I’m hesitant to let people know about Elisa. More precisely, I waver telling people about her disabilities. I am not ashamed of her. I do not think I could be any more proud of her!
But people get scared. Emotional. The pity slashes through their eyes. They don’t know what to say or do.
I do not want anyone’s pity.
I’m sure Elisa doesn’t want it either. She is just a kid who has come out to have fun with her family. She is excited about the activity we are about to do, just like our diagnose free toddler.
Luckily visually impaired Elisa might not be able to see the looks.
But we, parents and Elisas siblings, surely do.
I am so grateful
for the people who say hi. Like that mum and daughter at our local leisure centre. Me, a carer and Elisa were enjoying a swim in the teaching pool. They came around smiling and said hi, asking for Elisas name. Then with huge grins on their faces they commented how she surely seems to love the water.
Elisa had been laughing loudly as me and the carer took turns helping her to enjoy the pool water. She splashed with her hands, and floated so we only needed to have a hand under her neck for support. The mum and daughter had delighted wide smiles on their faces when they examined Elisa’s joy.
We had a pleasant chat. As usual, I didn’t mind telling about Elisa’s disabilities or especially about her likes and dislikes. Once they left I felt warm inside, and Elisa – as always – had loved the attention.
It was such a different experience
to the incident on a bus some time back. Before Elisa turned 3 and were eligible for a Motability car, we had to travel everywhere by bus. It wasn’t always pleasant.
Once, I was sitting next to Elisas wheelchair on a bus and a man across the disabled spot kept staring at us. It was so intimidating that I kept my eyes on my child, distracting both me and her. Then he asked:
“What’s wrong with her?”
I should have answered with nothing. As there is nothing wrong with her. Instead I answered with a couple of diagnosis and the notion that Elisa was born prematurely. Usually that covers all the coming questions and we could move on from the disability to other things.
“Well,” he looked straight at me and with some emphasis he said “That’s because you ate too spicy food”. He said it like it was the truth. That that’s why my daughter was born early, that’s why she is disabled now.
Maybe he needed that. Maybe he needed to place the blame somewhere. I surely didn’t need to hear that though. I had blamed myself enough for everything already.
I didn’t have spicy food when pregnant.
I followed all recommendations religiously. I controlled my gestational diabetes with diet, I ate like clockwork and only what I was allowed.
Still, my placenta malfunctioned and with that, my body nearly killed my baby.
If he had just nodded and left the conversation to the diagnoses, I would have been fine.
If he had moved on from the medical diagnoses to find out who Elisa is, I would have been delighted. I’m not my blond hair or my weight, nor is Elisa her diagnoses.
He didn’t, he finished the discussion with that accusation and left me feeling crushed.
When you see someone different,
please be like the mother and daughter. You do not even need to say anything – a smile brightens everybody’s day.