I’m a good mom, but I don’t always feel like one. Every day I do so many things for my children that I’m proud of, but by the end of the day, my thoughts always seem to shift to where I fell short. I use every ounce of my energy to care for my family. I accomplish more in one day than some probably get done in a week, and yet, I go to bed focused on my failures. I close my eyes, wondering what I could’ve done better. I’m constantly wondering if I did enough, and it’s exhausting.
Most moms know this feeling well. We can do a million things right, but at the end of the day, we are somehow focused on the one thing we did wrong. As a Duchenne mom, this guilt can multiply very quickly. There are therapies to remember, stretching to get done, and medications to administer. It can be overwhelming trying to get it all done, to say the least.
The questions that swirl around in my head at night are deafening sometimes. Did I forget anything? Did I hold that stretch long enough? Was I patient enough, encouraging enough, or kind enough? It’s pretty common for parents to question whether or not they’re doing the best they can for their children. If you’ve never felt this type of guilt, you’re probably not a parent. I think that Duchenne parents experience even more guilt because we tend to put so much pressure on ourselves to make sure our families live each day to the fullest.
When someone compliments my strength as a special needs mother, I smile, but inside I’m secretly thinking about all my weaknesses. I’ve learned what a bad habit this is, and it’s something that I’m determined to change. I want to be the type of person that says thank you when someone compliments me, not the person who immediately corrects them with a list of reasons why I’m not good enough.
I want to go to bed and smile when I think about all that I accomplished that day. I want to breathe a sigh of relief that I made it through the day with strength and grace. I want my focus to be on my victories, not my failures.
I remember rocking my babies to sleep when they were little. I’d sit singing a lullaby, watching the sunrise, and praying for enough energy to make it through the day. I was exhausted, drained, and totally overwhelmed by the number of things I had to accomplish each day – and yet I’d give anything to go back and do it all over again. I’d give anything to sit down and peacefully hold my sweet babies again. I don’t remember the sleep deprivation or the stress; I remember the warmth of my baby resting peacefully on my chest. I remember the parts I did right and the moments that made me smile.
My kids may not be babies anymore, but I have a feeling that someday I will look back in a similar way and wish I could return to today. I won’t remember the mistakes I made, but I will most certainly remember the millions of moments of joy. I won’t focus on the moments I failed to do everything perfectly, so why do I do that now?
One day I will remember my son happily describing the details of his newest video game. I will remember my daughter saying something hilarious or climbing up on my lap just to cuddle. I will remember the good parts of my days. I’ll remember the family movie nights, the hugs, the experiences, and the memories we made.
Right now, I hear “mom” a million times each day, and sometimes I cringe because “I just sat down,” but deep down, I know that someday I will desperately miss being needed so much. I will miss the chaos. I want to cherish my days, not diminish their beauty by only focusing on the hard parts.
Duchenne is a devastating disease, and knowing that it affects both of my son’s life spans is an unbearable thought. Still, I know I can’t change the diagnosis, no matter how hard I try. I can’t control how this life plays out. The only thing I can control is where I place my focus, and I’m determined to focus on the love, the laughter, and the joy. The good will always outweigh the bad if I focus on my blessings, my faith, my purpose, and the millions of beautiful moments that I share with my children each day.
Take it from me, don’t waste precious time thinking about your mistakes. Stop thinking about all the things you could’ve done better and think about the things you did well. Close your eyes at the end of the night, and focus on a moment that makes you smile. Go to bed, proud of your accomplishments. Set your focus on the good and end your days with one simple thought in mind, you are enough.