Life and Times of Staci and Jethro: December 2007

Rarely do I read a book that changes my life and affects me in such a way that I'll never forget. I recently read (actually listened) to "The Memory Keeper's Daughter" by Kim Edwards. I was a little apprehensive to check out the book on cd, but I figured I was getting it for Jethro and probably wouldn't listen to it anyway. I read the back of he case at the library and thought Jethro might enjoy it. The longer it sat on our desk at home the more I wanted to listen to it. So began the journey that would change my life.

It is 1964 in Lexington, Kentucky, and a rare and sudden winter storm has blanketed the area with snow. The roads are dangerous, yet Dr. David Henry is determined to get his wife, Norah, to the hospital in time to deliver their first child. But despite David’s methodical and careful driving, it soon becomes clear that the roads are too treacherous, and he decides to stop at his medical clinic instead. There, with the help of his nurse, Caroline, he is able safely to deliver their son, Paul. But unexpectedly, Norah delivers a second child, a girl, Phoebe, in whom David immediately recognizes the signs of Down syndrome.

David is a decent but secretive man—he has shared his difficult past with no one, not even his wife. It is a past that includes growing up in a poor, uneducated family and the death of a beloved sister whose heart defect claimed her at the age of twelve. The painful memories of the past and the difficult circumstances of the present intersect to create a crisis, one in which his overriding concern is to spare his beloved Norah what he sees as a life of grief. He hands the baby girl over to Caroline, along with the address of a home to which he wants her taken, not imagining beyond the moment, or anticipating how his actions will serve to destroy the very things he wishes to protect. Then he turns to Norah, telling her, “Our little daughter died as she was born.”

From that moment forward, two families begin their new, and separate, lives. Caroline takes Phoebe to the institution but cannot bear to leave her there. Thirty-one, unmarried, and secretly in love with David, Caroline has been always been a dreamer, waiting for her real life to begin. Now, when she makes her own split-second decision to keep and raise Phoebe as her own, she feels as if it finally has.

As Paul grows to adulthood, Norah and David grow more and more distant from each other. Norah, always haunted by the daughter she lost, takes a job that becomes an all-consuming career, and seeks the intimacy that eludes her with her own husband through a series of affairs. Feeling as if he’s a disappointment to his father, Paul is angry and finds his only release through music. David, tormented by his secret, looks for solace through the lens of his camera, the “Memory Keeper,” trying to make sense of his life through the images he captures.

But as The Memory Keeper’s Daughter so eloquently shows, life is a moving image, unfolding and changing beyond our control. Despite our desire to freeze a moment or to go back into the past and alter events, time presses us forward. With her heart-wrenching yet ultimately hopeful novel, Kim Edwards explores the elusive mysteries of grief and love, and the power of the truth both to shatter and to heal. (You can read more about the book and an interview with Kim Edwards here.)

When Katya was born, our lives changed, not only because she was our first child, but because she has down syndrome. I'd heard of down syndrome, but didn't know much about it or really thought much about it. After Katya was diagnosed, a million thoughts and emotions ran through my head. There was disbelief and fear, but more than that, there was peace. I knew that even though things might be different and hard at times, Katya was my daughter and I love her and things wouldn't be more than I could handle. It may take some time to discover her struggles and strengths, but everyday will be an adventure. As she has grown , we have learned so much about her and her disability.

Some days are harder and more frustrating than others, but those days are few. Katya brings so much joy into our lives that I wouldn't trade her, disability and all, for anything. With Katya's Early Intervention and physical therapy, we learn more of what we can do to help her reach her full potential. I know that Katya may do things a little slower and take a little longer to learn things than other kids, but I know that she can accomplish so much and we can help. My views on that were reinforced after listening to this book.

I was so distraught when David, the father, immediately wanted Phoebe institutionalized. I do realize that that was a common practice back then and peoples' views on the disabled were so different, but I couldn't imagine sending the child that I had grown to love over 10 months away never to be seen again. I can see why Caroline, the nurse, refuses to put Phoebe in the institution after she sees the condition of those forgotten children and adults. As a mother, I would have a hard time putting away and forgetting about your child and the hopes and dreams you have for them. It makes me so sad to see David lie to his wife and tell her that Phoebe died and hold onto that lie for his whole life. I can see why Norah was so upset and their relationship struggled as she sought for the love she never received in other places. I am not condoning her having an affair, but I have sympathy for her and her desire for closure and to be held tightly and comforted in the loving embrace of one who loves her. It is sad to see David and Norah grow apart with the lies and mistrust creating a bigger rift every day. Even though the circumstances of Phoebe drove the love from David and Norah, it brought love into other lives.

Caroline had so much love for Phoebe and others in turn loved Phoebe and changed. There was the older female professor whose father Caroline took care of and boarded with who found love. Caroline, who had never been truly loved back, even found love. So many people fell in love with Phoebe and changed their thoughts and opinions about the disabled. When faced with a trial and experience like this, one can either choose to accept it and love all that happens or reject it and accept the sadness and loss of love that comes from that rejection. I am constantly hearing from people how they know a child with down syndrome and how they are so happy and bring so much love. I'd have to agree with them. It seems that everyone who comes around Katya just falls in love with her and there is just so much joy. It's amazing to see. At first I didn't believe it, but everyday I see it happening over and over again. Whenever we go to the store, people look at her and they smile. They don't ever hesitate, they just start smiling. The love that abounds from a child like Phoebe or Katya is just amazing and you can truly see the innocence and love of children. I love waking up every morning and seeing the love that she has and brings. It is hard to comprehend sometimes.

An aspect of the book that I really appreciated was Caroline's fight to get Phoebe in public schools and to be given the opportunity to do all things normal kids can do. I am so appreciative of those early advocates and parents that fought for the rights of their disabled children. Because of them, Katya can go to public school and do anything that she wants. There are still barriers that need to be broken down, but there are so many opportunities for her.

Every part of this book had a different effect on me. Parts made me laugh. Parts made me cry. Parts got me really frustrated. The overall effect of this book was happiness and gratitude. I am grateful to have Katya in our family. I am grateful for all the opportunities Katya has to become the person she wants to be. I am grateful that attitudes and opinions on the disabled have changed over the years. I am grateful for family and friends that accept Katya and don't judge her or us because she is disabled. I am grateful for a wonderful husband who loves his daughter and would never think of giving her away. I am also grateful that my husband loves me so much that he would love and support me every day. I am happy that we were blessed to have Katya in our family. I am happy to see how happy Katya makes me and everyone she comes in contact with.

I am lucky. I am lucky to have Katya. She has changed my life. Reading this book changed my life. I have more understanding and more love for the disabled and for disability advocates. I feel more blessed than ever to have the opportunity to raise Katya and feel more motivated to help her achieve all of her dreams. I want her to have access to everything and I will fight to give that to her. My eyes are opened to the amount of love these people have and how truly lucky I am. I'll never take it for granted or feel sorry for myself, because I truly am one of the lucky ones.

I mentioned this website earlier and wanted to mention it again. My class has gone to great lengths to set the day aside to help raise rice for the United Nations. They wrote a proposal to the administration, they planned out a schedule, made permission slips to teachers, and passes back from the library. I am so proud of how hard they worked. So, a lot of students will be filtering into the library to go to Freerice.com and see how much rice we can to donate to the United Nations. The totals for the past few days are in the image below.

If you have a chance, please spend a couple minutes there and pad our stats. ;)

My students would really appreciate your help.

In other news. The SWAT team wiki is up and running. It looks great. The students have done almost all of that all by themselves. They are doing a remarkable job! Stay posted for the website for gratitude if we can ever figure out how to get the form to work.