Sleep…Wouldn’t It Be Nice?

Jodi Shenal by Jodi Shenal Additional Needs

Jodi Shenal

Jodi Shenal

I'm a stay-at-home mom with two amazing children. My son is on the Autism spectrum and my daughter has a rare genetic disorder and multiple disabil...


The word alone makes me yawn, as a full-night’s shuteye often eludes me.

A quick glance at myself in the mirror before taking my daughter to school this morning confirmed it; I wear TIRED all over my face.

Having a child with Epilepsy teaches you to effectively run on empty; to adapt to a ridiculous, ongoing lack of sleep.

Coffee is not only a morning treat, it is my 24/7 fuel!

In the past, there were nights where I’d wake up several times, just to place my hand on her back or chest to feel her breathing, as you would with a newborn baby.

Too many times to count, I’d been jolted out of bed by false alarms of an overly sensitive, unreliable seizure monitor…alerting me to her simply rolling over, or sitting up happily clapping!

One night this past April, the sleep game forever and completely changed.

Lying beside my daughter, I awoke to her having a nocturnal seizure.

Fear unlike any I’d felt before washed over me and I quickly sprang into action.

After another seizure and an ambulance ride, we spent the next several days in the hospital.

She had a virus and an unrelenting fever.

With fever, comes more seizures.

While lying in her hospital bed with her on the third night of our stay, she had another nocturnal seizure at 4:30 am.

I was already awake and saw it coming over her…within seconds, the pulse oximeter went off as I simultaneously rang for the nurse.

As I listened to the ear numbing, shrieking beeps of the machine, I watched her oxygen level numbers take a scary nosedive, and her pulse rate soar.

In that moment, with my heart in my throat, I knew I’d never sleep soundly EVER again.

Once she recovered and was peacefully sleeping again in my arms, I also knew that I wasn’t leaving that hospital without a means to alert me in the night if this were to ever happen again.

All I could think of was, “What if I wouldn’t have woken up when I did that night at home?”

“What if I hadn’t been sleeping right next to her?”

That was too much for a mother to ever have to wonder.

Fast forward four months… I’m still one seriously tired Momma.

That comes with the territory of special needs parenting.

However, when I wake now during the night, the reassuring sound of melodic beeps lulls me back to sleep.

Those slow and steady beats mean that everything is OK.

Thanks to our doctor, and a persevering advocate and case manager, we have a pulse oximeter machine at home.

My mind is now much more at ease, knowing I can peek into her room and see her pulse rate and oxygen level on the screen.

I know that it will sharply alert me if those numbers go in the wrong direction.

It doesn’t take away all of the worry, but it certainly pacifies my mind enough to manage some real rest now.

I may even be able to cut down on the coffee a bit…someday.



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