By Harriet Heydemann
“Let’s send her picture to Dr. Doom and Gloom,” her father said every birthday. That’s what we called the doctor who told us she wouldn’t live past the age of five or ten, or maybe, if she was lucky, she’d make it to fifteen. The doctor’s prognosis was the worst we had heard. Most of the experts we consulted scratched their heads. Ariela never sat up, or crawled, or walked. No one knew what was wrong or why she was the way she was.
“Look how well she’s doing.” We said this every birthday past fifteen, knowing we were being smug, knowing we might be jinxing her luck. We laughed about Dr. Doom and Gloom. “She doesn’t know Ariela,” we said. “Ariela’s a trouper.” Sometimes we used the word “miracle.”
Every birthday, I relived her birth, just as my mother did with me. “What was it like the day I was born?” I’d ask my mother. She would tell me the story. How she was sedated. When she woke up, she had a baby.
“No sedation,” I said to my doctor who told me to take Lamaze classes. But the Lamaze teacher never said, “In and out of distress” and “No progress.” After hours that felt like days, I was rushed to the OR for an emergency
C-section. I couldn’t feel a thing or watch her birth.
I admit. I spoiled Ariela. After all, she was an only child. Ariela could have just about anything she wanted any day of the year. It was a challenge to make her birthday special.
At least a month before her birthday, she would decide what kind of event she wanted, who would be on her guest list, what food to serve. Whether she’d have a chocolate, white or carrot cake. But that’s where her power ended. She had little control over anything that mattered. She held court over her party from the seat of her wheelchair. She smiled and laughed with her friends and understood everything they said. But she was never able to speak. We read her facial expressions and her body language. She answered our questions with “yes” and “no” cards or a blink of an eye. By her eighth birthday, she used a computer with a digitized voice, a child’s version of Stephen Hawking’s device.
There would be more than one celebration. If her birthday fell in the middle of the week, she’d have a few close friends over for cake. On the weekend, another cake and another party for a larger group. Then, because her birthday came right before Thanksgiving, we’d celebrate when family came into town for the holiday. She liked being the center of attention, all her friends surrounding her, singing “Happy Birthday.” They filled our home with constant banter, interspersed with squeals of laughter and whispered secrets.
By the time Ariela turned sixteen, she could no longer eat the cake or anything else. Her food, a nutritional supplement, went into her stomach by way of a long, skinny tube. Sometimes I put the tiniest taste of strawberry jam in her cheek, washed down with a few drops of pink champagne, her favorite drink. We celebrated every year, like this year would be the best, like she would live forever.
I wanted all her parties to be perfect; the kind that linger in your memory for days after, where everything goes smoothly and no one wants to leave. Her friends still talk about her twenty-first birthday in a downtown nightclub. But the last one, a bowling party, was far from ideal. I chose a Sunday instead of a Saturday, and a few of her friends couldn’t come. The street was dark, and people couldn’t find the place. Almost everyone was late. The music was too loud. The bowling alley was slow serving the pizza. The strobe lights gave Ariela a headache. Her bowling ramp and lucky pink shirt, both previous birthday gifts, didn’t bring the usual show of strikes. I should have checked out the place beforehand. She looked at me with an expression that I knew too well. Roughly translated, “You really fucked up this time.”
“You’ll have a better party next year,” I promised.
As Jews, we mark the anniversary of a death, but what about a birthday? Is a birthday sacred? Or does only a mother hold that day sacred? My mother used to tell me, “You may not know the father, but you know the mother.” Sedated, anesthetized or awake, the mother was there.
My missing her is the same lonely, painful, deep hole every day. Her birthday is not different, except it is. It feels strange not to have a party, and feels even stranger to have one. We can’t have a cake with candles, and we can’t sing “Happy Birthday.” I worry that her birthday will become just another day. It’s a challenge to make the day special.
Her friends text and email, prodding me to do something. On the day of her birthday, about a dozen young women congregate in our house and reminisce.
Many of Ariela’s friends came into her life as caregivers, attendants to help with her personal needs and accompany her to medical appointments, classes, movies, concerts, bars, wherever she needed or wanted to go. For the last seven or eight years, she hired millennials, women close to her in age. Over time, their relationships evolved into friendships. Her friends went on to become physical therapists, nurses, speech pathologists, social workers, and teachers.
“I imagine her sitting in her chair next to the couch.
She’s grinning along with them.
This was the first birthday party she missed.
She would have been twenty-seven.”
“She changed my life, the way I think about disability and ability,” one friend says.
“She inspires me everyday,” says another.
“She didn’t want to be an inspiration. She made fun of people who patronized her.” They all nod at this.
“She made me laugh.”
We eat pizza and drink pink champagne. We gather around the TV and watch a video, a photomontage of Ariela’s life. Her friends point to themselves in the group shots.
“We’re at the Embarcadero in that one. We went to watch a flash mob.”
“That one’s from her trip to Israel. Dig the hottie she’s sitting with.”
Everyone laughs at Ariela dressed as a zombie, her eyes blackened, mouth smeared a bloody red, her Halloween costume two years ago.
The sounds of young women laughing, joking, teasing fill our home. I imagine her sitting in her chair next to the couch. She’s grinning along with them. This was the first birthday party she missed. She would have been twenty-seven. So there, Dr. Doom and Gloom. She beat your prediction by over eleven years.
Surrounded by Ariela’s friends, I understand why she said the “L” in her name stood for “lucky.” I think of the lasting impressions she made on their lives, and I know her birthday will not be forgotten.
I mark her friends’ birthdays in my calendar. I’m not crazy about pink champagne, but I raise a glass to all of them.
Harriet Heydemann’s work has been published in The Big Roundtable, Huffington Post, and A Cup Of Comfort for Parents of Children With Special Needs.