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 later. Seven months after that unthinkable loss I miscarried a baby girl at 8 weeks. Thirteen months after that I finally held Nicky. He was a bundle of warmth that felt like heaven. After that initial bliss we found out he had EB, and everything else was a blur. For the longest time I felt lower than low. I am not sure I felt ashamed per se, but I was definitely distressed about my story, I felt distraught, even tormented by the memories of holding my dead newborn and surely poking blisters on my precious new baby did not help myRead More →

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 Cornwall, England, at the end of the 18th century, this show has it all. Romance, Betrayal, Jealousy, Wars, Intrigue, Politics… and the center of it all is our dashing hero. He’s the kind of man who knows good from evil, the kind of man who will always try to do the right thing. By his side is beautiful and fiery wife Demelza, whose big heart complements Ross’ quite well. If you haven’t watched it, I highly recommend it. It is my mom’s favorite show of all time! All 4 seasons are now available on Amazon Prime! Also on PBS Masterpiece,Read More →

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 trip was so exhausting for the both of us that we are still recuperating 3 days later. I wish I could say I can just rebound from things quickly, but at 54, there is no such thing. Nicky is still in pain from the surgery but he’s doing much better. Nicky humbles me every single day. Just before surgery he realized he had a blister in his throat. He coughed and threw up for 2 hours until he happily told me he popped the blister and he threw up the ‘skin’ of it. Here’s to my son, the hero… heRead More →

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. By “inherited” it means that some forms are dominantly inherited (the parent has it, and their child has a 50/50 chance of getting it) or the parents are “carriers”, which means they do not have the condition, and unknowingly pass it on to their offspring, who only inherits the recessive genes of both parents. Of course there are also the cases of spontaneous mutations or, even rarer, autoimmune forms, but they all blister. Blisters form in different lays of the skin in response to heat, friction, injury or rubbing, which can be either superficial or very deep depending on theRead More →

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 as abortion or miscarriage). Somehow, at large, stillbirth is still not considered as the loss of a child. To anyone who has not had personal experience, it can be all too easy to underestimate the impact and the significance. Somehow it does not to count to others. Speaking from personal experience, the death of a baby before birth is no less a death than the death of any other human being. A baby who dies before he or she is born is no less loved and cherished. Like my grandma, who had a stillborn baby girl in the 1940s and talkedRead More →

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: https://www.facebook.com/nick.zahorcak/videos/844285872260202/ More in the book –> http://www.butterflychildamothersjourney.com   Post Views: 682Read More →

“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 emotional bleeding that occurs when a parent truly understands their child’s medical fragility. We know very well that the unexpected can and does happen, that our children are vulnerable. It is a grieving awareness, an in-your-face understanding of a bitter and unimaginable reality. All I ever wanted was for Nicky to be happy. Being happy though, in my book, it would mean that he’s in the least pain as possible, and lately that is simply not happening. It used to be that I craved for Nicky to get some sort of interaction outside these four walls. I thought that wouldRead More →

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 feel grief wash over me, when I am tired of fighting, when I feel isolated or exhausted, I can almost hear another special need mom telling me “you got this”. Some people are just toxic. Don’t feel guilty for taking them out of your life. If they don’t care about you enough to return a message or say something nice and only spew hate, let them go. You’ll be better for it. So much in life is out of our control. If there is nothing I can do to remedy the situation, giving myself a heart attack solves nothing.Read More →