A Mother's Journey
My heartfelt book, Losing Alex, which I wrote after the loss of my first baby, Alex, who was stillborn at full term, is now officially an AudioBook and I couldn't be more proud and humbled by the amazing voice of Marsha Waterbury, for lending her talents for my story.
Ever since Nicky has started having trouble with the g-tube we had to change our whole routine. While some are small things, the biggest change has been how much weaker he’s become, so, instead of him coming to the couch to change bandages, I go to him. He spends his...
What does having a “rare” member of the family means for our whole family? Rare means being scared. Nicky is 22 years old and I still check if he’s still breathing each and every morning. That magnitude of worry is overwhelming at times. I live his condition even though I...
What I am watching Let’s face it. There aren’t many historical shows that take place in my beloved Italy, so when I heard about the “MEDICI” on Netflix, I was all over it. Season 1 had the further intrigue of starring Dustin Hoffman and Richard Madden. Season 2 jumps a...
Late last year Nicky started having issues with his G-tube. This is the same g-tube that he has had since March 2000, and we’ve had minor issues since then, but lately it was hurting, more and more, and nothing was helping. After trips to his Doctor and the ER, tube...
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,...
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...
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...
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...
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...
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...
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....
