Monsters under the bed

 

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It was at my 12-week routine pregnancy scan that I found out that Gabriel was high risk for a chromosomal disorder. The two days we had to wait before we saw the fetal medicine team for a detailed ultrasound were a blur of frightened tears.

“We’re the monsters under the bed. The nightmares that keep them up at night.”

They found no other markers, but the risk was still classed as high due to my age (a lofty 35 years) and the baby’s high nuchal fold. Within minutes a CVS test was dangled before us. One needle straight through the stomach, one small risk of miscarriage, one small price to pay to wipe out all those worries.

“We’re the monsters under the bed. The nightmares that keep them up at night.”

Deciding against tests didn’t bring any peace of mind, nor did pretending that it was all going to be okay. Instead of researching cots and prams and cooing over baby grows, I googled and googled right through the pregnancy: nuchal folds, possible outcomes, risk factors, causes. Over and over and over and over.

“We’re the monsters under the bed. The nightmares that keep them up at night.”

Then he was here. At last it was all over. Our perfect baby boy. The joy and the relief. But it was short-lived as twenty minutes later he was gone again. Whisked away to special care. Blue across the nose – breathing dangerously too fast. Heart and lungs failing to sync with the outside world.

“We’re the monsters under the bed. The nightmares that keep them up at night.”

Then came the testing. You name it, he had it. Heart scans, hearing tests, eye screens, muscle assessments, genetic arrays, MRI brain scans, blood tests, blood tests, more bloody bloods tests. Whispers of syndromes, debilitating diseases. Doctors’ kind faces, nurses’ fearful stares: take him home, just love him, give him a good quality of life. There, there. There, now. You can do this.

“We’re the monsters under the bed. The nightmares that keep them up at night.”

Jealousy, resentment, anger and then panic. Long days, long nights. Stupid thoughts about whether he’d know girlfriends, mates and going for a pint. Putting away Christmas decorations wondering where we’d all be when they came down again. How do we function in this alien world?

“We’re the monsters under the bed. The nightmares that keep them up at night.”

Years and years of consultant appointments; hospitalisations;  development reviews; looking for answers, finding more questions; peeking a little bit further ahead and blanching away quick at the thought at what lay before us.

“We’re the monsters under the bed. The nightmares that keep them up at night.”

Then slowly it shifted. The fog lifted. The poking and prodding eased up. People stopped scratching their heads about him and let him be. He grew stronger and fitter. When we ceased comparing and finding him lacking, the storm began to pass. We began to obsess less about what he couldn’t do and home in more on the myriad of things that he could do.

“We’re the monsters under the bed. The nightmares that keep them up at night.”

To the special school that we dreaded, the school bus that we feared, the missing friendships that we grieved, I am happy to say we got that all wrong. So very wrong. One glance at him giggling in the back of class with his best mate tells you all that you need to know.

“We’re the monsters under the bed. The nightmares that keep them up at night.”

Although he does not yet speak in the traditional sense, he is loud. So very loud. He communicates in a hundred different ways .You just have to learn to listen differently. From falling over in laughter at daddy’s funny noise jokes and being deadpan at mine. From hand clapping and flapping to indignant squeals, there are countless conversations right there if you look.

“We’re the monsters under the bed. The nightmares that keep them up at night.”

And as for walking? That holy grail. Well what will be will be. This idea that his wheelchair would be a burden, a milestone around his neck makes me mad at my naivety. It won’t be his lack of mobility that stops him going places, or doing things. The wheelchair unshackles him. The only thing that will stop him is environmental barriers – the many, many things designed with an upright person in mind  – and we’ll all go down fighting to remove those obstacles out of his way.

“We’re the monsters under the bed. The nightmares that keep them up at night.”

It is liberating letting go of all my preconceived ideas of what life should be like because who sets the rules? Why do we all yearn for the same? Life can be anything you want it to be. Gabe is just Gabe. He is not one thing or another – but a kaleidoscope like everyone else. I don’t need to make him fit in the world, nor do I need to make the world fit around him. He just needs for there to be a few tweaks/adjustments along the way so he can navigate around in the way that befits him.

Gabe.mosters

We’re the monsters under the bed

walking

The nightmares that keep them awake at night.

 

That’s the thing about nightmares, they end the second you open your eyes.

As for those monsters hiding under the bed, everyone’s scared to look into the gloom. Yet if we take a deep breath and turn on a light, you’ll see that nothing is what it seems.

As the sun rises on a new day those monsters under the bed disappear. They’ll only come back when night falls if you let yourself forget that it is mere shadows that spook you.

monster

 

*With many thanks to Jennie from @IsaJennie for letting me use her powerful tweet in this blog post. The tweet was made in response to a debate about parents of disabled children and their perceived opinion of adults with disabilities. Thanks for the enlightenment.

6 Comments on Monsters under the bed

    • Alison
      January 28, 2016 at 9:36 am (1 year ago)

      Great thanks. Hope all is well with you too xx

      Reply
  1. Abi
    January 14, 2016 at 7:10 pm (2 years ago)

    Such a powerful peace! Your son is beautiful X

    Reply
    • Alison
      January 28, 2016 at 9:34 am (1 year ago)

      Thanks Abi – he is quite lush isn’t he! x

      Reply
  2. Marie Baker
    January 14, 2016 at 9:05 pm (2 years ago)

    Hi Alison, I love reading your articles. Brilliant xx

    Reply
    • Alison
      January 28, 2016 at 9:34 am (1 year ago)

      Thank you x

      Reply

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