Nicky’s Life Part 28

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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 summer for blood infusions first (to replenish the blood with the enzyme that absorbs iron) and then actual iron to stabilize him. We’ve been getting iron infusions ever since, at times blood too, although nowadays his numbers are so stable he only needs to go a few times a year.

More of Nicky’s story in the book… Thank you so much for your support!!
http://www.butterflychildamothersjourney.com/?page_id=19

Love & Light,

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My Biggest Challenge

“Losing a baby at birth, followed by a (83)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 judging them. If I could, I might do that too.

But I cannot.

For one, I love my family too much to do that to them.

For two, there is no-one to take my place in my absence. No-one.

So, I have to, shall I say, “suck-it-up”.

I don’t so much object to the fact that I have to take care of my family. I enjoy doing that. I really do, no lie. Taking care of Nicky, although hard (and it’s getting harder all the time as he can do less and less), is rewarding in the fact that I get to be in the presence of an extraordinary human being, one that I am very humble to call my son. I also love being married to a remarkable man who truly cares for me, and I cherish being home when my little man comes home from school. I’ve been there every day of his life and I don’t plan to disappear now. These are going to be tough years coming up “growing-up” wise. Being a teenager is not easy and I know for many, these years could make or brake an entire lifetime. I plan to be there every step of the way.

No, those negative feelings are not toward my family at all. It’s mostly to do with the fact that going anywhere is a challenge. Taking a much needed rejuvenating vacation, the kind of freeing vacation where all I worry about is the amazing photos I am going to take the next carefree day is a dream that goes unfulfilled year after year.

I am an extremely nomadic kind of person. I love being outside. I want to go hike, I want to take a train destination anywhere I have never been… I love to travel and if I could I would travel all the time. It’s truly fuel for my soul, part of my being. After all, I live halfway around the world from where I was born. I am salivating over dreams of visiting Hawaii, Scotland, Paris, Vienna, even just New York. Mark my words, I am going there somehow, someway, someday. But not now, and I am not sure when.

Nicky nowadays has a hard time even just getting in the car, so taking him with me on a plane ride is madness, not counting all the supplies I would have to bring along and the challenges of getting around when we get to our destination. He does not want to go anywhere anyways. Despite that, I am still planning to take him and Connor to Italy this summer. They both want to go there… and I want to take them because I want to see my family and I want them to be with family, but I know that trip is going to be… hellish. I have these mixed feelings of being extremely excited to dreading the whole thing. I want to be able to skip the planning, the packing the countless supplies and the trip itself and wake up in Italy. Ahhhh. Yes, “Traveling” per se with him is a chore, not a fun experience, even though I would never tell him that. I am your quintessential Julie McCoy, once is all is said and done we are going to enjoy ourselves, dammit!

Every summer I plan a family trip somewhere and it’s been getting worse and worse every year. It never goes well. Last summer we spent two days in San Diego visiting the San Diego Zoo and Wild Animal Park and it was just not… fun. Oh, visiting the parks was fun, that’s about it. Why can’t my life make travel with my family a little easier? For the moment we decided that if we were going to go anywhere, it had to be somewhere close so we can drive back home at the end of the day. That’s what it comes down to. That’s how pathetic it is.

But… I don’t want to be a victim. That’s my biggest challenge to overcome. So what if I spend days and weeks in my house with the sole respite being a trip to the grocery store or perhaps a trip to the gym? So what if my life revolves around when Outlander and Poldark’s next seasons are coming back on TV? I may be 51, but I still have hopes and dreams. When Connor enters 7th grade this coming fall he won’t get off school until 3pm so I thought maybe I could start a new project or get a part-time job doing something I like. I need to keep my mind busy or it might just explode.

I don’t know.

All I know is that I need to keep positive and keep moving forward.

Where is that cure for EB? We are waiting.

Love & Light,

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Working Toward EB Awareness

Nicky during a bandage change in June 2010

Nicky during a bandage change in June 2010

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 with EB. When Jodi became aware of my son’s condition she wanted to help in some way and she felt a book which depicts the ins and outs of everyday life of my son would be the best way. Parts of the proceedings are donated to the EBMRF.

