Nicky Meets Nick!

First of all, I must apologize for not posting more often. I love to write and writing is my therapy, and I do have a lot to talk about. Lately however, I am knee deep and almost done writing my book Butterfly Child and it’s been quite emotional to say the least. Writing a biography is a risky and draining endeavor. In a way I cannot wait to be done, just so I can put everything behind me and move forward. I want this book to be able to help people and I can tell that getting everything on paper has been enormously therapeutic. I’ve gained much prospective by reflecting on the past, reflecting on my life, myRead More

Nicky’s Legs

Here’s the photos I promised yesterday when I updated Nicky’s CaringBridge Blog. Once again, I don’t post these lightly. I cringe a little. But there is truly no other way to show people what EB is. To understand EB. I want people to understand why Nicky is in so much pain. Photos is the only way to show the cruelty of of his condition… Recessive Dystrophic Epidermolysis Bullosa. What you see here is his left foot. His ankle (not shown) was one of the areas that was hurt as a baby and it’s basically always raw. The top of the foot here is very prone to being scratched and is almost always an open wound. The ‘white’ residue youRead More

October 15th – Worldwide’s Pregnancy & Infant Loss Remembrance Day

I know it seems as if maybe I talk about Alex too much, after all he was in my life only 9 months, all spent inside of me, but how precious is that thought anyway? Alex’s entire life was spent underneath my heart. I felt every kick, cherished every movement. I spent 9 months day dreaming of my baby, my first baby nonetheless. I had been wanting a baby forever. And then the unexpected happened, and nobody wanted to talk about it. I think if I had been allowed to talk freely about Alex back then I would possibly be healed in a probably healthier way now, alas, I still feel I am in a good place atRead More

Coping Techniques

I constantly have people asking me ‘how I do it’ or how Nicky handles all his pain. I think over the years we have learned our unique way of coping with things. I can only limitedly talk about Nicky and how he deals with EB, I know that even if I am his mom, I do not want to speak for him too vaguely or assume, so I will start with him first of what I know for sure. Nicky hates EB. Make no mistake. He hates it. He will say it. When others say it he agrees. When he saw my shirt that stated ‘I hate EB’ he loved it. I am thankful he is a boyRead More

The Boy Whose Skin Fell Off

Ten years ago a documentary aired that I am yet to show Nicky and not sure I ever will.  I wasn’t even able to watch the whole thing in one sitting, I kept crying buckets and it took me three sittings to finish it. I guess you could say it hit a bit too close to home. The story was about a man with the same form of EB as my son and his final months of life as he purchases a casket and attends fundraisers, is interviewed etc., after he was diagnosed with skin cancer. Knowing he would not live long, he wanted this documentary to raise EB awareness. The documentary is widely available on YouTube and otherRead More

Giant Leaps for EB Awareness

This past year it seems as if giant leaps have been made for EB Awareness. As Julia Roberts would say: “HUGE”! I still can’t believe it. It’s happening. Not only Awareness is happening, a cure is closer than ever. I have to pinch myself! Last year, right around this time, the book ‘Courage Under Wraps‘ by Jodi Champagne, depicting Nicky’s Life with EB was released, which led to the FOX11 coverage of it called ‘A Rare Condition‘. Because of all of this coverage, Nicky’s Facebook Page swelled with likes, words of encouragement and so much love. I honestly feel like it saved me in so many ways. So many took it upon themselves to do fundraisers for NickyRead More

I Believe…

I took my son Connor to swimming practice today and while I watched him swim I was listening to my iPod. I have a playlist of songs on it, I call it my ‘fave’, it has over 2,000 songs in it and it plays randomly. When ‘I Believe’ by Diamond Rio came on it hit me hard, and I don’t know why. While I was watching my son doing freestyle there were tears streaming down my face. What the heck? This ‘grief’ thing is just bizarre. I rarely think of Alex and cry anymore, good gosh, it has been nearly 20 years since his death, but sometimes feelings resurface and I am a mess. It is what itRead More

Slaying The Bitterness Dragon

Like every morning, I just spent a good 20 minutes taking off Nicky’s diaper from the night, changing all the bandages and Mepilex Lite pieces all over his bottom and thighs and replacing them with clean ones, and then putting on his underwear for the day, all the while Nicky is crying and screaming in pain. Before I ‘roll’ him to his computer, I have to make sure he has his urinal handy, he has fresh ice and water and give him a dosage of his pain meds to alleviate the pain from the previous night’s bandage change and the painful effects of the laxatives I give him at night. Throughout the day I keep refilling his waterRead More

