I’m Wondering if Advocacy Is Always Worth It

Even caregivers who aren't natural fighters often have to engage in the fight

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by Betty Vertin |

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Before three of my sons were diagnosed with Duchenne muscular dystrophy (DMD), I didn’t know what I didn’t know. After that, my learning curve went straight up.

I still needed to learn the amount of advocacy work it takes to be a parent to a child (or children) with different or unique needs. It’s everything from working with elected officials to fighting insurance companies, meeting with schools, and raising awareness. Sometimes it feels like it’s all I do, and it feels like one fight after another.

Advocacy is not something I enjoy doing, but it seems necessary when raising children with a rare disease. I get tired of constantly fighting for what my kids need or ensuring they’re included and that facilities are accessible to them.

This may sound foreign to some of you; advocating and fighting might be the part of this parenting package that comes naturally to you. It’s a challenge for me, however.

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I’ll always be their advocate; I’ve dedicated my life to my children and will do whatever is humanly possible and necessary. However, I’ve caught myself thinking about how hard we push. Is the fight always worth it in the end?

There are situations in which I’d never stop fighting. For example, I wouldn’t stop fighting if insurance denied a medication. Or if my child were being neglected in a hospital or medical setting.

And sometimes I advocate, educate, attend meetings, and make requests so that my children with special needs are included and treated fairly. There’s usually a legal precedent that allows my children to be included or accepted, but sometimes, even if my family and my children have the right to be someplace, it feels like we’re not wanted.

No one ever says, “We don’t want your son here.” People know that sounds bad, so they don’t say it, but I’ve been in situations where I can feel it. And those are the situations where I wonder if the fight is worth it.

Is it bad for our children and us to be unwanted simply because we’re different, with different needs? Yes, very bad.

But I’m tired of wasting my precious time and energy away from my sons while creating even more stress for my children to be someplace we’re not wanted.

This rare life can be isolating. The list of places we’re welcome and invited to is short. So if we don’t advocate for changes that involve our children, we add to our isolation.

But I need help with knowing what the right balance is. When do we push for acceptance and inclusion, and when do we say this fight isn’t worth it? Or do you ever walk away from a battle for your kids? We owe it to them to continue to be the thorn in the side of all things reluctant to change.

I wish I knew that every fight is worth it.

Because here’s the reality: My kids are worth it. They’re worth every little bit of extra help they might need. They have these great senses of humor; they get the timing of a perfectly told joke. They’re genuine; they’ll never pretend to be something they’re not. They’re resilient and not easily scared. They’re friendly, and they’re smart. But they need a little extra.

I want to shout from the rooftops that the extra? It’s worth it. To spend time with my kids, to have them in your group, your building, your life — the extra is worth it!

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.


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