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.
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...
I remember vividly being pregnant with my first baby, Alex. Finally my dream of becoming a mom was coming true. I waited an elated 9 months for his arrival, and on the day after he was due we found out he had died in utero. He was stillborn 2 days...
What I am watching I truly love the saga of Ross Poldark, now in its 4th season on PBS (Masterpiece). Aiden Turner in the lead role is quite the eye candy to boot! The show takes the story from a series of 12 books written by Winston Graham. Set in...
My son and I had two incredibly hectic days this week. We drove to Stanford one day for 6 hours, and the next day we were in the hospital all day where Nicky had surgery until 5pm, and then we took a 7 hour drive home-longer because of traffic. That...
WHAT IS EPIDERMOLYSIS BULLOSA? Epidermolysis Bullosa is an umbrella term for inherited, genetic skin blistering conditions that vary greatly from mild to lethal. The three main forms are categorized under “simplex”, “junctional” and “dystrophic”. In recent years they also added a “kindler” form and an “autoimmune” form to the list....
October is Pregnancy and Infant Loss Awareness Month, yet stillbirth is still one of the last taboos. The Dictionary defines “stillbirth” as the birth of an infant that has died in the womb (strictly, after having survived through at least the first 28 weeks of pregnancy, earlier instances being regarded...
September 2014 We had quite an encounter with Orlando Bloom at the ROCK4EB Fundraiser in Malibu. We had a 10 minute chat.. He rubbed my shoulder and told me I was a brave woman. Mind Blown!! Then he took a photo with Nicky. A short video of the encounter here:...
“I no longer feel the need or want to keep living 😞😞 I don’t feel strong anymore…” That sentence, if ever uttered by Nicky, is my greatest fear. He has never said that, but he’s come close to it enough times to throw me in despair. It’s the type of...
When my son was born there were no research trials, no further treatment of any kind. No pills, medications or hopes to be had. No one can prepare you for having a rare child. It’s a lonely place to be. I am a special needs parent. I got this. When...
I’ve been lucky. I come from a very loving family. My husband is amazing and a great dad. Even my ex is a truly caring dad. My kids are the most amazing, loving, compassionate people. I am so proud of the young men they have become. I like to think...
What I am watching I have a confession to make. I never watched the original “Lost in Space“. They never aired it in Italy when I was a kid, so there’s that. I catch my husband watch an episode here and there but to me it just looks so cheesy...
I am a nurse every single day for my son and I don’t enjoy it one tiny little bit. There are days where EB just overwhelms me. Still. One would think that after nearly 22 years it would just get easier, but it’s just draining and relentless. Nicky’s at that...
As the mother of a child with a complex medical condition, I feel that there are some things everyone should know about what it’s like to parent this child, whether he or she is 1 or 21. In my case, of course, as Nicky is getting older, things are getting...
September 2010 Connor had gotten a kitty for his birthday and the boys just loved her. They still do! She’s too heavy now for Nick to pick her up or hold her anymore (I need to put her on a diet, LOL), and she’s become a bit reclusive over the...
