Before she was born, I spent a lot of time looking at her 3D ultrasound photos trying to determine whether or not she would look like she had Down syndrome when she was born. I hoped and prayed that she would be spared the tell-tale almond-shaped eyes, flattened face, short neck and protruding tongue.
The intellectual delays, I believed, we could overcome. If I worked hard enough, I could teach her everything that she needed to know to blend in with polite society. The physical markers were things that would be harder to hide.
I read about cosmetic procedures that she might one day be interested in that could change her appearance. I imagined her moving though theme parks and the grocery store completely spared from her DS. Photos that I texted out to excited family members and friends when she was born were ones that I believed showed less proof of her genetic disorder.
It is hard to admit, but for a long time, I wanted to change something about my child that is so much a part of who she is that it was written in her DNA.
The older she gets, the more I see of the DS on her face. With each wide smile or look of concentration that takes everything she has leaving her forgetting to pull her tongue back in her mouth, the obvious is just more obvious.
She is comfortable in her skin. She doesn’t care that she has two belly buttons – one that she was born with and one that is a remnant of her feeding tube – or that she has a hard time walking up the stairs and chasing after her brothers.
It doesn’t matter to her that she can’t pronounce all of her words in a way that others can understand. She gives it her best shot, and if it doesn’t work the first time, she tries again and again. Sometimes she changes strategy, but she never gives up.
She doesn’t know that she looks different than any Disney princess or friend at school. She is quick to tell you that she is “pretty” when she gets dressed or brushes her hair. The extra beat that her brain needs to understand some ideas doesn’t make her self-conscious yet.
None of the differences I see matter to her because they are not important to her. They are not important to her because she hasn’t been told that they are important, and I hope no one ever tells her.
Things that are important to her are smiling, singing, laughing, taking care of people and her babies, giving the best hugs, learning more about the world around her and being a real part of that world.
Giving, learning, acceptance and love. That’s all. Not how she looks or walks or talks. Not how other people think of her. Those are all my fears, not hers.
At school and at home, she believes she is a teacher. I believe she is too. The older she gets, the more I learn.
It is a simple lesson, really, but so hard sometimes to remember when fear, shame, judgement or hate get in the way: Love. Just love. Always start from love.
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4 Comments Add yours
Beautiful, Heather. Ellie is so beautiful inside & out. Her personality and smile brightens spring street! Jack and Gus are pretty cute, too 🥰
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TU for sharing your precious Angel with us😇💕 All special children need is … special parents! I love Your “Ellie stories!” You definitely have an gift for “expressive language!” 👏👏
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hello to you all, I enjoyed reading your post it brought back memories of when I was much younger, I trained as a nurse, and my first training hospital was Chailey Heritage in the U.K. This hospital was specifically for all children up to their 20’s with various special needs, and they were Special Children & Young Adults. Some sadly were permanent as their families didn’t want them or couldn’t have them. So as nurses we were the only family, they knew, I adored all of them, the Thalidomide babies, the D.S. children, the Spinabifida with hydrocephalus children to name but a few. So, as you are a special person you have a wonderful opportunity to share your thoughts and hopefully her thoughts. I wish you strength and more strength, you can either ignore the hate, or confront it, as hate stems from fear of the unknown best you try to educate those poor souls of what they are missing. If you need a laugh, try reading my blog
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