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A Peek in the Window

Stephanie A. Collins Author Interview

Stephanie A. Collins Author Interview

With Angel’s Wings is one mother’s raw and heart-wrenching account of her life with two daughters with special needs. I understand that this book was based on your life. What made you want to put your story into a novel?

I never meant to write a book. I wrote therapeutically through some tough times (which was helpful). Nurses and therapists who were in our home through those years read what I had written and strongly encouraged me to share our story. Well…all except for one physical therapist who said, “Be careful who you allow to read this; child protective services may be called.” That bit of advice certainly fed into any misgivings and concerns I had about publicizing our tale! After years of prompting, though, I took a deep breath, closed my eyes tight, and sent it out for the world to judge me to their hearts’ content. I’m glad I did. The most gratifying moment was when a mother of a toddler boy who has Wolf-Hirschorn Syndrome messaged me and said, “I happened to stumble upon your book. Before I read it, I thought there was no way anyone could possibly understand what I’m going through and how I’m feeling. After reading it, I went out and bought 3 more copies to hand out to my family members in the hopes that as they read about you they’ll better understand me.” That’s what it’s all about, right?

You describe every obstacle encountered as you come to terms with your daughters’ challenges. What was the hardest thing for you to write about?

Given the fact that I was writing therapeutically, I can’t say any part of our story was particularly difficult to write. Writing it down was what made things a bit easier. That being said, there are multiple parts that I still can’t read without crying (most of the marathon IV poke sessions, when Sarah [“Hannah” in the book] coded in my arms, when she got her I.O.’s…I could go on and on). The one section that I avoid reading whenever possible, and when I do have to read it, I feel physically ill, is the section about my “breakdown” (when I [apparently] threw the knife at my husband). There are so many things I would change if I had the ability to go back, knowing what I know now (not that I’d ever want to!). One of the biggest is the way I addressed my depression (or DIDN’T address, as the case often was). I now understand just how big a role depression (and PTSD) played in our story. I wish I had known more about it then, taken it more seriously…and cut myself a little more slack, which hopefully would have allowed me to relax a little more and address every other aspect of my life a little more successfully.

Hannah’s is diagnosed with Wolf-Hirschhorn syndrome. What are some misconceptions about this condition and how did you educate yourself on it?

Well, to have misconceptions, I suppose you’d have to have any concept at all. Not only had I never heard of the diagnosis, but very few people I’ve come across have ever heard of it, so finding out I was wrong in my thinking hasn’t really been a problem. Something I definitely understand now that I didn’t before is that within every genetic diagnosis there’s a spectrum – not all with the same diagnosis present the same picture. There are, for instance, individuals with Down Syndrome who you hardly recognize as having the disorder, who are quite independent, and those who are much more involved, who are completely dependent on the care of others. Wolf-Hirschorn Syndrome is no different. Some WHS kids are quite high functioning…Sarah is not; she’s at the lower end of the spectrum. I have to remind myself of that, sometimes, when I’m feeling guilty over burnout and other WHS moms are posting about what a JOY their son/daughter is in their lives (along with pictures of them going to prom or enjoying a trip to Disney World). Same diagnosis in no way equates to same experience.

Because there isn’t a ton written about WHS, a lot of what I’ve learned has come more recently, since the explosion of social media. This is the generation that specialists are looking to for data on growth charts and life expectancy. That means we don’t have information to look at, but we have a wealth of experiences shared by many families that offer some clues as to what to possibly expect or watch for.

This is an emotional book that, I felt, was honest. What do you hope readers take away from your story?

For the “general population” reader I hope to offer a “peek in the window” of a family living a life likely very different from their own. When the reader sees a medically fragile child on the street, maybe that child will be looked at with more admiration for his/her strength, rather than pity. Maybe if the reader comes across an autistic child, he/she will be a little more patient and a little less judgmental toward both the child and the parent, alike. It can also be just plain interesting to read about others facing challenges we aren’t. It’s the little details that make you say, “Oh yeah…I never even THOUGHT of that being an issue!”

