Following Reviews are from Amazon:
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.
Here’s reviews of my previous works:
Reviews for Losing Alex
I loved this book even though it is sad story. Eb is a horrible disease that these poor children have to live with and unfortunately can die from. Thank you Silvia for sharing your story. You are a brave mother. God bless.
By Terri Clark:
I gave this book a five star rating. Having lost a daughter in her early years I can understand her feelings. This a very interesting and informative book. Helped me feel I was with her during her grieving. Highly recommend this book.
By Jenny Bynum:
This book was very difficult to read without crying and feeling as if this could have happened to me if I were able to have children. The statistics alone were just shocking and the sorrow, heartache, and support for this family was just amazing. I was glad to have the opportunity to read this remarkable true story that this amazing person was able to write and share her experience and story of losing her child. This is a RECOMMENDED MUST READ story that will help any parent who has lost a child and hopefully make it somewhat comforting that you are not alone.
This July (2013) will be the sixth anniversary of Damien’s stillbirth. It is something that I will never get over. I just want to thank Sylvia for writing this amazing book. I was in tears for most of it thinking to myself “Exactly!” She puts to paper the emotions that tear at my soul. This book should be required reading for anyone involved in the loss of a beautiful child.
The author’s memories and ability to thoughtfully and skillfully share them make this book a true gift to share with anyone who has lost a child.
It was very touching and well written. As a mom that has never experienced the loss if a child it was eye opening.
Reviews for Special Mommy Chronicles
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.
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!
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.
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!
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!!!!!
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.