It Is What It Is

Have you ever had that feeling of being so completely overwhelmed and depressed, yet refusing to give up because, well, you’re not made that way? That’s how I am today. Sometimes I wish I was the kind of person that just ‘gives up’, ‘put a fork in me, I am done’. This whole thing we call life is just depressing. The thing is… I can accept EB and what has brought into my life, but the sheer amount of pain it has brought to my son on a daily basis, it’s just incomprehensible to me. I don’t get it. Yes, 17.5 years later, things are getting worse, much worse, and I just don’t understand why, how, what theRead More

1/2,381,000

I got hit with a big blow yesterday, one I’ve known all along nonetheless. As the DNA results came back that Nicky did in late April at Stanford to find out if he’s eligible for the skin graft trials, I’ve been trying to decipher them myself. I will talk to the Doctor this week (hopefully) to find out if he’s a candidate, in the meantime through my googling I found out that Nicky does have the “Hallopeau Siemens” subtype, which is, sadly, the worse form of Recessive Dystrophic EB. Yes, he has a nucleotide substitution in exon 109, and the mutation is denoted R2685X at the protein level, which points to RDEB-HS and ONLY to RDEB-HS. Ugh. IRead More

Have You Read A Good Book Lately?

I don’t often recommend books, and I must admit, I am an avid reader, so I should do it more often. The type of book I look for, however, is not your novel or anything that is fictional. I feel as if there is plenty of time during the day to take my mind off my daily struggles with my son. There is TV, there are movies, there is Facebook, there are trashy magazines, there are hugs and kisses and so much more. But because I have such little time to read, and because I feel as if I have an hour to myself I want to read something that helps me in my life, I go forRead More

A Grateful EB Mom

The word of the day might as well be ‘awareness’. Not only Nicky’s book was featured on a story on FoxPhilly, but a good friend told me how anytime he buys EB eggs he thinks of me! That was too funny. At any rate…  we got back from Camp Wonder  this past Saturday afternoon and the boys can’t stop talking about it. It was magical as always. To have a Camp sponsored by companies such as Cetaphil that enhances the lives of children in great pain every day, it’s beyond humbling. The Children Skin Disease foundation is doing amazing things and I will forever be grateful to the Tenconis, especially Francesca, who make it happen every year. THANK YOU!Read More

New CaringBridge Post & Blister Musings

Just a quick note – I just updated Nicky’s blog at CaringBridge… I talk about his recent struggles, results from his biopsy and camp stuff. Here’s the link! http://www.caringbridge.org/visit/nickyz/journal/ On another note, I recently came across this BLOG I wrote for the EB Info World website a couple of years ago and I thought it really belonged here, so I am reposting it. Many blessings to everyone and keep reaching for the stars!               Help! I have a blister!   I couldn’t help but be amused the other day while visiting Target by one of these little packets containing Hydrocolloid Bandages. I was amused by two reasons: 1. Obviously amusing is the fact thatRead More

It Takes A Village

So much to tell with the amazing pouring of support due to the story on Nicky that aired on the local FOX11 and more…. Before I get started… four links: 1. Nicky’s original story that aired on FOX11 in late April… http://www.myfoxla.com/story/25298119/a-rare-condition 2. Nicky’s follow-up story on FOX11 that aired in mid-May of Nicky’s living his dream of being a pastry chef http://www.myfoxla.com/story/25532551/nick-zahorak-is-living-the-dream-of-being-a-pastry-chef 3. Nicky’s page on Facebook where I post updates on him, run by our friend Jodi Champagne. https://www.facebook.com/NickyLivingWithEB 4. Link to get the book ‘Courage Under Wraps’, a photographic documentary by Jodi Champagne of Nicky’s life with EB http://www.blurb.com/b/5024440-courage-under-wraps (print and ebook). Itunes version available here: https://itunes.apple.com/us/book/courage-under-wraps/id803462653?mt=11 I can’t start this blog without sincerely and wholeheartedlyRead More

Desperately Seeking Zen

I must admit, this past week it was hard to try to be my usual ‘Zen’ I try so hard to be. Nicky’s g-tube supplies failed to show up a few days before we usually run out, and with 3 days of ‘food’ left, I called, only to find out that, for the umpteenth time, the company that supplies us with these vital products changed. It’s never, ever a good thing. Actually this time, the company didn’t technically ‘changed’, they merged with another one, and they claimed they Faxed the referral to the Medical Group/Insurance on May 21st and they were still ‘waiting’ for a response. They also stated that they do not send anything automatically, and that fromRead More