Reminders…

I was looking at this photo in Nicky’s bedroom last night and as I pointed to it, I told Nicky… “Look, weren’t you just simply adorable”? I kept staring at it, and staring at it, marveling how good Nicky looked in this picture, like a normal 9 month old, then I remembered how it was all a lie. You see, it took me months to make sure he had no “big” wounds or scabs on his face, and the moment he looked good I rushed over to Sears. I covered his whole body with a cute outfit (that had been bought for Alex nonetheless) and somehow I was even able to put cute shoes on him, the one andRead More

Butterfly Child

As some of you know, I am writing a book about my son’s life with EB. I subtitled it ‘A Mother’s Story’ because while I try to stay true to Nicky’s feelings and trials, it’s a tale from my prospective, a mother’s prospective, and what I learned during this 18 year journey with my son. I am still working on the book, and it will most likely be done by the time Nicky turns 18 in late November. At that point I will be shopping around for a publisher. I am hoping it can be available sometime in early 2015 at the latest, depending on the publisher, of course. I will keep everyone posted. In the meantime, myRead More

Listen To Your Heart & the Power of Music

I’d like to think at times that I am more than an ‘EB mom’, but sometimes the lines get blurred. EB is part of everything I do, even though I do not have the condition, it dominates a lot of my day and of our family’s life. Still, sometimes I crave some answers. Not exactly the ‘why me?’ kinds of answers, I just want to know what exactly is my path, what the point of it is, what is the reason for things. After all, I do feel picked on by fate, but am I really? Of course, up to 2001, I had no idea there was a reason or a point to anything. My ‘awakening’ came inRead More

Updates on Nicky and What-Nots

I wanted to share this picture of Nicky’s right hand a year post surgery. It’s doing fantastic! We do wrap the hand religiously and use the splint every night to keep the opening between the thumb and index finger intact, and while we lost a bit on the pinky, it is still ‘straight’, which means it does not pull the wrist inside, which is really great regardless. Even if it gets webbed again, as long as it stays straight Nicky does not mind, it’s the thumb which is most important for us to keep open. I wanted to share this pic of the same hand 13 years ago (below), 2002 to be exact, just before the surgery he hadRead More

New CaringBridge Blog & EB:Disease or Disorder?

A quick note!  I just updated Nicky’s blog at CaringBridge… I talk about his throat surgery, and lots of good news! Here’s the link! http://www.caringbridge.org/visit/nickyz/journal/ On another note, I’ve been wanting to repost this BLOG I wrote for the EB Info World website about a year ago because it’s still and always will be relevant. Many hugs and Love <3             My son Nicky was merely a week old when a good friend, researching the condition, told me emphatically that EB was definitely a Disorder, not a Disease. It may come to a surprise to many when my inner response to that was like ‘whatever’. “Thank You” I replied to her, and never thought about it again.Read More

Legoland Love & Sad Reflections…

This past week we were fortunate enough to visit Legoland-a friend who did a fundraiser for us bought us the tickets, of which I will forever be grateful. I wish I could convey in words how much fun Nicky had in this trip and how nice everyone was to us everywhere we went. For starters, I must say that Nicky has gotten quite hurt in the past when doing rides so he always refused to do the ‘crazy’ ones (as he called them) at Disneyland & Universal Studios. By crazy ones I must specifically mention ‘Space Mountain’ & ‘Matterhorn’ at Disneyland and the ‘Mummy’ ride at Universal Studios. He wants and tries all he can, but sometimes theRead More

A Day In The Life

The other night it took me over one hour just to put Nicky to sleep. Not that it was a stretch, as it usually takes me at least half an hour to 45 minutes. There was the oral care, the g-tube preparation, the bed preparation (bed needs to be cleaned daily) the undressing, the changing of the gauze around his underwear area, the splint for his hand, the medications, the ‘getting the room ready’, which include the various fans, TV, water, tissue, throw-up towels and finally the kiss goodnight, my favorite by far. What took longer that night was the changing of the gauze per se, it was particularly time consuming. I am not complaining, mind you, just describingRead More

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