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 tooRead 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: 353Read 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. ItRead 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 gotRead More →

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 I have great taste in friends, as some have turned out to be impeccable human beings, but the past few years, it seems as if hate is everywhere. I don’tRead More →

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 it’s unwatchable. I find that certain shows don’t age well if you didn’t watch them as a kid. I could watch the Original Star Trek or even Space 1999 untilRead More →

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 age now where he should be living on his own or would soon, perhaps graduating from college, but he is everything but independent and will probably never be. EB takes aRead More →

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 more complicated. He’s less mobile, he has more issues, more doctors, etcetera. RDEB is a degenerative condition and the issues we may face are most likely different than what anotherRead More →