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 all fine and dandy, but how was I going to just “drop him off”? I had written an extensive sheet of “what to do in case…” for the teacher and the staff, but still, nobody here knew anything about EB, so I resolved this issue by starting to go to school with him and kind of “hang out” in the background, helping him if he needed me. TheRead More

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 then followed them with examples… trips, events and the like. I had to think about that for a moment, a day, a week. I’ve always been the one that creates “moments” in my family’s life, but it’s difficult to think of “fun” things to do with my son. He never wants to go anywhere because it’s so hard or it’s too hot and It’s difficult to create moments when theRead More

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 to the length of California. Italy is long~! I am often asked how different is living in the US compared to living in Italy… actually the most common question is “which one is better”, and I am always at odds answering that question because it’s not really a matter of “what’s better”, since each have their good and their bad, a lot has to do with the culture,Read More

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 time I might take him up on talking to the therapist as he suggested if I ever felt the need to. Why? I am not really sure. On one hand I feel fine, on the other, I feel as if I am losing the “jest” for life. This was the first Christmas that I took forever to put up the Christmas tree or the nativity scene… I didn’tRead More

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), is my absolute favorite city in the entire world, bar none. Not that I have seen the entire world, mind you, but the moment I set foot on this city in 1980, during a school trip with our History Teacher, I felt different somehow, transported. I was 15 at the time and the one thing that I still remember clearly about that day is the amounts of deja-vusRead More

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 patient. Since my only “specialization” is with Nicky himself, I will attempt to clarify what that means to Nicky being called “medically fragile”, which may not be far from describing the experience of other RDEB families. Let’s start with the acronym itself before I go any further to explain why this condition is so rare: RDEB = Recessive Dystrophic Epidermolysis Bullosa. It is called “Recessive” because it’s inherited recessively,Read More

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. It’s treasuring the little things that inspires to greater things… and it is the little things that make life worth living. I have a child that loves me more than anything, he is kind, compassionate, polite and an inspiration to anyone that meets him. When that storm hits, grab that umbrella and be kind to yourself, because life goes on. Maturity is patience. It is the willingness to passRead More

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 devote a morning a week doing this again. So much fun! How cute is this brotherly love page? I love, love, love my babies. More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 97

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 viewership over reporting actual news, it seems to me that our society, at least in the US, is in serious decline. Nobody knows anything anymore. People believe everything they read or see on TV. I suppose I should resort at getting my news from sites like http://www.politifact.com/ or http://www.factcheck.org/ but it’s exhausting to keep up. It truly is. I have better things to do with my time than looking aroundRead More

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 a bad fall, which denuded both his legs of skin from his knee to the ankle. His knees and ankles were already non-healing areas by then. After 2 years of trying everything under the sun to get his legs to heal, I was at my wit’s end. Not only his health was spiraling out of control as his infections were at an all time high, his spirits wereRead More

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 me anything is not to judge situations I’ve never been in. The only thing I can do is be there for that person with an ear to listen and arms to hug. It’s hard to have hope when there seems to be no light at the end of the tunnel, knowing that even if a light might be in our peripheral vision, it could very well be anRead More

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 doing the digitizing per se, that part is very easy. I connect the video camera (or the old VHS player) to the computer, start my little program, then press play and voila’. I leave it to do the job for itself. I have a Mac & I use something called VIDBOX and it works very well. After I am done I upload the video to YouTube, making theRead More

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 for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 100

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 baby was surely precious and wanted and cared for in ways I am not yet sure I managed to ever master. Yes, I am still learning. Nicky didn’t come with an instruction manual, and since every child with EB is different, even if I had had a manual, I am not sure it would have helped much. Nicky is most certainly unique and I know my style ofRead More

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? The man that hates immigrants was now president. I am an immigrant. But I am white, so I’m OK? Right? If I was “brown” I would not be, I would be garbage. I could go on. Health Care & Women’s Rights are at stake, including LGBT rights, provisions for climate change and sensible gun control and many other things I hold dear that should be a “given” inRead More

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 guilty about them. I just want people to accept the fact that caregivers have feelings too and all we want is acceptance and understanding. EB is one of those conditions that is indifferent to race or gender, equally present in all populations on earth. Just because a condition is rare, that does not mean that people don’t suffer from it. There are millions of people that suffer fromRead More

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, so I was a little perturbed. In truth, for the past several months – or years – Nicky won’t let me touch his feet at all. If there is a wound or a scab to clean or anything else he insists on cleaning it himself. I don’t mind at all, yes, please do it, ha ha. I asked him what is the matter with his feet though, andRead More

EB Awareness Week 2016

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 often because our voice can drown in the sea of worthy causes. The rarity of some like EB, however, makes it very unlikely that enough money is raised to find for a cure. Let’s face it, investigating EB in not exactly an attractive proposition to giant companies who make money by alleviating human suffering. The more common the condition, the more money they make. ItRead More

October is Pregnancy & Infant Loss Awareness Month

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 is YES. The other night I was watching this show called “This is us” and this is the clip that sent me over the edge….: I was a mess. A total and complete mess. Even after the show ended I could not stop sobbing. My 13 year old son Connor came up to me a little while later, and not knowing what IRead More

Nicky’s Life Part 47

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 the few people that might have answers to a question I was constantly asking myself: ‘Is this normal?’ It’s just the nature of having a child with a disability and not having another child to compare him to. Sometime it was normal, but most often it wasn’t. I was determined to give my son a quality of life that was as high asRead More

Blog Quotes Part 9

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 a horrible diagnosis, the parent who jumps out of bed the moment the child calls you even if you were in deep sleep, the parent that wants to believe in miracles. As time went on, the difference between him and his peers only widened, and I started turning a blind eye to his peers. I could not compare, I wouldn’t. I refused to.Read More

Epidermolysis Bullosa by the Numbers

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 “sure”. I am telling you this because I remember quite clearly a gal that was a waitress at an EB event who then went to the organizer to tell her afterwards that she thought she had EB, how her feet always blistered and nobody knew why. She later found out she indeed had EB. This happens because the genetics of EB are so uniqueRead More

Raise Your Standards

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 you ever be questioned about them.  It’s because of this that I am just very surprised when people start “bragging” how they prayed, and their illness either vastly improved or even disappeared. Please don’t misunderstand me. I do not think it’s bad to be thankful, nor I think it’s impossible for any prayer to get unanswered. As a matter of fact, gratefulness isRead More

Nicky’s Life Part 46

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, between Gilroy & the San Luis Reservoir. We almost always stop, it’s on our way! Nicky here was wearing his little soft slippers, back when he would have no problem wearing long pants and jackets. Things are very different now. 🙁 More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 84