Nicky’s Life Part 5

This is part 5 of an infinite series of photos I am posting on 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.

Summer 1999 – Nicky was 2.5 years old here. This is about the time I started taking photos of Nicky’s blisters, and I only did that so I could accurately explain what was going on. By then, so many were trying to minimize Nicky’s condition, stating that they got “blisters” or wondering if Nicky got rashes, comparing it to severe eczema. No, I would tell them. This is a blister that grows and grows and leaves behind a deep wound… so I started taking photos. EB is one of those conditions that needs to be seen to be understood. Nicky still gets these, always.

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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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EB Still Surprises Me.

One would think that after 18+ years, nothing about EB would surprise me anymore. Well, it does. EB still manages to shock us at what it can do and how it manifests itself.

Last night as I was taking off a bandage from Nicky’s upper left arm, it looked as if an infection (pus) was setting in a wound-but not in the usual way. Normally the pus (I know, yuk, but EB can be just majorly yucky) fills up a blister, or it colonizes a wound, but this time it was different. It looked like it managed to infiltrate itself way under the skin somewhere, so the pus had to be “squeezed out” of this little hole. WTF? Nicky wasn’t even phased. It hurt, yes, but he reminded me how it’s the same way on his left foot.

What’s happening there is also quite bizarre. It’s hard to see in this photo, but basically the pinky toe has webbed in with the rest of the toes, but there is still this little separation from the separation of the pinky toe and the toe next to it, and many times an infection builds up inside that little hole which I have to squeeze out and fill it with topical antibiotics. Of course squeezing anything on Nicky’s skin is a tricky, tricky thing. I have to be gentle, yet firm… and it’s quite painful for Nicky.

In this picture is healed-the “white residue” is what remains of my white “concoction” that I use to heal Nicky’s wounds, which is a combination of diaper rash cream with 40% oxide and many other products (I talk about it in my video here: https://www.youtube.com/watch?v=xjG1_2RBtAM). It’s been OK for some time now, but every now and again, it fills back up.

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Now, Nicky has RDEB-HS, and other “weird” EB stuff that have surprised us at time include nails growing out of a knuckle (no lie), miscellaneous bizarre webbing, such as the one of his belly button or inside his esophagus, and a weird wound of which part of it could be lifted off on the side. Sometimes I feel there is no rhyme or reason for things, Nicky and I study the bizarre thing in question, deal with it, sometime even laugh and take care of it the best way we know how. OK EB, you’re just weird! You got us that time, LOL.

At best I try to keep a sense of humor about it all. Laughter is the best medicine. I feel that as long as Nicky is pain free and stable we’re OK. Living one day at a time, as always…

Love & Light,

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Nicky’s Life Part 4

nicky_skThis is part 4 of an infinite series of photos I am posting on 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.

June 1998 – Nicky on my parent’s balcony in Italy. I was meticulous in keeping his skin covered to prevent new blisters and I used to always try hard to keep his hands protected by putting these gloves on. By then he had permanently lost all his nails, but the gloves didn’t prevent the scarring that would cause the webbing and contracting of the fingers. I just didn’t know any better back then.

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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Everyone Matters

11082512_10152639170026512_4249512671573074696_nSometime ago I decided not to be angry anymore.

I didn’t want to be angry at EB and what it was doing to my son.

I was done blowing my lid over things I had no control over.

I was tired of being depressed all the time.

I was tired of being overwhelmed.

I was done with all of it.

I wanted to smile. I wanted to be happy. But how could I?

I was on a journey.

I was also tired about being offended at stupid crap that did not change my day to day life, and also done with defending my point of view about things. My beliefs are my beliefs, I don’t need to get into an argument with someone nor belittle anyone else for not having the same beliefs. This also meant I didn’t need to shout my beliefs through the rooftops to make sure they were heard. I no longer really cared who heard them. It mattered little who agreed with them or who didn’t. I also refused to hate anyone that did not have my same beliefs, which could be social, religious, political, or in any other form you can imagine.

Hatred had to have no place in my heart whatsoever.

I wanted to be known for what I loved, not for what I hated.

After my near-nervous breakdown 5 years ago I realized one simple thing: Everyone’s life matters. Everyone.

The life of disabled children matters.

The life of a baby that was stillborn or lived a few hours or days matters.

The life of poor people matters.

The life of anyone in the LGBT community matters.

The life of anyone on life support matters.

The life of anyone, no matter where they live, matters. To that point, the life of an “illegal” matters. An illegal is not an alien. It’s a human being in either devastating circumstances, or looking to improve their lives, which apparently were pretty bad if they choose to uproot. Or maybe they had a dream? Why would anyone hate dreamers? People of all nationalities live everywhere around the world. Americans live in Italy and Italians live in America. Millions of people have uprooted their lives to move somewhere else during the course of human history, starting from Homo Sapiens “invading” Neanderthal territory. It’s human nature. It will always happen. This is why my dear husband is mutt #23, with an ancestor in every country in Europe. It’s the story of our species.

I am not perfect, far from it. I am a work in progress, and I do relapse every now and again, but now I do catch myself. Anytime a thought about hatred surfaces, I stop it. Like a muscle, it gets stronger by using it.

As AD Williams stated so eloquently: “Imagine what seven billion humans could accomplish if we all loved and respected each other. Imagine.”

Love is the answer, no matter the question.

Namaste,

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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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