distance. And my Nan who devoted her life to motherhood. Few women have demonstrated maternal love as fiercely as they have and I was fortunate enough to be the direct target of both their affection.  

Living Without Laughter--The Cataplectic Quandary

Living Without Laughter--The Cataplectic Quandary

Can the Child with Narcolepsy Thrive? (Part Two-Dealing with Shame)

Can the Child with Narcolepsy Thrive? (Part Two-Dealing with Shame)