Today I felt terrible guilt at my own reaction of happiness.
My little 1.5 year old had a bad day. With Dystonia a bad day is debilitating pain. It means that he can barely take one sep without face planting, or stand without falling. It means watching him hurt so bad he bites himself leaving teeth marks up and down his arms. Days like this result in broken teeth, black eyes, and skinned foreheads. It means they could have so many self inflicted bumps and bruises that I’m actually afraid to take them out. I don’t want people to think I’m hurting them. You see, with dystonia, they can’t usually catch themselves as their arms and hands are in a locked spam. All I can do I watch my boys hit the floor. Over and over again.
Sure, I hold them, put a movie on, I wear the little one in a carrier, I sit on the floor and play ground level games. I tell them to let me know what they need so they can sit while I get up and get it. But, they are toddlers, and at some point one of them will get up and chase the cat, or go to the bathroom, or walk to the sink to get a sip of water. And there is a chance they will fall. Sometimes they do, and sometimes they don’t. Days like this mean I find myself holding my breath, forgetting to breath.
Today was the baby’s bad day and it seemed like his whole body had stopped taking orders from him. He was frustrated. All he wanted to do was put two Legos together, and his hands were failing him.
My 4 year old got to his crying brother before I did. “It’s ok baby” he said. He put his arm around his little brother and said “sometimes hands just don’t work. You have to wait. They will work again soon”. The baby looked at his big brother and said a long and exaggerated “oooooooh”. Together they sat and waited for the spasm to end, and then my little duo built Lego towers together.
In this short little interaction I felt a flood of emotions. Pride was first. I was so proud at my oldest son’s compassion, and empathy. I was sad that he knew what pain looked like and had the first hand experience to know how it was going to play out. I was heart broken to see such a little helpless person confused and betrayed by his own body. But, my strongest feeling was guilt.
Guilt because I was happy they had each other. I was happy at the thought that when one of them comes home from school feeling isolated and alone, his brother will be there, and he will understand. I was happy that they know how to comfort and relate to one another. I was happy that the bonds of brotherhood have taken such a deep stronghold so early on in their lives. I was guilt ridden that my happiness over their unique little relationship meant that they both had the disorder. I feel guilty that I’m happy they have someone to relate to, when relating means the other brother has to also know pain. I love their bond, but I hate the caveat that comes with it. I feel bad because I don’t want either of them to suffer, not for an instant. And yet, here I am, happy that if one of them has to have Dystonia, he’ll have the other to relate to.