What inspired you to write Up, Not Down Syndrome?
When Alex was born, I thought my life was over. I was devastated. I cried. My husband cried. I wondered what I did to my other two boys, Josh and Sam. I have since realized I love Alex as much as my other two sons. I want the world to know how much I love him. Alex is one of my life’s greatest gifts, along with Josh and Sam. I have two graduate degrees, and I have more understanding from Alex than from my advanced degrees.
Who should read this book? For whom was it written?
The people that should read my book are parents, doctors, lawyers, teachers, school psychologists, government officials, police, people considering cannabis as a treatment, Down syndrome advocates, people dealing with epilepsy, people with a cancer diagnosis, siblings and any person dealing with a challenge. I believe we can take our struggles and make them triumphs. Challenge is an opportunity to be extraordinary. The book was written for my three boys. I want all three to know how much I love them. It was written for a parent considering this path and for all the professionals that will touch the life of a child.
How does the overall style and structure of the book relate to its content?
The style and structure of the book is organized with my story of raising Alex, the lessons Alex has taught me and, if he could speak, what he would say. Alex is a person; he is in there, but he has difficulty expressing himself. I wanted the book to allow the reader to understand my story, learn from what I learned and gain insight from Alex’s voice. Including his voice was my sister, Susie Garber’s, idea. As a writer herself, she thought it would help the reader to feel how Alex feels. My husband, Michael Schwartz, thought I should end each chapter with the lessons I learned from Alex. show a thread of similar sensibility at the crux of it all.
If you could only leave readers with one lesson from the book, what would it be?
How we live our days is our choice. Each one, while cliché, is a gift. What we choose to do with our day, our relationships, our professions, our children and the world is our choice. While circumstances can seem overwhelming and impossible, there is always hope. Rabbi Wolpe, during a talk in which he recounted a story about a father and son in a concentration camp, said we can live for three days without water and three weeks without food, but we cannot live three minutes without hope.
Joel Osteen reminds us to stand up on the inside, and I do when things seem darkest. My mom, JoAnne Levine, is the ultimate eternal optimist. Mom was a single mom raising three girls (one with mental challenges), she has had breast cancer three times and still she smiles and points to the sun over her morning coffee. My mother-in-law, Sandy Schwartz, is another ultimate eternal optimist. Sandy raised three boys while working at a private investigating firm and would later lose her son, Barry, her husband, Lenny and her mom. Still, she is present and always there for her family with hope, love and warmth to share..
What advice would you give young parents whose child has just gotten a diagnosis of Down syndrome?
The advice I would give is “Celebrate!” Your baby is a baby. I would say the six words, “Never ever, ever, ever give up.” The child is an addition, they are not taking anything away from you. Say the serenity prayer. G-d, grant me the serenity to accept the things I cannot change, courage to change the things I can and wisdom to know the difference. People will respond to your child the way you respond to your child. I will always be grateful to Grace for coming to the hospital when Alex was three days old, in the NICU, to tell me those last three things. I still use them every day.
Be happy, always up, celebrate. Life is what we make it. It is beautiful. Anything worthwhile is hard. My friend, MoonSong, said, “People that matter don’t mind, and people that don’t matter mind.” MoonSong went on to say, “Be comfortable in the skin you are in.” I think we have to be prepared for stares and people that may not fully get it. It is okay. It is all part of the lesson our child is here to teach us. s.