Her eyes get me every time.
Those beautiful eyes that speak volumes and reveal so much, yet remain eternally enigmatic.
I was in Los Angeles for a getaway weekend with Shaul when I first heard that Olivia was ill. She had stopped breathing at her babysitter’s house.
“Keep me posted,” I said.
Throughout the weekend, at LACMA, while walking in West Hollywood, and touring the design shops at the blue, green, and red-tiled buildings of the Pacific Design Center, I was preoccupied.
Babies get sick, I rationalized. Babies are fragile. I remembered how tiny Olivia looked when I held her at Christmas, just a month before.
Shaul pointed out a fancy Japanese-style soaking tub for $10,000.
“Wow! I could live with this!” he exclaimed.
I wasn’t present. Unfortunately, I wasn’t present. Most of the time, even on good days, I took pride in “being busy” while lacking the maturity to be truly available, in all senses of the word.
“It’s beautiful,” I said blandly.
Olivia was on my mind. Julie and Todd were on my mind.
“We think it’s pneumonia,” they said when I called. “We’ll see when she can breathe on her own. Right now, she’s on a ventilator.”
Calling people in the hospital is always fraught with self-interrogation. I want to let people know that I am thinking of them, but I also don’t want to be bothersome.
The doctors kept trying to take Olivia off the ventilator, but she struggled.
I thought of my dear niece Olivia, at three months old, trying mightily to breathe. I thought of my sister Julie and my brother-in-law Todd. I imagined them watching their tender little baby girl gasping — and failing.
I found myself present.
I don’t remember if it was when Olivia was in the hospital in Des Moines or when she was helicoptered to the Mayo Clinic in Rochester that I heard the words “muscle weakness.”
Besides her pneumonia, Olivia was exhibiting “muscle weakness.”
What did that mean — “muscle weakness”? What could we expect? Surely, it’s treatable. Of course, it’s treatable. Is it treatable? How soon? How definite?
Doctors know. I had faith that the doctors would know. If the doctors in Des Moines didn’t know what was wrong, certainly the doctors at the Mayo Clinic would. We have the best medical system in the world. They won’t let a three-month-old baby suffer.
Please don’t let her suffer.
A few weeks later, I was on a job with a client when Shaul left a voicemail for me.
“You need to come home. Julie and Todd are taking Olivia to Johns Hopkins in Baltimore. They don’t know if she’s going to make it.”
I rushed back to San Francisco and immediately called Julie.
“I don’t know what to do,” Julie sobbed.
“Do you want us to come out to be with you?” I asked.
Coincidentally, my sisters Jenifer and Jill had come out to San Francisco for a long weekend. None of us knew at that point the danger that Olivia was in.
Jenifer and Jill were out for a run in Golden Gate Park.
Shaul held me and let me cry. I’ll always love him for that. Sometimes, we need to cry when there is no easy fix. Jenifer and Jill returned from their run, and then we all cried together.
The next morning, Jenifer, Jill, and I were on a flight to Baltimore to be with our sister…and our niece.
We met Julie and my mother in the cafeteria of the Johns Hopkins Medical Center.
When Jenifer hugged her sister — her twin — and said, “This is a hard day, isn’t it?,” I broke.
We all did.
One definition of family is “when one of us is hurting, we all hurt.”
We had heard that the doctors at Johns Hopkins were the best doctors in the world. We had heard that at Mayo, too. The news they delivered was devastating.
“She will probably not live past her second or third birthday. She won’t be able to walk. She may not be able to speak. Prepare yourself.”
During those days in Baltimore, we held each other and cried some more. We talked about the future. We talked about the what ifs. We held onto expectations, like flapping birds in our hands, and tried to put them back into filigreed cages. We let Julie and Todd know that we loved them. In private, I improvised prayers to capricious gods, simultaneously begging them for intervention and hating them for their apparent lack of benevolence.
The last night we were at Johns Hopkins, in the waiting area of the pediatric ICU, we were huddled together around Julie, with tear-stained faces, glazed eyes, and leaden hearts.
A beautiful African American woman whose own son was in the ICU came over to us.
She took my sister Julie in her arms.
“I know you’re hurting,” she said. “Jesus is looking over your baby. Jesus loves you and loves your baby. He will not let your baby suffer. You are loved.”
It was one of the most beautiful gestures I’ve ever seen.
Your baby will not suffer. She is loved. You are loved.
Sometimes, the message we aren’t expecting is the one we need to hear. Sometimes, it’s not even the message, but the spirit of the messenger that lets us know that we aren’t alone.
Olivia is 19 now. She has outlived her life expectancy by at least 17 years.
Initially, Olivia’s diagnosis was elusive. Maybe it was a vaccine-related illness. Maybe it was an autoimmune disorder.
When she was diagnosed with Spinal Muscular Atrophy with Respiratory Distress (SMARD1), we didn’t take much solace in the diagnosis itself. The illness is still rare, ravaging, and debilitating. The rarity of SMARD1 left us with lingering questions: “What does ‘luck’ mean? What does the universe intend — and for whom? Who was chosen — and for what?”
Being able to name something does not answer those questions nor does it ameliorate the suffering. At the very least, being able to name something gives us the power of language to make sense of the unknown. A wise friend once wrote, “Until we can name it, we can’t heal.”
The name brings into consciousness what is real.
“The real” is small consolation when you are hoping for something else.
What remains real is that Olivia is still with us. She isn’t a diagnosis. She is a young woman, with strong convictions and definite preferences.
