Category : Blog

368 posts

The other night I was changing the bandages of Nicky’s lower back and to my dismay, in the attempt of healing the area, the opposite happened. It’s now worse than it’s ever been. The whole area is a BIG open wound. Ugh. It’s always a shock to me that I can even do this. Before …
August 1997 – Nicky here is 8.5 months old and with my help he can stand up. At this point his feet were not too bad so he could put some weight on it. Plus, he was not that heavy! This is key and one of the reasons why nowadays it’s painful for him to …
From my book “Butterfly Child“: “For a long time I told myself that things would get easier. It was going to be easier once he sat up, or when he was out of diapers, or when he turned 10, but I had been duped. The wounds were bigger, nastier, took longer to heal; the limbs …
As mothers (and fathers!) we have children for many reasons, none of which include seeing our babies in pain for decades nor burying them. The death of a baby is a scarring event, make no mistake about it. The thing that haunts me the most is that it’s so final. There is no hope to …
Everyone in my family knows how obsessed I am about genealogy. Completely obsessed! So it should come as no surprise that one of my favorite TV shows is “Who do you think you are“, who just wrapped up another season on TLC. Up until this past season, my favorite episode hands down has been the one …
“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 …
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 …
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 …
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? …
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 …
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
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 …
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 …
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 …
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 …
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
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 …
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 …
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 …
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, …
I find peace knowing Nicky touches lives in his own unique way. Inspiration itself is a great achievement. ~Silvia Corradin
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 …
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 …
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