Being Different

By Silvia Corradin

From the Book ‘Special Mommy Chronicles‘ (only $2.99 for the Kindle!)

Being Different

     On most days the furthest thing from my mind is my child being different from any other. We laugh, play together, even bandage changes are so routine it feels like a ‘normal’ thing to do. I don’t have any other children, so I don’t have anybody to compare him to on a daily basis, and that might very well be a blessing. I don’t sit there feeling sorry for myself, or feel sorry for Nicky that much, if at all. We just live and take care of what needs to be done.

That all changes, however, once we go out in public. The stares, the questions, seeing other kids my son’s age do things Nicky will never be able to do, can truly be heartbreaking. I often worry about Nicky’s mental state seeing other kids do things he cannot do, and that is why I try my best to get him to spend some time with children like him. I also try to help him do the things he cannot do and do them in a creative way, like holding him in my lap to go on a swing, or down the slide.

The questions and reactions I get from people are varied.

There are those who just ask ‘What happened’, and after I offer my initial brief explanation they walk away (yes, they walk away!). Then there are those people who truly seem concerned and ask a million questions… I like these people, but there are only a few of them out there. I even had some wonderful souls who start crying, WOW. Then there are those people who think are out of earshot but aren’t, who comment or try to explain to their children what is ‘wrong’ with Nicky… and they always without fail get it wrong. They will say ‘he got burned in a fire’, or ‘he was in an accident’ or things of sort. Others tell me about their cousin or aunt with a skin disorder (usually eczema or similar) or think they know what it is, but it’s never the case. Any skin disorder pales compared to EB, so I know they don’t understand how badly Nicky is affected. To most others I hand out a card that explains what Nicky has in simple terms, and that has worked best because it has links to websites to get more info.

The stares sometimes are the cruelest things.

Admittedly, I have gotten used to having my child stared at, and I know that is true because when there are other people with us they comment constantly on this person or that person staring that I did not even notice. There are also different kinds of staring. There is the staring out of curiosity that ends just as quickly as it started. Then there is the persistent stare-the one that follows you for a whole minute or five! Then there is the ‘yuk’ stare (my personal peeve), the ‘poor baby’ stare, but my favorite is the stare with a smile… but my child rarely gets those, unfortunately.
I realize that people are curious and notice things that are different than what our society feels is ‘normal’. Picking out what’s different is a skill children learn at a young age, perhaps it’s a skill that is part of being human, and that enables us to pick the freshest fruit to eat or avoid illness or an accident. Nicky’s only difference though, it’s on the outside. His skin may be damaged, and he might have tons of wounds and limitations, but inside, he’s as whole as any of us; perhaps more. He has a keen sense of love and his ability to love and even forgive me, or anyone, for anything, is beyond measure. He is without a doubt the happiest child anyone has ever seen. Even after an excruciating bandage change full of blood and needles he’s so happy it’s over he comes over for a hug and starts singing, and that smile… boy, that just melts my heart.

My child’s disability is only part of who he is, but because his disability is so incredibly visible, I feel too many people tend to concentrate on that alone, and that is very sad. What a world this would be if people would only be judged by their insides…

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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The Healing Power of Humor

By Silvia Corradin

From: Special Mommy Chronicles  (Unpublished Column from July 6, 2006)

     The calendar in my computer room just taught me something today… it said: “A cheerful heart is good medicine.” King Solomon (Proverbs 17:22). It’s so true, too. After my son died and for many years after Nicky was born, I was incapable of watching any TV show that was too dramatic, it was only Friends & Seinfeld for me, and I loved Jay Leno! I simply felt the NEED to laugh. My goal during bandage changes for Nicky ever since he could understand is to make him laugh at least once, more if I am successful! I do this every time because my son seems so much more relaxed and enjoys this tense time with me when I do this, even though he is in pain.

Humor is very healing in many aspects of our lives. Comedy helps our psyche and well being, and many studies show that scientifically it does even more than that! According to recent studies, laughter produces endorphins which lessen pain, increases production of T-cells, interferon and immune proteins called globulins and even significantly lowers cortisol levels and returns the body to a more relaxed state. It even boosts your immune system! Dr. Cousins, who in 1964 was diagnosed with a crippling and extremely painful inflammation of his body, stated that: “I made the joyous discovery that ten minutes of genuine belly laughter had an anesthetic effect and would give me at least two hours of pain-free sleep.” Dr. Cousins later recovered from his condition and spent the next 20 years teaching about the merits of laughter and humor in healing.

