What I Wish You Knew

As a Duchenne parent, there is so much that I wish other people knew. There are so many misconceptions and incorrect assumptions that make life even harder for someone like me. Most people in my life are incredibly loving, supportive, and understanding. Their presence means the world to me, but there are moments I wish I could make things a bit clearer for the rest of the world.

If you don’t understand Duchenne, you will never understand me.

My life is not a typical one, and Duchenne is a huge part of it. If someone in my life doesn’t take the time to learn a little bit about my sons’ disease, it’s hard for me to confide in them. It’s hard to be yourself around someone you feel doesn’t understand your life at all. I would never expect anyone to discuss exon skipping or scientific research with me. I just need you to have a basic understanding of the progression of the disease. If you do, it’s a whole lot easier to be myself with you.

I’m not judging you.

Many times, during conversations with friends and family, they’ll start venting to me about something and then stop mid-sentence, “Oh, this must sound so trivial to you.” I just smile and shake my head no. I know my circumstances are incredibly hard, and if someone was comparing my life to theirs in an ignorant way, I might feel that way, but that’s rarely ever the case. Listen, friends – I want to be there for you too. I want to listen to you vent because you do the same for me. I want to encourage you like you encourage me. Also, I am no saint; I get upset over small trivial things that I know do not matter. We all suffer, we are all human, and I would never scoff at someone else’s struggles.

You don’t have to walk on eggshells.

I can see the conversation shift when I walk over. I know you feel awkward talking about taking your kids hiking or going to the park. It’s okay; I’m not going to start crying because you’ve reminded me of something my boys can’t do. I already know that the world is different for us. You’re not reminding me that my boys have this disease; it’s always on my mind. It’s not brand-new information, and I am in no way offended by your activities. There is no need to walk on eggshells around me.

If I share my struggles with you, you are very important to me.

It’s not easy for a mom like me to open up. My days are a constant combination of joy and sorrow. So, if I share my trials with you, you are very special to me. It means I trust you enough to be vulnerable. It means that I don’t feel judged by you. I hope you will take it as a compliment if I lament to you because it’s not an easy thing for me to do with just anyone.

There are no perfect words.

A few of my close friends have admitted to me that they worry about saying the wrong thing to me. When I’m talking to them or venting to them about something I’m going through, they struggle to find the right words to say to comfort me. I understand, and honestly, I think it’s incredibly sweet that it’s even something they worry about. To tell you the truth, I wouldn’t know what to say either. I don’t always know how to comfort another Duchenne mom when they need a listening ear. There are no perfect words to say to anyone who is suffering; all you can really do is be there. Offer them love, friendship, support, and understanding. They don’t need the right words. They just need to know they’re not alone.

Don’t tell me how to feel.

The worst thing you could do for someone like me is to tell me how to feel. When I’m having a hard day, resist the urge to tell me how I should be feeling. Even if you’re a fellow Duchenne parent, I feel how I feel. We are all dealing with things at different times and in different ways. All I could ever hope for, is that my friends will listen with empathy and love me even when I’m unable to love myself. It’s like one of my favorite quotes portrays beautifully. “When you can’t look at the bright side, I will sit with you in the dark.” So, to my friends that know more than just my smile, to the ones that I share my brokenness with too – you are more important to me than you will ever know. Thank you for sitting with me in the dark.