Blog · August 9, 2016

It’s All About Family

… and just like that, it’s over…

We got back from Italy late last week and I am sitting here pondering how it went so fast. But the truth is, it didn’t. It didn’t feel fast, I can still feel the warmth of my family and the beauty and love that surrounded me. And while the trip was rough on Nicky, he’s glad he went.

The flights we took to get there were from Los Angeles to Paris for 11 hours and then Paris to Turin for 90 minutes with Air France, and coming back we took Alitalia from Turin to Rome for less than an hour,  and then Rome to Los Angeles for 12.5 hours. I can’t praise enough both airlines, they were ready and willing to help. We were always the first to board and the last to leave. On one occasion, while entering the flight from Turin to Rome I tripped and fell and I had 5 flight attendants on me asking me if I was okay, offering me water and lifting me up, it’s kind of funny thinking about it! Yes, they lost our luggage but then found it, but they held up the flight from Rome to Los Angeles to wait for us because the previous flight had trouble-I will never-ever complain if a plane leaves late! Not that I ever did…


Connor & Nicky at the Royal Palace of Torino

Traveling with someone like Nicky requires a lot of patience from a lot of people, and they all excelled beyond measure. I knew in advance that this was not exactly going to be a sightseeing trip because I had Nicky to care for who is having a lot of trouble transferring from seat to seat lately, many times with disastrous consequences. Unlike Nicky’s last trip to Italy in 2007, where I could leave Nicky to be cared for by my mom for a night or two so I could go “somewhere” (we went to Venice then), I could not do so this time. His care is way too involved now, and I was not going to have my 79 year old mom do what is now a much bigger job than she did back then. I also could not take Nicky around as I did 9 years ago.  Nicky himself told me it was not worth it. So, family was the name of the game for this trip and this is why I was so adamant in taking Nicky despite the enormous difficulties in taking such a journey, my entire family is there. I wanted him to see everyone. I wanted everyone to see him.

Nicky spent most of the time at home, and while we tried to take him out, the trips were few. I did take him to a grocery store, a couple of pastry shops and to a sightseeing trip to our closest jewel, Torino. Torino is a city not many know about despite having been the host of the 2006 Olympic Winter Games. It’s simply spectacular. We went to the Royal Palace (Torino was, afterall, the first capital of Italy), the armory (wowser!) and walked around town, getting ice cream and scoping pastry shops for Nicky to look at.

Nicky at the Brustia Pasticceria in Ivrea.

Nicky at the Brustia Pasticceria in Ivrea.

The only notable injury Nicky sustained from the trip back is a gigantic wound on his thigh… it’s BIG. 8×10 big. NIcky is not keen on taking another “flight” anywhere, so that might very well be his last trip to Italy until we hopefully move there once Greg retires in less than a decade. Other than that, Nicky is good, I really believe the cream is working 100%, I am so happy. This is the “Zorblisa cream trial” that Nicky is participating in for RDEB patients from Stanford. It’s not a miracle cream or anything, but I can see some healing that I haven’t seen before. Nicky has noticed too. The great thing about it is that it heals the wound in a very good way, which is important because the better the wound heals the stronger the skin is altogether and not so prone to breakdown. The issue we’re having after nearly 20 years of living with EB is that areas that get wounded often because they are in critical areas, such as joints or armpits, get wounded so easy is baffling. The skin is fragile beyond belief. Areas that heal well, on the other hand, are much harder to injure. Not a whole lot, mind you, but every little bit helps.

I suppose the biggest heartbreak for me during this trip is seeing members of my family watch Nicky suffer. My mom and dad were there for about every bandage change and they do get “it”. I heard “Oh My God” a lot. It’s heartbreaking for everyone to see my son not only suffering but deteriorating before our very eyes. I do what I can to make him comfortable. That’s all I can do at this point, and keep the faith.

Thank you so much for reading all of this and for your support!

Go Italy & USA!!!

Love & Light,