Silvia

January 3, 2017

I Need Something New

So, 2017 is upon us and we’re back to the usual routines. I was looking at my calendar for upcoming appointments and I noticed I have one with my Psychiatrist on Monday as I do once every 3 months to update my anti-depressant meds and I thought that maybe this...

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December 29, 2016

Florence & History

I’ve been real sick with the flu this past week, so I had the chance to finally watch the 8 episodes of Medici: Masters of Florence on Netflix and, let’s just say I was not disappointed. It was a beauty to behold. Glorious. First, let me say that Firenze (Florence),...

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December 22, 2016

Medically Fragile

It occurs to me sometimes that when people in general refer to Nicky or any child with EB as “medically fragile”, they may not truly understand what that means. And the truth is that the definition varies widely not only depending by the form of EB but also from patient to...

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December 11, 2016

Blog Quotes Part 12

Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. There is no sugar-coating EB or trying to make it worse than it is, we couldn’t imagine a worse condition, ever....

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December 9, 2016

Nicky’s Life Part 49

March 2009 – Brotherly Love! Nicky (12 years old) is hugging his little brother Connor (5 years old). So cute!!! I love doing digital scrapbooking but I haven’t done it in a very long time… as soon as I am finished digitizing all my old videos I will try to...

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December 8, 2016

I Chose Sanity

So… ever since the election I decided that my desire for sanity needed immediate precedence over the desire of being well-informed. Being well-informed nowadays, I found out, is almost impossible anyway. With the advent of fake news and the news biz in general being more interested in generating profit and...

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November 29, 2016

Fighting EB Every Day is our “Normal”

As Nicky’s 20th Birthday came and went, I am reminded of so many moments in his life where things were dicey. When I really thought he wasn’t going to make it to his 8th birthday, let alone reach his twenties. When he was 5 years old, in fact, he took...

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November 22, 2016

Blog Quotes Part 11

Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. The past cannot be changed, it can only be accepted. Real friends heal, they really do. If Nicky’s existence has taught...

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November 21, 2016

Baby Nicky

I’ve been working “not exactly diligently” in digitizing all my old VHS & 8mm videos and it’s a tougher project to do that I initially realized. I would have wanted to be done by now but it’s become very hard. I am very far from being done. It’s not hard...

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November 17, 2016

Nicky’s Life Part 48

September 1997 – The Theme for Nicky’s nursery was Pooh as it’s painfully obvious! I love how I set up this photo in his crib with all the Pooh characters. And that smile… it just melts me all over… More of Nicky’s story in the book… Thank you so much...

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November 15, 2016

20 Years

In exactly 10 days Nicky will be 20 years old. I have to let it sink in because not only this is a long time for a child that deals with this severe of a form of this condition (and he’s stable at present), but make no mistake, my rainbow...

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November 12, 2016

Perseverance

I’ve been kind of “out of it” the past several days since the election. The day that followed I was in a daze. I cried and I couldn’t stop. The man that made fun of a disabled reporter was now president. What was I going to tell my disabled son?...

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November 3, 2016

Blog Quotes Part 10

Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. We all have bad days. I want to be able to vent my grief and frustrations without anyone making me feel...

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October 27, 2016

Epidermolysis Bullosa is not a Life Choice. It’s Real & it’s Hard.

Last night, during a bandage change, I barely touched Nicky’s feet and he yelled in pain. I wasn’t touching a wound, mind you, I was simply “gently” feeling his skin. His feet nowadays are mostly healed, and they have been healed for sometime, they really look beautiful all in all,...

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