Survival

wild_lockerdome_comFinally… yes, finally someone makes a movie from a book about survival I can sink my teeth into.

I knew when the movie “Wild” came out that I wanted to see it. I rarely go to the movies anymore (once or twice a year at best) so as soon as it was available on Netflix it was sitting in my mailbox.

I will preface this by saying that this is exactly the kind of book I live for-stories of survival. I am not your novel kinda gal, save for Outlander, I guess, but that’s more an exception than a rule, and it’s only because I am so obsessed about the TV series.
I’ve read many books that dance around the subject of survival in many ways, which help me a great deal and I find fascinating, from biographies to true stories of people that literally survived against all odds. My favorite one was from Henry Orenstein and his survival of the holocaust. I still cannot believe nobody made a movie out of that one. Shocking, truly.

When I heard about “Wild” I was intrigued. I also knew that I could not read the book BEFORE I saw the movie and I knew I was going to see the movie, so I started reading the book today after seeing the movie this past weekend and I am already liking it. I suppose the big question for me delving into this story is how walking for 94 days help anything besides giving you killer thighs, calfs to die for and a svelte figure?

Then I remembered something that is just at the core about being a woman. We just have to think about stuff. We have to think about each nuance, each detail, each minute little thing that is eating at us and it takes time to put stuff into prospective. It’s the self-introspection that walking alone for 3 months will do to you. One foot in front of the other, the only thing you CAN do is think… And it’s much better to do this journey of one’s mind while seeing the scenery continuously changing around us than sitting around in a room crying. I totally get it.

Unfortunately, this is the kind of soul-searching journey I cannot do. I have people to care for. I can’t just leave for 3 months. It matters little if I was hiking the PCT, which is in my backyard, or the Himalayas. I can’t get away like that. However, reading about what she went through perhaps might be useful to me, somehow.

Always searching for a way to deal with things, I guess…

Love & Light,

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Nicky’s Life Part 3

11048744_352891751575406_1961858747843453613_nOn the Facebook page I have for the book I wrote about my journey raising a child with RDEB called Butterfly Child, I am posting a few images from Nicky’s life and commenting on either what was going on at the time or explaining things about the picture per se.

This “picture commentary” will serve as a companion for anyone that is kind enough to purchase and read my book as my appreciation and thanks.

April 1998 – Another baptism, this time in Italy in a catholic church. Nicky looked spiffy :-) I was happy if only because my whole family was there, including several cousins. That meant a lot to me!

Here’s the link on where to purchase the book if interested:
http://www.butterflychildamothersjourney.com/?page_id=19

Love & Light,

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My Top 10 Dalai Lama Quotes

There are only two days in the year that

I’ve been a quote freak since I met an inspirational young woman on a flight to Italy in 1993. Quotes have helped me so much during my own life to deal with things I even share them on my Facebook Page called “Sleeping Angel“.

The Dalai Lama is one of my favorites… he’s some of his best wisdom. Enjoy! :-)

1. If you think you are too small to make a difference, try sleeping with a mosquito.

2. If a problem is fixable, if a situation is such that you can do something about it, then there is no need to worry. If it’s not fixable, then there is no help in worrying. There is no benefit in worrying whatsoever.

3. There are only two days in the year that nothing can be done. One is called Yesterday and the other is called Tomorrow. Today is the right day to Love, Believe, Do and mostly Live.

4. We are visitors on this planet. We are here for one hundred years at the very most. During that period we must try to do something good, something useful, with our lives. if you contribute to other people’s happiness, you will find the true meaning of life.

5. Use your good common sense. Is anger useful? If you get angry at someone, the result is good neither for you nor for the other person. Nothing helpful comes of it. In the end, anger does not harm others; it hurts yourself.

6. There is a saying in Tibetan, ‘Tragedy should be utilized as a source of strength.’
No matter what sort of difficulties, how painful experience is, if we lose our hope, that’s our real disaster.

7. Be kind whenever possible. It is always possible.

8. Remember that not getting what you want is sometimes a wonderful stroke of luck.

9. Feelings of anger, bitterness, and hate are negative. If I kept those inside me, they would spoil my body and my health. The are of no use.

10. The interesting thing about greed is that although the underlying motive is to seek satisfaction, even after obtaining what you want, you’re still not satisfied. It’s this endless, nagging desire for more that leads to trouble. On the other hand, if you’re truly contented, it doesn’t matter whether you get what you want or not. Either way, you remain content.

Namaste’!

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Nicky’s Life Part 2

On the Facebook page I have for the book I wrote about my journey raising a child with RDEB called Butterfly Child, I started posting a few images from Nicky’s first years and commenting on either what was going on at the time or explaining things about the picture per se. As time moves on I will move on as Nicky ages.

This “picture commentary” will serve as a companion for anyone that is kind enough to purchase and read my book as my appreciation and thanks.

