Why I’m a Good Mom to Children With a Rare Disease

I do my best to try in life, but I’m not perfect by any means. That’s me. I hope that is how I come across in this column. However, I never want to make life in a Duchenne muscular dystrophy (DMD) family sound easy, perfect, or Instagram-worthy. Truthfully, if we were all on the Hot Mess Express together, I would be the captain!

Here’s a prime example: Last week, we at Muscular Dystrophy News Today were off for the holidays. Guess who didn’t realize that? Me! So I wrote a column about Christmas that wasn’t published. Do you know how many messages and reminders we writers were given? More than enough. Did that help me keep it straight? Nope!

I’ve been feeling overwhelmed for at least a month, and I keep messing up in little ways, such as forgetting to buy ingredients at the grocery store, forgetting to charge an iPad for the kids at school, wondering if I’ve fed the dogs, and thinking about how long it’s been since I’ve washed my hair. I’m a severe hot mess in the middle of the frozen Nebraska tundra!

So I’m going to get personal with you in this column and share some things about my life that you probably wouldn’t know unless you follow me on social media. It’s not a secret, but rather something I haven’t previously shared in this column.

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A hard road

I was raised in foster homes. The first time I was placed in a foster home, I was in second grade, and the last time, I was a sophomore in high school. I never returned to my parents after that. It was hard to grow up that way, and I didn’t get through it without it leaving scars on my heart.

But when I met my husband and started a family, I felt like I had won the lottery. For the first time in my life, I had a solid family life, which brought me immeasurable joy and happiness. It was my happily ever after.

Less than a decade after that, three of my sons were diagnosed with DMD. This diagnosis is devastating enough, but for me, there was more to it. I finally had a family of my own, a house full of happiness, and endless dreams for our future. For the longest time, I thought Duchenne had robbed me of my happy life.

But as we started to navigate Duchenne’s new, rare world, I realized that I had some real-life experience that helped prepare me for the road ahead.

Growing up in foster homes and the child welfare system taught me resilience. I had already lived through countless setbacks and obstacles. I competed in four years of high school track to get a scholarship to a local college, for example, despite not knowing where I would live next or who might be in my corner to support me. Yet I kept moving forward, one foot in front of the other.

That is the same mentality I rely on when we face our sons’ disease progression and other health setbacks.

As a foster child, things were almost always out of my control. Either the state or my foster parents made all of my decisions, such as where I would live, and with whom, and when I could see my biological family. Similarly, I have no control over Duchenne.

I could share many more examples with you, but the main one for today is advocacy. In foster care, there was a program that provided people who worked with us minors to help us have a voice in what was happening. That was my introduction to advocacy. As I aged in the system, my advocacy skills increased. Today, as a mother to children with a rare disease, I advocate daily. My life in foster care prepared me for that.

There is a reason

These realizations have come to me over the years. It’s not lost on me that my life in foster care prepared me for my life as a mother to three sons with DMD. Yet as a child, I would wonder, why? Why was this happening? Why can’t I have a normal life?

As an adult, my eyes are currently full of tears that are about to flood down my cheeks. I would experience that same childhood over again if it would help me be the mom my boys need me to be.

I have become thankful over the years. I never could have imagined then what I know now, but God had a plan for me. And I know without a doubt that despite these hot mess moments, I am exactly where I am meant to be, doing exactly what I was meant to do.

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.