‘Too much stimulus is disastrous for my daughter with epilepsy’

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Fatima (38) and her husband Aram can only dream of a Christmas holiday in faraway places. Daughter Elin (6) has, in addition to an intellectual disability, severe epilepsy, so instead of a Christmas celebration, they hold a ‘compensation drink’.

“Too many stimuli are disastrous for her. We live on a tight schedule with no unpredictability, never go on vacation and rarely receive visitors. We never get a Christmas tree either. We did at first, but Elin had more attacks when the tree was there. An allergy to spruce, we thought, but when we replaced it with a fake one, the attacks continued. Now we think it’s because of the lights, or simply because of the change in the house.”

Read also – All about epilepsy in children >

Compensation drink

A Christmas dinner with family or friends is unthinkable: Elin gets all kinds of upset. So her family created the ‘compensation drink’.

It always falls on the last Saturday in June. This way everyone can take it into account well in advance in their agenda and then the chance of good weather is greatest. In the back of our garden we have a large shed with a covered terrace. It is big enough to have a drink with Aram’s brother and parents and my family. We start as soon as Elin is asleep and finish before eleven. That way we still get some sleep, because Elin never sleeps through.”

“It doesn’t feel right to put my child to bed and spend Christmas without her”

It would be an ideal solution for Christmas, if it weren’t freezing cold in the winter, Fatima laughs. “But besides that, it doesn’t feel right to put my child to bed and celebrate Christmas without her. Then I’d rather eat an early evening meal with the three of us on Christmas Day; Aram and I will watch a movie afterwards.”

This article was previously published in Kek Mama.

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