21 Years…

Twenty-one years ago the unthinkable happened to me. I was 9 months pregnant and on the day that I was due, I just couldn’t feel the baby move at all. The following morning, at the Doctor’s office, I was given the devastating news that there was no heartbeat. The baby had died inside of me. “Fetal Demise”, they called it, although I challenge any mom 9 months pregnant to think of her baby as a “fetus”. We named our baby Alexander and buried him about a week later amongst grief that is hard for me to even comprehend, let alone explain. Alex became part of our everyday life. I have photos throughout our house of him or of meRead More

Nicky’s Life Part 30

June 2009 – Nicky at Camp Wonder! He was about to get on the “Dryers” bus with several other boys from his cabin, many with EB like him, which took him to the Oakland A’s baseball game. This picture makes me smile. Totally “Nicky”!!! More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 115 Comments

It’s Exhausting…

Sometimes explaining EB and/or my life it’s exhausting. People that truly ought to know better, surprise me with their selfishness, with their eagerness to let me know “they have it bad too”, even though, when the chips are down, they wouldn’t trade their life nor their child with mine in a million years. It’s called empathy. It’s called listening, TRULY listening without feeling the need to compare or feel the need to put your 2c in. It’s sad when people that go through the trouble of asking me about my life don’t really want to listen, they only ask to make conversation and try to relate, even though that can’t possibly be done, unless you have a kid with RDEBRead More

The Plight of Orphan Conditions

Just recently a huge gift was bestowed upon me. The gift of no co-pays for Nicky’s supplies. This is no $20 co-pay, this should have been in the hundreds, even thousands (supplies come with a 30% co-pay), making taking care of Nicky almost impossible to afford. This was all in all a “new” issue I was dealing with. Since the ACA passed, insurance companies have been looking for ways to make more money, since their priorities lies with the stockholders and not the sick, so as of a couple of years ago supplies went from 100% covered to only 70%. Because, as we know, the sick are wealthy. Yes, that is sarcasm. While the supplier waved the co-paysRead More

Nicky’s Life Part 29

June 2005 – This is a very special photo for me because it has all my three boys together, in the only way they can be together. I have this one framed in the house. Because Alex is buried in Arizona (at the Queen of Heaven Cemetery in Mesa), I don’t have many chances to go visit his grave, so anytime I pass by Phoenix for any reason (which is not very often), I feel the pull to go bring some flowers to my angel. I’ve had wonderful friends and some family members every now and again bring flowers and send me a new photo, of which I am immensely grateful. Both Nicky & Connor are well awareRead More

My Amusing Italian Girl Problem

I am always looking for ways to take my mind off things, so coming across the many “Italian Girl Problems” memes is always a hoot for me. These are not exactly problems, are they? Just some fun stuff to put a smile on my face. While I can’t relate to all of them, of course, I can relate to many… such as nonna feeding us all the time, how we speak with our hands, or how we live for carbs etc, yep, yep, yep, all me. There are also some misconceptions though among these funny problems. The one misconception that has followed me since I came here in 1982 is that nobody ever guesses where I am from. EveryoneRead More

A Lesson in Compassion

Somehow, someway, life’s challenges and hardships help us evolve as human beings in a variety of ways. Having had hardships myself, and in turn, having met many moms who are disabled, or had to bury their children, or had children with profound disabilities, gave me an opportunity to learn compassion and empathy in ways people not exposed to this kind of life can understand. I may be able to explain how it feels to them, but I cannot make them understand it. Some people, however, seem to have an innate sense of compassion that always surprises me. Not having gone through any true tragedy or hardship, they have that empathy gene that people much older could only wish for.Read More

How I Deal

So many things happened these past few weeks that made me wonder about a myriad of issues. I start every morning with a good dose of “positive”, “funny”, “loving” or “inspirational” images I post on my sleepingangel Facebook page. Why do I do that? Because it helps me start the day in a good way, remembering to keep the negativity away. There is always that “friend” that must post negative stuff, so I give them the benefit of the doubt a few times until I get fed up and unfollow them. I have no time for that crap. You have every right to post whatever you want on your wall, but I have every right to unfollow youRead More

Updates on Nicky

Hello everyone! I just updated Nicky’s CaringBridge Blog with some info on upcoming trials for those interested with links etc. You do have to create an account to access it, but please know it’s free. I do try to keep sensitive information regarding Nicky’s health on that blog only because there are many troublemakers out there and I can block people access to it that have caused me grief in the past. Because of my tireless efforts in raising EB awareness to find a cure for the past 16 years or so, it has made me a target. Thankfully I can block people that say the craziest and rudest things so that’s the reason why I normally moderateRead More

