Duchenne Mom

Bittersweet Blessings

This week my two sons got their very first power chairs. It was a day full of smiles as they raced through the house and tested their chairs’ ability to lift up and down, turn corners, and navigate their bedrooms. My sons are only eight and nine years old, and yet this day is already here because they fatigue so quickly. It was such a blessing to receive these fantastic chairs. They will give my boys more independence and more rest for their muscles throughout the day. It is an absolute blessing in every way, but it’s also incredibly bittersweet.

0 4 min read

Thank You For Asking

Empathy is powerful. Kindness is critical. When I can share my reality with someone and still feel loved, it’s comforting. When I feel even remotely understood, it makes such a difference in my life. I carry so much weight on my shoulders, and when someone cares enough to try to understand my world, it makes the load just a little lighter.

0 5 min read

Dear Duchenne

Duchenne, you have no idea how much you’ve changed our lives since diagnosis day. It started with a simple blood test and ended with a phone call that brought me to my knees. I cried out to God, begging Him to heal my boys. I begged God to take you out of our lives, but sadly you’re still with us. It’s taken me a long time to accept that fact.

0 4 min read

For Better or Worse

My marriage is a fairy tale. Not the kind you read about in children’s storybooks where all the hard stuff only happens before the happily ever after, but the real kind. The kind with ups and downs, joys and sorrows, and is much more realistic than the storybooks describe. My prince charming doesn’t own a white horse, my carriage is a giant mobility van, and the only maid in our castle is me, but our lives are still beautiful.

0 5 min read

The Weight I Carry – Confessions of a Carrier

I thought I was prepared for the results. For months I waited and worried about that call. I tried to prepare myself as best I could. I expected it, and yet the reality of hearing those words hurt much more than I anticipated. Feelings of shame, guilt, and fear came rushing over me like a sudden wave the moment I heard those four words. Spoken so bluntly from the other end of the phone were the results I’d waited to hear for over a year. “You are a carrier,” he said.

0 4 min read

The Magic of Christmas

Christmas has always been my favorite holiday. My childhood Christmases were filled with the most wonderful memories. I’d wake up to the smell of bacon and run to the kitchen to hug my mom. Then, I’d eagerly wait by the window for my grandparents to arrive. As soon as they came, we’d beg to open presents, and then have the most amazing breakfast.

0 5 min read

The Gift of Parenting

Every day I wake up surrounded by moments. Some moments are ordinary, and some are unforgettable. My favorite moments are the ones full of laughter, joy, and unconditional love. I’m not blessed with these beautiful moments because I have a perfect life, or due to a lack of suffering. Quite the opposite, actually, I have plenty of painful circumstances in my life.

0 5 min read

The True Inspiration Behind the Curtain

People are usually caught off guard when they find out that I have two sons with Duchenne muscular dystrophy. They say things like, “I don’t know how you do it?” or “I could never handle that.” They call me brave and strong before they even know me. People compliment me for simply surviving in the world of Duchenne. My faith may be strong, but I assure you, I am weak. The truth is, the ones who are really worthy of these comments are actually behind the curtain. My children are the inspirational characters in our story, not me.

0 6 min read

Duchenne Siblings: A Vital Part of the Hero Team

I witness bravery every single day. I watch my two sons fight a degenerative muscle disease called Duchenne. I watch them struggle to do simple things that most people take for granted. I could go on and on about how courageous my boys are. I could write a novel about how much they inspire me, and someday I will, but this is not about them. This is about the other hero in my home who inspires me, my daughter. This is about all the siblings out there that show the rest of the world how to treat someone with special needs. This is about them.

0 6 min read

Dear Newly Diagnosed Duchenne Mom,

“Be strong,” people keep telling you, but they don’t know how it feels to hear the doctor confirm the diagnosis you feared most. They don’t know that his words keep haunting you like a song you can’t get out of your head. Duchenne Muscular Dystrophy you keep hearing over and over again. They don’t understand the trauma that takes place inside a mother’s heart when she hears that her child has a degenerative disease. They don’t, but I do.

0 4 min read

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