Nicky's EB Info World ~ Featured EB parent: Silvia

As some of you many know, I was born and raised in a little town in Northern Italy called Ivrea. Ivrea is about 30 miles Northwest of Turin, the 4th largest city in Italy. Ha ha, yes, 9 times out of 10 I get this blank stare... most people have no clue where Turin is, LOL, but they hosted the 2006 Winter Olympic Games!! Turin is also the official home of the Holy Shroud.

I came to the US one April day in 1982 to visit and spend some time with my aunt in New Mexico, I was 17 years old. I was only supposed to stay for a little while...but... as life would have it I am still here now! At any rate, to make a long story short, after a high school diploma, stints to work in the travel industry and a brand new career in the food industry, I married Nick, which was the son of one of my aunt's friends, in 1988. I wouldn't start working in the Computer Industry until 1992, and I am still at it :)

At any rate, that is about as brief as a background as I can make it before I start my spill about my journey to motherhood. It has been a roller coaster ride, and not even remotely what I had imagined growing up.
This is LOOOOONG, so, brace yourself. Get comfy, grab a cup of

and read on! You will feel different about many things once you're done reading this, I promise!

My first positive pregnancy test was just a few days before my 30th birthday. To say I was happy it's the understatement of the year. I had wanted children forever and I had even gotten to the point of crying hopelessly when I heard of yet another friend getting pregnant. Finally it was my turn... yeah! The pregnancy was totally uneventful, and it was a boy! Just what I wanted. I was walking on a cloud for the entire 9 months it seemed. I had never been happier. But that happiness would soon turn to total despair. On the day Alex was due, February 26th, 1995, I could not feel him move, I didn't even feel pregnant, it was weird. I could not call the Dr. because it was Sunday, but I was so naive the thought that the baby was dead did not even enter my mind. On Monday morning first

thing, I called the Dr, and when I went in to hear the heartbeat I got the worse news any parent could ever get. The baby was dead. At this point I will just say it was the most surreal experience I have ever had in my life. I cannot say it was horrendous, simply because I will treasure those moments I held him in my arms for as long as I live, but it was horrendous to survive and get through the pain. I cried a million tears during the year that followed, sometimes I feel as if I've lost that entire year, because all I did was cry and grieve. During that first year I lost count of all the times I started crying when a certain song came on the radio or when I saw other women with babies, it was simply the most heart wrenching thing I ever lived through. It took a long, long time to learn to accept his death and move on. I read somewhere that acceptance of grief is like having a pebble in your shoe. You just work it and work it until it's at its most uncomfortable spot...and you keep walking. How true! Acceptance does not mean that you 'forget', but, rather, that you find it a place in your heart, that you no longer wonder of the whys and the ifs and that it becomes part of you. He will always be part of me. I will always think of him as one of my children.

Just when I thought I was getting better I miscarried, and that threw me in a worse place than I was before. Sometimes I've described those times as being suicidal, but I would never take my own life. Rather, I now know why people do, and that is a really scary thought. It is the most hopeless state I've ever been in.

Dealing with people in general was by far the hardest thing I had to face. A lot of people said a lot of things that they thought were helpful...instead proceeded in making things worse. The most hurtful comment I received by far had to have been when I was put down and ridiculed for being jealous of this other mother's baby being born alive. Yes, I was jealous. Was I horrible for feeling this way? No, not in my newly found view of life and things. I felt I had every right to be jealous, I had a right to grieve and a right to feel cheated, after all, I had been through a horrible blow, the worse kind of loss anyone can ever have. I had also been through the 9 months and the happiness behind it, the baby shower, the crib ready and the diapers bought, the labor, the pushing, of COURSE I was jealous that they got to bring a baby home and I had to buy a casket and a cemetery plot. This showed me how absolutely insensitive people can really be. Unfortunately, this would not be the only time someone would made me feel like I was a horrible human being for being jealous...but, more on that later.

My third positive pregnancy test happened on an Easter day 1996. This pregnancy was a whole lot different than my first, basically I was worried out of my mind that the baby would die at anytime. Since I lost 2 pregnancies, one at 8 weeks, and one at 40, I felt there was no "safe zone". I made sure I was induced as early as I knew the baby was considered "full term" (37+ weeks), so, one November day I went to the hospital to get induced. We, as most EB parents, had no clue anything was wrong with the baby, so we were going with the flow, just making sure this little guy would come out alive. Coming out alive he did, via c-section on November 25th, 1996. Click Here to read his whole birth story. I will never, ever forget when I first held him in my arms, the first and only time I thought he was completely healthy. He was so precious I did not want to let go. It was a very special moment. It would only be 8 hours later that, in a fog, I was told from a dermatologist that came to see Nicky, that he had EB. At this point I had not seen any blisters yet, so I thought... so what, so he blisters easily, big deal, he is alive. In the next few days and weeks, and months, and years I would unfortunately find out what a really BIG deal EB is indeed.

