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Facing My Fears as a Dad-to-Be With Cerebral Palsy

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The dinosaur skeleton is massive, looming over the small room in the museum. My wife and I aren’t the only adults there, but we are the only ones without a child (well, that’s not quite true, our child remains tucked away in the womb).

In front of us is a couple with a small child. The couple looks about the same age as us (late 20s or early 30s), the kid maybe two or three. He asked his dad to lift him up so he can better see the huge dinosaur. The dad does so, and there’s much cooing, ooh-ing and aah-ing over the sharp claws and giant teeth.

I look at them and think: will I be able to do that for my daughter?

Picture the scene: my daughter and I have been at the park. My wife isn’t there; maybe she’s at work, maybe she’s at home for a well-deserved rest. My daughter is tired, spent from an afternoon tearing around the park and up and down slides. Truth is, we’re both tired. We start the walk home. It’s a short walk. It rains. She trips over her feet and falls, hands spread to absorb the impact. They gather abrasive constellations of grit and dirt. She cries instinctively. She asks me to pick her up, little arms outstretched, hands grasping.

I hesitate. I want to do it. Of course I do. But I can’t. I try to explain, but how can I? Her eyes well up. I wonder how long she will hold on to this memory.

I have cerebral palsy diplegia, which affects the way I walk. I can walk unaided, but I’m slow, often clumsy, and can’t walk for long without stopping to rest. I need at least one hand free to steady myself. It means that picking up and carrying my daughter won’t happen  —  not without help.

She is due in the summer, and this has been preying on my mind.

Help is available. There are baby carriers, and slings, and probably many brilliant things I don’t even know about yet. But they’re aids, not total replacements for the real thing. I’ll use them often and there will still be plenty of opportunities to connect with my daughter in other ways, but the thoughts won’t stop nagging me: what happens if my wife isn’t there? What happens if I don’t have a carrier? What happens when she’s too old or big for them?

I joke about being a distant Victorian-style father, but I really don’t want my daughter to view me as distant because physically, I won’t be able to do as much. Not just carrying her, but playing games, running around, the normal “dad stuff” you would expect. I know no one else with CP and I’ve never seen other dads around like me either. So I have no frame of reference for how this should go.

I know all the platitudes. That I can only do my best, that my daughter will love me no matter what, etc. But what keeps popping into my head is those famous opening lines of Philip Larkin’s “This Be the Verse:”

“They f*** you up, your mum and dad / They may not mean to, but they do.”

I won’t mean to, either. But will I be one of those well-meaning but ultimately ruinous parents Larkin described? To avoid that, maybe I need to practice picking up heavy objects while keeping my balance.

I can but try.

Getty image by Halfpoint.

Originally published: April 10, 2019
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