We are the Experts

“This message is so simple, yet it gets forgotten. The people living with the condition are the experts.” I was reading an interview with Michael J. Fox on a magazine and when I read that line I had to underline it a million times. Not only because it’s true, but because it reminds me that asking my son how he feels or what his pain level is on a daily basis is so crucial. Nicky is a pretty brave individual, and he never truly volunteers this information unless it becomes so over the top painful that he has no choice but tell me so I can give him some pain meds. He’s spoiled me in many ways, butRead More

Nicky’s Life Part 54

July 2013 – Nicky, 16.5 years old, on the deck of our cruise ship as it was approaching Dawes Glacier. Following is an excerpt from the Book “Butterfly Child”. In early 2012 a woman from the Scott Ward-Schofield Memorial Fund contacted me. This Charity was formed to raise awareness for Epidermolysis Bullosa and arrange and pay for holidays, short breaks and special days out for sufferers and their families/carers. I was happy to help this woman spread the word about her foundation and then several months later she asked me if Nicky had in mind a place to go for a vacation. “Oh, I don’t know” I told her. Nicky was having his hand surgery at the timeRead More

NO. Not me.

Yesterday morning I had a Doctor appointment and as I was sitting in the waiting area I struck up a conversation with an older gentleman looking lonely. I normally don’t struck up conversations with strangers very easily, but he looked friendly with his fluffy white mustache, and I love senior citizens as a whole, so we started talking about the desert being in bloom and gardening. When I started telling him about my 86 year old dad and his garden in Italy and about my grandparents’ mini-farm they had in the 60s and 70s he got really silent and then blurted out, without warning, how he would “never” go to Europe because of the “muslim” situation. To be honest,Read More

Blog Quotes

Women are a swirl of emotions as it is and my husband often tells me how on earth we live longer knowing how conflicted we are inside all the time. We are. We are emotional bags and this sort of experience is like a tornado of emotions. Forget tornado, how about a category 5 hurricane? Genetics are hard to explain. Trying to make people understand how my son inherited the disorder when his parents do not have the condition is a challenge. The reason why Recessive Dystrophic EB has the world “recessive” in the name is because this is a recessive gene, a gene that lies dormant unless it’s paired with another recessive gene, so one of themRead More

In the Business of Caring?

I grew up in Italy, so this whole thing about needing “Medical Insurance” is still a bit baffling to me, even though I’ve lived here 2/3 of my life. The more I learn about Health Care in Italy the more I like it. I can’t help but compare what Insurance Companies put me through, forcing me to declare bankruptcy twice over medical bills they refused to pay, with similar circumstances from friends and family in the old continent. My cousin’s husband who lives in my hometown in Italy, for example, had a stroke late last year. By all accounts it was even worse than what my husband suffered several years ago. But instead of receiving automatic continuous PhysicalRead More

Quote on Being Supportive

We are all ill equipped to judge situations we know nothing about. What we can do is be supportive. Listening is the most important thing I tell everyone to do. Offer to help, acknowledge, respect. ~Silvia Corradin Post Views: 151

I Won’t Be Less

I remember clearly this girl on the right. I was painfully shy. Painfully. So painfully so that in third grade, when asked a question about geography, I didn’t speak because I was afraid to be wrong. I wasn’t wrong, I had studied all day before, but when I was asked this question in front of the class, I froze. My shyness got me an F. I was mostly a quiet child not only because of my shyness, but also because I was taught by various teachers and other people in my life to be quiet. To be less sensitive. How many times my elementary teacher made fun of me for crying? I lost count. I was 11 years oldRead More

Nicky’s Life Part 53

December 1998 – Nicky, 2 years old, showing off his straight ‘new’ hand after surgery. Following is an excerpt from the Book “Butterfly Child”. The hand itself, thanks to my hellish efforts did heal up straight, but for a while there I thought it wouldn’t. As wonderful and caring the hand surgeon was, he just could not comprehend my paranoia in making sure the hand healed straight. The problems with the scar tissue that covered Nicky’s hand before the surgery were many. Scar tissue does not breathe and it has no oil glands, that’s why it looked so bad, it’s very dry and squams constantly. One other big problem with scar tissue is that it does not “grow”Read More

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: 164

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: 132

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: 86