Every day is full of beautiful moments of joy and gratitude, but every day is also full of moments of sorrow and fear. Every Duchenne parent is familiar with this painful paradox. It’s just a part of what it feels like to have a child with a degenerative disease. We rejoice with them daily, but we also mourn with them through the difficulties they face. Sometimes at the exact same time.
For example, on Halloween this year, we had a wonderful night. It was such a fun night full of laughter and happy memories. We spent it with family who we love and enjoy being around, but that doesn’t mean that there weren’t hard moments too. There were moments of fun, but there were also moments of sorrow. No one saw him, but my youngest son felt overwhelmed and cried to me privately that night. He had a great time, but he also had a moment of sadness he needed to get out.
My thoughtful sister and brother-in-law bought an inflatable tunnel for them to ride their chairs through. It was a beautiful sentiment, and they loved riding around with their cousins. Even still, there was a bit of sadness when my oldest son attempted to ride in his cousin’s ride-on toy, and his leg was too weak to push the pedal down. Thankfully his sister drove it for him, but you could tell he was crushed. It was one more thing he can no longer do.
That night will forever hold happy memories for us, but that never prevents the hard moments that intertwine among the joyful times. Every day is like that. Duchenne forces impossible obstacles, complex emotions, and so many ups and downs. Duchenne life is truly a roller coaster ride full of so many things that no one should have to deal with.
When my boys got their first powerchairs, I felt immense joy as they sped around the cul-de-sac racing together, but I also felt like someone had punched me in the stomach. How did we get here so fast? I wondered. When we got our mobility van, I felt intense gratitude for our new purchase, but I also felt overwhelming anxiety. Thoughts raced through my head about how I would possibly handle driving such a large vehicle, let alone safely getting both boys’ powerchairs in and out every time we go somewhere.
When my son lost his ability to walk, we were obviously devastated, but there were somehow beautiful moments in the darkness too. Moments of love and comfort would shine through the fog and remind us of the rainbow that always shows up after a storm. I’ve realized this is just the pattern of life with Duchenne.
The important thing is where we place our focus. We can focus on the pain, or we can focus on the joy. Truthfully, some days I am consumed by the difficulties we face. Depression and anxiety take over, and all I can see are the struggles. I’m human, I’m fragile, and I’m not afraid to admit that to anyone. Some days I fall apart. Somedays, I struggle to get out of bed and focus on the good. That’s okay because most of my days are not like that. Most days, my heart is full of gratitude, love, and beauty.
Parents often encourage each other with phrases that I myself have said to others. “Live in the moment.” “One day at a time.” “Focus on the good things in life.” These are all helpful phrases that can be encouraging at times, but they can also be a recipe for failure. They can cause you to guilt yourself for every failure, and they can bring about impossible expectations. These well-meaning quotes can drive us crazy if we aren’t careful.
When my boys were first diagnosed, I was fiercely determined to live every day to the fullest. I wanted every moment to be full of joy, laughter, and happy memories. I wanted to give my children the perfect childhood. I quickly learned that I was placing way too much pressure on myself to be something I could never be – perfect. Every time I raised my voice or failed as a mom, I made myself sick with guilt. I put such high and impossible expectations on myself that I began to feel like a constant failure. I was forgetting one major thing – grace.
There is no perfect day. There are no perfect parents. Every parent knows this truth, yet we push ourselves so hard. Duchenne adds so much stress to our days, and I don’t want to add more by putting impossible expectations on myself. I’ve learned over the past two years to embrace the ups and the downs. Without the hard days, the good days wouldn’t be as sweet. Without the painful moments that bring tears to my eyes, I wouldn’t treasure the moments that overwhelm me with love the same way. Life is about the good and bad moments that come our way.
I still try so hard not to take anything for granted, but now I try to do it with grace. I remind myself that perfection is not my goal; effort is. My goal is to simply try my best to make sure we have a lot more good moments than bad. My goal is to do everything in my power to love and enjoy my family unconditionally. I want to cherish the good moments, learn from the bad ones, and give myself grace for the failures.
A wise person once said, “In the end, it’s not the years in your life that count. It’s the life in your years.” I can’t guarantee my life won’t include pain, sorrow, and heartache, but I know for sure that it will include wonderful memories. I know, without a doubt, it will be full of endless amounts of love, laughter, and joy. I know that our years will be completely, beautifully, memorably, and utterly full of life.