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Becoming a Positive Advocate for My Son With Muscular Dystrophy

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I have always been the epitome of a mother bear. From day one, I would do anything for my kids. When it came to their comfort and contentment, I was always ready to go to bat for them. But these skills were really honed when I had to become the medical advocate for my oldest child.

When my son got his muscular dystrophy diagnosis at just shy of 6 years old, I was quickly swept up into a world of doctors, appointments, tests, medications, and so on. I was also dealing with my own grief over having a child who may not live a full, healthy life. There was a lot going on. I felt knocked down at times, and sometimes it became hard to find my voice. But eventually, time healed, and I felt like I could breathe again. So when there were obstacles or difficult medical professionals, I would speak up. While my voice had returned, I started noticing it had changed.

There was an anger growing inside me, and it was coming out in my interactions. There was the time a nosey older woman started giving me a hard time for parking (legally, with a placard) in a disability spot at the mall. She said, “that’s for older people who need it.” When I replied it was for my son, she came back with, “well, he’s in a stroller so he doesn’t need the spot.” I snapped. “He’s 7 years old, what 7-year-old uses a stroller? And it’s people like you that make the lives of people like us so much more difficult!” The rage was fuming out of me, and I was taking out all my sadness and anger on this woman.

A simple “I’m parked legally, thank you” would have done it. But I was on the edge and this woman was giving me an outlet to vent all my disappointment and anger over my son’s situation. And the thing is, it never felt good afterward. It didn’t even feel good during the outburst either. I was left exhausted, sad and even angrier at the world. I could not continue this way. With time, and the rapid maturing that occurs when dealing with very real and difficult challenges, I began to rethink how I was advocating for my child, and what sort of example I wanted to be for him. There was also a growing acceptance over the cards we were dealt, and we were starting to see some glimmers of light with treatments and how my son was progressing.

All of this led to a transformative moment in my life. I didn’t want to add to the negativity in this world, I wanted to be a beacon of light and goodness to my family, loved ones and the bigger world around me. So when challenges would crop up, as they do, my responses changed. I learned to politely ask parents parked illegally in accessible parking spots at school to please move their cars. I was doing my best to give them the benefit of the doubt. I was usually met with apologies and embarrassment, and I was left feeling empowered and satisfied with how I handled myself.

The best part is this has carried over into other parts of my life. There was a recent situation in our community where a small group of men with money and power were trying to make a decision nobody else agreed with them about. I was angry at first and felt helpless. But I sat on those feelings for a few days, and then devised a plan. I wrote a letter. The letter was a positive, supportive letter, and not once did it point fingers at any person or people. I sent the letter to over 300 people in our community, and ended up with close to 250 people signing the letter with me.

The result is these men listened. They became aware of the opinions of the masses, and they conceded to the majority. This was a big win for the “little guys” and I did it completely with respect and dignity. I never resorted to accusations or negativity. I truly attracted more flies with honey than with vinegar, as the saying goes.

Most importantly, I want to be a good example to my children. I want to teach them to advocate for themselves, but from a positive place. Being kind and respectful need to be the priorities. Yes, there will be times when you may need to be louder and push a bit more, but you need to maintain your dignity and give others grace. If this is the one thing my kids learn from me, I will feel that I have accomplished so much as a mother and role model. And if everyone was able to do the same, just think how much better this world would be.

I am an advocate. I am a dignified human being. I am modeling these traits for my kids and hopefully others as well.

Originally published: December 19, 2019
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