Nicky’s Life Part 28

Fall 2004 – This is actually a quite famous photo of Nicky, I used it for all kinds of things, LOL. It was taken at CHLA (Children’s Hospital Los Angeles) after the first round of iron infusions were over. He was soooo happy!!! It cracked me up. Just a few months earlier his Doctor referred Nicky to the hematologist at CHLA because Nicky’s iron level were borderline lethal. They scared me half to death. I had given Nicky liquid “Ferrous Sulfate” supplements since he was a baby but his blood no longer absorbed iron that way. His levels were so low they we had to drive to CHLA (90 minute one way) 3x a week during the summerRead More

My Biggest Challenge

As a parent of a Special Needs child, I must say that my biggest challenge to overcome is feeling trapped. The feeling of being a caged bird. Mind you, this is not often. Most of the time I am perfectly fine in my role and over the years I’ve come to accept it more and more. Still, there are times where it gets to me. Please do not misunderstand me. I have absolutely no plans nor wish of leaving my family behind anywhere. I have known of moms with perfectly healthy kids or even EB kids that felt the need to leave for months, even years, then came back rejuvenated and I am not in any way judgingRead More

Working Toward EB Awareness

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 a rare, often called an “orphan” condition, it gets little airwaves. This is my effort in raising consciousness about EB at large. Whether I am actually making a difference, I don’t know. But I won’t stop. Ever. My latest guest was Jodi Champagne, which is a well respected photographer and good friend of mine, who did the Photographic Documentary called “Courage Under Wraps“, which depicts my son Nicky’s life withRead More

Nicky’s Life Part 27

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. They were complete open wounds from the knees all the way down to the ankles, all the way around. It wouldn’t be until 2 years later that I was able to get most of that area to heal and not without major effort… More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 114 Comments

Spread the Love

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 watching. Where have our manners gone? Out the door. There was a day, not long ago, where there were three topics that were supposed to be off-limits. Politics, Religion & Abortion. These were topics that were considered inappropriate to discuss in public. I still have this rule with my real-life friends, and they laugh at me about it as if I am just an idiot for not wantingRead More

Nicky’s Life Part 26

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 1 year old at the time, used to be his adorable self and come and play with him and the water and put toys in the water while Nicky soaked. It was a fun time for both. It used to be preferable to soak him before taking off the bandages because it made everything come off very easily. By the time Nicky turned 13 or so, however, theRead More

The Parent’s Journey

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 of backlash, since most parents of chronically ill children’s lives are completely turned upside down and changed in ways hard to describe in a one-sentence answer. This is the reason why I wrote the book (Butterfly Child), which entails *my* journey, the journey from a parent’s perspective. I made sure never to speak for Nicky per se, and even so, I did read the entire book to him which heRead More

Women’s Quotes

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. Happy Friday! Love and Light, Post Views: 164 Comments

Nicky’s Life Part 25

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 after test. To break the routine I was able to take him for a ride in a little wagon with his toys around the hospital and some volunteers played with him, blowing bubbles etc. In the end there was no perforation, his esophagus only looked perforated because at one point, in the middle, it split into two chambers, all due to the scarring and baffling experience with RDEB.Read More

My “Concoction” Part 2

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 about a couple of more ingredients I added. The first one is the Aloe Vera Gel I got at GNC (also available at Amazon.com) and the Gentian Violet that I got at RiteAid (also available at Amazon.com). Hope this helps someone! Until there is a cure… Love and Light, Post Views: 124 Comments

My Goal for 2016

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 at all, so when I think of my childhood I think of the 70s, and the world has changed so much since then, sometimes my brain wants to explode. As a child I rode my bike and watched “Happy Days” while playing Monopoly or Checkers with my sisters. When we visited my grandma’s mini-farm I drank water from the hose, petted the rabbits, checked for eggs in theRead More

Supporting Yolanda

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 the country just to look at a tiny horse with a too-too, or get your bum waxed on national TV. While as human beings, I do believe these women are “mildly” interesting (truly, take the money away and what do you have left?), the reason why I tune in is to watch Yolanda.  I love Yolanda. I love, love, love Yolanda. The moment she was introduced to the show aRead More

Nicky’s Life Part 24

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 put a bib on him. By now he had completely stopped eating solid foods as he could not swallow them well. As a new mother, I thought this was temporary and due to the wounds he had in his mouth. I was unaware of the issues with the throat contracting and constricting. No Doctor had ever mention that to me, and we were still waiting for the approvalRead More

To Bandage or NOT to Bandage. That is the Question.

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 speak, because, once again, I was attacked for it, merciless. I am not sure why people I do not know, who very obviously (having met them or seen their pics) are dealing with a different subtype or subform of EB feel the need to go to the extent of calling me a “bad”, “horrific” or a “crazy mother” and why they feel the need to “tell me what to do”, asRead More

I Feel Ya, George

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 many of us have had broken dreams? A loved one die? Career Dreams shattered? Bad Luck? Financial hardships? Discouragement? Watching others do things we can only wish we could do? As an adult I can wholeheartedly relate. Broken dreams? Check. Career Dreams shattered? Check. Financial hardships? Double Check. Bad Luck? Triple Check. Watching others do things I can only wish I could do? Quadruple Check. Discouragement? I could check that 100Read More