Last week, I wrote an open letter to parents of kids with Duchenne muscular dystrophy. Now I want to offer some words of advice to those kids.
Your parents love you and will sacrifice a lot for your well-being. That means you have an even greater responsibility as a child with Duchenne to listen to your parents, respect them, be disciplined, be grateful for their dedication and hard work, and love them back.
I don’t have the same perspective as a parent, but I do have the perspective of being a son. I hope that my successes and failures in the occupation of “child” can help you get along better with your parents and lead to better health outcomes.
When you get older and become more aware of your situation and surroundings, you will probably wonder, “Why am I this way?” Up until now, you’ve known you were different, just not how different. As the disease progresses, you’ll realize you will never be like your friends. You won’t be able to swim as fast, jump as far, or even walk as well as them.
Life can feel unfair, trust me. However, the worst thing you can do is blame anyone, because no one really is to blame. It can feel easy to take out all that pent-up anger on your parents. But before you do that, take a step back and realize how much they’ve already done for you. That’s why respect is important.
Your parents have lived a lot longer than you, and I’m positive they’ve learned their fair share of lessons. They also know you very well. My mom will remind me often how much she knows about me. Though I’m hesitant to admit it, she’s right. So is my dad. It’s time to admit they know more than you and know what’s best for you.
Therefore, you should not only listen to what your parents have to say, but respect what they are asking you to do. They will ask for plenty of things that are in your best interest, even if you can’t understand it at the time. My parents, for instance, would always say, “Hawken, you need to take it easy.” I hated that phrase, but deep down I knew it was right. The more I strain — and therefore tear — my muscles, the less I’ll be able to use them in the long term.
I wanted to play as much as possible, but that didn’t stop my parents from being correct. You younger boys and girls should know that your ability to play has nothing to do with how successful you will be in your chosen career. I hate to break it to you, but they don’t have recess in high school.
If you come from a place of obedience and respect, then life will go a lot easier for both you and your parents. Once you get enough experience under your belt, you’ll realize that your parents can be wrong, too. But the moment you think you are better or more knowledgeable than them is when the real issue happens. Here’s how it’s been put to me: The moment you move out of their house, you can disagree all you want.
Here’s the last thing I wanted to leave with you. Your parents love you more than you know. They probably love you more than you love you. We take them for granted too much and we aren’t grateful enough. I know I said this in my last column, but it’s worth repeating. Say please and thank you all the time. Tell your parents you love them and show it. Give them a hug because they deserve it.
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