Blog / Nicky's Life · February 16, 2017

Nicky’s Life Part 52

October 1997 – Nicky, 11 months old standing up on the couch. He was so excited!
Following is an excerpt from the Book “Butterfly Child”. This happened right around the time this photo was taken:

“A few days later, in the evening, Nick and I were watching “Wheel of Fortune” when Nicky out of the blue started throwing up serious amounts of blood. It was a lot more than the previous week; it was a scene out of a horror movie, there was blood everywhere. I was shaking as I was holding Nicky, unable to even remotely think of what to do next. Nick picked up the phone and called 911. Within minutes we had several firemen in our living room, which moments later transported Nicky and I to the ER in an ambulance while Nick followed us with the car.
The most distressing aspect of going to the ER with a child with EB is that Nurses and Doctors want to put tape everywhere and handle the infant; so, to tell each and every person not to touch him and if they needed to, they had to be extremely gentle, was a nightmare in itself. One nurse thought I was the overprotective mother from hell! Oh no, she didn’t say that to me, but her rude attitude when I would not let her do this or that to Nicky said it all. Sorry lady, no tape, no holding Nicky, no picking him up under the armpit, no blood pressure, no temperature the way you want to take it. I told her she had to do her job like I asked her to. She wasn’t happy at all, and I didn’t care; I was not going to see Nicky hurt any further, period. It became clear to me at that moment that while I would have to teach Nicky about the world, in turn, I would also have to teach the world about Nicky, about EB, and about listening to the parent.”

More of Nicky’s story in the book… Thank you so much for your support!!

Love & Light,



Vote for me @ Top Mommy Blogs - Mom Blog Directory