I love it when people ask how we are. I love it when they ask about my kids. I like being able to share what’s really going on in my life, it makes me feel loved. I’m an honest person who has always had trouble hiding my emotions. I’m the type of person that doesn’t know how to be anything but genuine. When someone asks me how I’m doing, I won’t say “fine” if I’m not. I don’t always want to talk about my difficulties, but when I do, it’s crucial I have someone in my life that will listen.
As a mom with two sons who suffer from a degenerative disease, I often feel like I live in a completely different world than everyone else. Isolation is a common part of living in this world of special needs. When you don’t feel like others will understand what you go through, you tend to keep things inside. I’ve learned the hard way that when you bottle up those emotions, it weighs you down and makes it even harder to bear.
Since my boys’ diagnosis, I’ve realized that there are two different kinds of people who ask how we are doing. The first is the one who is afraid to bring it up. Maybe they think it may upset us more or bring up a subject that we are trying not to think about, but let me assure you, Duchenne is always on our minds whether you bring it up or not.
Some may not ask because it’s too difficult for them to hear about, it makes them sad, and they would rather stick to positive conversation. I understand that, but I also must warn you that you will never truly have a piece of our hearts if you don’t understand that side of our lives. Within the tough details of our days are beautiful moments. Within the suffering you hear us talk about, are stories that can take your breath away. If you’re willing to listen to the hard stuff, you get to be part of the triumphs too. You enter our world when you listen.
My favorite kind of movies are the ones that make me want to be a better person. The type of film that leaves me inspired and encouraged to grow as a human. The ones that leave me with a greater perspective on life. Those movies usually include deep suffering, hardships, and trials, but it’s the ending that always leaves me inspired. That’s because life is not inspiring without pain, kindness is not moving without hate, and love is not meaningful without sacrifice.
Most of our difficult moments involving Duchenne are followed by stunning moments. Have you ever had to tell your nine year old that eventually he will not be able to walk, only to have him bravely reply with a comment that sends chills down your spine. “There’s still plenty to do in my wheelchair mama.” Have you ever had to rush your six-year-old to the hospital with a broken and partially severed finger, only to leave the hospital hours later with multiple stitches, a cast, and an inspiring son who simply says one thing on the drive home? “I’m just grateful I get to keep my finger.”
Every day I have moments like this. My life is one of those movies I’m inspired by. It’s full of pain, suffering, and trials, but it’s also deeply drenched in love, kindness, and sacrifice. Every single day I’m inspired to be a better person just by living out my story. My situation, my suffering, and my incredible children inspire me. I witness courage, love, and kindness every day. Sometimes we face painful moments, but they always lead to strength. If my life is too hard for someone to hear about, I understand that, I truly do, but please understand what you will miss out on. You can’t rejoice with us in our victories if you don’t weep with us in our trials.
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.
Recently, I had a friend ask how my boys are doing. She knows my oldest son has become weaker recently and has started to need my help with more things, like rolling over in bed. I shared with her that I was struggling. I told her that some days I feel strong and other days I feel like throwing myself a pity party. Her reply was simple yet more powerful than she may have realized. She said, “You’re doing good, and it’s always okay to not be okay.”
Special needs moms are so hard on themselves. We go to bed focused on the things we didn’t accomplish or the times we weren’t as patient as we should’ve been. We cry in the shower to hide our weaknesses from the world. We get up each day and put on our strong face as if emotions are something to be ashamed of. We think that if we don’t remain strong every waking hour, then we must be failures. When someone says something as simple as “it’s okay to not be okay,” it frees us. Suddenly we remember that not only are we human, but we are also allowed to have a tough day. It gives us permission to feel how we feel. After all, weakness doesn’t make you a failure, it makes you a warrior. Strength is defined by what you overcome, and we overcome so much.
My mom is constantly asking not just about my children, but about my heart, my strength, and my sanity. She sits alongside me in my sorrow and my victories. My friends and family ask me questions, not just about the boys’ struggles but about how I’m handling the emotions that come with those struggles. My Bible study group listens to my story with the sole intention to understand and support me. That kind of selfless compassion is what reminds me of God’s faithfulness. The kindness of others is what helps my hurting heart on the hard days.
So thank you to the ones that ask. Thank you for thinking of us, praying for us, and asking us how we are doing. Thank you for caring enough to inquire about our real, raw, and sometimes painful life. Thank you for trying to understand our world. Thank you for the support. It may seem like a simple thing to do, but it’s not. When you ask, it gives us permission to be ourselves. It removes the elephant in the room and allows us to share our hearts with you. Thank you for setting aside your emotions to help us carry ours, it means more than you know.
Thank you for asking.