June 2000 – Nicky was just a little over 3 years old in this picture hugging Barney. He loved Barney and Teletubbies, Sesame Street and Blue’s Clues, he would watch them all day long, over and over again. At the time he could walk OK, albeit very carefully and slowly, and was a smart as a whip. When the school district came over a year later to see if he was ready for kindergarten he was able to recognize every animal they showed him, every letter, and count to 15. EB does not and has never affect his mind the least bit and if anything, since he is not easily distracted by other things because he can’t do other things, he became extremely smart about certain things, especially computer games. He’s no dummy to be sure. One thing that helps him as well is how calm and zen he isRead More →

Nicky’s dad sent me a text from the hospital where Nicky is recovered last night and told me that the case worker came in to tell him that the insurances are covering everything 100%. I almost fell flat on my face. These past couple of months have been truly hard on Nicky, and for our whole family as well. I lost count of all the Emergency Rooms and Doctors we have seen lately, all due to issues arising from his g-tube. We saw local Doctors, Doctors at CHLA and Stanford, all who did little to nothing for him. Finally, out of desperation, Nicky ended up at Lucile Salter Packard Children Hospital, in the care of a team. There is so much to say about that, and I will probably write a complete blog when all is resolved, but what sticks in my mind today is the issue of the insuranceRead More →

I was reminded recently of how lucky I am that my personal beliefs are rooted in direct personal experiences rather than bigotry, hatred, hearsay & ignorance. Through the storms of my life I kept an open mind and learned things and lessons so many are not privy of. That’s why I like to tell my stories, so that individuals can take heed of my experiences and learn a few things about life without actually going through hell, but it’s sad to see many refuse to listen and are are driven by hate. I constantly see posts that include insults, lies, bad mouthing and more. It usually makes me more sad than angry, but one post in particular the other day truly upset me. The post in question relayed the story of a little girl being taught the lesson that all homeless people want and need is basically “all your money”.Read More →

What I am watching If there was one show that I can truly, truly can say it’s my favorite of ALL TIME it’s Outlander, bar none.I wish I can say why. Is it the LOVE? Is it the period drama that I am so fond of? Is it the time-travel stuff that I’ve always found fascinating? Is it the sexiest man I ever laid eyes on Sam Heughan? Giggles 🙂 I do not know, but I am obsessed. It’s the only show that I’ve watched, re-watched over and over again, listened to the podcast, I even went to the convention! I am absolutely gaga crazy obsessed!!!I just watched the finale of its 4th season on Starz today and I am bummed. They haven’t even started filming season 5, which means before it airs, it will most likely be mid 2020. I better get on and start reading the book soRead More →

I often post updates on the Facebook Page for my son (https://www.facebook.com/NickyLivingWithEB/) about his struggles and our fights, but the fight over his g-tube lately was one for the books. I have learned over the years that I get more bees with honey, but sometimes insurance companies and the rest of them get me over the edge. That’s where my Italian psychotic bitch shows up, and let me tell you, I love her. Of course, being such a rare disease even in a large population area, there are very few people I can rely on, because there is certainly nobody around here with experience with EB. Normally the best resources are other parents, I have at least one mom on speed-dial who is also my best friend. Even with such support, Epidermolysis Bullosa is very different with each patient, and the care has to be customized through a lot ofRead More →

Being the parent of a child with Epidermolysis Bullosa or any illness/condition is a perilous journey. The rarity of the condition makes it so we have to take any advice we receive from Doctors, Nurses and even other EB parents with a grain of salt. There are many forms of EB and each form has many subforms, so what works for one patient may not work for another. We are all dealing with something foreign and devastating in our own way. Often times the biggest cause of frustration is people that mean well, but say the wrong things, making us feel worse altogether. Here are my top 5 things you should never say to any parent with a Special Need Child: Give any sort of unsolicited advice, most especially avoid say the words “you should” or “you shouldn’t”. Seriously, NO!!! I beg you, please. Only give advice if it’s specificallyRead More →

Is that time of the year again… the time filled with Christmas songs and glittery trees. It’s a time to be hopeful, to enjoy, to be more open and loving. I asked my mom the other day if she put the Christmas tree up yet… she said the time for the Tree or the “Presepio” in her house is over. Boo. If I was in Italy I would put it up for her as I did when I was a kid. The “Presepio” (Nativity Scene) was one of my favorite things to put up, she had a set that was so unique I never found a similar one to buy for myself. It was composed of the usual culprits, the nativity scene itself, filled with the mages and their camels, but there were many trees, houses, villagers, grass and sky to put around it. It was all made of plasticRead More →

It’s often a full time job caring for a child who is medically fragile. We are not only parents; we become nurses, therapists, chauffeurs, companions and more. For some of us, the needs of our child are so time consuming that working outside of the home becomes impossible and impractical. Thankfully, certain cities, counties or/and states realize this and help. Many children with disabilities receive support, and as their parents it is our responsibility to fill out the mountains of paperwork and jumping through the bureaucratic hoops to get them services, and sometimes it’s hard to even find the support. I wrote this in my book Butterfly Child: It is amazing to me how remarkably difficult it is to locate the services that do exist. Hunting for resources can be an experience comparable to being in a labyrinth. Here I was, thinking California didn’t care about the disabled, and IRead More →