Nicky

October 6, 2017

Nicky featured on TV show “Body Bizarre”

It was a cold, rainy, foggy day when we left San Francisco this past February at the end of the shoot for Nicky’s documentary. We arrived home just before midnight, exhausted but happy. Nicky then slept for over 12 hours, as he often does. I was contacted by Barcroft TV...

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November 15, 2016

20 Years

In exactly 10 days Nicky will be 20 years old. I have to let it sink in because not only this is a long time for a child that deals with this severe of a form of this condition (and he’s stable at present), but make no mistake, my rainbow...

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November 25, 2015

A Thanksgiving Birthday

I am in a giddy mood today (hence the cartoon). Nicky turns 19 today. Wow. Happy Birthday Darling! Ever since he was born we celebrated his birthday on Thanksgiving day because it’s so much more fun when we bring out the cake and the gifts while everyone is actually here....

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March 9, 2015

This is RDEB

I don’t take any perverse pleasure posting this picture, but I learned long ago that RDEB (Recessive Dystrophic Epidermolysis Bullosa) cannot be explained, it can only be shown. And even while posting this photo I cannot show how easily the skin peeled off, or how hard it was to re-wrap,...

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February 5, 2014

My Boys, Reflections & Realities

I came across this picture of Nicky the other day while transferring photos from one computer to another and I had to stop and admire it. This is Nicky, he was 2.5 years old, with a needle in his hand, poking his own blood blister on his wrist. Just the...

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November 27, 2012

Dear Blisters, Please Go Away…

I normally do updates on everything ‘Nicky’ on his blog at Caringbridge, and I do try to post there at least once a month, but sometimes I feel it’s a bit constrictive. A lot of my storytelling includes photographs and I am unable to post photos over there. Well, you...

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November 17, 2012

Happy 16th Birthday Nicky!

If I had to pick the most challenging year of my life, besides the year I spent crying after Alex died, it would have to be Nicky’s first year. Hands down. I know. It’s apples and oranges. The year I spent crying over Alex’s death is completely different than the...

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November 8, 2012

Nicky: Living with EB project

As some of you may or may not know, my son Nicholas was born with a rare and incredibly painful skin disorder called Epidermolysis Bullosa, the Recessive Dystrophic form. He will be 16 years old in a couple of weeks. A photographer, a dear friend that I met at the...

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September 4, 2012

Oh yeah… I am soooo lazy!

I was asked once why I do not use my personal blog to talk about my son or EB, as others do. The answer is a very personal one and a respectful one. I want to keep everything separate. My life is such a roller coaster right now, and has...

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May 27, 2012

Nicky & EB. What it is, how he’s doing.

I wrote this as a Facebook/MySpace/Blogspot post a couple of years ago-I tweaked it and updated it a bit but I felt this information is worth sharing and keeping ‘out there’ so to speak. There are quite a few family and friends, including some I’ve reconnected with recently, or within...

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