“I’m tired, I’m worn. My heart is heavy, from the work it takes to keep on breathing.”

These are not just the words on my heart at the end of a difficult day, they are the lyrics to one of my favorite songs. It’s a song called, “Worn”, by Tenth Avenue North, and it speaks to me. I find comfort in music, especially on hard days.

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.

Duchenne is always there, but lately it seems to be getting heavier and heavier. Everything feels harder these days. As my boys get older, I struggle to lift them. My younger son who is still ambulatory is not walking much at all anymore and when he does – I fear he will fall. I’m terrified that one of these days will be the day he takes his last steps.

I’ve been through this before with my oldest, so maybe I should feel less fearful, but there’s just no way to prepare for something like that. Even if you see it coming, it takes your breath away. It knocks the wind right out of you with its arrival.

When Logan stopped walking, he seemed to accept it quickly. I watched him grieve the loss and move on with grace. I, however, felt a kind of grief I’d never known before. It was like this huge flashing sign in our home reminding me of Duchenne’s ability to steal from us. At just ten years old, I wasn’t ready. Now we face the same situation with our younger son, Mason who is only nine. He is two years younger and yet here we are, just one year later watching it happen to him.

Yesterday I attempted to help him stand up to go to the bathroom, but when I stood him up, he collapsed in my arms. I flashed back to the day Logan took his last steps, exactly the same way. I stood him up and he buckled into my arms never to walk again. I felt that same familiar lump in my throat.

I know it’s coming, but I’m not ready to face it yet. Each step he takes looks like such hard work for him. He shifts his weight carefully from one side to the other as he holds on to walls, door handles or my hand.

He asked me to lift him up again. I offered to carry him, but he insisted. He said I just leaned him forward too much. I tried to stand him up again and sure enough, he stood up and walked to the bathroom. I felt relieved, but I also felt a deep sorrow. Of course, he gave no indication of fear or sadness, and just said “see Mom, I can do it.”

Then a few minutes later, as I tried to move my dog to a different spot on the couch, she wouldn’t wake up. I shook her. I lifted her up a little, but she was limp. I cried out and began to panic. Thankfully a few seconds later I felt her breathing. She woke up confused. Our beloved pug is fifteen years old and we know she doesn’t have much longer, but again, I’m not ready. Not today, I thought. I can’t carry any more weight in this heavy backpack right now.

After dinner, I collapsed into bed and called my Mom. As I unloaded all my emotions onto my sweet mother, I felt the weight of that backpack get a little lighter. I was still surrounded by Duchenne, emotional baggage and a huge pile of clean laundry that I meant to fold hours ago, but I was okay. I was still tired, I was still worn, but my heart was a little less heavy. Then my husband came home and listened to me pour out my heart to him, he’s the only one that really understands this life of ours. His warm hug and listening ear were all I needed to feel more weight fade away.

I’ve realized that if I keep all my emotions zipped up tight in that backpack, like I tend to do – it only gets harder to carry. When I try to keep everything pushed deep down it’s much harder to bear, but if I share my heart with someone, I feel better. When I talk to my amazing friends and family everything that I’m holding onto gets a little easier to carry. The weight is still there, but it’s lighter because I don’t feel like I’m carrying it alone.

That same song has another line even more important than the first. “I know that you can give me rest. So, I cry out with all that I have left.” I know that God offers rest to the weary, I’ve seen it and felt it many times. I know that I have an amazing support system who helps me carry the weight of my circumstances, but I need to let them. I can be so stubborn about asking for help or sharing my emotions with others. I wait until I’m worn out and defeated to take care of myself.

If you relate to this in any way, listen carefully – don’t be like me. Don’t wait until you are so worn out and battered to start making time for yourself. Ask for help, share your heart with the people who love you and stop burying those emotions deep down. I promise if you do, that weight on your back will only get harder to carry.

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