It was a cold, rainy, foggy day when we left San Francisco this past February at the end of the shoot for Nicky’s documentary. We arrived home just before midnight, exhausted but happy. Nicky then slept for over 12 hours, as he often does. I was contacted by Barcroft TV Productions last fall after Kate, a producer, came across my book “Butterfly Child” where I wrote about Nicky’s life with Epidermolysis Bullosa. She wanted to know if Nicky might be interested in telling his story for this show. Nicky is always VERY open for awareness, he wants a cure, and he’s not, and never has been modest about taking photos of his wounds etcetera. I know many patients are, well, he’s not. Needless to say he agreed. For this TV show, not only they wanted to show EB per se, but they were interested in showing how this condition wasRead More →

In exactly 10 days Nicky will be 20 years old. I have to let it sink in because not only this is a long time for a child that deals with this severe of a form of this condition (and he’s stable at present), but make no mistake, my rainbow baby was surely precious and wanted and cared for in ways I am not yet sure I managed to ever master. Yes, I am still learning. Nicky didn’t come with an instruction manual, and since every child with EB is different, even if I had had a manual, I am not sure it would have helped much. Nicky is most certainly unique and I know my style of parenting is unique as well because he is my rainbow baby after all. I call Nicky my rainbow baby because that is what you call a baby that is born after his orRead More →

I am in a giddy mood today (hence the cartoon). Nicky turns 19 today. Wow. Happy Birthday Darling! Ever since he was born we celebrated his birthday on Thanksgiving day because it’s so much more fun when we bring out the cake and the gifts while everyone is actually here. Not that we have that much family visiting, but at least his dad will be here, and this year his step-sister and her wife will be here as well. The more the merrier. I wish I could have over my parents, my sisters, aunts, nieces, nephew, cousins and the whole bit, but that will have to wait until we sell everything and move to Italy in a decade or less. Here’s crossing fingers I can actually make that happen. It’s not going to be easy. I even asked my mom last week if they sell Turkeys there and she said YES! IRead More →

I don’t take any perverse pleasure posting this picture, but I learned long ago that RDEB (Recessive Dystrophic Epidermolysis Bullosa) cannot be explained, it can only be shown. And even while posting this photo I cannot show how easily the skin peeled off, or how hard it was to re-wrap, as the upper thigh is extremely hard to bandage because the bandages themselves shift and move endlessly. I am not posting this to evoke sympathy or pity. I am posting it to open a door into our lives to help others understand, to educate and build acceptance for children and adults living with this condition. Follow Nicky and his journey, living with RDEB here–> https://www.facebook.com/NickyLivingWithEB Los Angeles News | FOX 11 LA KTTV Love & Light, Post Views: 1,819Read More →

I came across this picture of Nicky the other day while transferring photos from one computer to another and I had to stop and admire it. This is Nicky, he was 2.5 years old, with a needle in his hand, poking his own blood blister on his wrist. Just the fact that I could trust Nicky to handle a needle at that age, when I could not dream of giving a needle to my healthy 10 year old today, speaks volumes at the amount of grace, patience & maturity Nicky had to have at such young age. But that is only the tip of the iceberg as far as he’s concerned. Nicky adds a certain family dynamic that is hard to explain or even illustrate. In a way, Nicky is shy, withdrawn. He does not speak much and it is hard to have a conversation with him just because IRead More →

I normally do updates on everything ‘Nicky’ on his blog at Caringbridge, and I do try to post there at least once a month, but sometimes I feel it’s a bit constrictive. A lot of my storytelling includes photographs and I am unable to post photos over there. Well, you can post ‘some’ photos, but there are limits. You can only post one per blog and it shrinks it down to a minute size. There is also a limit of 100 photos per blog. So if it’s a post that involves photos I do it here. Yes, I could do it on Facebook, but I refuse. Facebook has deleted way too many EB wound photos and even blocked me for doing so for me to trust them anymore. I wanted to show this photo of a blister that Nicky got recently on his leg (It did go all the wayRead More →

If I had to pick the most challenging year of my life, besides the year I spent crying after Alex died, it would have to be Nicky’s first year. Hands down. I know. It’s apples and oranges. The year I spent crying over Alex’s death is completely different than the year I spent adoring and caring for my little guy. It was wonderful to finally be a mom, but the challenges I faced were so compelling, at times I wonder how I faced them all without my family’s help. As a matter of fact, I had no help for the most part. My mom, bless her heart, and thank my lucky stars, was there when Nicky was born and stayed until Nicky was about 6 weeks old (my family lives in Italy), later my MIL came to help for about a week because I was going out of my mind.Read More →

As some of you may or may not know, my son Nicholas was born with a rare and incredibly painful skin disorder called Epidermolysis Bullosa, the Recessive Dystrophic form. He will be 16 years old in a couple of weeks. A photographer, a dear friend that I met at the College I am attending, wants to make a difference and help the cause, we need a cure and we need it NOW! She started photographing Nicky’s life and him living with EB in an effort to make a difference. This is a project that may take months to finish. She is photographing Nicky’s bandage changes, him at school, at the doctor, at the hospital and in whatever situation you can imagine to help gain a broader understanding of what his life is like. She has started a Facebook page for this project where she is sharing her thoughts and herRead More →

I was asked once why I do not use my personal blog to talk about my son or EB, as others do. The answer is a very personal one and a respectful one. I want to keep everything separate. My life is such a roller coaster right now, and has been for nearly two decades, that if I don’t keep my thoughts straight, I might lose my mind. I keep a blog about Nicky, where on occasion I always talk about my husband’s health at Caringbridge (http://www.caringbridge.org/visit/nickyz), and I talk endlessly about EB at my Blog at the EB Info World website (http://blog.ebinfoworld.com/). I even keep a blog about my photography and graphic design (http://blog.sleepingangel.com/). But this Blog is about me. The person that plays the role of caregiver, mom, nurse, student, cook, and of course there is the cleaning, the laundry, the grocery shopping, mom’s taxi… and the listRead More →