Alive

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I know for many, the thought of an “afterlife” or the idea that our soul survives is not something they believe in or even contemplate, but for me, it has become an absolute certainty. I’ve lost count of all the little things that have happened over the years that leave no doubt on the subject. Balls of lights in my bedroom, Alex’s photo falling on his birthday, a strange presence laying next to me in bed, feeling as if I was being hugged one night I was feeling particularly bad… and on and on…

I’ve had my share of encounters to know this is not my imagination, and a psychic I went to confirmed a few things without knowing anything about me. I mean, this woman knew the layout of my living room and told me things there was no way she could have known. I guess I feel so alone, and I miss my family in Italy so much that I crave any sort of encounter now, if not alive, then dead, whatever. Anyone will do, seriously!!! I wish I could “converse” with someone on the other side like Elisa does with her son Erik (http://www.channelingerik.com/), her blog has helped me so much.

I was thinking today that perhaps I’d like more interaction from my loved ones from the “other side”. No, I am not going crazy. Or perhaps I am, who knows. All I know is that every now and again, when I least expect it, strange things happen to let me know that someone is there for me. Unseen, unheard, but surely felt.

I was standing by the couch last night changing channels on the TV when I feel a gentle caress on my shoulder. I smiled… thinking it was Connor. He does this sort of thing, although usually he’s not so gentle. I turned around only to see Connor across the room-no way he could have made it that far in that little time. As I was startled thinking “what the heck touched me then if it wasn’t Connor”, the XM radio we have turned on by itself. There was definitely a presence in the room, although I wished I knew who it was. One of my grandmas? Alex? Greg’s mom perhaps? Greg has experienced the XM radio turning on by itself twice, while at the same time the lights going on and off on the treadmill. As he’s asking questions to his mom, the treadmill responds with more lights.

I guess this whole notion that our soul survives on the other side helps me realize that I need to make the most out of this life and never take my health and my family for granted. Every day is precious. I’ve got work to do… love to spread, people to meet, places to see, make some sort of difference.

When it’s all said and done, if all I accomplished in this lifetime is that I loved and took care of my family and raised even a little of EB awareness… my job is done.

Sending love and light to everyone…

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New Book Trailer for “Butterfly Child”

A little update on the book… I am still waiting for a few replies from literary agents… not sure I want to wait much longer. I initiated the process with Lulu, so I am formatting the book to their standards as we speak. I wish I knew someone famous that could get me this book published in a more broad way. Oh well. I guess my real job will be marketing it as much as possible from now on. I will keep everyone posted. HUGS <3

Love & Light,

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This is RDEB

Nicky's upper left thigh as of today

Nicky’s upper left thigh as of today

I don’t take any perverse pleasure posting this picture, but I learned long ago that RDEB (Recessive Dystrophic Epidermolysis Bullosa) cannot be explained, it can only be shown. And even while posting this photo I cannot show how easily the skin peeled off, or how hard it was to re-wrap, as the upper thigh is extremely hard to bandage because the bandages themselves shift and move endlessly.

I am not posting this to evoke sympathy or pity. I am posting it to open a door into our lives to help others understand, to educate and build acceptance for children and adults living with this condition.

Follow Nicky and his journey, living with RDEB here–> https://www.facebook.com/NickyLivingWithEB

Los Angeles News | FOX 11 LA KTTV

Love & Light,

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Living with Epidermolysis Bullosa

Several years ago I compiled several stories from families dealing with EB and I made a book out of it. The result was amazing. Since I will never feel like I did enough to market this book the other day I decided to make a “Book Trailer” out of it to help a little.

Living with Epidermolysis Bullosa has first-hand accounts written by parents and patients who are living or have lived with EB, and was compiled to help people in general understand how it is like to truly live with every form of Epidermolysis Bullosa; from the milder Simplex variants, who are nonetheless not simple to live with, to the more lethal, namely Junctional, whose patients usually succumb to before their first birthday. The stories you will read are from proud parents, or patients and their struggles and how they are coping. Some stories are sad, some are encouraging, and everything in between.