From the start, Nicky was interested. He wanted awareness, because he knew that without awareness there is no cure. He wanted to do his part.

About a year before I met Jodi, I had started my own photographic documentary (the photo above is one that I took in June 2010), but it proved to be difficult for me to do.  I couldn’t sit and snap as my son was in pain. I just couldn’t do it. As it is, it’s very hard for me to see photos where he is in pain and the book has proven difficult for me to look through. I don’t enjoy it at all. One would think after all these years I would get used to it, but I never have and I never will.

1385655_1673283636278551_5360319257820202874_nIn a recent interview with the “Antelope Valley Press”, which ran on January 3rd about Jodi’s latest books depicting the Veterans, Jodi talked about Nicky:

Champagne’s previous book, “Courage Under Wraps,” was a day-in-the-life portrait of then-16-year-old Nicholas Zahorcak, who has a rare genetic disorder called recessive dystrophic epidermolysis bullosa where the skin is so delicate any type of friction can cause blistering. Nicholas’ condition requires daily wound care including changing bandages, a lengthy process than can take several hours for one bandage.
“I got this overwhelming feeling that I need to tell his story,” Champagne said when she first learned about him.
Nicholas, who recently turned 19, and his mother, Sylvia Corradin, agreed to share their story to raise awareness about the condition.
Champagne spent about a year documenting Nicholas and his mother’s daily routine, including procedures at Children’s Hospital.
“Working with Jodi was easy and even fun. We tried to make jokes to lift Nicky’s spirits up,” Corradin wrote in an email. “The bandage-change routines are usually quite tough, and from the time Nicky was little I felt distraction was always welcome.”
Corradin added it was difficult to have their life documented in such a way. “Even though it’s your life, it’s really strange and hard seeing it in a book like that, but it’s the truth. This is our life. It’s a great book,” she wrote.

There is always an element of sadness to see your son in pain, but I always felt great pride in knowing Nicky was open to this, he wanted the awareness. Jodi often asked him if it was OK with him, that she could stop anytime, but he wanted to push forward.

This is why, when strangers (even people with EB, mind you) come up to me out of the blue and call me “crazy” and other insults I rather not mention nor want to remember, for allowing these kinds of photos to be taken of my son “just to sell some dumb books”, all I can do is lower my head in absolute disbelief. To bring people down that are trying to make a difference is extremely sad. I am not sure if they do that to elevate themselves or feel superior or what. Either way it’s a negative. It is also true that some individuals see their condition as something to hide, something to be ashamed of. Nicky is not ashamed, nor embarrassed the least bit. He wants to make a difference. He should be applauded and loved for the kind of amazing human being he is, not ridiculed.

Love is the answer. Love is always the answer.

Nicky was interviewed 2 years ago by Gina Silva of FOX11 News here in Los Angeles about the release of the book. I uploaded the video on my channel and it was a good thing since they reworked their entire website and it’s nowhere to be found. You can see it below… I have the one about his Pastry Chef day as well I need to post someday, LOL.

Sending love and light

Silvia-ValGirl-DD

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Nicky’s Life Part 27

12080355_405563619641552_4176213483085698028_oOctober 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,

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Spread the Love

214cd735879ae8c0ca415480089ab73eThere 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 wanting to discuss things I don’t want to talk about. It’s really sad. I even had a rule on my EB group that these topics should be avoided at all costs to avoid arguments and tensions. With the advent of social media, however, all decorum has officially been buried. And it’s not a pretty sight.

I remember back in the 80s and 90s, even as recently as 2005, I honestly had no idea what anyone thought about politics. And I miss it. I had no clue what my bestest of friends political leanings were. Lord knows, it’s so much easier to love your friends when they don’t seem so angry about crap they have no control over. Now I see my High School friends go on relentless hateful sprees as I sit in wonder. Do they really have nothing better in their life to be worried about? Something they have some control over perhaps? I’m not sure how to love Facebook friends as they offer up hate. Their next post? More hate. The post after that? You guessed it.

