Missing Her Cuddles

Sarah Meyers by Sarah Meyers Additional Needs

Sarah Meyers

Sarah Meyers

I'm the mum of two beautiful, vibrant, opinionated girls, one of whom has a complex, life-limiting condition. Living in Australia (a place I'd neve...

When she was little, we called Miss Z the marsupial baby.

She was always happiest when she was close to me.

During the first year of her life, her disabilities were just beginning to come to light and I didn’t want to be separated from her any more than she did from me.

So, she spent a lot of time in her baby carrier, strapped to my chest. It was often the only way she would sleep during the day.

And at night, she usually ended up in bed between her dad and me.

When she would have seizures, she would scream for hours afterwards, completely inconsolable.

The only thing I could do was to put her in the baby carrier and walk with her.

It didn’t stop her crying, but at least I felt like I was doing my best to give her comfort.

And I loved holding her and cuddling her.

I didn’t know how to fix any of the things that were going wrong – the seizures, chest infections, swallowing problems – but I could comfort her and help her feel she wasn’t going through them alone.

We spent a lot of time in the hospital, with me holding her.

Predictably, as Miss Z got older, she grew. She became too big for the baby carrier.

And then she became too big to carry very far at all. But I could still lift her onto my lap for a cuddle.

And because she didn’t like being in her wheelchair, she spent a lot of time on my lap.

However, at seven-years-old, nearly 30kg and with long, long legs, cuddling her on my lap is coming to an end.

Not only do I struggle to lift her onto my lap, but it doesn’t comfort her the way it used to, probably because now that she’s bigger, she isn’t as comfortable.

And these days she’s nearly always connected to tubes that make it difficult to move her around.

I’ve tried to adjust.

I snuggle up behind her and spoon her. I kneel beside her bed and rest my head on her pillow.

And although she has poor motor control, Miss Z often grasps my finger or rests her hand on me.

We still want the connection, but finding ways to cuddle as she grows is becoming more and more challenging.

However, the difficulty can also make me appreciate our cuddly moments even more.

This afternoon, I sat her beside me on the sofa and put my arm around her to support her.

She put her hand on my leg and rested her head on my shoulder.

And we sat there, listening to music and enjoying a cuddle.

She may be too big to be my marsupial baby, but she’ll never be too big for cuddles.

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