• My Boys

  • My Husband

  • My Family

  • My book

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 sadRead 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 theRead 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 diseaseRead 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 ownRead 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 aRead More →

October 2001 I don’t find any perverse pleasure posting this particular pic, but this is what EB is. 😓 In the book I write about the day that Nicky fell in Kindergarten. This photo was taken that day. Here’s what I wrote: “One morning in October, just a couple of weeks after Nicky got his Aide, I got a call from the school I was hoping I would never get. Nicky had tripped and fell head first on the matRead 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 ofRead More →

Planning a year from now, a month from now or a week from now isn’t always an option. I make and break plans constantly because my child’s health can turn on a dime. We spend our days changing bandages, fiddling with medications, with needle pokes, blood draws & infusions and we measure milestones with wound healing and high red cell counts. One would think that after 20 years and 2 bankruptcies I would be used to this hellhole of aRead More →