Sacred Scars

I have deep scars all over me. I’m covered in painful wounds that have completely changed my life. Most of them are not visible to the eye, but I assure you they are there. Each scar has been left behind one by one from all the painful things I’ve gone through in my life. The loss of my older brother will forever leave a mark on my heart, one that I still feel every day. There are so many invisible scars, and they all hold a significant story, but the one that cuts the deepest is most definitely my Duchenne scar.

To the One Who Struggles with Depression

I see you cry in the quiet of the night as your worst fears haunt you like a bad dream. I see you put on a smile in an attempt to hide your pain from the world. You feel ashamed, afraid, and misunderstood. I hear you politely answer questions with your usual, “I’m fine.” Some days you are fine, but […]

Grieving Change

There is no parenting manual for Duchenne parents. There are no perfect words to say that will take away the heavy emotions that come with this disease. All we can do is walk alongside them at their pace. Sometimes that means encouraging them to do hard things.

Where Was God

I’ve heard many people question faith in times of trouble. Trauma strikes and people ask, “where was God?” Where was He in the hardships? Where was He in the pain and the grief? Where was God when everything fell apart?

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.

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.

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.

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.

Diagnosed with Duchenne

I remember the day I became a mother like it was yesterday. I remember vividly how it felt to hold my precious newborn for the first time. I remember the tiny fingers and tiny toes. I can almost smell that heavenly newborn skin aroma when I think about it. Oh, how I love that smell.

The Empty Chair

On November 6th, my whole world changed. I found out that you were gone and nothing has been the same since. I keep expecting you to walk through the door and make everything okay again. I just can’t seem to grasp this new reality without you in it.