Duchenne Mom

Mama Bear

I’ve always considered myself to be a protective mother. From the moment I had kids I understood why “Mama Bears” had the reputation they did. However, I was also soft. I was quiet and afraid to speak up for myself. I was naïve and way too trusting that others would automatically have my kid’s best interests in mind. Even after […]

2 6 min read

Why Mothers Should Be Celebrated Every Day

Growing up I had the mom that everyone wanted. The patient, sweet and soft-spoken high school teacher who showed us unconditional love every day. As a little girl, I looked up to her, and still do. Now that I have my own children, it’s surreal. She’s still my biggest encourager. She’s always cheering me on and complimenting me as a […]

0 5 min read

Don’t Look Back

“Don’t look back, you’re not going that way.” This quote could have so many meanings to so many people depending on what they’re going through. For me, it made me realize that I spend too much time in the past.

2 4 min read

Surrender

Years ago, I wrote a book about motherhood. I tried to give helpful advice. I spoke of real-life experiences and talked about how to survive the chaos that engulfs you as soon as you become a parent. Then like a tsunami we never saw coming, our two boys were diagnosed with Duchenne. Suddenly, I didn’t know how to be a “regular” mom anymore. Suddenly I was a Duchenne mom, a special needs mom, and a homeschool mom. I felt like a whole new mom. I felt like a fraud. I couldn’t relate to normalcy anymore.

3 4 min read

Picture Perfect

Sometimes I feel like a fraud. People tell me I’m strong and brave. They praise me and say I’m doing such a great job handling the circumstances life has given us. Even other Duchenne families reach out to me and tell me how inspiring I am to them. I feel honored by their words, but I also feel like telling them how much I struggle too.

0 3 min read

I Can’t Do That Anymore

I have a confession to make. Sometimes I focus way too much on the negative things in my life. I see a family riding bikes and my heart sinks, my boys can’t do that anymore, I think to myself somberly.

0 4 min read

Hands and Feet

I may be a different kind of mother than I thought I’d be, but I know now that I wouldn’t want it any other way because this is my God-given purpose. He knew what my children needed from me, so he gave me a love for caretaking. He gave me empathy for others and he gifted me with a love for my children that is beyond my wildest dreams of motherhood.

0 6 min read

Carry Me

When it was time to take him back to bed, I helped him up and followed behind him. Watching him carefully wobble as he walked cautiously back to his room. He stopped and looked up at me, “Mom will you carry me?” He whispered. I scooped him up and carried him to his bed. As I carried him, I could imagine him as a tiny little baby staring up at me, completely dependent on us for his care, and yet here he is nine years old in need of the same type of care. Pushing my emotions down, I kissed his forehead and went back to bed.

0 4 min read

A Day in the Life

Some days I wake up determined to face my day. Some days I feel motivated to do everything with a good attitude. I aim to view each day as another opportunity to make memories, live life to the fullest, and be grateful for what I have. Some days I breeze through my days of caretaking, motherhood, teaching, and serving with joy and purpose, but other days I have trouble just making it to the coffee maker.

0 5 min read

Worn

Yesterday, I felt defeated. It was as if I was hiking up a steep hill wearing a backpack full of heavy rocks. Each rock represented something different. One was lack of sleep, another represented anxiety. One was depression, fear, exhaustion and the heaviest one that always seems to be making its presence known goes by the name of Duchenne.

0 5 min read

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