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The Midnight Miracle Moments You Have As A Special Needs Mum

I have nothing but my intuition to lean on when all else is unknown.

13/10/2017 12:33 PM AEDT | Updated 13/10/2017 12:37 PM AEDT
Natalie Roberts-Mazzeo
"I reposition her limbs and try to help her find that space of comfort where she can rest and heal, beyond the labels of her medical conditions."

We've had some rough nights with our daughter who has additional needs, walking up and down the hallway as we take turns to try and soothe her little body.

Running baths to help her feel comfort when she can't find calm. I mix medicines under soft lights and watch the clock tick over from 12 am, 2 am, 3 am and on...

This space is all too familiar. I wonder how many moments of sleep we will get before the sun rises. My mind fast forwards to the day ahead and all of a sudden her additional needs feel bigger than usual. I can't recall the last time we slept a whole night through together, often when she wakes and finally resettles, we are left alert and full of adrenalin, trying to find quiet and calm ourselves.

The hope for health and happiness from parents to their children spans the globe through cultures and time immemorial. When this is taken away, monumental shifts need to occur as we adapt to this whole new way of parenting.

Through these sleepless nights I carry her body as she drapes over my arms, so delicate, fragile and full of mystery. I wonder why she's so unsettled? If only she could talk and let me know. Is she hungry, tired, sore or sad?

I reposition her limbs and try to help her find that space of comfort where she can rest and heal, beyond the labels of her medical conditions.

I have nothing but my intuition to lean on when all else is unknown. Of course, certain things are known, like the stark medical words for the cause of these midnight moments: Stroke in utero. Bilateral Perisylvian Polymicrogyria. Quadraplegic Cerebral Palsy. They are the words of a bad dream. Maybe that's why we no longer sleep.

When her body allows it, I am able to soothe her and hold her close to my heart. But when the rigidity fires, her body forces itself into extension. I sense ways to hold her and bring her body back to balance, waiting for the electrical storm to pass. I hear her soft sighs and yawns after her body has exerted so much energy and has finally found equilibrium.

I think of all the parents around the world who are taking care of their children with medical issues during these testing midnight hours. I wonder how they cope.

The hope for health and happiness from parents to their children spans the globe through cultures and time immemorial. When this is taken away, monumental shifts need to occur as we adapt to this whole new way of parenting.

Through this haze of broken sleep, exhaustion and ongoing physical care, we keep choosing to love over fear.

These tiny micro-milestones of choice in the long run turn out to create some of the biggest shifts of our life, one small midnight moment at a time.

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A version of this post originally appeared on Miracle Mama.

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