Category : Blog

363 posts

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 all fine and dandy, but …
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 then followed them with examples… …
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 to the length of California. …
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 time I might take him …
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), is my absolute favorite city …
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 patient. Since my only “specialization” …
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. It’s treasuring the little things …
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 devote a morning a week …
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 viewership over reporting actual news, …
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 a bad fall, which denuded …
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 me anything is not to …
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 doing the digitizing per se, …
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 for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love …
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 baby was surely precious and …
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? The man that hates immigrants …
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 guilty about them. I just …
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, so I was a little …
I know I am beating the drum of Epidermolysis Bullosa Awareness every single day, especially on my ebinfoworld.com facebook page, but this cause is very close to my heart and it really needs everyone’s attention. There are so many conditions on this planet, many of them rare, and it’s hard to get the word out …
I can’t let October go by without posting at least “something” regarding either my experience with Pregnancy Loss or at the very least offer my thoughts on the matter either on how I feel more than 2 decades after my loss or the state of Awareness. Am I and are we moving forward? My answer …
August 1997 – Nicky and I on our way to my anniversary dinner…. Nicky looks so spiffy, but despite the smiles, behind the scenes, I was a mess. At this point I was taking Nicky to the Physical Therapist twice a week and she became sort of a confidant; I felt she was one of …
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. Believe me when I tell you, never in a million years I could possibly exaggerate Nicky’s condition. I became the parent who hopes against hope despite …
As EB Awareness week is approaching, I always hear the “numbers” of EB being floated around. One official website states the incidence of EB  is 1 out of every 20,000 births. Another official website states One in about 17,000 live births. Yet another official website states 1 in 50,000. The truth is, most likely nobody knows for …
I am a very spiritual person. I grew up catholic and I have attended service at many different churches from many different denominations, mostly to satisfy my curiosity, so I am very well aware of how incredibly sensitive this issue of religion is. Your beliefs are important and they should never be belittled nor should …
March 2001 – I was thinking about this picture just the other day when we were driving back from Stanford and I was so happy to find it. Isn’t Nicky cute? “Casa De Fruta” used to be just a big fruit stand, now it’s a mini-amusement park, complete with a restaurant, rides and tons more, …