My daughter was just a year old when we learned she had spina bifida. Since then, the whole family has worked hard to ensure she feels loved and accepted for who she is, and she never feels as though she can’t do everything all the other kids do. In many ways we were lucky; following extensive surgery on her spinal cord when she was 3, she became much better, and despite weakness in her legs, she is fully mobile. However, she is doubly incontinent and because of this, differences between her and her peers are inevitable.
A hidden disability is hard. It’s awkward to try to explain to the other kids why she has assistance in school and why she uses a different bathroom. It’s hard for some kids to understand why she sometimes arrives at school in one outfit and goes home in another. It’s hard for me, as a mother, to explain to new friends about her condition. It’s an incredibly difficult thing to manage. It’s not like having a young child in diapers; it’s much more complex and involves catheters and bowel irrigation pumps as well as medication and countless accidents, including a wet bed nearly every morning.
All in all, it sucks. When we’re having a really bad day, I’ll sit down and cry, wishing fervently that she didn’t have to deal with all of this. I wish she could go to day camp like other kids her age. I wish she could go on sleepovers or to play at a friend’s house without me worrying about toilet timings or whether she will tell her friend’s parents if her bowels suddenly decide to let loose.
It sucks, but this is her life, and so I plaster a smile on my face, tell her everything will be just fine, and try to work my way around all these problems and carry on as normal—whatever that might be. I cheerily tell her that no one can notice when she is wearing a diaper under her dress, even though it is bulky. I reassure her that no one thinks it strange that her mom goes to the bathroom with her, and if her legs are having a bad day and they give way a lot, I tell her no one has even noticed her stumbling.
I thought this was the way to go. Super-positive mom, always smiling, always reassuring her that her hidden disability is just that—something no one can notice. Then my daughter changed my entire outlook with just a few words.
At age 10, she is just beginning to become more self-aware. She adores pretty dresses, twirly skirts and adorable hair accessories. She also, like a lot of 10-year-olds, gets very moody and upset if things don’t work out for her. This particular day, her dress didn’t look right. In her upset, she seemed unable to pinpoint exactly why it didn’t look right, just that it was all wrong, and then the tears of anger and self-pity started. I knelt down in front of her and held her hands in mine. “You look lovely,” I reassured. “You always look so beautiful.”
“No, I don’t,” she pouted, and so I decided to boost her confidence that little bit more.
“You do. Have you seen you? You’re smart and funny. You’re kind and loving, and you’re so caring to everyone. You have gorgeous hair, a beautiful face, an amazing smile and legs that go on for miles. I’m telling you, you’re utterly perfect.”
“I am not perfect!” she suddenly yelled. “Stop saying I am perfect when my body doesn’t work right. Stop saying I’m perfect when I have to wear diapers to bed every night and I still wake up wet! You always say I’m perfect and I’m not. I don’t work right! Nothing works right and I hate it so please, don’t call me perfect!”
I held her as she cried. I let her release all her pent-up aggression and emotion and just cry until she had finished, and then she dried her eyes and said she wanted to change her dress for her favorite blue one instead. I wanted to talk to her about everything she had said, but I didn’t know where to begin.
Have I been wrong all these years to treat her as “normally” as possible? Should I have discussed it more with her, and told her that it makes me sad and mad too? Should I have admitted that it hurts me to see her go for all these hospital tests and then to hear that nothing has improved? Should I tell her I’m scared for her future—scared she will never find someone who will love her for who she is? Should I tell her that knowing there is no chance of her condition changing causes me more heartbreak than anything else in the world?
I can’t change anything for my daughter. I can’t make anything better, but I can, and did, find time to talk with her about how she is feeling.
“I hate it,” is what she said right away. “I hate that I’m not the same as everyone else. I hate that I had an accident at the play center and had to have all my clothes changed, and then all my friends asked why I was wearing a different outfit. I hate that I can only go on school camp because two extra assistants are coming to help me. I don’t want that. I don’t want any of it.”
“Yeah,” I agreed. “It’s horrible. I agree. I mean, ultimately, it is what it is, but I wish it was different too. Then again, I also wish my thighs were about half the size they are.” She laughed at this, but also seemed genuinely surprised to hear there were bits of my body I don’t like. I stopped short of giving her the whole list, but I think it made her feel better to know there are things about me that I just have to live with too.
Having jiggly thighs is not quite on the same level as being doubly incontinent for the rest of my days, but as a parent to a child with a hidden disability, I think I’m learning that while encouraging positive body image in our children is crucial, acknowledging and discussing imperfection is also just as important. Ignoring it isn’t going to do my daughter any good.