For readers within the special needs community, I hope to offer hope that if I could find the light at the end of my tunnel, you can, too. I hope to offer companionship by way of admission to my own doubts, frustrations, struggles, and screw-ups. I hope that a fellow special needs parent will understand this book is me saying, “You are not alone. You are not wrong for the way you feel. This, too, shall pass. And you are stronger than you know. You can do this.”

Author Links: GoodreadsTwitterFacebookWebsite

With Angel's Wings by [Collins, Stephanie A.]

With Angel’s Wings is the true story of Laura, a young wife and mother of a three-year-old daughter. Her husband, Kevin, a marine, is deployed overseas, leaving Laura to give birth to their second daughter and handle the two young children on her own.

Thirteen days after the birth of her youngest, the pediatrician detects a heart murmur. That leads to just the first of multiple diagnoses for both of her daughters, sending Laura on an unexpected and emotional journey into the world of parenting medically-fragile, special needs children.

Right when Laura fears she will break under the incredible pressure, she encounters the beauty of true love, in a most unexpected and unconventional way.

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With Angel’s Wings

With Angel's Wings by [Collins, Stephanie A.]

With Angel’s Wings, by Stephanie Collins, is one mother’s raw and heart-wrenching account of her life with two daughters with special needs. Written as a third-person account with name changes, the author describes each and every obstacle encountered as she struggled to come to terms with her daughters’ challenges while simultaneously dealing with a long string of physicians, specialists, and therapists. Laura, as the author calls the young mother, fights an uphill battle from the moment she is told her days-old infant has a heart defect–the first of many. While facing a seemingly unending barrage of personal hurdles, Laura somehow learns to cope with the endless physical and emotional demands placed upon her family by tiny Hannah’s diagnosis of Wolf-Hirschhorn syndrome.

This author’s life story as a work of fiction is almost indescribable. I do not believe I have ever read a book that kept me as breathless and as anxious as this one. Laura’s laundry list of traumatic events ranging from her newborn’s purple feet and hands to her seizures lasting for hours on end is mentally exhausting to read. Her life is so full of twists and turns and drama surrounding Hannah’s diagnosis and subsequent health scares, the author has no need to embellish with flowery language and lengthy stretches of narrative. There is, literally, no room or time left to dress up her text. This book reads as a journal of heartache peppered with true love.

Collins is honest and open with her feelings about her daughters’ diagnoses. As Laura, she sugarcoats nothing. As strong as she is, Laura reveals her vulnerability as an overwhelmed young mother. The reader aches to watch her contemplate, time and again, a way out. Her frustration as a parent fighting her way through the healthcare system is one with which many readers will be able to relate. In addition to her day-to-day battle with fevers, seizures, hospital visits, and mounting financial woes, Laura faces the virtually indescribable audacity of an ex-husband who lacks not only both sympathy and empathy but a soul, as well.

As a parent and a teacher, I have never read a more authentic and touching account of life as a mother or a more revealing account of what caring for a child with special needs truly entails. Emily’s early signs of autism hit home with me as a teacher. No one knows the struggle of helping a child on the autism spectrum like a parent. Laura begins accommodating for Emily’s needs long before her diagnosis. She modifies, plans, and tries to remain several steps ahead of meltdowns from early on in Emily’s life. Parents of children with autism will appreciate reading about the way Laura intricately weaves a web of plans on a daily basis to compensate for Emily’s developmental delays.

Though the book is primarily focused on the battle to save Hannah and come to grips with her many needs, the author does a beautiful job of illustrating the relationship Laura develops with Daniel. Daniel, the one shining light in her darkest days, is a rather unlikely saviour. Their love, apparent from early in their friendship, is one that only intensifies through the rigors of identifying and finding ways of successfully coping with all Emily and Hannah’s needs.

There aren’t any options for stars beyond 5, so I am restricted to giving With Angel’s Wings 5 out of 5 stars. The author’s life story, now Laura and Daniel’s as well, is an absolute must-read for any parent, teacher, or caregiver of a child with special needs. There is a love like no other born out of a relationship with these children, and Stephanie Collins has handed readers everywhere the key to unlock hearts and minds and build a better understanding of the struggles faced by many of our family members and friends who have children with special needs living lives like Laura’s.

Pages: 304 | ASIN: B01DL9AXAI

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