A Peek in the Window
Posted by Literary Titan
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.”
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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.
Posted in Interviews
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