February 13, 2017

Reclaim Yourself!

There comes a point in your life, usually with age, in my case at least, where you need to reclaim yourself and not put too much weight on what other people think or what our society deems acceptable. I now 1000% know who I am and I came up with...

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February 8, 2017

Inner Strength

Nicky’s inner strength is something I deeply admire. There are times that he still surprises me with his wit, the way he thinks and the way he handles things. He’s such a loving, deeply interesting boy for those that care enough and are lucky enough to get to know him. He...

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January 30, 2017

Our Unique Grief

There is a unique kind of grieving that special need parents live with every single day. Yes, we like to live our lives as normal as possible, but then, SLAM, something happens that reminds us how fragile our children’s lives really are. True enough, my Nicky is beating the odds, he’s...

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January 29, 2017

Nicky’s Life Part 51

June 2001 – Nicky, 4.5 years old @ Stanford just before his dilatation. Following is an excerpt from the Book ‘Butterfly Child’ Chapter 9 “One of the things that turned out to be very frustrating about the move was finding a new Pediatrician. After much research I took Nicky to...

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January 27, 2017

Success Quote

Success is a word measured differently with kids like Nicky. I consider a “great” and “successful” day, when we’ve gotten through a day without choking, vomiting or screaming in pain, or when we can spend a few moments laughing. ~Silvia Corradin   Post Views: 2,757

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January 26, 2017

Frazzled

Please keep Nicky in your prayers… I am a little frazzled this week but I hope I can explain myself better than my mental state wants to allow. One of the nasty side effects of RDEB is that the scarring does not only appear on the outside of the body, but...

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January 22, 2017

Equality

Fighting for the rights of the disabled has been a big cause of mine since Nicky was born. Anything related to him not only to have the basic EB supplies, but for wheelchair access, awareness and the like. I fought really hard for some of these things, and most of...

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January 19, 2017

Special Mommy Chronicles Quote

There are days where I feel I cannot see one more blister, one more sore area that won’t heal. But, what do I do? Run away? I’m the mom, I can’t leave. I am the only person this child has, and honestly, I love him so much, they would have...

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January 18, 2017

Nicky’s Life Part 50

Nicky in Kindergarten, late 2001 – Kindergarten was only “half day” so school started a little after 8am and ended at 11am. The teacher suggested him coming in on Tuesday/Thursday only to get used to it, and if he could handle it, then he could come every day. This was...

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January 17, 2017

Creating Joy

This past holiday season I was in a truly morose mood, but just this past week I talked to someone that gave me a heads up… how we are the creators of our own joy. “You are the one that has to create joy in your life” he said, and...

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January 11, 2017

Just an Italian Girl Living in a California World

I found this website a while back (http://thetruesize.com/) where you could overimpose the size of one country with another, so I took my beloved Italy and put it over California just to get an idea… It wasn’t a big surprise to me to find out the length of Italy is fairly comparable...

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