Not A Pretty Picture

Please Note: I had published this post on HubPages but they keep deleting my posts for all kinds of crazy reasons (not high enough ratings, what?). I finally gave up on them and here’s my post again. Reflections and Confessions… I just finished reading a beautiful, photo-filled book of a mom of a beautiful girl with Down Syndrome, and despite the heartache and the many pages I earmarked because “I feel the same way!”, at the same time, I realized that the book I am writing (which will have photos throughout) about Nicky’s life, will not really show what we deal with everyday. The realities of having a 17 year old with Recessive Dystrophic Epidermolysis Bullosa, with wounds thatRead More

A Grateful Heart

It occurred to me this past weekend how when I saw a single negative or hateful post anywhere-on Facebook, Twitter or the Web at large-how it would just ruin my day. I would get a pit in my stomach that was riddled with ugliness and I couldn’t shake it. Let’s face it, hate is ugly. There is no way around it. I try so hard, SO HARD to remain positive, thankful, grateful about the gifts in my life, no matter how hard life is every single day. I want and need to be positive because Nicky needs it from me. That’s why, on my Facebook page Sleeping Angel, I post positive, uplifting quotes every single day. Quotes aboutRead More

Return To Zero – My Story

I know for many, the death of a child, an infant, the loss of a pregnancy is unthinkable. Unfortunately for many, it is a reality. After I lost my first baby, Alex, at full term, I was shocked to find out how many women suffered such loss-the latest estimates state there are at least 100 stillborn babies in the United Stated every single day. Yet, it’s a loss that nobody talks about. Here’s an excerpt from my book “Losing Alex” (available at Amazon) where I explain how hard it was for me to find any book that talked about this kind of loss: “This was 1995; the internet was not what it is today. ‘Online’ shopping was stillRead More

Nicky’s Pastry Chef Dream Comes True!

Nicky’s dream has always been one of being a Pastry Chef… years ago, when he was about 10 years old, while flipping the TV channels, he came about a show on the Food Network when a sweet old lady (as he tells the story) was making soup. I think it may have been Paula Deen, not sure! He said it looked delicious, and he started following her show. He became enamored with all the sweets she made and shortly thereafter the show ‘Unwrapped’ became his favorite. This was very bizarre in a way, since Nicky could not swallow much, let alone eat a whole lot. He has had a g-tube to supply nutrition to him since he wasRead More

My Gift To You

Happy Mother’s Day everyone! In honor of all Mothers who had to give their children back, and as my way of paying it forward and my gift to all of you, I am offering my book ‘Losing Alex’ for the kindle for FREE for a few days. Here’s the Link —> Losing Alex <— (or you can click on the cover image) If you do not have a kindle it’s OK, there are free kindle reading apps for smartphones, tablets, PCs/Macs and even a free kindle reader app for your browser. http://www.amazon.com/gp/feature.html?docId=1000493771 Love & Light and Happy Mother’s Day! Post Views: 84 Comments

Special Siblings & Social Graces

I was just thinking last night how sweet and compassionate Connor is with Nicky. He is very patient while I spend an hour almost daily helping Nicky with his homework, about two hours every night changing bandages, about 45 minutes at night putting Nicky to bed, and another 45 minutes in the morning to get him up for the day. I have to help Nicky to get dressed, to the bathroom, I have to get him water, pain meds and the list goes on and on. I was a little frustrated the other morning and didn’t hear Nicky throwing up and Connor came in to hug me and to let me know he gave Nicky some water andRead More

Here’s The Latest…

Nicky’s having a rough time right now. Just when he was able to clear his throat by chocking up a piece of skin-not a pleasant thing, since now he has a wound in his throat that needs to heal-he is now dealing with a big piece of skin torn from going #2. It’s always something. I promise to do a blog at Caringbridge about our trip to Stanford sometime this week-I can never find the time. This is the only morning I have this whole week to do ‘stuff’ and all I did is take care of this blog while I helped Nicky doing various things. Which is why my poor book is written in 15 minutes hereRead More

EB Awareness

It always humbles me when anyone is inspired, cares, and takes a special interest about the devastating condition my son was born with, Recessive Dystrophic Epidermolysis Bullosa. For so many years we felt so abandoned. Nicky always thought nobody cared. I’ve always tried to change that and for so many years I tried my best to make this little known disorder known, but many things in our lives we cannot do alone. We needed help. Jodi Champagne was the first person that wanted to make a difference for us. I met her while taking a class at the local College. She came in to speak to us and I felt a special connection immediately. It wasn’t until aRead More

Please Watch!