Nicky is such a precious, loving and special child. But it is incredibly painful to see his boo-boos, which can be quite extensive. So far the worse event has been when I accidentally stepped on his hand, degloving it (taking off the skin of the ENTIRE hand). But other incidents, like the throwing up of blood, the almost constant skinless elbows/knees and bottom, and the surprise huge blisters, have all thrown me in despair. Everyday tasks, like a simple diaper change is a nightmare. Baths are awful. He cannot take a bath completely naked due to his many wounds, and when I take him out of the bath I cannot touch him with my fingertips because I have caused many blisters that way. I have to use my arms, and then I have to change all his dressings, some of which might be "attached" to the wound...blah!! Sometimes I don't even feel like a mom, I feel like I am a reluctant nurse. I don't want to see my baby in pain, I don't want to see his blood. It is very, very hard to put a face sometimes. Even if I did not cry as hard as I did with Alex, the pain has been there every single day, because it is every day that Nicky cries out in pain from a blister or a boo-boo. But he himself is the one that keeps me going. Always smiling, always laughing, always hugging. He is the most precious, loving boy. How I wish I could do simple things with him, like picking him up under the armpits, throwing him in the air, let him run around naked...the list goes on and on. I do believe that, one day, he will become an incredible person. Because he already is.

And so it happened again just recently that somebody made me feel like I was an absolutely awful person for being jealous of a healthy or healthier child. It was Deja Vu. Good grief. "Here is another insensitive and clueless person", I thought to myself, someone that cannot see past her nose. If only this person would see what I have to put my child through every day, she would KNOW that my being jealous has nothing to do with not loving my child. It has nothing to do with the fact that I do not accept his disability, or that I do not enjoy him. It has EVERYTHING to do with the fact that I am tired of him being in pain, and that his pain hurts me more than mere words can explain. Yet, I keep going, out of unconditional love, and yes, I am envious of parents that do not have to hurt their children. As long as my child is in pain, I will possibly always be. I am not sure why that is such a hard concept to explain, but, it is. Moms in my shoes, sure know what I am talking about. But, how do you explain, to the parent of a healthy child who just made you feel like a rotten person for being jealous, how it feels to feel so helpless? There are days I cannot stand his continuous crying. His eye

hurts, his foot hurts, his elbow hurts, his butt hurts, he's tired, he cannot swallow this, he cannot swallow that, he chokes, he wakes up in the middle of the night and chokes saliva over and over again, etc. It is constant. There is no getting away from it. I yell at him if he whines too much, I am a single mom, so I never get a brake. I tend to really lose it if I am really tired and he is a tiny bit too demanding. What kind of monster am I turning into? And there he is, wanting and requesting great big hug every minute of every day. Sometimes I feel like the biggest jerk that ever walked the earth. I'm mad at this disease, not him. I'm mad about the "normal" life my child does not have and will never have. I hate the thoughts of my son dying because of this disease. When he is sleeping the thought of how he will look when he dies enters my mind. I am not sure if it's because I know how dead children look like, since I already buried one, or if I am just morbid. One thing for certain, it scares the hell out of me. And I know it can happen, and I know it WILL happen if a cure is not found soon. How do you explain this to the parent of a healthy child? 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. I have to cope with this weather I like it or not. Everyone says, "I just don't know how you do this everyday." "You're such a great mom." "You are so strong." "He is lucky to have you." "God chose you for a reason." I don't know how I do it everyday. If I'm so great and Nicky is so lucky, why do I feel so helpless? Why was I chosen? Who knows. A mother is made to protect their child and be there when they are sick and have them get better. My son is not getting better. He is sick everyday and I cannot help him. I cannot make his pain better. I want to do it for him, but I can't. It just tears my heart apart. How can I possibly not feel jealous as my child fades and is in more and more pain. And even worse, I am the one that HAS to cause much of that pain, because if I don't - the consequences are unthinkable. I have to do the zombie thing and poke and cut and bathe, smear medicine on areas too sore to even expose to the air without hurting and bandage. This is against everything that is in the handbook of loving parenthood, of nurturing. Deliberately causing pain, even though there is no other choice. In a way, this is a lot like grieving for my Alex, because it is a death of what could have been.

The absolute worse part about Nicky having the Recessive Dystrophic form of EB is that I cannot look forward to him getting better... EVER. If anything, he's just going to go through more surgeries and more pain, with little hope for true normalcy or recovery. Yet it is very evident with these children, that their spirit soars high, and will try their best to be as normal as possible. Most EB kids are straight As students. Nicky, true to that, at 3, he can count to 20, spell his name, and knows the entire alphabet--and knows words that start with those letters too. Most 5 year olds cannot do that. Nicky enjoys the little things other kids might very well take for granted, and his love for people that love him is pure gold. This is the children with EB (and their parents) greatest gift, the chance to see the world with their eyes, because it is indeed a different and more special world than the one we live in.

I will stop at nothing to spread awareness, that is the reason behind my websites, especially EB Info World. I know that through the websites, awareness can be achieved, and, in turn, awareness will lead to funding, which leads to scientists being able to find a cure faster for our children. I will not stop until EB is eradicated from this planet. If you can help, please Email me, I will let you know how.

Playing: Don't let the sun go down on me by George Michael
Be Brave. Even if you're not, pretend to be. No one can tell the difference.
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