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: 49 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: 66 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: 44 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

Nicky’s Life Part 23

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 esophagus. These wounds on the eyes are extremely painful and Nicky can go months without getting one of these abrasions, then he can get 3 or 4 in a row, each taking as long as a week to go away. We tried all sorts of things to avoid this from happening. Nicky flatly refuses any gels, creams or anything of sorts in the eye, always has. It’s onlyRead More

My “Concoction”

For the past few years now I’ve been mixings things up to put on Nicky’s wounds and I do believe I have a good mixture of ingredients now that has helped his wounds in ways no other single item has before. It all got started a couple of years ago when a friend suggested “Medihoney“. Since another EB mom I love had great success with honey for healing wounds, I was eager to try it. But it was too sticky. It was a disaster, Nicky hated it. I stopped using it while I was trying different things, always meaning to find a way to use it. Another acquaintance then had me try cannabis mixed with coconut oil andRead More

Don’t Compare. Never. Ever.

When I was a teenager in the late 70s and early 80s, the hardest thing for me to deal with was being constantly compared to others. As a young woman, I was far from being popular, athletic or confident, and people around me made sure to let me know about it. Not my parents, mind you, but “others”, whose identity I will keep to myself. My older sister, for example, was always very athletic, so when I ended up with her gym teacher, she treated me lower than low because she expected more from me and I simply could not deliver. She would single me out and blame me for things I didn’t do. It was horrible. I hatedRead More

Nicky’s Life Part 22

August 2011. This picture always makes me smile! We were at Universal Studios and it was majorly HOT. Nicky is always hot anyways and has a fan on him at all times because he’s covered in thick bandages. We sat in the Tour area and there were a ton of fans and Nicky’s expression said it all! I love, love, love my angel 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: 49 Comments

Nicky’s Big Brother

I don’t talk much about Nicky’s big brother Alex in this blog. Alex is my first baby that was stillborn at full term in March 1995. I may not talk about him, but he’s always on my mind. His loss is something I will carry with me forever. His absence is felt, yet his presence is felt as well. It’s hard to really explain what your heart knows without a shadow of a doubt. I know a lot of people have doubts about the “afterlife”. Do our spirits survive physical death? What happens when we die? Most people do believe in heaven, but have a hard time believing in ghosts and supernatural things. It’s understandable. It’s creepy. ButRead More

Nicky’s Life Part 21

June 2010 – Nicky and his little brother Connor at Camp. Nicky was having one of those “corneal abrasions” we totally despise. As I write this he’s having another one. That’s when he somehow scratches his eye and it’s extremely painful and it takes a few days to heal. When he was little he would spend the first day in the dark, but as he got older he tried to just live through the day, with the help of strong pain meds. His form of EB (Recessive Dystrophic) effects not only his outer skin, but all mucosal membranes, such as his eyes, mouth, throat and esophagus. Sometimes an eyelash gets stuck in the eye and causes the abrasion,Read More

“I went to Target and didn’t find anything” – No one ever.

Yesterday I took the opportunity of going to the mall for Christmas shopping. I save money every month just so my boys can have a nice Christmas morning, so I was excited. I hadn’t been in the mall in a very long time and the whole place just depressed me. I was in the wrong place to shop for my boys! Don’t get me wrong. I love malls. I used to be a manager for several Babbage’s in many different malls in the Phoenix area in the early 90s and I used to just love working there. The selection of stores was amazing. Malls nowadays though are… hmmm… different. They all compete for the same demographic, seems like. Girls/Women.Read More

Coping

A lot of people often ask me how I cope and how I move forward every day. The answer is… if my son can cope and endure, who am I to complain? The backstory of the quote below from my book “Butterfly Child” is an event that stayed with me and I always think about. Nicky was 5 years old, in kindergarten. Walking into the classroom after recess, he tripped on the mat and fell head first into it. The teacher called me in a panic. I flew to my son, and when I saw him my heart sank. Oh. My. God. All the children in his classroom were quiet and speechless, as was his aide. I oftenRead More

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. Not that we have that much family visiting, but at least his dad will be here, and this year his step-sister and her wife will be here as well. The more the merrier. I wish I could have over my parents, my sisters, aunts, nieces, nephew, cousins and the whole bit, but that will have to wait until we sell everything and move to Italy in a decade orRead More

…and the truth of the matter is…

I don’t often talk about Connor in my blogs, but I will today, among other things I just need to get off my chest in the nicest way possible. 😛 I truly feel that the unsung heroes in the special need family are the siblings. Because Connor was born after Nicky, he never had to learn to accept EB, he just “knew” at a young age that Nicky was fragile and he naturally touched him gently even as a toddler. As he grew older he even started being his little servant, not minding at all when Nicky would ask him to get water or get him whatever he needed and never resented him. Connor is now 12, andRead More