It should come of no surprise then when watching ‘Last Comic Standing’ that two of the initial semi-finalists of this season had some sort of disability. One guy had Cerebral Palsy, while one of the gals had a pronounced Lisp. They were both hilarious and were audience favorites. They made fun of themselves and I cannot think of a better way to handle their condition! I often hear from School Bus drivers, teachers and others who come in contact with Nicky how funny he is, and I am so glad!

What can you do to find humor in your life? Anything can be funny, as I found out when I was forced to find something to make my son laugh during bandage changes. Keep funny pictures of family and friends around you, anything that will make you smile will do! If you like jokes or funny, subscribe to some of those! You like comedies? Rent or watch those exclusively. Think of something funny or embarrassing that has happened to you or a friend/relative and have a good laugh!

The world is so serious, and it does not need to be. Adding humor to your life will allow your child to grow into a fun and light-hearted person, one that will never know the meaning of ‘depression’. The end result might very well be that laughter will help everyone in your family live longer, too!

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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New Low Price for Kindle versions!

Hello everyone,

just a quick notice!

The Kindle editions of BOTH Living with Epidermolysis Bullosa and Special Mommy Chronicles are now available for the NEW low price of $2.99! Click the covers below to be taken to their respective page at amazon.com
    

If you don’t have a kindle, the APPS are FREE for all platforms, including PC & MACs! Get it HERE!!

Thank you SO MUCH!!

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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The Parent’s Marriage

By Silvia Corradin

From: Special Mommy Chronicles  (Unpublished Column from August 14, 2006)

     Marriage in America is already a weak preposition, as the latest statistics show that 43% of all marriages end in divorce. Throw in the mix a child with a disability and a marriage that was hanging on by a thread will probably not survive. In a study done by Robert Hodapp and Diane Krasner, families of children with disabilities showed higher percentages of divorce or separation, lower family incomes, and more single-parent households than did the families of healthy children they surveyed.

I remember vividly how my marriage was always on the verge of collapsing before we even had children. After we lost our first baby it seemed as though we had gotten closer, and since I did not believe in divorce, I believed nothing could pull us apart. Then Nicky was born and all of a sudden everything changed. To say that taking care of Nicky as a baby was hard it’s an understatement, and I did so without any help at all from anyone. Our families lived out of state or out of the country and my husband worked all the time, so I was left with the burden of taking care of our child 24 hours a day, 7 days a week, without a break, ever. I even slept on a mattress in the floor in the living room so I could be next to him in case he woke up chocking, which was often. Nicky’s condition is so rare it falls through the cracks and I was unable to get the insurance or any government program to approve a nurse, respite or any kind of help. I could not get anyone to help pay for the bandages either, so I had the extra burden to disinfect, wash, re-roll and re-use the bandages as well. Every week I had countless appointments with the pediatrician, the hand therapist, the physical and occupational therapists. My husband was upset about the situation and would take it out on me nearly every day. Exhausted and depressed I remember asking my son’s Physical Therapist how many marriages survive having a child with a disability and she sadly looked at me in the eyes and told me she was sorry to tell me this, but in her experience, more than 75% of children that she saw came from divorced homes.

Crisis can bring out the worst in people, and it’s in the troubled times that we all show our true colors. While a strong couple can find resolutions to a crisis, accept the diagnosis and take the opportunity to see the child in its own special light and bring out the best in its parents, couples that are not so strong cannot come together and cannot do this. Men and Women cope with this kind of situation differently as well. A woman goes through the heart break and then her nurturing nature kicks in, but a man feels like a failure. He is supposed to protect his children. How could this happen while he was on guard? He feels like he let his family down.

What parents need to do is try to understand each other and not read anything extra into someone’s actions. Particularly men find it hard to bond with their children because they feels so helpless. In my case, I tried and tried to fix my marriage, but I was unsuccessful. While in time Nicky’s dad has come to not only accept the disability but now has a fantastic relationship with our son, our marriage did not survive. I still count myself lucky, however. I have found a man who not only accepted me but my son, his disability, and took it all in stride with a lot of love, determination and support. I thank God for sending him to me every day.

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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Doing What Makes YOU Happy

By Silvia Corradin

From: Special Mommy Chronicles  (Unpublished Column from September 7, 2006)

Living day by day with a child that needs so much attention and care, can leave us feeling drained and depressed. I’ve always heard from everyone that moms should take time out for themselves, but sometimes that is too daunting of a task to even imagine. What is that we can do to make us happy? What can we do that won’t be hard to manage, like finding a baby-sitter or taking a lot of time out our day when we don’t have much to spare?

