Blog · May 3, 2018

Live In Your Truth

It seems like more than ever, in our connected society, everyone is hell bent in convincing everybody else that “their” way of thinking is better. Their way of doing things is better. Their beliefs are more important or more true than what another may hold. This feels almost as a confidence exercise, a way to elevate themselves and claim superiority and the more people they “recruit” to their way of thinking or doing, the better. Using hate to achieve this has reached a new low. Just look at our President’s tweets. Ugh.

But this not just true about politics, it’s true about anything in life.

A few years ago, a woman told me that my son Nicky most likely didn’t want to be an inspiration. She told me this while she forwarded me a video of a disabled woman whose worse thing in her life, she claimed, was to be called “inspirational”. Ok, I said to myself, I took the bait. I had Nicky watch such video. Only 10 minutes in, he told me to turn it off. “I don’t like it all”, he said. “It’s not who I am, not how I think at all”.

In an effort to “find” the right message for him, keeping in mind that the way women and men think differently about their struggles in life, I then went ahead and watched a video that Nick Vujicic had sent Nicky, along with his books, when he saw Nicky on TV and he absolutely LOVED IT. We later met him at an event in Ventura. He is amazing and inspirational and that’s how he wants to be because he knows people need his message. Nicky surely did.

I’ve said it before, and I’ve said it again, everyone is different, everyone has their own truth they live by. Just because one has the same diagnosis, that doesn’t mean they feel the same way about their life or take care of their bodies the same way. We do what we do the way we do it because we’ve tried everything else. It hurts when others judge our decisions. Let’s face it, we can’t please everyone. It’s an impossible task to live up to the expectations of someone who will end up judging us regardless of what we do. When we allow the judgments of others to affect what we do and how we do it, nobody wins. We don’t win, and the other person certainly doesn’t win. Over the years we’ve developed very thick skin about our feelings and we had to. There is no way around it. If at times I seem cold is because I had to build a wall around my feelings, a wall that helps me stand, a wall I lean into so I don’t fall apart. The hatred on the internet is vicious. The wall I built consists of the friends, the help I’ve received along the way, everything else is ignored.

Nicky has RDEB, the Generalized Severe subtype, but his genetic mutations defy explanations. There is little to no research on how the different mutations affect the RDEB diagnosis, and while Nicky has one genetic mutation previously seen in *1* other patient in Italy (I am from Italy, his dad’s mom is also from Italy), the second cause of the condition is actually a deletion (the code is missing part of the information rather than having mutated), something never before seen, imagine that!

All the different mutations mean that all the patients are a little different from one another. What helps one person may not help another.
The good news is that Nicky is stable for the most part. While his body has some nasty crazy wounds, the bandages have kept the amount of blisters/wounds at bay for the most part, so areas that have been protected over the years and have never blistered are pretty strong.
The bad news is that areas that are weak are weaker than ever, most especially his feet. The Doctors are telling me how “great” his feet look compared to other patients that can walk, but as everyone knows me knows well is that I HATE comparisons. Despite his feet looking not too bad, make no mistake, they are extremely fragile. He cannot put any pressure on them at all without developing an extremely painful blood blister. Blood blisters are much more painful than regular blisters. It’s gotten to the point now that just “transferring” from the wheelchair to the car or from anywhere to anywhere which consists in putting at least “some” pressure on his feet will almost ALWAYS cause a blood blister. Of course, at 110+lb, it’s not like I can carry him anywhere, not that the pressure of my arms while carrying him-if I could-would be preferable anyway.

I might not be medically trained, but I have spent the past twenty-some years dealing with a horrible condition that wants to kill my child. I know his skin better than my own. I am lucky that now the Doctors know that I know Nicky better than anyone else, but that was not always the case. Strangers though, at times, can be incredibly insensitive, that’s why the wall of friends helps.

I live in my truth, and I don’t worry about what others think; that’s their problem. I live authentically, simply, and happily, and I do what feels right for me and my family. Nothing else matters. Everyone should, for their sanity, if for nothing else!

Love & Light,