‘I found a strength I never had when I learned my son was ill’

Mar 20, 2019
This mother found an inner strength to deal with the illness her son had. Source: Pixabay

The day that is seared into my memory, August 13, 1983; my baby boy was 13 months old and this day would turn out to be like no other. “Look, he’s doing it now!” I seem to remember repeating that sentence time after time after time during the four months prior. However, before anyone else could see ‘it’, ‘it’ stopped. My husband, family and friends were, I’m sure, beginning to doubt my sanity because nobody else ever saw ‘it’.

‘It’ was my baby boy fluttering his eyelids in a peculiar way, eyes rolled. It would only last approximately 15 seconds so, by the time I alerted those around us, it had stopped.

When I described this rather strange behaviour to my mum, mother-in-law and other experienced parents they all seemed to agree that it was probably due to teething. I already had a five-year-old daughter so I was not completely inexperienced, but this baffled me. Needless to say, I was more than happy to accept the teething scenario.

Then I noticed an increase in the ‘it’ episodes, both in frequency and duration. Something in my gut told me to get to the doctor, although I sensed it was not life threatening.

We had the most wonderful female GP for the past few years; we liked her and so did the kids. Feeling almost foolish, I sat opposite the doctor trying to explain what I had seen but nobody else had. Magically, and as if we’d rehearsed it, my young fella did ‘it’! Selfishly I was relieved that now someone else had witnessed ‘it’ and she would prescribe a strong teething mixture.

The doctor’s reaction was swift, assured and, as it turned out, very accurate. “Oh yes,” she said almost matter-of-factly. “Classic petit mal.”

“Excuse me, petit mal?”

“A brief epileptic seizure,” says she. “He’s probably epileptic.”

I don’t remember hearing much else that made sense. There was a flurry of activity from the receptionist, nurse and the doctor and they were trying to remove my baby from my arms, but I held tight and wouldn’t let him go. Why were we on the floor?

As my senses returned and the nausea eased I realised I had fainted with my baby in my arms (and I am not a fainter). That was the first and last time I would allow my reactions to over-ride my child’s needs. Heroic stuff based on a mother’s love? No, just bloody-minded determination to research and find some answers; surely this could be fixed. Obviously, I knew absolutely nothing about epilepsy.

Armed with a manila folder full of epileptic information, support groups and specialist referrals, I truly don’t remember the drive home. The little one was exhausted after much medical poking and prodding and happily settled in his cot.

Then, there was the silence of an empty house and the huge impact of what I’d been told started to sink in. Our baby needed medication but, the meds, in all likelihood, would slow his cognitive development. However, if left unmedicated the seizures would escalate, which would also damage brain activity. Catch 22 going around and around.

I had never needed my husband more than I needed him at that very moment. I rang, explained, unbelievably calmly, I needed him home now, without detailed information. In turn and also rather calmly, he walked slowly toward me not 10 minutes later.

I sank into the large arms of my 6’4” bear-like man, somehow mouthed the words that needed to be said, and we clung to each other sobbing for the longest time. Coming up for air, we both pledged then and there to do our utmost for our son … And we did.

No, it hasn’t been easy but I proudly report continual progress. Our 36-year-old man has a deliciously wicked sense of humour, plays sport most days, has a beautifully caring personality and a part-time job that he thoroughly enjoys. His whole family is extremely proud of him, and at 6’6”, taller than his dad!

Being told such bad news in such an abrupt manner, I’m sure, would never happen these days. Of course the doctor apologised to me but, she said, I’d only ever known you to be such a strong woman. True, until you tell me there’s something seriously wrong with one of my babies; they are, and will always be, my Achilles heel.

Truth be known, in the morning of the August 13, 1983, we had a normal, healthy baby; by the afternoon, we had a special needs child who would forever require extra care and attention. All these years later my husband and I are proud to say we did our very best … and then some.

Does your child or a loved on have an illness that needs constant medical attention? How do you manage it?

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