Ever since my son was born that has been exactly my struggle: to find some distraction, something I can do that would make me happy without needing to go to some extraordinary length to be able to do it. Clearly for me, it had to be something I could do from home.

My mom, bless her heart, found something that made her happy despite being stuck at home with three daughters: she became an Astrologer. She took some courses, buried herself in books, and truly found something she loved to do. She even made money doing it, as she would advertise her business and invite people to come over and get their Birth Chart done by her. I know many people roll their eyes at this, but she was so good at it, and it gave her life some purpose. She is going to be 70 years old in January and she still does it, she sends me my yearly horoscope with the predictions for the upcoming year and she is RARELY wrong!!! When she meets someone she immediately guesses their astrological sign and she is right on the money 99% of the time! She is amazing. Aside her love for Astrology she has a passion for poems, she wrote hundreds, one more beautiful than the other. I am hoping to get her book published someday. If it was in English it would have already been done, but since it’s in Italian and I live in the US, that’s going to be more of a challenge.

My guilty pleasure? Writing, of course, has always been something I loved to do, but graphic work is now a close second. I love working on websites and connect with people I would otherwise never get a chance to meet. I often joke with my husband that some of my best friends that I speak with live in other countries!

It may take a while to find something you like to do that you can do from home, but the rewards are priceless. You won’t feel drained, you won’t feel depressed, and it’s better than pills!

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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The Longest Ten Years of My Life

By Silvia Corradin

From: Special Mommy Chronicles  (Unpublished Column from December 10, 2006)

A couple of weeks ago my son turned ten years old and it felt like a gigantic milestone. For the first time in years the image of him in the incubator when he was a baby kept haunting me and my dreams. Why did I feel like that? Why now?

Nicky's 10th Birthday

Ten years ago today my son had just been discharged from the hospital. He was so little, so precious, and so sick. The dermatologist had just finished telling us that we would be back in the hospital to treat infections on a weekly basis and that he would most likely die before his first birthday. We brought our bundle home not knowing what the future might bring.

Now I know that this Doctor didn’t know much about the form of the condition my son has to make these claims, I don’t think my son “conquered” or “beat” the disorder or “proved the Doctor wrong” as very rarely children with my son’s form of EB die before their first birthday, yet, thinking back, ten years later, I still think that him being alive right now is a miracle, as so many of his peers have succumbed from this awful disorder along the way. Nicky faced so many trying situations in the past decade, from several surgeries, infections and school disasters to when he was suffering from malnutrition and I was forced to place a g-tube on him, which saved his life.

Ten years is a long time in any lifetime, but to me the past ten feel like a lifetime in itself. It’s hard for me to imagine how my life was like before bandages, before wounds, before cries, and without my precious son! I keep hearing people telling me how time flies, how is Nicky already ten years old, but to me, these have been some amazing and long ten years. These years haven’t flown to me at all.

The question remains, would I change anything if I could go back? The answer is no. There is nothing that could tear me away from caring from my boy or anything I would have done differently. Maybe I would have put the g-tube on him quicker or used different bandages on his hands when they were healing from surgery, but I know in my heart I did the best I knew how at the time, and when I knew better I did better.

To Nicky… my love. Here’s to ten more amazing years!

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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Don’t Tell Me That You Understand…

By Silvia Corradin

From: Special Mommy Chronicles  (Unpublished Column from November 7, 2006)

“Don’t tell me that you understand, Don’t tell me that you know, Don’t tell me that I will survive, How I will surely grow. Don’t tell me this is just a test, That I am truly blessed, That I am chosen for this task,  Apart from all the rest…”
These are just the first two paragraphs of a poem I ran across while collecting a few for a dear friend of mine who recently lost her son to the same condition that my child has. Having lost a child myself, I have surely read many helpful poems, but this one somehow got stuck in my head because it not only helps bereavement moms deal with their loss, but it spoke to me on how hard it is to deal with the general public when parenting a child with a disability.

How many times friends and relatives, even friends and relatives of other moms or patients, think they ‘know’ what we go through? Unfortunately it goes farther than that. These sometimes well meaning individuals judge us for decisions we make, things we do or things we say out of despair or loneliness! I’ve seen it happen often in these past 10 years. People that have no clue of what a special need child’s mom’s day is like is not in any position to judge the treatments we choose for our children, the decisions we make for their well being and certainly cannot understand what it means to be so angry that it seems to us as if nobody cares that we vent at anyone that will listen. Just yesterday I was very upset at the new company that provides my son’s supplies because after a week and 3 messages left to call me back, nobody could be bothered to call me back so I could place my order! Finally I picked up the phone and made one more phone call only to get their answering service again, so I left quite the crude message.
Needless to say, the person that does not understand how badly my son needs these bandages, someone who never had to watch their child in pain day after day for ten years, or have to sit there hearing their cries of pain, could not even remotely comprehend my rage and surely would be prone to judge me because of it.

