It is about Sara Kovac, who was born with Arthogyrposis Multiplex Congenita which means "crooked joints". It affects 1 in 3,000 babies. It is a congenital defect that leaves the babies shoulders, arms, and fingers shortened and lacking muscle. It occurs in varying degrees in all cases.
Sara's arms, which are unable to bend, are too weak to do much, and they have a shriveled appearance.
Sara takes this book and tells basically three different stories. The first is about her being born and her parents, in 1983, with no real support, deciding to keep and raise Sara. Their faith in God is a big factor. There is a lot of talk about God, mostly by Sara, but it fits well into whatever the situation is. Her parents went to church every week and learned to do what they could to help their daughter but give her her independence. There was no book to help them at the time so they learned as they went. Sara's legs worked fine so she did things like roller skating which her parents were terrified to let her do because if she fell and broke her already weak arms, which she did a few times, the last being the worst, it just meant more pain for their daughter who was already trying so hard to adapt to so much.
For example, Sara did not have the fingers to button buttons and she did not want to use the adaptive button closure so she learned a way to button her shirt herself. And her jeans, well that was another story. She says things were not too bad when she was little. Children are generally more accepting. But the older she got, toward middle school, she was made fun of for her pull on jeans.
She learned to do many, many things with her feet which is amazing but, not allowed say at a pizza parlor. So Sara had to deal with so many issues of people not understanding just how important her feet are and that they are not dirty or inappropriate to use.
She went on to describe her lonely High School years which, after reflecting back, she realized she pushed people away. But that is not how she saw it. We ALL know High School is tough enough without having a disability.
She then tells of her college years. Only eight minutes from home but on her own for the first time. And she decided to let people in. She decided to be a totally different person than she was in High School. And she had fun for the first time. She felt accepted. But this did not last very long. She was making the wrong kinds of connection and looking at people superficially which is exactly how she does not want to be looked at. She did make friends though.
And that is all in the first half of the book. There are many places where she quotes God and explains how she felt about the way she was born, the things that happened to her, life in general, and His plan for her. Which she was still figuring out. And there are "Journal" sections, small ones where she asks the reader question like "When have you experienced someone else's ignorance?" and some follow-up questions.
The next section of the book tells about Sara meeting her husband Adam. She met him in 2006 after he sent her a message on MySpace asking for a date. This was before the real online dating craze started. A friend of her happened to know him and vouched for him. I do not want to ruin the story of them meeting because it is just so special and sweet.
She tells about their dating, and his eventual proposal which, in one of the funniest parts of the book, Sara knowing he was going to purpose, suggested he have a talk with her father. They were all very close, both families. Sara and Adam and Sara's parents went on a vacation together. But the vacation they went on where Adam tried every which way to corner Sara's father to talk to him did not work out. Let me make that clearer. The vacation was fine; Dad was nowhere to be found. Dad knew he was going to have to let his little girl go soon and he was not ready. I just have this funny picture in my head of them all up in the mountains and Dad disappearing every time Adam came around. Ducking and dodging.
But Adam got to dad after they came back. So the wedding came and went. And now it was time for Adam to see how Sara really lived and survived everyday for real. She mentions him wanting to do so many things for her that she already figured out how to do, like open a pasta jar. On the floor with her feet and a hand. But as any loving husband, Adam saw her struggling with a particularly hard jar and, Sara knew she could do it and would not turn the jar over to Adam, and it turned into an argument. One of many they would have. So, as many newlyweds, Adam and Sara had to learn how to get along, live with each other, get used to each other but there was the added tension of Sara and her need for complete independence. Which brings us to the last part of the book.
Sara's son. Yes, Sara had no OB/GYN problems so she was able to conceive. Her only issue was she did so many things with her feet, as her stomach got larger, she started loosing her independence. And this was a real struggle for her. Then when the baby came, you can imagine she had to re-evaluate her priorities and learn to ask for help.
But as you read her story, it is amazing how she adapted, and how her son, Ehtan, somehow knew that things were not done the same with Mommy as with Daddy. Such as bath time, especially as he got bigger and it was harder for Sara to wrap her small arms around his growing body.
And the book tells of the wonderful love that came into Adam and Sara's life. Then how, one day while her and Ethan were having breakfast at the computer desk, Sara read that CNN.com was asking for readers to upload stories of how their families coped with having a disability in the family. Sara explained how this kept calling to her and she could not shake it.
So although they were not specifically asking for stories like hers, from the disabled person's perspective, Sara could not help but think someone would be encouraged by seeing how she has adapted.
A few days after she saw the call for stories, she set up a tripod and taped about an hour and a half of a typical morning for her and Ethan. No second takes. A little editing. And things moved quickly from there.
She uploaded the video and within a few hours had a couple hundred views. Then she got a call from an editor at CNN. They wanted to interview her. As Sara braced herself for seeing a quote from herself on CNN, she instead saw SHE was on CNN as the top article, with the video, shaved down a bit, featuring her and Ethan. The original one that she uploaded. And it was all over. Her husband saw the story at the airport!
Now her story and her disability was out there for the world to see. She has learned that struggle is universal and that we all have something to teach someone else. And if somebody seems perfect, they are probably struggling too just better at hiding it. And maybe are not asking for help, especially God's help.
She ends the book by talking about speaking engagements, and again doing things for interviews that she has not done before.
But she talks of Ethan. And how he is. For example he will hold his hand up to his mother's hand and say "Battery?". Sara just of course knows this is his way of trying to make sense of things. She hopes his life will be easier than hers but reminds us no life is without challenge. She prays that he will not be made fun of or have a hard time because his mother is different. She takes the last pages of the book to reflect on Ethan's future.
Then the final 10 pages of the book are of Sara asking her parents questions, to which they are to give honest answers about when Sara was born. Its was beautiful.
My only complaint with this book is it was very simple. I know it was not meant to be The Great American Novel and I believe Sara got her point across but I saw more than a few places that she could have expanded her ideas. But given the fact she typed this with her feet, I guess I have to cut her a break. Or would she want that? Probably not.
Plus she repeated herself quite a few times. It was just noticeable.
On a personal note, with the many health issues I have, including Multiple Sclerosis, I connected on so many levels with this book. And I am so very happy to Abingdon Press for providing me with an Advance Reader Copy.
This book is due out on December 17, 2013. I would definitely recommend it.
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