Blog

December 16, 2015

My “Concoction”

For the past few years now I’ve been mixings things up to put on Nicky’s wounds and I do believe I have a good mixture of ingredients now that has helped his wounds in ways no other single item has before. It all got started a couple of years ago...

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December 11, 2015

Don’t Compare. Never. Ever.

When I was a teenager in the late 70s and early 80s, the hardest thing for me to deal with was being constantly compared to others. As a young woman, I was far from being popular, athletic or confident, and people around me made sure to let me know about...

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December 10, 2015

Nicky’s Life Part 22

August 2011. This picture always makes me smile! We were at Universal Studios and it was majorly HOT. Nicky is always hot anyways and has a fan on him at all times because he’s covered in thick bandages. We sat in the Tour area and there were a ton of...

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December 7, 2015

Nicky’s Big Brother

I don’t talk much about Nicky’s big brother Alex in this blog. Alex is my first baby that was stillborn at full term in March 1995. I may not talk about him, but he’s always on my mind. His loss is something I will carry with me forever. His absence...

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December 3, 2015

Nicky’s Life Part 21

June 2010 – Nicky and his little brother Connor at Camp. Nicky was having one of those “corneal abrasions” we totally despise. As I write this he’s having another one. That’s when he somehow scratches his eye and it’s extremely painful and it takes a few days to heal. When...

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November 29, 2015

Coping

A lot of people often ask me how I cope and how I move forward every day. The answer is… if my son can cope and endure, who am I to complain? The backstory of the quote below from my book “Butterfly Child” is an event that stayed with me...

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November 25, 2015

A Thanksgiving Birthday

I am in a giddy mood today (hence the cartoon). Nicky turns 19 today. Wow. Happy Birthday Darling! Ever since he was born we celebrated his birthday on Thanksgiving day because it’s so much more fun when we bring out the cake and the gifts while everyone is actually here....

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November 22, 2015

…and the truth of the matter is…

I don’t often talk about Connor in my blogs, but I will today, among other things I just need to get off my chest in the nicest way possible. 😛 I truly feel that the unsung heroes in the special need family are the siblings. Because Connor was born after...

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November 19, 2015

Nicky’s Life Part 20

June 2009 Nicky with one of the Ducks one of the moms makes for all the campers. Nicky has many ducks at this point, since he’s been going to Camp Wonder since 2003. To read more about the story behind the Ducks, please go read Amy’s story HERE! He graduated...

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November 17, 2015

Who We Are

My little sister was a big surprise in our family. One could say she is and always will be our greatest blessing, one that, however, my parents were not planning on. This meant that from the time she was born our vacations had to be… ahem. Cheaper. So, every year between 1973...

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November 12, 2015

Nicky’s Life Part 19

August 2008 – Nicky at the beach. It was not exactly a fun day for him. After a while we had to make sure he was under a big umbrella with a wet towel around his neck. At one point he inched closer and closer to the water, so that...

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November 10, 2015

Are We Not In This Together?

Doing genealogy as a hobby has taught me the fact that not many generations ago, people didn’t move, and if they did move, it wasn’t very far away-maybe a day’s walking distance. Generation after generation, my dad’s family lived in the same little village in Italy for centuries. CENTURIES! My...

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November 9, 2015

You Know You’re an EB Parent When…

When you can make a Doctor say “Huh?” You have enough paperwork to wallpaper your house. You own more scissors that is either reasonable or anticipated. When you know more than the real doctors do about your child. When you think it’s a good day if you don’t see any...

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