Make America Kind Again

We live in a world that has become overly hateful and judgemental, even plain rude, and to me, it’s a direction that needs to be reversed. If there is an America we need right now is an America that is more kind. More understanding. More willing to give the benefit of the doubt. More willing to try to see the other’s point of view. If we’re not willing to do that, than we need to follow the rule we all learned in preschool: “Treat others the way you want to be treated.” I know people are probably thinking I am talking about politics. I am not. Look, I was not happy with the election results, but I care about myRead More

Rare Disease Day 2017

Today is the international day of Rare Diseases – of course Epidermolysis Bullosa being one of them, it hits close to home. There are about 7,000 rare diseases, affecting 30 million Americans, 300 million people worldwide, but only 5% have treatments, and far fewer have cures. Rare diseases often go undiagnosed, and while a diagnosis per se does not cure the condition, the fear of the unknown is greater. Even when you do get a diagnose, sometimes it’s hard anyways because patients seem to react very differently to treatments. Second guessing becomes a pastime. No one can prepare you for having a rare child. It’s a lonely place to be. A diagnosis will open doors and give you accessRead More

Caring Quote

We never know what people go through behind closed doors that may not share with anyone. Just because they didn’t share their troubles, it does not mean they are fine at all. ~Silvia Corradin Post Views: 28 Comments

Persistence Pays Off

I’ve admittedly been a little frazzled lately trying to get Nicky’s dilatation approved. I kept finding all these stumbling blocks. He’s over 18. His Doctor has retired. The new Doctor is not contracted with the Medical Group. The list goes on, but I realized yesterday that perhaps the biggest thing my son has taught me is that persistence pays off. Never give up. Ever. And it helps to MAKE people understand, clarify the situations to those who, frankly, NEED to understand. Sometimes my struggles in getting Nicky what he needs is akin to being in the water, trying very hard to swim, and lo and behold, there is a bunch of people standing at the shore wanting to help,Read More

Nicky’s Life Part 52

October 1997 – Nicky, 11 months old standing up on the couch. He was so excited! Following is an excerpt from the Book “Butterfly Child”. This happened right around the time this photo was taken: “A few days later, in the evening, Nick and I were watching “Wheel of Fortune” when Nicky out of the blue started throwing up serious amounts of blood. It was a lot more than the previous week; it was a scene out of a horror movie, there was blood everywhere. I was shaking as I was holding Nicky, unable to even remotely think of what to do next. Nick picked up the phone and called 911. Within minutes we had several firemen inRead More

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 these rules for to reclaim myself. Can you relate? 1. PEOPLE’S OPINIONS. I’ve heard enough negative opinions about myself since I was a child that if I let that dictate my daily mood I would be in a pool of tears every single day. No, thanks. I learned that negative opinions have more to do from the person giving them than the person getting them anyway. I preferRead More

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 suffers greatly as well though, and that fact can never be ignored. I took the following pictures this past month to give everyone a small glimpse of what his skin looks like under the bandages. He’s part of the SD -101 cream trial (http://ebstudy.com/) so if you think his wounds look better, it’s because they do. This is his right arm. It’s looking fantastic. I know, I know,Read More

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 very much alive and ready to fight and I am ever so grateful he is, especially since I have so many friends who have experienced the loss of their children, and since I have buried a child myself, I know exactly how that feels. I want to delay that horrible fate as much as possible, while continuing to hope for some kind of treatment to come along. ThatRead More

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 the first appointment and let’s just say this woman was a complete disappointment. Not only she was quizzing me on the minutiae of his care, which made me feel defensive and guilty at the same time, but also she knew absolutely zero about EB – not a surprise there – so why is she telling me I “overwrap” my child? How would she know? She also refused toRead More

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: 32 Comments

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 also in mucosal surfaces, such as the eyes, mouth, throat and esophagus. When Nicky was only a wee bit lad (I am watching too much British/Scottish period drama, I am starting to speak like them!), I noticed that swallowing was particularly difficult. So difficult, in fact that it would take him a few hours to finish a bottle. By the time he was 3 years old, I neededRead More

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 them didn’t come easy at all as some of you that read my book Butterfly Child know only too well. To say that I was made to feel like a leech or a burden on society is a gross understatement. Not “everyone” matters is a message I got, loud and clear. Having said that, this fight that I’ve pressed on for my son to have the same rightsRead More

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 to take me away kicking and screaming. ~Silvia Corradin from the book “Special Mommy Chronicles“   Post Views: 17 Comments

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: 22 Comments