This book is also available directly from the Publisher and also as a paperback at both Amazon & B&N and is also available in the iBookstore in iTunes, and for the Kindle.

Love & Light,

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Bandages, Smandages

If there was one thing I could say that has been the most frustrating in Nicky’s life with EB when he was younger was dealing with bandages.

There was the issue of the cost, where to get them, insurance coverage, what to use, how to wrap, trial and error, the list goes on and on. There was not one place in particular I could go for answers either. Different forms of EB’s wounds react differently depending on what wound products one uses, so if the person suggesting something was dealing with a different form of EB, I learned the hard way (at Nicky’s expense nonetheless) that I had to take that information with a grain of salt. The whole thing was just nightmarish. Who wants their child to be their own guinea pig?

IMG_0002 (2)fskWhen I look at photos of Nicky when he was little I cringe. Oh… dear… God. Why wasn’t I wrapping his hands? Was I really covering a nasty wound with a little vaseline gauze and cover with rolled gauze? Was I really expecting it not to get stuck? Why was I not using more ointments?

It’s so easy to judge myself, but the truth is, at the time I did the best I could with the little information I had and little to no bandages available to me. It wasn’t until Nicky was 9 months old, at our first Stanford appointment, that Dr. McGuire showed me the curled index finger on his right hand which could no longer straighten. 9 fricking months old. I did not even know this was a possibility. No clue. I had no idea hands clubbed. Not only that, bandages were so expensive it threw us into bankruptcy court within a year. It was just fantastic.

There was no learning curve for us, EB hit us right away like a ton of bricks, and Insurance companies refused to pay for bandages for 12 years until National Rehab got involved. For many years to come we survived on donated bandages or, worse, washed and re-used bandages. Doctors frowned at that, but my credit was ruined and I had no money. When we moved to California in 2001, when Nicky was 4 years old,  I had gotten CCS (California Children Services) to foot the bill for the bandages, which followed an 18 month span where Aetna for whatever reason decided to cover bandages and then we were forced to change insurance company so that was that. This issue of bandages was a nightmare, one that was solved only once National Rehab got involved.

I cannot sing National Rehab‘s praises enough. If you are dealing with EB and have insurance, contact them right away. I am as serious as a heart attack. Do it NOW. Talk to Bill. Not only they’ve got us covered, but they also wave the 30% co-pay for us and all EB families. I know for a fact we could not afford to pay 30% of Nicky’s bandages, let alone 100%. Nicky’s life depends on bandages. Until there is a full-fledge cure, bandages are key and nobody can afford this stuff. I don’t even dare look at the bill each month. I know it’s in the thousands. THOUSANDS! It’s insane.

I am not one to complain, but my story needs to be told. This is a HUGE problem, one I know too many families are still dealing with this, whose insurance refuses to pay for bandages. I don’t know what the answer to this problem is, but since I know the US is hell bent in only having for-profit care, Insurances need to realize or be forced to realize that bandages for an EB patient are not a “luxury” but a “necessity”.

I had started a Wound Care Bill petition in 2006 and it never got the 10,000 signatures needed to be presented to Congress. It’s a damn shame. Do you know of a congressman with a heart? Let me know.

Our children suffer tremendously. Is it too much to ask for insurance companies to get supplies to keep them infection free and their skin protected? Sometimes I wonder…

Blessings, Love & Light,

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Ask Nicky (and Connor!) video!

Hello everyone!

Here’s video #2 (Video #1 is here) of our series “Ask Nicky”. My son Nicky was born with the Recessive Dystrophic form of Epidermolysis Bullosa. He is 18 now. In this video his brother Connor (11 years old, EB free) is here as well answering questions. If you have any questions for Nicky about his life with EB please leave a comment below. Don’t assume what his life may be like, just ask! We love questions!

Thank you so much for caring about Nicky!

Love and Light

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