Blog · November 29, 2015


A lot of people often ask me how I cope and how I move forward every day.
The answer is… if my son can cope and endure, who am I to complain?

The backstory of the quote below from my book “Butterfly Child” is an event that stayed with me and I always think about. Nicky was 5 years old, in kindergarten. Walking into the classroom after recess, he tripped on the mat and fell head first into it. The teacher called me in a panic. I flew to my son, and when I saw him my heart sank.

Oh. My. God.MVC-202F copy

All the children in his classroom were quiet and speechless, as was his aide. I often wonder what they learned that day. I took Nicky to the bathroom and soothed him, while I gave him some pain meds. I hugged him and told him how much I loved him. After a period of crying he said he felt better and I told him I was going to take him home. He said no. He didn’t want to leave. He wanted to finish out the day. I was incredulous.

If this does not describe Nicky’s resilience I don’t know what can. As a mom though, my heart cried a million tears that day. I still shiver and get teary eyed thinking about it as I write this.

How much I hate RDEB? Let me count the ways. The horrors of RDEB have left me speechless and in tears more times than I can count.

~~~ was talking to my mom & dad a week or so ago, as I do every Saturday, and I asked them what TV shows they watch. I know they love their soccer games (they are Italians, what can I say?) and one of their favorite shows is “Criminal Minds”, but they told me they do not watch much TV. I wish I could say the same, I told them I watch way, way, way too much TV. I don’t know if this is my coping mechanism, to escape, to think of something else or what.

In many ways I am trapped at home. I cannot really leave Nicky alone more than 2-3 hours at best, and I try not to leave him alone, ever, if I can help it. It takes a great deal out of him to go anywhere, so if I gotta run errands, I do them without him unless he says he wants to come, which is a rare occurrence. It takes a lot of effort for him to even just “transfer” into the car and it usually results in blisters on his feet, so he opts out. He’s always been a kid that prefers self-preservation, so that’s how it is. He can’t really get himself even water out of the fridge by himself, so my biggest worry is if an emergency arises while he’s home alone, it would be extremely hard for him to get out of the house. We have a couple of cameras in the house so I can watch him from my phone if I ever leave him alone too, just for my peace of mind for this super-worried mom. The great thing is that Connor, now 12, is old enough to be home alone with Nicky, so nowadays I feel more comfortable running errands if Connor is home with Nicky. I always try to hurry anyway.

So… it’s no wonder I watch so much TV. And movies. And I read a lot too. They are my escape. For that hour or two I don’t think about anything else. I don’t worry about the future, I don’t think about the wounds I just saw, I can just be transported elsewhere on a different reality. Otherwise, like I am doing now, I write. I want people to know RDEB. I want people to know how horrible this condition is. I want people to know that when we say it’s the worst disorder they never heard of, we say it because it’s true. And I also want people to know how much the future scares me. Nicky is far worse than I ever imagined he would be when he was little and it kills me. IT KILLS ME.

So, if I watch too much TV, don’t think it’s because I would not rather have a great career, friends, or a house on the beach. I would love all of that. But in this lifetime, my purpose is my son. My purpose is to raise awareness for this awful thing we live with every day. Only with awareness funds can be raised for a cure. Because there is still hope in my heart.

Love & Light,