Don’t Look Back
As a Duchenne mom it’s no surprise that hard moments cross my path each day. Sometimes I’m triggered by obvious things like noticing a new struggle or loss of an ability. Those things require a certain amount of grief and time to accept. Other times, I get emotional looking at old family photos or videos. It just feels like a different life and it hurts to think about. It’s the things that sneak up on me that surprise me. The thoughts that seem to come at random and take the air right out of my lungs.
These thoughts crash through my mind like heavy waves.
This may seem odd to some, but this one thought triggers me in ways I have a hard time explaining. My boys walked until the age of 9 and 10. I remember going on walks, dancing in the living room, climbing with them on the playground and so much more. I know those things happened and I remember them well, so I’m not sure why this thought haunts me the way it does, but I hate that I can’t remember what it felt like to watch them walk. I desperately want to see it in my mind. I want to remember what it felt like.
I can’t remember the way it felt to watch my boys come into the kitchen and say, “Good morning mama.” It may sound weird that I want to remember a feeling, but I can’t help it. I fear I took it for granted. I fear I didn’t cherish it enough. I didn’t expect it to disappear so quickly.
Did I cherish our days enough before I knew they had Duchenne? What if I had done something different? How could I not know? Obviously, I know that these thoughts are useless and not logical, but we all know how emotions can cloud our logic.
I just didn’t know they’d stop walking so young.
They were diagnosed at six and eight years old and non-ambulatory by nine and ten. How is that possible? It’s unnatural to watch your children gain abilities, then suddenly stop and watch Duchenne reverse everything. It’s strange and cruel. You watch them grow and gain abilities. You applaud milestones only to watch those very abilities and milestones disappear right before your eyes.
I saw a quote on social media the other day that has stayed with me. It said, “Don’t look back, you’re not going that way.” This quote could have so many meanings to so many people depending on what they’re going through. For me, it made me realize that I spend too much time in the past. If all I have left is forward, then why do I keep looking back and wondering how I could’ve done things differently? The only path in front of me is the one heading towards the future. Yes, that path may be difficult, but I’m also confident it will hold incredible moments of joy too. There are days left to live, life left to cherish and love left to give.
Pain brings perspective.
Pain doesn’t change the beautiful parts of our lives; it actually intensifies the good stuff. I wouldn’t want to go back to being who I was before Duchenne entered my life. Life was definitely easier, but my perspective was so different. Suffering has changed me. Life is now deeper, more emotional, more beautiful and incredibly full. Of course, I still get irritated with trivial stuff, we all do, but that perspective I’ve gained snaps my lens back into focus pretty quickly when I get off track.
Duchenne changes you.
When you learn that your child’s days are limited it changes the way you think, breath, love and live. Nothing is ever the same again. You are now a caregiver to your precious child. That alone gives you a deeper relationship, the hard stuff only intensifies that relationship. At the end of the day, I know that the fact that my child can’t walk does not define him. What defines my boys is their beautiful hearts, their breathtaking faith, and their amazing attitudes towards life.
Look ahead, the view is beautiful.
I keep looking backwards at the things that pain me, but maybe I should be noticing all the hurdles we’ve overcome instead. Maybe I should be more focused on the road ahead. When my boys were diagnosed, I felt like life was over, but now I know that was just the beginning of a new life – the one we were always meant to have. I’m all too aware that our story may end with pain and suffering, but that doesn’t mean we just give up. We may think the ending is what matters, but let me tell you life is not about the beginning or the end, it’s about the journey in between. Once you start viewing life from that lens, you start looking forward with hope again.
2 thoughts on “Don’t Look Back”
Thanks for sharing your journey. I have only met your sons once. But believe me we love all of you so very much.
We love you and your wife! You’ve been such a sweet support to Cole. Your kindness has been a blessing.