I would like to share a message from a dear friend who has two sons with Duchennes. This is why it is so important to work every day towards finding a cure for diseases that impact children.
Today is September 7th, World Duchenne Muscular Dystrophy Awareness Day. Today, like every day, I put toothpaste on Jake’s automatic toothbrush, hand it to him, turn on the faucet, get his glass of water ready, and hand him a towel when he is finished for his face. Later, I will find his toothbrush here on the sink because his arms don’t have the strength to return it to the toothbrush holder.
Today, I want to increase awareness about what our boys go through socially. My hope is that you will share this with the children in your lives, and increase their compassion and courage in coming to know people with Duchenne fully. These examples are in no way unique to my boys. They are in no way unique to this year. This is a glimpse into the defenses our children build, the hopes they have, the conversations they share at home. There is room here for you to be a catalyst.
My younger son, Ryan started middle school (6th grade) this year. There is a plan in place for him to navigate the hallways before they are busy because he does not have the best balance. However, this doesn’t always happen. He shared that he was pushed over by a mean kid on the second day. He was also asked if he ‘wanted to race?’ In reference to his walking slowly and awkwardly. Yesterday he told me that a kid told him he was ‘dead inside.’ Over the years our responses to these things have evolved. Ryan called the ‘dead inside’ kid a butt. He has asked me what to say – sometimes my response is ‘Go to hell.’ I may end up in the principal’s office. Often we talk about how normal, emotionally healthy kids don’t have a need to hurt other people. It doesn’t undo the hurt.
A couple of weeks ago Jake attended an orientation for something outside of school. When they broke for lunch, he went to sit at one lunch table. All the other kids sat at the other tables. The adults saw this happen, and came to sit with him, trying to compensate. I was there, and took a deep breath. These kids don’t know Jake not to like him. They are afraid, or uncomfortable. It takes courage to go sit with someone in a wheelchair. That child in the wheelchair experiences every emotion that each of us do. He wants to be connected despite his failing muscles. I will sometimes hear Jake express hatred for his ‘stupid body.’ Imagine being in that stupid body. Now imagine navigating the perils of childhood or adolescence on top of it.
This year, on World Duchenne Awareness Day, I have a very bold and specific request. I am asking you to talk with the young people in your life about this post. Share it. Let them read it. Talk about it. Talk to me about it. Talk to Jake and Ryan about it. I am convinced we can do more with compassion in this world. I am convinced that as a human being, and in my role as mother to these incredible human beings, I am meant to communicate this with resolve and purpose for all of us in our humanity today.♡