This is the second one I posted in late April and this is what I wrote below:

September 1997 – This is the day Nicky got baptized and dedicated at his Nonna’s church (yes, the gorgeous lady next to me is Nicky’s grandma, his dad’s mom!) in Alamogordo (NM). The priest picked him up by his armpits and I just about had a heart attack! Thankfully he was well padded/bandaged under his clothes so he didn’t get hurt at all. Phew! Despite it all, it was a beautiful moment…

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Here’s the link on where to purchase the book if interested:
http://www.butterflychildamothersjourney.com/?page_id=19

Love & Light,

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I am Beverly Goldberg

snuggle monsterNicky has a new favorite show as of late, it’s the 80s revival show titled “The Goldbergs” and when I asked him why he liked it so much (I know why I like it… it’s all that 80s stuff!) he told me it was because… well, Beverly Goldberg is me, I am her. We are one and the same. “Really?” I asked him… “Yes, really”, he said, giggling.

It really wasn’t until he told me this that I had to stop and think about it. Hmmm… Ok, so, we’re both blondes. Check. We both love snuggies. Check. We both will walk through coal for our kids. Check. While I do think she’s a little over the top-still, it dawned on me that the Principal at the Middle School Nicky went to was afraid of me, so… hmmm…

I can also relate to the fact that Beverly is trying to get kisses and snuggies from her teenagers, which can be a tricky thing. Connor, at 11.5 years of age, is distancing himself and it’s just crushing to me. Sometimes if he can’t sleep on a night when his dad works late, he will come to my bed and he snuggles with me until he falls asleep. I cherish that. I enjoy every morsel of it, because I know that only too soon he will do just about anything BUT come and snuggle with mommy. Of course I will always have Nicky, but with his EB and all, while he will never in a million years refuse a snuggle and he even requests them, I can’t really hug him tight like I would like to.

Just recently I started a “passage fee” or “thank you fee” for anything, especially with Connor (although my husband enjoys this as well). My fee is a kiss or a snuggie. Yes, Connor, I will sign your planner, but I need my “fee” first. Here’s your dinner Connor, where is my “fee”?

CEbmhoPW8AA69Z-I guess there are worse things of being Beverly Goldbergs, and that is a mom who doesn’t care, right? That will never be me!

Snuggies everyone!

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Nicky’s Life Part 1

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On the Facebook page I have for the book I wrote about my journey raising a child with RDEB called Butterfly Child, I started posting a few images from Nicky’s first years and commenting on either what was going on at the time or explaining things about the picture per se. As time moves on I will move on as Nicky ages.

This “picture commentary” will serve as a companion for anyone that is kind enough to purchase and read my book as my appreciation and thanks.

This is the first one I posted in late April and this is what I wrote below:

August 1997 – Nicky was 9 months old in this picture. It was so hard to give him a bath even back then. I resorted in inflating a little soft tub with a towel at the bottom for softness and just doing it in the bedroom so I could easily take him out without hurting him. The damage to his hands is quite evident. He already had permanently lost quite a few fingernails. Precious and adorable, my little warrior!

Here’s the link on where to purchase the book if interested:
http://www.butterflychildamothersjourney.com/?page_id=19

Love & Light,

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Empathy Matters

I wrote about this subject before, but today I came across this website that made me laugh out loud… mainly because their message spoke to me. Take a peek at these sympathy cards by Emily McDowell, here’s one on the right —>

It goes without saying that if I had a dollar for every random treatment for EB people have tried to sell me I would be a very rich woman. And I am the kind of mom who is flipping DESPERATE and will try just about anything, yet some of the emails with suggestions I’ve gotten over the years border on the absolute ridiculous, bordering on insanity. Want an example? “Burn his skin, it will regrow without EB” someone told me once. I have many more examples, but I will spare you. Trust me, this stuff just can’t be repeated.

Some advice, on the other hand, is so bottom of the barrel basic they leave me wondering if they think I am a moron. I still giggle when I hear of people suggesting “lots of water” or “prune juice” when I describe Nicky’s serious constipation problems. Nah… water? Why did I never think of that before? At least it’s good for a giggle, which I can certainly use these days.

And when people try to minimize yourI suppose the main issue that I struggle with day in and day out is the fact that I want to convey the truth that Nicky is in pain. Nicky goes through stuff that can’t easily be solved. What works for a “normal skin” person, just does not work for Nicky.  I just want Nicky’s pain to be understood and acknowledged, because is real, it’s important. And not only Nicky’s or all EB patients, but everyone with any sort of illness, even mental illness. Depression is real, physical pain matters and when it’s minimized it’s truly a disservice to ourselves. And by that I do not mean that it’s okay to wallow in pity for ourselves. That is not good either. When someone is in pain of any kind, lend a helping hand, a crying shoulder, a kind word. Ask them “what can I do to help”, I promise you that helps more than any advice in the world, it really does.

If I can leave you with any message today, just know that Empathy Matters. It really does.

Love and Light,

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“Losing Alex” FREE for Mother’s Day

IMG_0072forframe_sMy book “Losing Alex” is FREE for Mother’s Day Weekend for the Kindle! It is roughly the first two chapters of Butterfly Child – A Mother’s Journey​ and it entails my journey of loss that proceeded Nicky’s birth.

If you don’t have a Kindle it’s OK, Amazon has FREE Kindle reading apps for your smartphone, tablet or computer.

Thank you for your support and Happy Mother’s Day to all Moms, especially those whose child they can no longer hug.

Get it now! http://www.amazon.com/Losing-Alex-Silvia-Corradin-ebook/dp/B00ARZF6ZW

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