Butterfly Child: A Mother's Journey

Collection by SleepingAngel • Last updated 3 days ago

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Like any mother, Silvia never imagined she would have to to bury her first son, Alex, who was stillborn at full term. After a miscarriage she had Nicky, who was diagnosed at birth with the Recessive Dystrophic form of Epidermolysis Bullosa, an incurable, rare and always-fatal skin disorder. EB is considered an Ultra-Orphan Disease, and at the time of Nicky’s birth there was no research for a cure. https://www.facebook.com/butterflychildbook

SleepingAngel
I kept this pregnancy a secret from everyone until the first trimester passed and the only people who encouraged me and I could lean on were either my close friends or my family. Everyone else I suppose felt like they were walking on eggshells, and I don’t blame them. I was as vulnerable as a quivering bowl of Jell-O. #rainbowbaby #pregnancyloss

I kept this pregnancy a secret from everyone until the first trimester passed and the only people who encouraged me and I could lean on were either my close friends or my family. Everyone else I suppose felt like they were walking on eggshells, and I don’t blame them. I was as vulnerable as a quivering bowl of Jell-O. #rainbowbaby #pregnancyloss

I was determined to give my son a quality of life that was as high as I could make it, and I knew that was dependent upon the care, education and advocacy he received as a result of my efforts.

My Life with my Butterfly

I was determined to give my son a quality of life that was as high as I could make it, and I knew that was dependent upon the care, education and advocacy he received as a result of my efforts.

Moving forward, amidst feelings of foolishness & fatigue, putting one foot after the other, day after day, was indeed bravery, but not for me per se. I felt those adjectives were more suited for my son and my husband. I helped them be and do what they could. That was my contribution.
Butterfly KidsFeelings

Moving forward, amidst feelings of foolishness & fatigue, putting one foot after the other, day after day, was indeed bravery, but not for me per se. I felt those adjectives were more suited for my son and my husband. I helped them be and do what they could. That was my contribution.

One would think that after all these years of being a caregiver, I was now a full fledged citizen of “Holland”, the place where Emily Pearl Kingsley describes in her poem about what it feels like to have a special need child. Perhaps on some level I was, but I don’t think we ever get used to seeing our child in pain.
Butterfly KidsAfter All These YearsPoemsMy Life

My Life with my Butterfly

One would think that after all these years of being a caregiver, I was now a full fledged citizen of “Holland”, the place where Emily Pearl Kingsley describes in her poem about what it feels like to have a special need child. Perhaps on some level I was, but I don’t think we ever get used to seeing our child in pain.

These cries were not for the tame, they were the kind that leave you dehydrated, exhausted and cleansed; a tear-filled purge that comes from deep inside. I would not have wished this feeling on anyone, including my worst enemy. I was never going to get back the piece of my broken heart that Alex took with him when he left, and that was something I had to learn to live with.

My Life with my Butterfly

These cries were not for the tame, they were the kind that leave you dehydrated, exhausted and cleansed; a tear-filled purge that comes from deep inside. I would not have wished this feeling on anyone, including my worst enemy. I was never going to get back the piece of my broken heart that Alex took with him when he left, and that was something I had to learn to live with.

As I write this more than ten years later, it seems as if people who never had unforeseen circumstances come up in their life, rarely understand the plight of what I went through. Unexpected things can happen to anyone at anytime, and when they do everyone needs the welfare system to come to our rescue, which is the reason why these programs were created.
Butterfly KidsMy LifeShit Happens

My Life with my Butterfly

As I write this more than ten years later, it seems as if people who never had unforeseen circumstances come up in their life, rarely understand the plight of what I went through. Unexpected things can happen to anyone at anytime, and when they do everyone needs the welfare system to come to our rescue, which is the reason why these programs were created.

Our children look up to celebrities on TV, movies and music, as models for behavior and that could not be more misdirected. This generation is bombarded with messages that the only way to be happy or successful is if we own a certain car, or look a certain way. It is dangerous. Life has a greater purpose than looking good or living in luxury, there is no inspiration in that.
Butterfly KidsPurposeMy LifeMessages

My Life with my Butterfly

Our children look up to celebrities on TV, movies and music, as models for behavior and that could not be more misdirected. This generation is bombarded with messages that the only way to be happy or successful is if we own a certain car, or look a certain way. It is dangerous. Life has a greater purpose than looking good or living in luxury, there is no inspiration in that.

