“I have never had a day with no pain and it is almost torture to watch people do things that I know I can’t.” ~Sohana Collins (https://www.cure-eb.org/)
This sweet and heartbreaking quote from a girl with EB touched me more than words can say. After I retweeted it, I asked Nicky if that’s how he felt too, assuming he would say something along the lines of “obviously”, but he said “No”.
“No? What?” I was a little shocked to be honest. For some whatever reason I was always under the impression that Nicky was in pain 24/7. I always felt it was torture for him to just sit there while others did things, including his brother. I also never ate in front of him because I knew he loved food and not being able to eat it… you know… I try not to do it unless there is no choice in the matter. I don’t want to be cruel. I don’t want to torture him.
But Nicky’s mindset about life is always evolving. What might have been true years ago, is no longer. I’ve learned along the way that I should never assume things where Nicky is concerned.
“As long as I have my good pain meds and I am wrapped properly, I am not in pain”-“Distractions helps.” He added.
“But”, I asked him, “While you’re not in pain 24/7, would you say you feel at least some pain every day?”
“Of course”, he said. “Especially during gauze changes”.
Sigh.
But, of course, that might be what Sohana meant as well. “Not a day with no pain” doesn’t necessarily mean she’s in pain 24/7 either. Pain meds are a God-sent. Without them, where would EB patients be? I cannot even go there. Seriously.
“What about watching people do-or eat-things that you know you cannot?” I inquired further. “I remember when you were in kindergarten and how upset you were that kids could fall and not get hurt and run and jump and go down the slide and you could not”.
“I just don’t think about it-at all.” He said.
Conversations with Nicky are always illuminating. This is why I am working on compiling a series of questions that I can ask him and then publish the answers in book format. People that live lives that people from the outside would consider a nightmare have a different prospective in life that I feel needs to be shared. I am as close to my son as anybody and I am still learning every day. Working on this book will give me some sort of testament we can all learn from.
Having a child with a rare disorder is messy and vulnerable work. It has forced me to dig deep in my soul more than I ever imagined. My son constantly shatters my perceptions of reality and what life is supposed to be. The only thing I know for sure is that I have so much to learn and I will never be done. Nicky reminds me every day not to take myself and our lives so seriously. He gives me the inspiration to keep moving forward and to never give up. I’m not saying it’s easy or that it isn’t full of emotions and worrying. It’s most definitely a roller coaster ride. I can never say life is boring, that’s for sure.
This is my life’s work. For myself. For my son. And for others.
Love & Light,