And those eyes…
Olivia still has gorgeous eyes. Olivia does not speak, but she lets us know how she is with her eyes. They twinkle with delight when she is happy, and they crinkle and fill with tears when she is upset.
Olivia’s eyes have become her agency in the world. She still communicates with her eyes and all the emotion, need, and desire that they hold. She also communicates with a technology-assisted device that allows her to select, with her eye gaze, words, names, and phrases.
When I think of “technology,” I immediately conjure smart phones, email, artificial intelligence, social media, and automation. In many ways, they haven’t served us well, except to keep us distracted, overworked, polarized, obsolescent, and inhumane.
For Olivia, technology has become integral and vital to her survival and thriving. Olivia uses a chair and a ventilator. She uses a mechanized lift to get her in and out of the van. She loves her videos and her music. Perhaps technology, on its own, means nothing. Technology + kindness + quality of life may be the more apt equation.
Without humanity, “technology” is just a collection of lights, bits, bytes, disembodied science, and silicon.
Olivia has revealed the best — and worst — of us. Nurses that cared for her like their own child and became like family. Nurses that turned out to be petty, mean, and uncharitable. Nursing agencies that went above and beyond to provide respite care. Nursing agencies that didn’t fill shifts and seemed to forget that Olivia was a person. Family members who came around to show love, care, compassion, and interest. Family members who disappeared. Teachers and administrators who made a place for Olivia to learn and feel welcome. Teachers and administrators who regarded her as a burden. Strangers who smiled. Strangers who stared.
For those of us who love and cherish Olivia, I won’t say that we have become better people because of Olivia. It is offensive and condescending to say so. People with disabilities don’t exist to make us “better people.” I would offer, though, that some of us have become more aware — of expectations, of judgment, of convenience, of making space for another…
…and the humility of making bargains with the universe.
“Let her recover from this illness…”
“If she doesn’t recover, at least let her walk…”
“If she can’t walk, at least let her speak…”
“If she can’t speak, let her breathe on her own…”
“If she can’t breathe on her own, help us to keep her alive…”
Bargaining assumes the sanctity of “what should be,” rather than “what is.” When we bargain, we feel like what has been offered is not fair nor “good enough.”
I used to be sad about Olivia. I’m not sad anymore. She’s alive. That is more than “good enough.” I celebrate her and what it means to breathe.
When one has a family like Olivia’s, it’s hard to feel sad.
Olivia lights up around her family, especially her mother Julie, her father Todd, and her brother Connor. They are her people, and she knows that they adore her.
Whenever I’m having my existential crises around the notion of “luck” and “chosenness”, I remember Olivia and her family, and I breathe more easily. They belong together. Love, deep and true, exists and thrives in abundance. They operate at their own speed, as they should.
With wheelchair dance recitals, softball games, cheerleading, and costumed birthday parties, they continue to show up for her. They let her know that she is valued. She is a part of the world, not just as an observer or a convenient mascot.
Sometimes, I wonder where Julie learned to be such a good mother. I need only look at my own mother Penni — Olivia’s grandmother — and I understand. With handmade quilts, capes, drawing lessons, stories, and songs, my mother has extended her own brand of generous and selfless mothering to her granddaughter. The affection is mutual.
Aunt Jenifer has had a harder time of it. One would think that she, as Julie’s identical twin, would provide Olivia with some familiar comfort. When Julie and Todd have been out of town, Jenifer has gone over to be with Olivia, to sing with her, read to her, and play games with her.
“Goodbye,” Olivia says, dismissively, via her computer-assisted “talker,” shortly after Jenifer arrives.
Olivia is not fooled by this “imposter Julie.”
We know the smell of our own mothers. We know the cadence, rhythm, and tenor of our mothers’ voices.
To Julie’s credit, she has formed an unshakeable bond with Olivia that can only be described as spiritual and primal. The lifeline between them is strong, intimate, and resilient. They know each other.
To Jenifer’s credit, she keeps coming around, despite being petulantly and sassily rebuffed by Olivia. Jenifer is a mother herself. She knows what it means to care for family unconditionally, even when they don’t reciprocate it.
Even when they break your heart.
I am acutely aware of the notion of “mothering” on this Mother’s Day 2020, in the midst of a pandemic. We are fragile. We are hurting. We are scared. Sometimes, we find it hard to breathe.
We could use some maternal love and nurturing.
Where do we find it? How do we offer it?
I sent Shaul a text today with my usual Mother’s Day greeting.
“Happy Mother’s Day. You’ve always been like a mother to me.”
I laughed to myself because we have been doing this shtick for twenty years. It is our inside joke. There is truth in it, too. As my partner, my friend, and my family, he has loved and cared for me unconditionally, even when I wasn’t at my best.
My niece Madeline texted me this morning, too.
“Happy Mother’s Day, California Mom!”
She lived with me for a while when she moved to San Francisco. We cooked together, laughed together, and talked about things that mattered. I felt like I had a daughter.
I am not a parent nor will I be in this lifetime. I know something about mothering, though, because I’ve seen some of the best examples from my grandmother, my mother, and my sisters.
Perhaps the best way to commemorate this Mother’s Day is to search ourselves for our own maternal instincts. How do we demonstrate care, love, compassion, and selflessness, even when the future seems frightening and tenuous?
I’m thinking of Olivia and her eyes today, too. Those magnificent brown eyes that exude light, joy, wonder, sadness, and pain.
“I’m here,” say the eyes. “I’m alive, I’m breathing, and I have a place. I am here to be loved and cared for.”
Yes, you are, dear Olivia. We all are. We are with you.
Thank you for your lessons, and all you’ve compelled us to be.