Every year in mid-March, longtime former Oak Park resident Holly Simon leaves her Beverly home in Chicago, and heads to California to celebrate her birthday. Holly-style.
“If I’m not going to do it for myself, then no one is,” Simon, 51, said with a laugh.
She’s quick to laugh. Simon knows how to celebrate the small things with vacations and parties because this is one mom who has been through a lot, and she’s made it through to the other side.
She’s not one to complain about her problems — unless it’ll change your world. Then she’ll spill the beans if she thinks it’ll get you off the couch, if it’ll move you to live your life, to start dreaming and to accept yourself for the way you are.
It all goes back 13 years ago, when Simon delivered her fifth baby. Already nervous because her mother had once delivered a stillborn, Simon was panicking because her baby came out silently.
And then her doctors turned away from her.
Her husband was videotaping the birth, and he whispered to the nurse, “Do you see what I see?” Simon remembered. “He sweetly came over to me and said, ‘I think our baby has Down syndrome.'”
“They said they were sorry, and it put me in the darkest space I could have imagined,” Simon said.
So she did what any panicked mother would do in that situation. She reached for her newborn baby. He looked and smelled like a newborn baby.
“I whispered into his ear, ‘I will never let anyone say, I’m sorry for you,'” she told Nathaniel.
That moment changed Simon’s life, and it altered the trajectory for many others who would find themselves in the same situation.
Simon, a mom and hair dresser, decided she needed to re-teach the doctors, the nurses, and anyone who would come near parents of children with special needs how to approach them after the delivery.
The correct word would be “congratulations” rather than “I’m sorry.”
Simon began doing awareness events with people on her block, then in her city, then with people in her state.
Friends told her, “The way you speak is so simple, everyone needs to hear it.”
And so she formed I Am Who I Am, a nonprofit devoted to celebrating and accepting all children, just the way they are.
Simon and her group bring info packets to hospitals and speak about human decency. She’s met with everyone from teachers to Lady Gaga, but her message is the same: “It’s simple stuff that we take for granted — kindness, inclusion.”
It was all going well until about 1½ years ago, when Simon went to buy herself a bathing suit, and the mom of five glanced at herself in the full-length mirror at Target. She spotted a little dimple in her breast, and assumed that she had cellulite, but she got checked out just in case.
The dimple turned out to be breast cancer.
It took Simon 1½ years to fight that cancer, with a double mastectomy and chemotherapy that landed her in the hospital twice.
“You lose your mind; you are so sick that you don’t see the light at the end of the tunnel,” Simon said. “If I didn’t have my family, I would have lost it, but Nate made me laugh.”
Simon lost her hair during chemotherapy, and Nathaniel asked her to remove her scarf. When she did, he said, “Oh my God, Oh my God, you’re so beautiful.”
Before and during her treatments, Simon documented her thoughts through a blog, feeling liberated by setting those thoughts free.
She decided to take a giant leap forward by writing a book about her life, her special-needs son and her health.
I Am Who I Am took Simon two years to write. It was published in March.
“If I can do it, anyone can do it,” said Simon, who was raised in Oak Park (her mother still lives there). “I barely got through high school, but here I am writing a book. You can be anyone you choose to be.”
That’s the message of the book, which reads partly like a self-help book, partly like a memoir.
Cristina Demacopoulos, co-owner of Stacked Restaurant in Oak Lawn, said she read the book after meeting Simon there.
A woman in one of the booths sitting with her child who had Down syndrome looked sad. Simon went over and told the stranger how beautiful her child was. Demacopoulos said, she was immediately hooked on Simon. But her book made Demacopoulos love Simon even more.
“I thought this was going to be a little book about Holly,” she said. “But it makes me want to be a better person. She gives people such a voice, and my life is just better from knowing her, from reading this book.”