The day does not pass in a blur. It passes slowly, slowly, a microcosm of my father’s illness of the past 25 years. I get the phone call and crumple. My flight is not until one in the morning, and it is only three in the afternoon. I pack, clean up from lunch, do laundry, do more laundry, rearrange the toys and take out the garbage.
Time passes slowly, slowly. The baby squirms and wiggles and cries the whole flight and I resent him, my husband; everyone on the flight who is not my mother. We land and inch along in the painfully slow traffic.
My mother calls. "He's still here, Dina."
"He's waiting for you."
But he is not waiting for me. Or at least, he is not only waiting for me. Because I hug him and kiss him and cry and tell him I am here and I love him. His mouth gapes, bloodied and sore. His eyes are open, glazed and unseeing. Or maybe seeing everything.
But still, he waits.
He shouldn't be here, the doctor says. No one can live with failed kidneys and their lungs filling with blood. He is brain dead, he says. He had two cardiac arrests and is bleeding out from everywhere. He is not really breathing, the machine is.
Don't unplug him, comes the startling answer from the Rabbi. Do everything you can to keep him alive.
Is he alive? I keep feeling like he is going to turn to me and smile.
My parents had a vision of the kind of household that they would run, and they worked together as only those who love each other very much can to make their dream a reality. My parents’ house has four doors, one on each side, like Abraham’s tent, and fittingly, I grew up alongside people who started off as strangers and ended up moving in. So many people refer to my parents as “Ima” and “Abba,” it’s hard to differentiate between their biological children (and there are many of us!) and those who became honorable members of the family. Ours was a home full of music and laughter and love, just as my parents wanted it to be. Then, when I was nine years old, my father was diagnosed with an illness that crushed their dreams to dust.
My father had been sick for almost as long as I can remember.
I can call little overused memories to the surface of my mind, memories of walking down the street holding my father’s hand, pride in my heart, knowing how people looked at him, so tall, so handsome. I remember being held against his chest when something frightened me, listening to the steady beating of his heart and knowing that in his arms, nothing can hurt me.
My father has not been able to hold me in his arms for many years now.
I wish my father could embarrass me like that again.
I remember my father standing in the hallway of my elementary school, reading a poem on the wall out loud to me. “Dina! Listen to this! ‘A smile,’” he read, “’costs nothing but gives much.’” Girls walked by and stared as he went on to read the whole thing, and I wanted to melt into the floor.
I wish he could embarrass me like that again.
My father’s legendary heart is encapsulated best when he brought home a woman and a child late one night. She was a single mother and new in town. She was lost and alone. They stayed in my house for months.
Money needed for our rusty station wagon went to fund a needy family. To my father, everything we owned was viewed in terms of how it could be shared.
We hosted Jews from all walks of life at our table, and my father, a baal teshuva himself, never lectured, never delivered thundering speeches. He was a quiet man, a sensitive man who would cry when reading children’s stories to us, and we would run, giggling, to get him tissues. He changed people’s lives by leading a life of Torah with his heart on his sleeve.
We sing a lot to him. The nurses don’t mind; not in this ward. We sing the old songs, the ones we grew up with. The ones we remember dancing to with him after Havdala every motzie Shabbos. I say Psalms and daven slowly, carefully. There is no rush. I have nowhere to go.
This time that I have with him is an unexpected treasure, one last gift from him. So I tell him everything. I tell him about my hopes for the future. I tell him about my plans for now. I tell him about my pitfalls, how my selfishness gets in the way of me being who I want to be and how I wish I was more like him. My siblings come and go. We are sad, but we are altogether, and a round of “remember when?” ends in ringing laughter. Some visitors do not know what to make of this, the laughing vigil, and honestly, I don’t know what to make of it. There is no place in my mind to put this.
His eyes look lifeless, but his soul is here, right?
He is here. He is not here. I want him to live forever. I want him to go; it’s just too much pain in a lifetime of pain. The vacant eyes, so dry from being open for days at a time, the mouth a hole where his smile used to be, and the feeling that he hears every word I am saying...
I call my daughters, ask them about their day. They sound so mature on the phone. They ask for presents. I promise presents. I am 6,000 miles away from them promising gifts and love and then hanging up on my children while I am walking the streets of New York arm in arm with my sisters waiting for my father to die.
Then he got sick, and his digression was slow and incredibly painful to watch. Chronic Progressive Multiple Sclerosis, the rarest of all subtypes of MS, is like dying in slow motion.
Chronic Progressive Multiple Sclerosis is like dying in slow motion.
My parents tried their best not to let it change anything. We still turned up the speakers full blast every motzie Shabbos and danced around together in circles. We still invited a million Shabbos guests to our table. We even took in foster kids. Meanwhile, my big, strong, handsome father regressed from walking shakily to walking with a cane, to a walker, to a wheelchair, to a bedridden paraplegic, then paralyzed to a degree that is hard to describe. He couldn’t move his arms or legs. He couldn’t wiggle his fingers and toes. He couldn’t see. He couldn’t talk. He couldn’t eat, and finally, he couldn’t even breathe on his own.
My parents tried everything. They flew across the country to specialists. Nothing helped.
I am a mother now. How did my own mother care for my father, work full time to support us, and still maintain the household and give each of us the attention we needed? I know that sometimes she must have been crying on the inside, but both of my parents were determined to maintain their dream household. Though it wasn’t — it couldn’t be — the same.
My father let go of his pain, his grief, his questions and incredibly, he was able to do what he loved best: to give. His quiet acceptance of his physical state, his constantly playing cassettes of Torah lectures and praying by listening to my brother’s chanting on tape the morning service gave inspiration to all who knew him.
If you ask anyone what they bring to mind when they think of my father, they will tell you it was his ever-present smile.
The rain falls in sheets out the window next to his bed.
“It’s so...” my mother begins, searching for the word “appropriate.”
“Corny?” I supply. “I know. I already told God.”
We all laugh until tears came. It was so corny, the rain, on the day my father died.
My brother said viduy, the final confession, and my sister and I sang his favorite song — mitzvah gedolah l’hiyot b’simcha — it’s a big mitzvah to always be happy — as the line on the monitor went flat. His face did not change as he died. Nothing changed. It had just been his heart — as always — that had been keeping him alive.
And it is his heart that we will remember.
And the fact that, cliché as it is, as he died, the angels cried.
My father realized, long before the rest of us were granted the acceptance, that he wanted to do so many mitzvahs, but they were not the ones that were wanted of him. He wanted to sacrifice for God, and God demanded a very different sort of sacrifice.
And my father gave God what was asked of him.
My father gave Him his smile.
A version of this article originally appeared in Ami Magazine.