Butterfly Child: A Mother's Journey
Butterfly Child is the story of a mother's journey through grief and incredible challenges. From the stillbirth at full term of her first baby, followed by a miscarriage, to the birth of her son Nicky, diagnosed with Recessive Dystrophic Epidermolysis Bullosa, a rare skin blistering disorder that requires extensive wound care and is considered life threatening. Challenges include Insurance Companies refusal to cover the most basic needs for any Eb patient to Silvia's trying to make sense of her situation, from a divorce to a remarriage and another scary pregnancy. Her youngest son, Connor, is 100% healthy and she never, ever, takes it for granted.
From Molly Holm:
Butterfly Child was a book I did not want to finish because it was so good! Though it depicts much of the pain and challenges that come with raising a child with EB, the author, his mother, wrote a beautiful and inspiring story of their lives and her personal struggles. In the end, her realizations, which she shares so honestly, are uplifting and full of hope. She really is an amazing mother and I hope many people read this book in support of her and all the families who give every last bit of themselves to their children. It doesn’t matter if you don’t know any of the incredibly special kids who suffer from this horrible condition( though you’d be lucky if you did!) this book is a wealth of learning on how to cope…and with grace!
From Caarolyn E. Lemcool:
I have followed Nicky’s story for a few years now. He is a brave and courageous young man for all he has through during his life. Him and his Mom get discouraged once in a while but they always rise above it with faith and positive thoughts. I am so honored to have the book Butterfly Child. I pray it brings enough awareness to this disease so that more research is done to help find a cure or stop its progression.
This book is full with so much love for her child. Silvia would move mountains for Nicky not to live in pain every day. Add in her own heart ache. Losing a child at term. Then, a miscarriage. Silvia finally had a child to love and to be the mother she always knew was in herself, but now she had to rethink how her future would be with a child with special needs. Most of us never heard of EB, Epidermolysis Bullosa, until we hear about someone with it or we see something on social media like Facebook. I learned about EB years ago when I joined a group that Silvia was in. I later learned about her son and I wanted to know more.
A favorite quote of my was “How well we (Silvia and Nick) were dealing with this”, which was said to Silvia by a nurse. Well, how else were they to deal with this? When life throws you a curve ball, you move in a different direction. That is what they had to do. In order to keep Nicky healthy, they had to do everything in their power.
I can not believe the insurances issues that Silvia was having. I believe that the bandages are keeping Nicky healthy. Why can’t an insurance company see that? I know why, but I can’t say it. It is like denying needles or insulin for those with diabetes. I do have a couple stories about a friend with diabetes, but he always gets what he needs to treat diabetes.
I do believe when Silvia said that this experience made her more forgiving and understanding and a little kinder. I also believe that Silvia was meant to be a mother to a child with EB. Think about it. Back when Nicky was diagnosed, she could not find much information. Silvia created a website to educate others on EB. In the process, other EB families found her and she was no longer alone. Now this book. It will help some many families who get those words told to them about their child. You know the words I am thinking about. “Your child has Epidermolysis Bullosa” and most parents would probably be saying “What?” These parents would search the internet like Silvia did, but this time they would find good information.
Are you thinking should I read this book? My answer is yes! It is emotional, but it is a mother’s journey of everything she has been through with a child with a rare fatal disease. Now, if you are a mother to a special needs child, then I think you will see yourself in Silvia here and there. I know I did. I am a mother to a special needs child. No, my daughter does not have EB, but her disease is rare. I will not get into this here, but another post about special needs children soon. It is also about a strong admirable woman, who learns her way to who she is today. Without all of these struggles, who would we all be?
My opinions of this book is my. It is hard to keep my reviewer half away from my special needs mom half. I am the same. I see so many things that Silvia wrote that I could have written. The isolation. The no help from family and friends. How Silvia grew up (I went to a Catholic School from Kindergarten to 8th grade). The one thing I know more than anything is mourning that perfect little baby you dreamed about. It took me awhile to get over my anger and to find the good in my life. Yes, I had a child with a rare disease, but she was so happy. It was hard not to see it in her.
I give this book 5 out of 5 stars.
Would I recommend this book? Yes! Author? Yes!
Would I read more from this author? Yes!
What a beautifully written book about courage, strength and love! The story of Nicky and his mom, Silvia, will melt and warm your heart! Their journey together will inspire you and you won’t want the book to end! Bravo!!
From Sherri Malia:
Definitely a must read!!!
Such a well written book with great detail. It grabs hold of you from the first page & you just don’t want it to let you go. I have learned so much about EB with this read. But more importantly, I’ve learned not just what the person with the disease goes through, but also what the family members go through as well. There are times that you just want to give up, but you know that is not an option. Thank you for allowing me to travel this journey with you through your writing. It was emotional, but was also very inspiring. You are an amazing mother and Nicky’s story just leaves me wanting to know more and more about this rare disease.
I was made aware of EB by a friend of mine, who’s parents are actually mentioned in the book. The people who battle this disease are truly heros. And the parents of children with EB, well I can’t even imagine. Your strength gave me strength. I appreciate you sharing your journey. I couldn’t put the book down.
This is an emotional and gripping read. This was a hard read at times, how can anyone want a child to go through this much pain day in and day out. People with this disease are exceptional because of everything that they have to go through. The family members lives aren’t easy either.
This is not a read for anyone but that being said I think that more people should read this book. We need more awareness of this disease out there. This book was well written and is gracefully done.
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