It seemed strange and disorienting to be home without our baby. Instead of Alex, I had memories: a handprint and footprint, his hospital tags and three rolls of film to be developed. For nearly forty weeks I had planned my life around him. My every waking thought was consumed with the awaiting of his arrival. Now what? #stillborn #stillbirth #pregnancyloss

My Life with my Butterfly

It seemed strange and disorienting to be home without our baby. Instead of Alex, I had memories: a handprint and footprint, his hospital tags and three rolls of film to be developed. For nearly forty weeks I had planned my life around him. My every waking thought was consumed with the awaiting of his arrival. Now what? #stillborn #stillbirth #pregnancyloss

Perhaps Nicky's his contribution to society as a whole was to making people aware of their own fragilities and limitations, and if he could be positive and happy with his daily grind, surely all of us could put aside our petty problems and live a joyful, fulfilled life no matter what. #butterflychild #epidermolysisbullosa #ebawareness
Butterfly KidsJoyfulMy LifeLive

My Life with my Butterfly

Perhaps Nicky's his contribution to society as a whole was to making people aware of their own fragilities and limitations, and if he could be positive and happy with his daily grind, surely all of us could put aside our petty problems and live a joyful, fulfilled life no matter what. #butterflychild #epidermolysisbullosa #ebawareness

At the hospital I was given a standard packet with information about many different organizations and state programs that might be able to help us and I spent oodles of time making phone calls, filling out forms, reading pamphlets, doing online research and more only to be hearing the word the insurance company loved to tell us as well. Denied. We didn’t qualify for anything. How was this possible? How can a child with one of the worst diseases in the world not qualify for help?
Butterfly KidsMy LifeReading

My Life with my Butterfly

At the hospital I was given a standard packet with information about many different organizations and state programs that might be able to help us and I spent oodles of time making phone calls, filling out forms, reading pamphlets, doing online research and more only to be hearing the word the insurance company loved to tell us as well. Denied. We didn’t qualify for anything. How was this possible? How can a child with one of the worst diseases in the world not qualify for help?

Alex’s demise and Nicky’s health challenges were not given to me as punishment, but as a window in God’s work. That’s how I took it anyways. Nicky was going to be that beacon, that light that would enable him to show the world the love God had for all of us. #Silvia Corradin #ButterflyChild #EpidermolysisBullosa #EBawareness
Butterfly KidsMy LifeChallengesWindow

My Life with my Butterfly

Alex’s demise and Nicky’s health challenges were not given to me as punishment, but as a window in God’s work. That’s how I took it anyways. Nicky was going to be that beacon, that light that would enable him to show the world the love God had for all of us. #Silvia Corradin #ButterflyChild #EpidermolysisBullosa #EBawareness

It’s not that a cure for EB was not in the works; the question was when. The answer was, only as soon as funds could be available to pay for the cost of scientific research; considering the rarity of the condition, the “when” was anyone’s guess. Keeping hope alive requires persistence ad hard work, much more than I ever predicted. #EpidermolysisBullosa #EBawareness #ButterflyChild

My Life with my Butterfly

It’s not that a cure for EB was not in the works; the question was when. The answer was, only as soon as funds could be available to pay for the cost of scientific research; considering the rarity of the condition, the “when” was anyone’s guess. Keeping hope alive requires persistence ad hard work, much more than I ever predicted. #EpidermolysisBullosa #EBawareness #ButterflyChild

Despite the blisters and the wounds I could not stop admiring him. It was a thrilling moment. Here I was, holding our very own baby. Not a doll, but a real life, wiggling, gorgeous baby. His eyes were blue like mine, clear and intense. He may have been born with a rare disorder, but to us Nicky was a heavenly light, shimmering through the clouds. #butterflychild #EBawareness #EpidermolysisBullosa

My Life with my Butterfly

Despite the blisters and the wounds I could not stop admiring him. It was a thrilling moment. Here I was, holding our very own baby. Not a doll, but a real life, wiggling, gorgeous baby. His eyes were blue like mine, clear and intense. He may have been born with a rare disorder, but to us Nicky was a heavenly light, shimmering through the clouds. #butterflychild #EBawareness #EpidermolysisBullosa

The bottom line is that there are very few families who have a family member with a catastrophic medical condition such as RDEB that can survive financially without help. #EpidermolysisBullosa #EBawareness #preexistingconditions
Butterfly KidsFamiliesMy LifeConditioner

My Life with my Butterfly

The bottom line is that there are very few families who have a family member with a catastrophic medical condition such as RDEB that can survive financially without help. #EpidermolysisBullosa #EBawareness #preexistingconditions

We were careful to pick up any hard plastic toy we would find on the floor, but inevitably one would find its way under Nicky, and whatever part of his body the toy ended up on, there would be a blister there, and depending on how much pressure he put on it, there would be either a liquid or a blood blister on his skin. #EBawareness #EpidermolysisBullosa #ButterflyChild
Butterfly KidsStillbornMy LifePlastic

My Life with my Butterfly

We were careful to pick up any hard plastic toy we would find on the floor, but inevitably one would find its way under Nicky, and whatever part of his body the toy ended up on, there would be a blister there, and depending on how much pressure he put on it, there would be either a liquid or a blood blister on his skin. #EBawareness #EpidermolysisBullosa #ButterflyChild

Everything had to be soft and easy to put on with a large hole for his head to pass through without needing to do any pulling. There was no way to pick him up under his armpits, we had to put one hand under his butt and one to hold his back/head and that was the only way to do it. #EpidermolysisBullosa #EBawareness #butterflychild
Butterfly KidsStillbornHold OnMy LifeEasy

My Life with my Butterfly

Everything had to be soft and easy to put on with a large hole for his head to pass through without needing to do any pulling. There was no way to pick him up under his armpits, we had to put one hand under his butt and one to hold his back/head and that was the only way to do it. #EpidermolysisBullosa #EBawareness #butterflychild