Sometimes I feel like that poor little kitten in that famous poster. “Hang in there,” it reads, as the sweet little kitty tries to grasp that tree branch with all its might. Apparently, this poster is supposed to be motivational. I see it more as a reminder of how hard life is, especially as a Duchenne parent. It reminds me how isolating this life can be, and it makes me realize just how important it is to have support from others who truly understand.
I’d like to remake this poster to reflect what should happen when we go through tough times. Instead of a line reading hang in there as the kitten holds on for dear life, how about another kitten climbs up the tree and helps him? How about a group of cats come together to pull up the struggling kitten? Now that would be motivational. That would be an encouraging poster. Instead of a passive message to “hang on,” it could send a message to find support amidst your struggles.
When my boys were first diagnosed, I felt lost. My husband was the only one who truly fathomed what I was going through. Family and friends tried desperately to comfort us and show us love, but I still somehow felt a sense of isolation. The world around me was still the same, but it wasn’t made for us anymore. It was suddenly unfamiliar and full of obstacles.
Depression, anxiety, and fear took over those first few months, and I wasn’t much fun to be around. I cuddled my kids, trying to soak in every second. I stared at them in disbelief that someone so perfect could have a degenerative disease. I tried to hold it together during the day so others could tolerate my presence, but the tears showed up every night, soaking my pillow like clockwork.
I felt like people who asked how we were doing didn’t actually want to know. I started joining communities online for Duchenne parents, searching for people who knew what I was going through. I found so many!
Suddenly, I knew what it felt like to be understood. They weren’t just slugging my arm and telling me to buck up; they were holding out their hands in solidarity. They were lovingly offering their support, advice, and comradery. They weren’t changing the subject or making me feel strange for feeling a certain way. They were pulling me up without hesitation.
I asked questions, found resources, and made friends with moms that had been walking in my shoes for much longer than I had. I still struggled, but they helped me realize that I wasn’t the only one going through this. I read other people’s stories, questions, and answers like a how-to manual. I realized we weren’t alone as Duchenne parents; we were part of a powerful community of warriors.
They knew what it felt like to get that life-changing call. They’d cried the same tears, had the same fears, and struggled with the same things that we had struggled with. I remember a few moms telling me that someday I’d be on the other end of the conversation, that I’d be the one offering encouragement and support to other rare disease parents. I never thought I’d be strong enough to play that role, yet here I am by the grace of God writing about my journey, hoping it will help someone else.
I feel so honored to be a part of such an amazing community of people. I’m grateful for their wisdom, kindness, patience, and endless encouragement. When I ask a question, I have dozens of responses in a matter of minutes. If I just want to vent, I have a list a mile long of fellow parents willing to listen.
Some people in this community don’t have any supportive family or friends that help them cope; thankfully, we don’t fall into the category. We’ve been very blessed with amazing friends and family that stand by us at every turn. The Duchenne community has now become part of that support system, and they will always hold a special place in my heart.
If you’re a veteran of this wonderful community of parents, thank you from the bottom of my heart for helping me find my way. The weight of rare disease is a heavyweight to carry, but when I seek the comfort of parents who know exactly what we are going through – it feels just a little lighter.
If you’re new to the Duchenne community, welcome. I hope you find support here. I hope that when you feel like letting go of that branch, you instead remember to reach out to the ones that know what it’s like to walk this path.
We get it. We understand. We see you. So instead of struggling to hold on, like that sweet little kitten, come to a place of refuge where everyone understands you. We will listen, support, and walk you through this journey until one day you can be the one to lift up others. Hang on, but don’t do it alone.