As I look in the mirror, I’m proud of the person staring back at me

Years ago, I had my colors done: I’m a winter. Dark blues, greens, scarlets, royal hues, red, black, and hot pink look best on me. I don’t always follow these guidelines, but I own a few statement pieces in these shades and wear them when I feel confident.

On Tuesday, I wore a hot pink blouse with black jeans. As I looked in the mirror at a hotel room in Denver, where I was staying with my sons Max and Rowen, I was pleased with the way I looked. My summer tan was shining, and I smiled when I noticed the gray in my hair. I like the way I am aging.

That moment brought back 15 years of memories.

I began traveling with Max 15 years ago, when he was diagnosed with Duchenne muscular dystrophy (DMD) as a toddler. Soon after, I discovered that his brothers Rowen and Charlie also had Duchenne. We were living in rural Nebraska, so traveling to see specialists and participate in clinical trials became essential.

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Still smiling, after all these years

I’d never traveled much before Duchenne came into our lives. Growing up in foster homes, I went on only one vacation in my first 18 years. In college, I was too poor for spring break trips, and I’d already become pregnant with my first child before I graduated. That child arrived before our wedding, so we didn’t have a honeymoon, either.

I stopped working shortly after Max, Rowen, and Charlie were diagnosed. We had a young, growing family, so my husband, Jason, often remained at home with our other children when I traveled. Jason and I share seven children: Lexi, 24; Max, 19; Chance, 18; Rowen, 16; Charlie, 14; Mary, 10; and Callie, 3.

Suddenly, I became a small-town Nebraska girl flying across the country with children, driving hundreds of miles, and navigating hotels, restaurants, and hospitals — often managing three little boys by myself.

At first, I was a nervous wreck. I was always worried about how we would pay for everything and how I could keep three young children happy while also staying sane and making our appointments on time.

To keep things under control, I made lists so I wouldn’t forget what to pack, where to go, what time appointments were, and more. I was scared — a lot — about what Duchenne would do to my sons and about traveling alone. Whenever I stopped for gas, I feared something bad might happen. At every hotel, unloading the van and keeping my boys in sight was a challenge. Stress overwhelmed me more than once; I remember breaking down in tears and yelling because of how deeply exhausted I was.

Yet, as I looked at the older version of myself in the mirror, I smiled. We’ve made it this far. Duchenne has done much of what we were told it would, stealing so much from my sons. Not everyone may be standing these days, but we are still fighting, and most days, we’re also still smiling.

As time and the disease have progressed, we’ve met every challenge head-on. When the boys stopped walking, they got power wheelchairs. As I grew older and they became too heavy for me to transfer them, we got lifts. This week in Denver, we’re seeking assistive arms for them as their arms grow weaker. Duchenne hasn’t scared us off yet.

Traveling now is a cinch. I no longer make lists of what to pack. If we forget, I can buy what we forgot. I didn’t even pack until about 30 minutes before we left home this time. I’m not scared to stop for gas anymore, and checking in at the hotel doesn’t merit a second thought. I go to the front desk and ask for help whenever the room isn’t as accessible as it needs to be.

Sure, I was smiling in the mirror because I like my pink shirt. However, the real happiness lies in the fact that we haven’t given up. Fifteen years have passed, my hair is gray, and the boys are weaker. But that hasn’t stopped us from doing anything. I’m smiling because I’m proud of us!

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.