The Edge of Normal

by Hana Schank

What is normal? Everything in Hana Schank’s life is going according to plan — career, marriage and a growing family. But when her second child is born with albinism, a rare genetic condition whose most striking characteristics are white blonde hair, pale skin and impaired vision, she discovers that the very definition of normal is up for grabs. A moving memoir with flashes of humor, this essay tells one mother’s story of navigating the spectrum of ability and disability, filled with both heartbreak and joy. And how ultimately she and her daughter learn to balance together on the edge of normal.Reviews and PraiseTHE EDGE OF NORMAL was selected for Amazon's Best Kindle Singles of the Year, and has been featured in the SundayTimes Magazine (UK), Longreads, and OZY.About the AuthorHana Schank is an author and a technology consultant. She is a frequent contributor to the New York Times, the Washington Post and the Atlantic.com, and her writing has appeared across the web and in national magazines. Her memoir, A More Perfect How I Survived the Happiest Day of My Life, was a Barnes and Noble Discover Great New Writers selection.

Genres: Nonfiction, Medical, Memoir, Health

52 pages, Kindle Edition

First published June 16, 2015

Reviews

[Andi · Rating 3 out of 5]

I found this short story to be enlightening about albinism. I admit, something I know little about.

[The Idle Woman · Rating 4 out of 5]

Hana Schank is a perfectionist. She has the perfect career, the perfect husband and the perfect family, thanks to the gorgeous platinum-blonde little girl who's just been born to complement her robust little boy. But, as the months pass, Schank becomes increasingly unsettled by little Nora: there's something not quite right and, after taking her baby to a series of pediatricians, ophthalmologists and neurologists, she faces a startling diagnosis. Nora has albinism, which doesn't just mean being pale and blonde: she will have trouble with her vision throughout her life; she has acute sensitivity to light; she won't be able to drive. Suddenly Schank finds herself faced, not with a comfortable, ordinary life but with an extraordinary child whose needs she has to cater for.

This little book follows Schank's journey to find out more about albinism and to ensure that Nora has the best possible treatment (if such a thing is possible) and the broadest possible opportunities. She writes with remarkable frankness about her guilt (was this somehow her fault? Whose genes are to blame? What if she'd married a different husband?), her alarm at having a child who is somehow 'different', and how she copes with bringing up Nora to understand how her condition affects her life. It's illuminating and inspiring. I knew next to nothing about albinism before and Schank takes us with her into a world of medical discovery, always determined to do the best for her daughter. And of course there's Nora herself: bright, eager and just as keen to ride bikes, explore the world and watch the stars as any other child. A moving story of how an unexpected condition can lead to a more compassionate view of the world.

[Julie · Rating 5 out of 5]

A kindle single that can be read in a single sitting. This is a true story about the author's child who was born with albinism. All emotions can be felt in this book: disbelief, sadness, humor, and more - for parents who had the perfect life and did not believe life could be anything but perfect until their daughter was born with albinism. Slow to identify this disorder - and even slower to actually believe it - this is a gripping story of learning how to cope not only within their own family, but with the outside world as well.
I really recommend this book. It is not a sad, unhappy story - rather it is a book of hope and light and happiness. I hope you read it whether you are a parent or not.

[Selah · Rating 4 out of 5]

I wish this could have been a longer story, the author has a great voice. Yes the story is about her reactions, growth, grief, and even her denial as she navigates the early years of her daughter’s life. The book recounts issues related to Albinism specifically, but also the obstacles and frustrations of dealing with disability and special needs in an able-bodied-centric society. But there’s moments of laughter and beauty and self-reflection on our own flaws and blind spots that makes this a unique read.

[Erin Quinney · Rating 3 out of 5]

A short but interesting account of having a child diagnosed with albinism. Diagnosis stories are so important for parents of special needs children. The whole world shifts. Schank captures the experience well--denial, bargaining, anger, sadness, frustration, wonder, guilt, and a million other emotions that come with a new diagnosis and having a "different" child out in the world. I wanted to know more about albinism and her daughter, but that's another story for another time.

[Liz Smith · Rating 3 out of 5]

True story of a mother who thinks she will win at motherhood the 2nd time around. (She felt she struggled with her first born) But her daughter, Nora, was born with albinism, a genetic condition that has many obstacles. The story is mainly mom's grief over the loss of what she thought would be a perfect child, and her acceptance of how Nora will face the world. It was good! Short. Read on one sitting.

[Lyra Thompson · Rating 5 out of 5]

I read this in just a couple hours, and it was really good! It was so relatable to my family, and I kept reading things aloud to my mom, who had similar experiences to the author. There were a couple instances of strong language that I didn’t like, but other than that, this was great! So many people need to read this, to understand the realities and nuances of what albinism is and what living with it is like

[Nicole Anderson · Rating 4 out of 5]

I will admit that I really knew nothing about albinism before reading this book. I loved how Hana didn't stop trying to help find the right treatment for her daughter and educated herself as much as she could. This was at times very emotional to read about how she struggled with not having the perfect family she wanted and the realization that this was her new reality.

[brian a. thoman · Rating 5 out of 5]

Touching story

As a parent of a child with a chronic condition, it was interesting to read how similar the emotions are- regardless of the condition. When you have a sick or disabled child, the pain and joys are all relatable.

[Molly · Rating 3 out of 5]

3/5

I had no idea what this was going into it, but I found it to be a very cute, informative "lesson-learned" story. Disability exists, it can happen to anyone and life is beautiful, yayyy..i learned a lot from this story and it was worth the quick read.