To those compelled to judge a parent about a situation they know nothing about I only have one thing to say: Exchange places with me, for one day. Just one day. For one day you will have to change my son’s bandages, see my son’s wounds, hearing him cry in pain, change his diaper, prepare his tube, give him his medicine and take care of everyone of his needs. He cannot dress himself, nor get a drink from the refrigerator for himself. His needs are many and constant.

Why would this help? Because, you see, it’s not pity, nor “poor” this and that which moms of special need children want. What they want is to be understood, to be given some slack when they have a bad day, and foremost, not to be judged. It’s only when someone walks in someone’s shoes that the light bulb turns on. Anyone willing to exchange places with me?

The Bible says it best: Luke 6:37 “Do not judge, and you will not be judged; and do not condemn, and you will not be condemned; pardon, and you will be pardoned.”

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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Special Mommy Chronicles

This is my book!! It’s basically a compilation of columns I wrote in the early to mid 2000s.

“Special Mommy Chronicles” was a featured site in Exceptional Parent Magazine‘s February 2003 issue. It was also featured as an on-going column in the Mahoning Valley Parent Magazine of Ohio from April 2003 to September 2004.
Over twenty websites, such as Contemporary Moms, Bridges for Kids and About.com, linked to a column on their front page or posted specific Special Mommy Chronicles Columns/Articles on their website.

Here is an image of one of the columns/articles printed in the magazine “Stress Free Living” of April 2003, and check out the image of another one of the column/articles published in the “Parent Paper” of Northern New Jersey & Rockland County.

Special Mommy Chronicles (Paperback) by Silvia Corradin 

The “Special Mommy Chronicles” was a column written by Silvia C., the mom of a Special Need child (son suffers from the Recessive Dystrophic form of Epidermolysis Bullosa) which offers insights, stories and struggles that go along in raising special kids.

This book is also available directly from the Publisher and also at Amazon &  Kindle, also at B&N (paperback & Nook Editions) in the iBookstore in iTunes.

TESTIMONIALS

  • I am a physician who works with disabled children and the parent of a son with hydrocephalus. I have enjoyed reading your chronicals.
    God Bless, Coleen 
  • Hi! I just wanted to say THANK YOU for writing from your heart. You have written about things that are SO hard to even talk about to people that don’t have children or children w/disabilities. I appreciate your honesty, your encouraging words, and even your words of frustration. I have thought many of these things myself even though our children have totally different challenges. SO thank you very much, and God bless you and yours.
    Becky 
  • What an incredible writer you are, & such a blessing to be given such a beautiful child!!! Congratulations for meeting all the challenges and accomplishing such a great deal. You’ve obviously made quite a difference in this world of parents who may be struggling & overwhelmed with exactly what you understand & can overcome b/c you have faith, hope and LOVE… above all else!!! I’m very impressed with your site & mission~ Keep it up & God BLESS!
    Bonnie 
  • I loved reading your stories! You sound like an awesome mother and an inspiration to us all. Thank you for telling it like it is….with heart & soul.
    From a new mother of a special needs child.
    Christine 
  • God Bless You, and your beautiful son! I would have loved to meet him! You are a truly strong and blessed woman to go through such bitterness and come out with such a loving, supportive heart. Thank you for your words. It is hard being a mom of a special needs child (my daughter has autism) but it is also one of the most wonderfully precious gifts God could ever have given to us! Most life changing events seem so wrong, yet they are the most rewarding. Keep up the great work!
    Sharon 
  • I really enjoy reading your articles. I have a two year old son with Down Syndrome who is the love of my life. Your articles have helped me understand that there are other people out there who feel what i do at times.
    Thank you, Steffany 
  • READING ALL THE ARTICLES TOUCHED ME VERY MUCH, I HAVE A DAUGHTER WITH SPECIAL NEEDS, CEREBRAL PALSY, AUTISM, MENTAL RETARDATION, EPILEPSY,AND THIS HIT HOME!!!!!
    Cheryl 
  • I watched “The Boy Whose Skin Fell Off” last night on TLC, was thoroughly touched. I thankfully have a healthy daughter, but found myself putting our feet in your shoes, and just needed more information about this terrible disease. You are an inspiration to all mothers out there (with or without special needs), and I commend you. God bless you and your adorable son. I wish you all the best.
    Tracy

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THANK YOU!!!

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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