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.
For the past several months I’ve been hosting a show called “Butterfly Talk” (radio: BlogTalkRadio/podcast: iTunes) where I interview different personalities that are working toward EB Awareness or offer information in regards to EB at large. My mission is to get these individual’s EB awareness efforts recognized, mostly because EB being...
October 2002 – This is Nicky just before his 6th Birthday at Disneyland with Pooh. At this point he could still walk somewhat well, but not for long stretches. Every now and again he had to sit in his stroller to rest. His legs at the time were just… horrible....
There is so much hate going around. Fear mongering is at its highest peak. I’ve never seen so many insults as I’ve seen lately thrown around with such callousness. When diplomacy is viewed as a weakness, or, worse, as “brown-nosing”, it makes you wonder what poison they have been drinking. Or...
November 2004 – Nicky was 8 years old here, back when I could still give him baths. I did put a little bleach in the water to kill infections, but not a whole lot. At the time the pain level was not as bad, plus his little brother, who was...
I read a quote recently which came across a Special Need Parenting website that truly aggravated me. It stated that it was not the parent’s place to tell their child’s story, that the diagnosis was that child’s journey, not the parent’s. Needless to say, that quote received quite the amount...
I made these quotes for my sleepingangel.com website which I haven’t updated in ages many months ago… call it lack of motivation or just pure laziness. I don’t know. But I do love these qutoes I found in magazines from these remarkable women so I figured I’d post them here....
July 2001 – Nicky was 4.5 year old in this picture at Lucile Packard Children’s Hospital @ Stanford. He had had a dilatation which is normally routine for him, but this particular time the Doctors were fearing a perforation, so they had to keep him several days to run test...
I talked about my “Concoction” of various healing ingredients that I use to get Nicky’s wounds to heal on my blog here, and with the following video I wanted to show how I apply it on the wounds and info on where I get some of the ingredients and also...
I am having a hard time reconciling it’s 2016. When I was a child, the year 2000 seemed so far off into the future that anything beyond that seemed such a loooong time away… and here we are. While I was born in the mid-60s, I barely remember any of them...
Of all the crazy TV shows I watch, one of the silliest must be “The Real Housewives of Beverly Hills”. I think it’s silly mostly because we see what people with an insane amount of money do, like taking a swan to the veterinary, buy a $190,000 ring, travel halfway across...
July 1997 – Nicky was a little over 7 months old here and the problems with his mouth are already quite evident. Because he could not swallow his own saliva due to the severe problems with his mouth and throat, he would drool endlessly. So much that I would usually...
If there was one thing I’ve been criticized endlessly for, and for which I’ve stood my ground over and over again, is my need to bandage Nicky. I wrote extensively about it in my book (Butterfly Child), but I feel the need to make my feelings more “public”, so to...
Even as a child, “It’s a Wonderful Life” touched me in ways hard for me to even comprehend; I didn’t yet have the life experiences to understand the emotions over struggles George and many of us go through. This is why this movie resonates nearly 70 years after its release. How...
October 2000 – Nicky was almost 4 years old in this photo. The red, swollen eye was caused by a combination corneal abrasion/wound inside the eyelid. Recessive Dystrophic EB means not only wounds on the outside skin, but also on all mucosal membranes, which include the eyes, mouth, throat and...
