What My Son With Angelman Syndrome Teaches Me About Standing Out
This week has been a week of feeling, well, different from the rest of the moms. Of being acutely aware that Rufus is different from the rest of the toddlers. Of feeling like we stand out and wishing just for a second we could blend in.
I realized early in life I stood out from the crowd. As literally the only person in my primary school class with curly hair, I was brunt of all the curly hair jokes. As a teenager I did everything I could to change my hair so I could just blend in. Despite all my efforts, it kept growing back curly. It seemed there was nothing I could do to stop it
Maybe I grew tired of trying or maybe I just grew up. Whatever it was, one day I just decided I would fully embrace my curliness. I’m glad I did.
Fast forward to present day. I live in a vibrant, diverse community within a huge and creative city where having curly hair is completely normal and no one really stands out from the crowd. There are so many versions of “normal,” no one looks twice at anybody. Finally, curly-haired me blends in.
But, recently I’ve noticed that old, familiar feeling of being desperate to blend in creeping back in. Only it has nothing to do with the way I look anymore. It’s about the boy I spend all my time with and the increasingly obvious syndrome he carries around with him.
When Angelman syndrome officially entered our lives 9 months ago, blending in ceased to be an option. Life became about standing out, feeling different and unusual. It was pity-looks, the questions and then The Conversation — explaining the ins and outs of the syndrome and what the future holds for him. There’s no more blending in now.
The morning I got in the car after Rufus’s first trial swimming lesson, I felt a big old lump in my throat. The instructor and I realized early on the group wasn’t right for Rufus. Not only did his tiny, wobbly body look so different to the other normal-sized boys who were also nearly 2 years old, they could all follow instructions, walk, talk and were beginning to move towards independence in the water.
Don’t get me wrong, Rufus had a wonderful time. His continual beams, giggles and face grabs reassured me that he was having the time of his life. Anyone who knows anything about Angelman syndrome knows that water is a winner every time. But whatever the teacher was trying to get him to achieve, he wasn’t even remotely interested. So at the end of the lesson, as we started making our way out of the water she said, “Just hold on, I’d like a quick chat after everyone’s gone.”
Like any parent who is grabbed by the teacher at the end of the day, I knew he’d done something wrong.
And it was then that she explained she felt it was right to put him into the lower group, the group for 6-18 month olds. He’s 21 months old. Her reasons were absolutely valid and I agreed with everything she said. In fact, I would have suggested the same. He couldn’t follow instructions and wasn’t anywhere near independence in the water. But I felt sad. I felt sad that my boy was different. I think the instructor could tell.
“The last thing we want to do is to make you feel like you stand out,” she said.
I explained away my feelings and responded with, “Oh, it’s okay, I do anyway. We do, I mean. We always will. That’s part of the deal with having Angelman Syndrome.”
My “normal” is actually quite unusual for most moms. Every “normal” thing we try to do will always look different. Here was the rest of my “normal” week: Phoning his pediatrician for a new prescription; racing across town to collect the prescription in time; meeting a mom who looked at me strangely when I told her he was 21 months old; meeting with a health visitor and sleep specialist; racing across town again to deliver the prescription; being kept awake by him for two or three hours every night; meeting with a speech therapist for the first of six pre-language play sessions; collecting the prescription; buying shoes and realizing his feet are too big; feeling annoyed because there’s no point in spending loads of money on proper shoes when he’s not even walking; having The Conversation with a lady in the park and tripping over my words; being seconds away from calling the ambulance after he started going blue from choking on a piece of pear.
Our regular Angelman Syndrome moments are stand-out moments. I know we are different and I know this is the way our lives are, I just wish we could blend in sometimes. How I wish I could go to a swimming lesson and watch my son follow instructions like the other boys. How I wish his pediatrician’s phone number was not one of my most frequent calls this week. How I wish I could experience a regular toddler meltdown while shoe shopping.
But wishing will get me nowhere. Wishing to change genes is pointless.
But Rufus is absolutely pleased as punch to be the person he is. He’s here in the world living to the fullest. As far as I can tell from the ear-to-ear grins he gives us every day, he doesn’t wish to be different. If I’m going to learn from anyone about how to feel comfortable standing out in a crowd, I’ll learn from him. But I think I owe it to him to do better than just feel comfortable. I need to learn how to feel proud to be his mom in every situation, in every encounter with a stranger, every time I receive a pity-look and every time I so desperately feel like blending in. I need him to help me wear my Angelman Syndrome Mum badge with pride. I need to feel at peace with the way I am, the way we are and the way we’ll always be. And maybe, if I let him, this could just be the making of us.
A version of this post originally appeared on Lucy Hasler’s site.
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