Almost there…

As of yesterday, my book Butterfly Child is officially done. I cried a thousand tears writing this memoir, which encompasses the past 20 years of my life. As of right now I am doing a final re-read, going through every page with a fine tooth-comb, making sure the grammar is top notch. I want to make sure it’s perfect. I am hopeful I can be done and I can make it available by mid-February. I’ve thought long and hard how to market/publish this book, and if anyone has any info, suggestions or advice, please do pass it along. I am open to anything. Worse comes to worse there is always Lulu… it has served me well in theRead More

Ask Nicky Video!

A big thank you to those that sent their questions to Nicky! Here’s the video as promised. Connor said he feels left out, so please submit more questions for Nicky and some for Connor too for another video coming soon! Thank you so much for your kindness and for caring about Nicky. Let’s kick EB’s butt! Much Love, Post Views: 114 Comments

Encounters

A few years ago I had a brief encounter with a little girl that I am still thinking about. I was at Children Hospital Los Angeles with my boys; Nicky had an appointment with the endocrinologist (I think?) and on our way out a couple was behind us with this little sweetheart in a big stroller. She had a flower on her hair and a frilly dress on, but what gave us pause was her face. Despite having some sort of excess bone growth condition, which made her head 2-3 times bigger than normal, she sported the sweetest smile on her face. I told the boys to smile and wave back, which they did, and it wasn’t untilRead More

Ian Ziering Playing for the EBMRF on Celebrity Apprentice

Ian Ziering has my full cheering section support in my house as he plays to raise money for the EBMRF on the Celebrity Apprentice, premiering tonight on NBC. The EBMRF stands for “Epidermolysis Bullosa Medical Research Foundation” (website here: http://www.ebkids.org). The EBMRF and their fundraising efforts are behind the research for a cure that have been going on at Stanford for as long as my son has been alive, and of which clinical trials have started which Nicky will be participating in. If there is hope for Nicky, it is because of the EBMRF. I have no doubt about it. The amazing thing about this foundation is that from its establishment, it pays no salaries. All work, including executive,Read More

The Importance of EB Awareness

A quick post today-I made this graphic for my ebinfoworld.com website and Facebook page as part of a bunch of Memes I did one day earlier this month and this particular one is probably the best one I’ve made, which explains fully why Awareness for Epidermolysis Bullosa is so important. I remember vividly one day over 10 years ago (probably more like 12 or 13) driving to Children Hospital Los Angeles to see a particular Doctor/Dermatologist for Nicky who, I was told, was at least ‘familiar’ with EB. Nicky had some issues, I forgot what, and I made it a point that day to drive 90 minutes to see this particular Doctor. However, on our way we encounteredRead More

Infections Beware!

On our first trip to Stanford, back in August 1997, Dr. McGuire told us something that would forever be etched in my mind. He told us that the #1 enemy and the #1 reason for the demise for children with RDEB was infections. To say he scared me to death in one sentence it’s the understatement of the year. Not only he confirmed his RDEB diagnosis, but also mentioned the word ‘death’ and ‘infections’ in it. Fantastic. This was about 17.5 years ago, at a time where the only information I could get about RDEB was from books, and they were vague. Children with RDEB were (and still are!) rare, and any Doctor I saw back then treatedRead More

The Best Holiday Gift You Can Give Me!

From one crazy overwhelmed mommy to another, I need your help! The best holiday gift you can give me, in anticipation of my release of the book Butterfly Child – A Mother’s Journey (due out in early 2015) is a review of my book “Losing Alex”, which is a FREE download for the Kindle TODAY AND TOMORROW on Amazon 🙂 THANK YOU SO MUCH and HAPPY HOLIDAYS!!! If you don’t have a Kindle, it’s OK, Free apps for your devices and even your computer available here–> https://www.amazon.com/gp/digital/fiona/kcp-landing-page?ie=UTF8&ref_=kcp_mac_mkt_lnd Post Views: 65 Comments

Ask Nicky!

I will be done with my book real soon, and then comes the hard part of selling it or self-publish it, we’ll see. However, in the new year, I want Nicky himself to be able to answer questions on a video I will make of him which I will then upload to YouTube. So, ASK away by leaving a message below on the facebook plug-in. Please be kind and sensitive, it’s all I ask. Nicky is truly a trooper, he wants everyone to know about his condition, so we’re gonna run with it. I am hoping to make several videos each perhaps tackling a different subject per se depending on what Nicky is comfortable talking about. Remember, NickyRead More

A Stroke of Luck

Somehow Thanksgiving gives me a different vibe since I found out early in 2012 that my husband’s family tree from his mom’s paternal side dates back to the Mayflower itself. I thought it was immensely cool to tell my son Connor that his 11th great-grandfather, Richard Warren, was one of the original pilgrims that celebrated Thanksgiving. He is a direct descendant. My husband says that probably millions of people are related to him, and he may be right, still, there is only one branch of his family that I was able to trace back that far, and the reason why that is, is because the family trees of important colonial families in american history are very well documented.Read More

Thanksgiving Blues and Hopes

Yesterday was a particularly tough day for Nicky, and I don’t know if I am getting old or what, but I am still tired from it. We woke up at 5am, left by 6am, drove into Los Angeles during the morning rush hour (never a good thing) which made our trip twice as long as it should have been (3 hours instead of 1.5), then proceeded in having Nicky do hydrotherapy. For those unfamiliar with this, it’s just a pre-medicated ‘good’ bath. A bath where nurses inspect and clean every wound and where the Doctor comes in, checks things out, swabs some wounds and then I completely re-bandage him. Then we drive back home in a rush forRead More

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