Just a quick post! Jodi Champagne, who is the photographer who documented my son Nicky’s life with Epidermolysis Bullosa, was recently interviewed by an online video magazine and this is the interview. Get the Book exclusively at BLURB http://www.blurb.com/b/5024440-courage-under-wraps and on iTunes! https://itunes.apple.com/us/book/courage-under-wraps/id803462653?mt=11 Post Views: 128 Comments

You Know You’re An EB Mom When… & What I Need You To Know

I know there are some out there who think they know what the life of an EB mom is like. Maybe you’re an EB (Epidermolysis Bullosa) mom yourself, and this is your truth, but to others, this may be a surprise, or even a revelation. Here’s what my life it’s like from my prospective. You Know You’re An EB mom When…  When you know more than the real doctors do about your child. When you consider internet friends you’ve never met to be some of your best friends. When you think it’s a good day if you don’t see any blood. When you get asked at least once a week if you are a nurse. When your two-year-oldRead More

You Can Thank Me Later

On my last post I talked about Insurance Companies and the hell they put me through the past 17+ years. I also explained why they bother me so much-the endless bills they do not pay or refuse to pay when they should, my two bankruptcies, and the simple fact that they are making our life harder than it already is. Having a medically fragile child is not for the meek, you have to be prepared to do and fight things on a normal basis that make you more a nurse than a caring, loving mother. We have to do things no mother should have to do. All I should do is hug my child, soothe, explain and love,Read More

Let Me Tell Thee How Much I Loathe Medical Insurance Companies

Two years ago it became clear that Nicky’s power chair was on its last leg. The chair was 6 years old and it was literally falling apart. Not only that, Nicky was 9 when he got it, and he was now 15, he barely fit into the thing anymore. The Physical Therapy dept at CHLA started writing referrals to the Insurance company to get a new chair. Nothing happened. Several letters later, several appointments for measurements later, several phone calls to the insurance and a year and a half later, there was still no response, no approval, no denial, no nothing. It was like they were ignoring the whole thing. Last April (2013) at the yearly appointment withRead More

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 fact that I could trust Nicky to handle a needle at that age, when I could not dream of giving a needle to my healthy 10 year old today, speaks volumes at the amount of grace, patience & maturity Nicky had to have at such young age. But that is only the tip of the iceberg as far as he’s concerned. Nicky adds a certain family dynamic thatRead More

Under the Bandages

As many of you know, I don’t post photos of Nicky’s wounds on Facebook because they’ve been deleted many times because people “report’ them. I’ve been blocked and my account has even been suspended by my intent to simply show what EB is. People are disturbing and can be quite mean-to say the least. I don’t deal with that well. This is deeply, DEEPLY personal to me. My intent is not to shock or exploit, I would like nothing better to fade into obscurity and live my life as I like and see fit, but my child suffers daily and I can’t make it go away. My wish is to educate and spread the word that this isRead More

Apples & Oranges

I feel the need to vent this morning, so thank you for letting me do that! OK, here goes. A few months ago I posted a blog on the EB Info World website about the crazy notion that Every EB patient is different. I was inspired to write that blog when several well meaning young adults with the same form of EB my son has just could not understand why Nicky could not walk, why he was bandaged so much, and why his skin was different than theirs, even with the same diagnosis. That blog explained my experiences and understanding of how different each patient truly is. Dismissing the fact that every EB patient is different and throwingRead More

Thank You for Caring <3

I must admit, it’s not easy for me to post photos of Nicky’s wounds. When I do, I put them here on my blog so there is no chance of them getting deleted by some jerk who thinks I am exploiting my child. When this happens, and I was called this just recently, I am deeply hurt. Then again, these people who are so quick to judge, don’t have a rare disease nobody cares or knows anything about. I have to say I am developing a thick skin about people’s judgement. Long gone are the days where I could not sleep because of someone’s words cutting me deep. They still hurt, but I have to put it allRead More

Here’s to a 2014 where Love prevails

I just started listening to an audio-book today by Rhonda Byrne called ‘The Power’ and it’s truly helping me start the New Year in a more loving note. Truly, the more I live the more I realize the power of Love is life changing, but I never realized how much. Thinking positive, believing in the impossible has changed my life in ways I cannot even start to explain. It all started in the most unlikely of ways, in late 2001. At the time, I was upset, negative, argumentative, depressed, not in the best of places. You would not have liked me at all, and many people didn’t and were not afraid to tell me so. I was divorced, livingRead More