Blog · April 27, 2016


I came across a blog yesterday that I could truly relate to. It was about a mom adjusting to her special needs daughter transitioning from “childhood” to “adulthood” after graduation.

In her blog she states she learned 5 things about this new stage of her life as a parent of an adult with multiple disabilities, and while being flexible is something I had to do from day 1 and finding activities for Nicky is surely not something I can’t even contemplate, let alone plan without a considerable amount of convincing, the other points she made were well taken.

Point #3 hit me hard. Parents of children Nicky’s age (19) are normally either empty-nesters or have their kids in college. Surely they are not at their child’s beck and call 24/7 as I am. I am not complaining, mind you, please do not misunderstand me, I am just relating to this mom who states she sometimes envies the freedom other parents have at this point in their life. A freedom we do not have and sometimes we crave and, frankly need occasionally. I am lucky that Nicky’s dad has come to our rescue time and time again, allowing me long weekends of freedom, but my most feverish hope is that Nicky himself could take a break from his condition as well. EB patients need something to ease their immense pain. Sometimes I wonder what Nicky would do with a weekend WITHOUT EB! I can dream, can I?

Point #4 is about finding caring “adult” Doctors, as pediatricians and Children’s Doctors in general want us to transition, which is definitely hard. So far the “move” from Pediatrician to regular Doctor has been smooth, mostly because both Doctors work in the same practice and Nicky’s famous, LOL, so she already knew about him. Well, phew! Score one. The only other Doctor that requires us to find a new provider is the dentist. I’ve been putting it off until fall because I am so… I don’t know. Worried. I have other things going on at the moment and I want to wait until things slow down before I truly start my search and trial. It won’t be easy.

Point #5 is about a slower life without school. For me, life had to be “slower” since he was born, so it’s not anything new. But it has gotten slower, no doubt. I used to work or go to school, or both, but as I wrote in my book, it was just “too much” once Nicky got older and his needs mounted. He’s far worse than he used to be and can do far less than even just a few years ago. He’s extremely dependent on me. I have to wake up in the middle of the night to adjust his bandages, it takes him a while to just transfer from his chair to the bed as his feet are so horrible, I am constantly making sure he has enough water, meds and everything in between.
Since graduation I have to take Nicky to “one less place” (school), but that was only once or twice a week since he stopped going to “regular” daily school once he entered High School. Of course the slowness of life is also an issue that Nicky had to mostly deal with and he would be the first to tell you that he is in so much pain that he does not want to go anywhere nor do anything. It’s just too painful. Even when I want to plan something, he tells me to do it when he’s at his dad’s. It’s not that he does not WANT to do things. If pain was not an issue he would, it’s just that the pain he feels nowadays is an unsurmountable obstacle.

At the end of the day we live in the present, because when you suffer from a chronic illness, you don’t have a choice. It’s day by day, one foot in front of the other. When there is a good day, you soak up that moment. It’s good that Nicky always gives me those smiles, because those moments are a gift.

Love & Light,