February 2002 – The famous rainbow cupcake at SeaWorld (Florida)!! From the book: “Before we left the park that evening we had to grant Nicky one last request: earlier in the day he had seen this “rainbow” cupcake and bugged us about it, but at the time we could not wait in line otherwise we would have missed Shamu, so on our way out we stopped and got him the cupcake! He was thrilled.” More in the book –> http://www.butterflychildamothersjourney.com   Post Views: 1,257Read More →

Something happened yesterday that made me realize we have a LONG WAY TO GO before we can say all disabled people are treated like decent human beings, always. Nicky hasn’t been able to walk since he was 15 years old and damaged his feet beyond repair. With RDEB, when an area gets wounded too often, once it does heal (if it does heal), it remains incredibly weak. At this point Nicky can “transfer” from bed to wheelchair, or from wheelchair to car seat etc, but he often gets blisters just from doing that. This means he’s confined to a wheelchair, and due to his skin fragility, he cannot do many things besides watching TV or playing video games. Something that I do for Nicky for fun is take him to see a live taping of TV shows. We’ve seen several over the years, and this is something that’s a lotRead More →

September 1997 Nicky was starting to crawl at 10 months old and it was worrisome. His problems with his throat had become evident, as he would not swallow his saliva, so the front of his shirt was always wet. His hands (which I had no idea they could web) were starting to look pretty red and they would wound often. But this kitty that we had was amazing with him. She would let Nicky sit on him, pull his tail and everything else, and he would just sit there, taking it. I miss him!! Nicky does too! More in the book –> http://www.butterflychildamothersjourney.com   Post Views: 1,365Read More →

September 2007 Nicky attended an EBMRF (ebkids.org) fundraiser at the Pier in Santa Monica and got to meet Joely Fisher, half-sister of Carrie Fisher. She was adorable and so sweet to him. Just to know she knows what EB is makes my heart swell! More in the book –> http://www.butterflychildamothersjourney.com   Post Views: 1,195Read More →

September 5, 2004 Connor’s first birthday was really fun for Nicky. He laughed and laughed seeing Connor destroy his mini-cake (which we got in purpose, LOL)! After I gave Connor a bath we continued the celebration with present opening. Connor at 1 was a little doll. Nicky just adored him. You can feel the connection just looking at this picture! They are still extremely close today and always will. Their bond is unbreakable. More in the book –> http://www.butterflychildamothersjourney.com   Post Views: 1,190Read More →

December 2001 – We spent the holidays in Italy with my family mostly because flying after 9/11 was absurdly cheap, but I was aching to see my mom, who spent the 3 previous months in a hospital following a scary infection that almost took her life. Nicky had a blast in the snow, he was so cute. Just yesterday my husband asked me if we could give away this coat he’s wearing in this pic. I am not a hoarder, but, ummm… no. No way. Too many memories attached to it. Connor also wore it, and it belonged to my niece before Nicky. It was just perfect for him! Easy to put on too! More in the book –> http://www.butterflychildamothersjourney.com   Post Views: 1,377Read More →

August 2013 – Nicky right after he woke up from his hand surgery at CHLA with his dad. It always amazed me how strong he is. He wanted this surgery and it ended up to be really good for him in the long run as well. We use a splint to keep the thumb “out” at night and even after 3.5 years using that with the wrapping he lost very minimal web space. Of course his hands are far from normal looking, but he can use them, which it’s huge in my book. He truly cherishes his hands, so we’ll keep doing what we’re doing! More of Nicky’s story in the book… Thank you so much for your support!! http://butterflychildamothersjourney.com Love & Light,   Post Views: 1,506Read More →

Halloween 1999 – Nicky was almost 3 years old when I took him to the mall to trick-or treat. I always looked for soft costumes and this one of “Po” of the Teletubbies totally fit the bill! At the time we lived in Arizona. How cute is my little one? More of Nicky’s story in the book… Thank you so much for your support!! http://butterflychildamothersjourney.com Love & Light,   Post Views: 1,353Read More →

August 1998 – When we spent several months in Italy in 1998 so that my parents could help me take care of Nicky, I had the opportunity to have my little guy spend quality time with my Nonna Rina, which is Nicky’s great-grandma (BisNonna). We would go visit her often and she would always ask for kisses. It was so sweet. I miss her dearly, but I know she had a long life, passing away only a couple of months short of her 102nd birthday. The following is from my book “Butterfly Child”: “When we came back from our trip we had a fabulous party for my grandma’s 95th birthday. It was a day I will never forget. This is the grandma that lost a baby girl on her 8th month of pregnancy in the mid 1940s who told me that I would be happy someday and that pain wouldRead More →