Two months before my sons were diagnosed with Duchenne muscular dystrophy, my older brother died unexpectedly. It was a tragic shock that sent my family and me into a tailspin of grief. I became very familiar with the stages of grief as I went through each one, over and over again. It was one of the hardest times of my life.
When my boys were diagnosed with Duchenne, grief showed up again in a whole new way. I was sent spiraling back into a sea of confusion, fear, and sorrow. All those same emotions I felt when my brother died flooded right back in. Shock, denial, anger, bargaining, and eventually, acceptance came into my life with a vengeance. I didn’t realize that grief was not just a part of dealing with loss, but also change. My life changed that day, so of course, I had to grieve my old life.
That time in my life not only changed me, but it prepared me. Each new obstacle this disease has brought us usually brings those familiar stages right along with it. I think it’s important that my boys understand those emotions too, and that whatever they feel along this journey is a normal part of getting to a place of acceptance. Grief is a bumpy road, but eventually, it does lead to acceptance, and I believe that makes navigating the difficult terrain worth the journey.
Both of my sons have Duchenne, but they deal with its presence in different ways. My youngest son is very sensitive and emotional. If he falls, he wants instant comfort and affection. He cries, hugs me, and then moves on from it quickly. If my oldest son falls down however, he gets mad. He gets angry that his body won’t do what he wants it to. He rarely cries, so anger is what we usually see when he is upset.
I’ve actually trained myself to view anger from our boys as a cry for help. I see it as a call to show compassion and to focus on connection. I used to see it as disrespect, but now I just see a hurting little boy who doesn’t know how to handle the big emotions he’s been forced to deal with.
I remember one night, about a year ago, my oldest was having a meltdown. He was angry and started throwing toys all around his room and at me. I tried everything to get through to him, but nothing seemed to calm him down. Finally, I dropped to my knees in tears in the middle of his room and prayed out loud. He yelled at me to stop. I honestly expected to get knocked in the head with a flying toy, but thankfully he miraculously stopped yelling. By the time I opened my eyes, he was curled up in my lap, crying. “I don’t even know why I’m so mad, mama,” he said.
His anger is much better these days for various reasons. He’s not on steroids anymore, which seems to have helped with the anger, but lately, he’s been struggling in other ways emotionally as well as physically. He is very close to losing his ability to walk. We encourage him to use his power chair to play and have the same independence, but he’s just not ready to commit to such a big change. He doesn’t like attention, so rolling around in a large power chair is hard for him outside of our house. He will get there, but I won’t force him.
The other night he was in his room watching TV. He’d been kind of distant and irritated that day, so he went to lay down. I came in to bring him a snack since he didn’t eat much dinner, but he yelled at me. I guess I didn’t bring what he’d asked me for. Normally he’s very grateful whenever we bring him anything, so this was unlike him. He yelled that I don’t listen to him. I didn’t yell back. I just quietly turned around and left, hiding my teary eyes.
I knew it wasn’t about the snack. It was about one more thing he couldn’t control, one more thing he couldn’t do for himself. It was about anticipating a future that forced him to rely on others. I’d been trying to talk to him all week about what he was going through, but he just wasn’t ready to talk. I’m a firm believer that if you don’t deal with emotions as they come, they bottle up and eventually explode, but you can’t force someone to talk if they aren’t ready.
When I came back to his room that night, he was crying. “I’m so sorry, mom,” he said softly. He never cries, so I rushed over to hug him. As I held him, I couldn’t help but cry too. As any parent knows, it’s incredibly hard to watch your child suffer. We cried, talked, and prayed together. I know we both felt a huge sense of relief afterward. He even told me he felt better as I said goodnight.
Since that night, he is trying not to let his feelings get bottled up. He is still dealing with the stages of grief because, as we can all agree, losing the ability to walk is an incredibly difficult thing for anyone to go through. If someone is injured in an accident and loses a limb, doctors would be focused on counseling as part of his treatment. They would talk about the process of grieving the loss of that limb. It’s an important part of the healing process. Duchenne is no different, our boys need to grieve the losses and changes that this disease brings.
I explained the stages of grief to my son, and I believe it helped. I think he was comforted to know that he wasn’t alone in his feelings. I want both my boys to understand that there is nothing wrong with them for struggling or crying. There is nothing wrong with being angry, as long as they don’t take it out on others.
After I explained each stage, he asked me one single question that immediately brought tears to my eyes. “When is the depression stage over,” he asked. As someone who suffers from depression myself, I didn’t know how to answer that, so I just told him the truth. I told him that sometimes these stages show up at random, but like a rollercoaster, in between the hard days, there are really good days too.
There is no parenting manual for Duchenne parents. There are no perfect words to say that will take away the heavy emotions that come with this disease. All we can do is walk alongside them at their pace. Sometimes that means encouraging them to do hard things. Sometimes that means just listening, and sometimes that means letting them be angry, bitter, and frustrated. They won’t stay mad forever, so just love them right where they are. Being afraid or angry doesn’t change the fact that they are brave fighters, and all warriors deal with fear. I think Nelson Mandela said it best when he said, “I learned that courage was not the absence of fear, but the triumph over it.”