I’ve honestly lost count of all the “friends” and even some family members, that I had to “hide from my newsfeed” on facebook. I really have no time in my life to read their angry and hateful sentiments about the government, their rants about conspiracy theories, or the fights picked regarding Planned Parenthood.  I’m not sure how to offer grace in the midst of frustration and anger. Or when to comment on a post and when to just leave it alone. 100% of the time, when I leave a comment, it’s never, ever received in kind, and who wants to feed the beast anyway? Not me. Not anymore. I am DONE.

No, you will not find any political, religious or abortion rant on my Facebook personal profile or any of the pages I run. There haven’t been any in years. I am trying to just spread love instead of hate. And perhaps something else I can do is pray for grace that others will find some peace and not be so angry all the time. It’s not good for your blood pressure, you know?

And one more insight. If I may. Your anger sprees don’t change a thing. Sure, you may get some ego-boosting from those 50% of your friends that agree with you. You will, however, look bad to the other 50% and they may end up hide you from their newsfeed or even get you unfriended/blocked. Food for thought.

Love & Light,

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Nicky’s Life Part 26

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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, the pain level became so unbearable that we stopped the baths altogether and started either soaking a limb at the time or just change the bandages without soaking. His health hasn’t suffered, he hasn’t had more infections and his pain level during bandage changes has vastly decreased because of it. We do what we must… changing things as we go along. Always thinking outside the box to ensure optimal care.

More of Nicky’s story in the book… Thank you so much for your support!!
http://www.butterflychildamothersjourney.com/?page_id=19

Love & Light,

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The Parent’s Journey

Nothing about Epidermolysis Bullosa is simple — not the diagnosis, not the daily care, not the long term. If you really want to know about my condition or my child's, it’s not a one sentence answerI 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 he enjoyed immensely since a lot of the stories I described happened when he was too small to remember. At times he told me he was happy he did not remember them, too.

Having a healthy child after having a special need one, made me realize that while with Connor as time goes on I can count on him being more and more independent, this is not the case with Nicky. If anything, since the condition is degenerative, he’s becoming more and more dependent on me. With Nicky I have different priorities and routines, and my day has to revolve around his needs. It’s not easy, but it’s a role I’ve accepted completely. I suffer when he suffers, but his laughter is the best sound in the world. I worry about the future, he may be taken from me at any time, so I give of myself completely, at times forgetting about my needs and desires, and while most of the time I am perfectly OK with my role as a mother and caregiver, in few others I do cry. I am human.

In a way, I had to learn to be a selfless parent in a hurry. When he was born, I was thrown in a world that made no sense to me, full of hospitals, doctors, specialists, insurance craziness, medicalese galore… coupled with a diagnosis I could not even pronounce, let alone understand. Who knew one tiny little genetic mishap could cause THIS much damage?

My subscription to any Parenting magazine got cancelled since it was a painful reminder of what my child could not do. I can’t describe fully how it felt seeing another child his age doing things so effortlessly. My dreams and plans were shattered, the future unknown.  As time went on, the difference between him and his peers only widened, and I started turning a blind eye to his peers. I could not compare, I wouldn’t. I refused to. I’ve even refused to compare him to other EB children, since the condition varies so greatly due to so many mutations causing the disorder.

Even so, when Nicky was born, I didn’t grieve. Nicky was alive, unlike his big brother Alex that was stillborn at full term, and I was determined to enjoy every moment. Instead of grieving, I became an advocate instead. Armed with a computer, I researched everything I could, became a self-trained nurse, and a different kind of parent. I didn’t know what kind of parent to be because Nicky was my first “live” baby. Since Connor’s birth, I realized that I became the parent who hopes against hope despite a horrible diagnosis, the parent who jumps out of bed the moment the child calls you even if you were in deep sleep, the parent that wants to believe in miracles.

I don’t know about the future, but I have today. And this is my journey.

Love and Light,

Silvia-Snow-Girl-DD

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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,

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