Dear Parents

I’ve been thinking a lot about something for some time.

I belong to a terrific network of those affected by Emery-Dreifuss Muscular Dystrophy though Facebook.  I joined the group as an adult who has lived my entire life having Muscular Dystrophy.  I was finally diagnosed with an exact type just a few years ago. This group is such a source of inclusion, which is amazing. To be connected to people who struggle like me, worry like me, deal with doctors like me. And heck – LOOK like me in so many ways. It’s awesome. I’m grateful for everyone in that group! I’ve learned so much from them. Many things that may actually save my life.

For the most part, our posts and conversations are from those of us who have full, manifesting EDMD. But I know there are also a quiet group of people on there who are parents (carriers or not) and other relatives. They are the ones I keep thinking about. I read their concerns and their struggles. And although I am a parent myself, my thoughts often turned to how I feel having been that child who lived with EDMD my entire life.

To parents who are raising children with a physical disability similar to mine, I want you to know a few things:

Genetics Are Not Your Fault

It’s not your fault that your child has this disability. Even if you are a carrier, even if you knew it ahead of time, it is not your fault. “Bad” genes happen and your child doesn’t blame you. Those of us who are effected because of spontaneous mutations wouldn’t blame our parents even if we could.

All Life is Worth Living

Your child’s life is worth living, and you gave them life! Life is full of challenges and theirs will be unique. But your child gets to laugh, smile, sing, and enjoy life. They will love, have friends, and influence those around them.

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The Disability Belongs to the Child

Having a disability belongs to your child. He/she owns it. It greatly effects your life, I know. I’m a parent, too, so I get it. You are invested in emotion, time, lifestyle, etc. BUT… It is your child that has the disability. At the end of the day, you are not the one living with the disability, only loving someone who does. You will never actually know what it’s like completely. Always remember that and let it belong to them.

Having A Voice

Your child needs to have their own voice. It’s so important that they are in charge of their body, their care, and their needs. Even if it is spoken through you, it needs to be your child’s voice that is heard by doctors, teachers, therapists, or strangers.  Always communicate options to your child and decide with them what they want to do and how they want you to help them. Your child must develop the skill of speaking for themselves, especially as they continue to grow up.

Don’t Create Guilt

They will feel responsible for your being upset, feeling guilty or burdened. They can’t help having this any more than you can. So if they know you have any of these overwhelming feelings because of who they are, they will very possibly feel they are causing that. It is not fair to them for you to suffer for a disease that they have.

Be There to Provide Support

Don’t feel bad, just be a source of encouragement. We don’t want anyone to feel sorry for us, mourn for us, etc. We just need someone to support us, let us vent, and help us find solutions.

Let There Be a Future

Your child deserves to have a future. That sounds obvious, but if you worry about them having a shortened life, you are taking their future away. Look forward to graduation, getting married, having a career, even grandchildren. They deserve that! No one knows how exactly their disability will effect their life, but I expect to live well into old age and I always have, regardless of what the doctors thought.

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A Significant Influence

We aren’t defined by this, but it certainly is a big part of who we are. Personal challenges are what make us stronger and influence our character. I’ve thought about what my life would be like if I was “cured.” Who would I be if I could run, stand up straight, look down and read a book? Pick up my daughter? It’d probably be a pretty cool thing – but I’d feel like a part of me would be taken away, even if it’s a part of me that I struggle with the most. Be mindful of that as you hope for a cure, etc. Taking it away will be removing a part of us, and that won’t be easy, no matter how welcomed it is. And your child may think about that, not being able to verbalize it, if you ever say something like “I wish that they have a cure one day.”

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I hope that my experiences and those of others can be a reassurance of how great our lives are. I hope that you have a supportive network to join for your specific challenges. You are not alone, your child is not alone. Be strong, stay positive! Enjoy every day!

P.S. If your child is old enough to have a Facebook account, I encourage you to have your child join a group for their specific disability.  What an amazing gift it is for me to be connected with the few out there who share the same rare disease.

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