The thing I've wondered about the past week, was how should I have treated my little girl? In particular, with regards to her legs.
A few days ago, I was waiting for my son to come from cricket practice. I saw 2 moms coming out of the school with their little girls. Gorgeous little girls of about ages 6-8. They were wearing tutu's. The whole little ballet costumes, in fact. The two families looked so happy.
Somehow, it hit me. The fact that my little girl couldn't do that. I did. I took ballet for a while, and I absolutely adored it. I would've continued, but my teacher went away. We lived in a small town, and there was no one to continue our lessons with. The teacher urged my mom to take me to the next-door town, because accordingly to her, I was good. It warmed my heart, but I told my mom it's okay. We don't have to continue with lessons. It broke my heart, which I never told my mom. But I was old enough (at about age 8...hahaha) to know that we weren't rich. And that it would cost my parents allot of money to not only pay for my lessons (with the previous teacher it was free, but in the neighbouring town it wouldn't be), but also the petrol money. I knew it wasn't worth it, because even if I was very good, I wasn't exceptional. It wasn't as if this would've been my career one day.
So when I had a little girl, I was excited about the idea of her doing ballet one day. Not super excited like it's a burning desire in me. Just excited because I loved it so much, and hoped that she too would find joy in it. Soon after starting grade R, I asked Boeboe if she'd like to start ballet. She agreed, very excitedly. We made sure with her orthopead surgeon that it was safe for her feet/legs, and he said yes, it won't cause any harm. It may even be beneficial.
Sadly, Boeboe didn't enjoy the ballet. In the beginning, she couldn't tell me why not. She just continued to be negative on ballet days. Seeing it as a chore, not a joy. I used to be excited about going to my classes. She wasn't. She was strangely not very talkative about it at all.
After some time, she started complaining about it. Her legs hurt. She couldn't explain to me why and what precisely. Just that it hurt. A few months later, she was able to vocalise it better. Telling me what they do, when it hurts. Usually, it was when they were stretching, or twisting their legs or feet.
Numerous times I'd ask my husband if we should allow her to stop. Every time though, we thought lets just give her some more time. Let her try and find the joy in it. Let her learn that one should not give up, just because exercise can be painful. Let her learn that if you start something beginning of the year, you see it through until end of the year.
So. We treated her like a normal little girl. We treated her like we would've treated any girl of ours. Not like a disabled kid. Partly of course due to the fact that we didn't know yet that she was disabled. Sometimes, I did think...what if something is wrong with her legs? Ballet isn't suppose to hurt at this age? But then I'd shrug it off again.
End of that year though, I gave her the choice if she wants to continue or not, and she immediately said no thank you. She chose to do a music/drama type of class, which she enjoyed thoroughly.
So I sat in my car a few days ago...watching those little girls walk happily out of the ballet lesson in their little costumes, and I felt like crying for my little girl. Because of the pain I put her through. She tried to tell me. Yes, it couldn't have been TOO bad, because it's not as if she was crying afterwards (or during) lessons. Or begging me to stop. She would just matter of fact telling me she doesn't like it much, because it hurts her legs. How was I to know?
Now I'm wondering. If we have known...almost 3 years ago. If we had known that Boeboe has a nerve condition involving her legs. Would we have been more sympathetic? I'd like to say yes. Would we have let her stop the ballet classes? I'd have to say Yes, most definitely.
What would Boeboe have learned from that? That her parents are sympathetic and supportive? Maybe. That you can stop something when it hurts and you don't like it? Yes. That you can use a disability to not do something that causes pain? Yes. That you don't have to finish something when you have a good, valid, solid excuse? Yes.
What did she learn? That her parents were unsympathetic and not supportive? Yes. That you have to stick through something despite it being painful? Yes. That you have to bear and grin? Yes. That you have to be strong? Yes. I can go on and on. Is this what I WANTED her to learn? No. A big, fat, solid NO.
People tend to say...don't wrap your disabled child in cotton wool. I don't. My daughter doesn't even know that she had a "disability". Or have. Whatever way you want to look at it. She doesn't know there's something different between her and her brothers. Now that her bladder is "fixed" in her eyes, she doesn't know there's any more difference between her and her peers. So I certainly do NOT wrap her in cotton wool. I do not safeguard her. I do not protect her from unnecessary hurt because of her condition. Maybe because we didn't know about this condition from birth? Maybe because by the time we knew for a fact WHAT is wrong with her, she was already operated for it. I could never mollycoddle her because of my suspicions. Until we had a diagnosis, I treated her like a normal little girl. Then, after her diagnosis, she's been operated on already and mostly "fixed". So no need to treat her different than any normal little girl.
But then I think of the ballet. And I feel sad for her. Sad that she had to do something physically painful and uncomfortable, because we didn't know about her condition. How unfair towards her. Didn't she deserve to be treated sympathetic? And supportive?
So what's better? To treat a disabled child "normal" so that she doesn't feel disabled? Or to treat a normal child "normal" and then finds out she isn't so "normal"? Which hurts the child more? Isn't it the right of a disabled person, to be only pushed to her limits, and not beyond? Isn't it fair for a disabled person to be treated inside their limits? I once complained to a neurologist that Boeboe can't walk very far without getting very tired. He answered: All children gets tired when walking far.
True. But a able-bodied child gets tired differently than a disabled child. The latter's tiredness goes much much deeper. It causes aches and pains and a sense of failure. Is that fair? Should you push your disabled child until they feel that sense of failure? And then wash your hands in innocence and say "I didn't want her to feel disabled"?
OK, I'm rambling now. Like you see, I'm struggling with this. How far does support, sympathy, empathy and acceptance go? And how far do you push a little child? To be normal.
If I could do it all over again. This time WITH the knowledge of my daughter's condition. WITH the knowledge that her legs have been touched by her condition. I would've done it differently. I would've been more sympathetic. I would've looked for a trolley in the mall earlier. I would not have gotten cross with her when she complained she's tired. I would not have walked so fast. I would not have told her "everyone's legs tire" when she complained. I would not have urged her to take ballet. I would not have told her she had to finish the year's ballet. That it's okay and acceptable that it makes your legs ache. I would've given her more choices. Less forcing. More support. Less arguing. More sympathy. Less denial of her feelings. Would this have changed her into a wimp? Into a worthless person who do not push herself? No. It would've validate herself. That what she was feeling, the pain, was real. It would've given her confidence in the fact that her parents believed her. I think the lessons she should've learned, was more valuable, than the lessons she did learn with our unsympathetic attitudes. So I'm sorry. Sorry that I didn't know. Sorry that I acted like everything was normal. Sorry that I didn't believe my daughter. Sorry that I didn't support her.
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