rare disease Archives - Duchenne Mom

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

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

Dear Younger Me,

Right now, you’re probably putting your baby to sleep. You might be rushing to put him down so you can go get dishes done, laundry started, and dinner prepped. I get it; I do. I know you feel overwhelmed by the constant state of stress you’re facing. That growing to-do list in front of you seems to get longer by the second but listen to me closely. You need to slow down. You need to cherish every single second of the stage you are in right now because before you know it – it’s over.

0 4 min read

The Little Things

Have you ever noticed that when you look back on memories from your past, it’s actually the little things that come to mind first? Looking back on my life, I don’t see a collage of all my big memories. Instead, I see a flash of little things that seemed somewhat ordinary at the time. However, it’s those ordinary moments that turned out to be incredibly memorable.

0 4 min read

Hang On

Sometimes I feel like that poor little kitten in that famous poster. “Hang in there,” it reads, as the sweet little kitty tries to grasp that tree branch with all its might. Apparently, this poster is supposed to be motivational. I see it more as a reminder of how hard life is, especially as a Duchenne parent. It reminds me how isolating this life can be, and it makes me realize just how important it is to have support from others who truly understand.

2 4 min read

What’s Wrong With Him?

The doors opened, and we all went in and pressed the appropriate button. The doors closed, and he just stared at him. The old man shook his head and looked at me. With a thick heavy accent, he said, “too young.” I smiled awkwardly, unaware of what he meant. “Too young for a chair,” he said sadly. I nodded quietly, but when my eyes met his, he pointed at my son and asked, “What’s wrong with him?”

0 4 min read

A Normal Life

I don’t often find myself wishing for a normal life. I love my life, and I don’t see the point in trying to envision what could’ve been had Duchenne not entered into our lives. I try to accept my life just as it is and find joy in it, but somedays I do have moments of sorrow.

0 3 min read

Today

I live with one foot in the future. My life is a constant dance between hope and fear. I have the privilege of raising three incredible children, two of which have a degenerative disease. My days are full of joy, but they are also full of the most agonizing kind of pain I’ve ever experienced. I watch as day after day my boys grow weaker and weaker. My daughter is gaining more and more abilities as she grows stronger, while her older brothers are continually losing abilities they once had. Duchenne is a cruel form of torture.

0 4 min read

Difficult Decisions

It felt like we were thrown into a raging unfamiliar sea with no idea how to swim. Drowning in emotions, grief, and paperwork, we struggled to adjust to our new life. We were being asked to make decisions about things we knew nothing about. It was overwhelming, to say the least.

0 4 min read

The Truth About Two

People often wonder what it’s like to raise two sons with a degenerative disease. It’s a hard question to answer because it feels impossible to live through, let alone explain. There are no words to express how it feels to watch one son weaken and lose his ability to walk, only to have another son following the same pattern right behind him. My boys are only two years apart, and sadly the disease seems to be affecting them both rapidly.

0 4 min read