[Sophie · Rating 4 out of 5]

As a mother

As a mother

I understand that sadness and the happy with a child just not normal as others. The heart break and the thrill, that is life bring you, much deeper than others.
Finally you can give us a vanderfull book .

[Bianca · Rating 5 out of 5]

This was a wonderful short read and very insightful into Albinism, something that I've never really known much about before. I'd recommend it if you're interested in reading memoir type books.

[Selena · Rating 4 out of 5]

Short- interesting read. Puts a new perspective to living with an abnormality.

[Francine · Rating 5 out of 5]

Very quick, very enlightening read

[Patty Marshall · Rating 5 out of 5]

Touching

Thanks for sharing this glimpse into a world we pigmentos would not usually see. Understanding the experience of others is vital to empathy.

[Flashlight Reader · Rating 5 out of 5]

Beautiful!

A look at life - as if seen for the first time by someone like you and me. You'll never experience the night time stars the Sam again.

[Jennifer peters · Rating 4 out of 5]

Enjoyable

I became totally immersed in this story. Wonderful characters, good story line. Good perspective on life with a child with albinism.

[Msoneworld4me · Rating 5 out of 5]

One word review: Honest.
A well written and honest account of the joys and despairs of raising a child that is on the edge of normal. I enjoyed this book very much and suggest you read it.

[Lori Neff · Rating 4 out of 5]

A nice short account of a mom grappling with her daughter's diagnosis. I actually learned quite a bit about albinism from this quick read.

[5707309455 · Rating 5 out of 5]

Relatable

Helps you understand not everyone is alike. It Explains how others live their everyday life with albinism .very good book.

[Pooja · Rating 4 out of 5]

Wasn’t sure what to expect, but after reading the first five pages- I really enjoyed the style and voice of the author. The story is beautiful and depicts motherhood in a strong lens!

[Ms. Reader · Rating 2 out of 5]

I was very disappointed with this book. The author has this huge opportunity to write a book touching the subject of a very sensitive and delicate topic of a child with albinism. And I felt like all she did was complain, whine, and nag about the difficulties that she (as a parent to a special needs child) was going through. She was very negative, and complained constantly not just about her own child but also about other parents. What should've have been an inspirational and encouraging book for other parents going through similar struggles, she manages to just complain about everything, throwing herself a huge pity-party on what she has to deal with because her life is no longer picture-perfect. Thousands of parents are raising, caring, supporting, and coping with special-needs kids (the same or similar to what she is going through) and she decided to write a book about the burdens of having a "less then perfect" child. Shame on her! There is other child conditions that are a LOT worse then what she has to handle, and she acts like she has it the "worst" and puts down any parent who tries to relate themselves to her. She has a very negative mindset and I feel sorry for her child who is going to have to deal with that negativity.

[brandi · Rating 2 out of 5]

Hmmmm

I liked how it started out. Adjusting to her daughter's disability. I have a child with hearing loss and the diagnosis was shocking, so I felt like I related to the author in the beginning of the book. However, as the story went on I was just annoyed by her lack of hope, her inability to enjoy anything about her journey, her rudeness to her other child, and her hatred of curious strangers. It was depressing and not uplifting at all. Her poor daughter.....if only her mother would celebrate her differences and allow her daughter to explain to strangers how she is different instead of making her feel like a pariah. I did like the writing style, but that was it. The writer should write a book about something else....

[Phyllis Lautenschlaeger · Rating 3 out of 5]

The edge of normal

Haha Schank's book about giving birth to a baby with Albinism helped me understand this condition in a different way. No longer did I think only of a white as snow person as so different from me that I tried to forget about them immediately. This shows from birth to six years old, a little girl seeing the world the only way a legally blind person can, out of focus and blurred. With patience from the

[Beverly Evans · Rating 4 out of 5]

Being different.

I found it enlightening to consider how and why we compare ourselves to others. This thing about beauty or being alike or like "others". I've never been comfortable with people who judge others according to how they consider them to be a little different---like those who frequently refer to appearance. Should people have special expectations of me or others because we are "attractive" or not?

[Maureen · Rating 4 out of 5]

It is always a good idea to recognize that someone else has it more difficult than you and taking the time and being able to self-reflect is a huge gift to everyone. I have a better understanding of albinism which I am grateful for and a greater sensitivity for the words that come out of my mouth. It was really shocking the things people would say to her or her daughter. Lastly, the ending made me so happy, and I was hoping for that.

[Helen Wheeler · Rating 4 out of 5]

Touching story

I knew very little about Calvinism before reading this book + was surprised at the challenges this genetic disorder brings with it. However the book is also dealing + adjusting to a child's limitations and putting to one side your prejudices. Thoughtful piece which is overall hopeful

[Irene MacFarland · Rating 3 out of 5]

Personal and informative

This book is a mother's story of adapting to her daughter's diagnosis of albinism. Told with honesty, this book informs the reader without being preachy or too academic in style.

[Heather · Rating 2 out of 5]

Be happy

I did not like this short story, it rambled. I felt it was made in a over active mind of a paranoid parent that would like other people to accept their child with a different genetic marker then most. A disability is a normal occurrence today.

[Mikey Goodmark · Rating 3 out of 5]

Interesting

Very touching. Would've liked a little more information on albinism, but it was a very nice story and I liked the Frank way Hana talks about her daughter's condition and what that has meant for them.