Additional Needs
Age Appropriate
by Jodi Shenal
on 26th April, 2024
Special Needs Parenting: Giving Thanks to the Monitor
I’ve never been a night owl, even in the distant pre-child days, but I’ve always been quietly proud of my ability to function on only a few hours sleep.
Now the munchkin is that bit older and is quite the sleepyhead, you’d think that the days of dragging myself through work kept awake merely by copious amounts of caffeine in one form or another would be long gone… but sadly no.
You see, epilepsy is incredibly rude and doesn’t respect anybody's routine whatsoever.
Sam may be so tired that he can barely keep his eyes open, but that doesn’t mean he can sleep.
The activity in that little head of his is continuous and can, at times, become far more than just an irritation.
Even when he DOES manage to drop off to sleep the seizures don’t leave him alone for long...the average night sees him experience 3-4 seizures.
Mostly he stays asleep through them, although his SATs monitor will alarm if and when his movements become erratic or his breathing is an issue which ensures that we are most definitely not asleep.
Nightly activities in our house include getting up multiple times to check - he’s breathing/turn the alarm off/curse it for going off erroneously yet again.
The monitor is threatened with going for a flying lesson out of the window approximately 4 nights out of every 7.
The joys of attempting to remove a probe that is malfunctioning and attach a new one *without* waking the sleeping little poppet at 3am, only for said poppet to wake up on his own at 3.30 and decide to practice his singing voice.
I wouldn’t be without that monitor for anything though.
Even though it drives us up the wall on a near-nightly basis, it has saved my boy's life many times.
Without it we wouldn’t be alerted to the serious seizures that stop him breathing.
The banshee-like screech of the alarm wakes us out of even deep sleep so that in a matter of seconds that we can be there, with the oxygen, supporting him and comforting him until the seizure passes and calm is restored.
After all the drama, inevitably my gorgeous boy is off to sleep again very quickly, Pixie (our female tabby) retakes her spot next to Sam on his bed, to keep a watchful eye over him.
And his Dad and I lie awake, listening to his breathing, and thanking God for that monitor.
