When you’ve loved a man for just nearly a decade, it is sometimes difficult to remember why you started loving him. What you think about more often is the way he forgot to put the trash out on Sunday night, and how you asked him twice to pick up a gallon of milk last Tuesday, and of course he forgot. Of course he did. And then you weren’t able to use those very ripe bananas to bake that loaf of banana bread. And then you had to toss out the bananas. All six of them.
You don’t necessarily remember how it was that you walked out of some theatre in some small town when you were all of nineteen and he was all of twenty, his being a more sophisticated age, to be sure—him a worldly twenty, you still trapped in your teens. You don’t necessarily remember all the details of that movie you watched, only that it was a little (ok a lot) cheesy and about some underdog, under loved and under valued by the world. You don’t necessarily remember him saying that he always had a soft spot for the underdogs, for the under-loved and under-valued, and that he was ok with being a little cheesy for the sake of that. You don’t necessarily remember all of that.
“I’ve always had a soft spot for the ‘Radios’ of the world,” he said all those years ago, referring to the unlikely hero of the film. And you said, both inside and out, “Me too!”
Here and now, James and I are seated in the formal living room on the brown sofa with the firm seat cushions and the sweetheart back, the one I bought at Pier 1. The social worker is on the white slip covered chair to our right, the one I found marked half off at Pottery Barn. A year ago, when I bought this sofa and that chair, I had been hoping that maybe one day we’d be sitting just as we are now. I dreamed this moment in Pier One, in Pottery Barn and a million other times, and now here we are in it. We are halfway through the process of becoming licensed Nevada Foster and Adoptive Parents. Half way. Soon enough. We are almost there.
My husband and I discuss our life experiences with the social worker. Somewhere in the mix, James talks about losing family members—his experiences and not mine to share here. I talk about my own losses. A childhood illness. Sitting in a hospital bed when I was nine years old, listening to my mother say, “No it won’t ever go away. And I am so so so very sorry.” Throwing that stupid teddy bear up against the wall and watching it bounce and hit the tiled hospital floor. Screaming, wailing, how it just wasn’t fair. I didn’t want a teddy bear. I didn’t want all these stupid flowers and these stupid cards. What I wanted was to be home with my Barbie’s, in my own bed with the pink quilt and the white lace pillows and not in a sterile hospital bed with some dumb disease to deal with for the rest of my life.
I talk about that, and then the social worker asks a question for which I wasn’t prepared.
“How would you feel about caring for a terminally ill child?”
And I had thought I was a twenty-eight-year-old woman sitting on the sofa in the living room of my marital home in Nevada, but no. That wasn’t the case. I was instead nine years old and back on a hospital bed in Atlanta.
Her name was Alexis, and I named a baby doll after her some months after we met. We shared a hospital wall, with her room being one door down from mine.
“Are you scared?” I whispered, worried that a grown-up might hear, as we sat cross-legged on my hospital bed. Maybe it wasn’t ok to be talking about this. Maybe I shouldn’t bring it up.
“Yeah,” she said all adult like, folding her hands in her lap in a certain way that seemed so very mature. She was eleven and I was nine, but it was more than that.
“What I have isn’t so bad,” I said, resolutely. “What you have is worse.”
She should have said, “Yes it is,” but instead she just said, “It’s all tough. Every kid in here has it tough.”
In 1992, at Egleston’s Children’s Hospital of Atlanta, the Juvenile Diabetics shared the sixth floor with the Cystic Fibrosis patients. It made sense. The diseases have a lot in common, genetically speaking.
At regular intervals during the day, I could hear the nurses knock on her door, their knuckles announcing the violent intrusion. Sometimes I’d hear Alexis groan into the wall in response, a low and guttural noise that obviously meant, “Again? Already?” Footsteps would follow, and thereafter the rapidly repetitive thwack, thwack, thwack as the nurses beat on her back, working to break up the mucus that threatened to drown her.
We sat on my hospital bed, her and I, whispering and playing a board game that I’d won in a round of bingo at the hospital’s weekly night of entertainment. It was “Mall Madness” and, as it so happened, I’d been coveting that board game for ages. Imagine my surprise when I was the first kid in the room to call out “Bingo!” and run to the prize table up front where I could pick any prize I wanted. Obviously, I went straight for Mall Madness, and that produced a collective gasp from every other girl in the room. They’d obviously had their eyes on it too.
“You’re so lucky,” said Alexis, as we sat on my hospital bed and rolled the dice and sorted the cards. “I’ve wanted this game for ages.”
There was a knock then at my door. In walked my mom, her eyes red and swollen, followed by Alexis’ mom as well, her face clean and seeming, even to my nine year old self, like one of experience and wisdom. She wasn’t new to this being a mom of a sick kid. A small wave of anger rose up inside me. What was she saying to my mom? Something about coping? I didn’t want my mom to cope. I didn’t want myself to cope. This wasn’t fair.
It was bedtime, or so the adults told us. Alexis glanced at the clock on the wall opposite my bed.
“I had fun playing Mall Madness,” she said, and then wafted her little eleven year old self down off the bed, out the door, back to her bed against the wall that we shared. Thirty minutes later I heard the familiar thwack, thwack, thwack, and the gurgling of her lungs as she coughed and hacked and worked very hard to breathe.
“It’s not fair,” I said to my mother.
“No,” she said. “It isn’t fair.”
At the foot of my hospital bed sat Mall Madness all neatly boxed back up from where we had been playing earlier. I stared at it intently. I’d been wanting that game for ages, and so had Alexis, as she had told me. We both really wanted it.
Thwack, thwack, thwack came the noise through the wall, and then the gurgling and the coughing and the occasional small whimper.
I was coming into the understanding, slowly, that sometimes you want something so very bad that it aches, but you aren’t able to have it no matter how hard you try and wish and work and plead. Sometimes you can’t win what you want at a game of bingo. Not in a million bingo games. Not ever.
“Do you think it would be ok if I gave Mall Madness to Alexis?” I asked my mom. I was not sure if this was ok. Somewhere in my young conscience, I feared that maybe this would come off condescending.
“I think that if you want to give Alexis Mall Madness,” said my mother, considering, “then you should.”
“You think it’s ok?” I asked.
“If you think it’s ok, then I think it’s ok,” said my mom.
The next morning, I crawled out of my hospital bed. Trailing a hanging IV bag on its metal cart behind me, I walked one room over and knocked tentatively on Alexis’ door. Her mother appeared with a look on her face somewhere between annoyance and exhaustion. When she glanced down and met my eyes, her features softened.
“Hello Heather,” she said. My mother smiled from somewhere behind me, and I was aware that the adults were exchanging something in their faces.
“Hello,” I responded. “Can Alexis come out?”
More exchanged glances.
“She isn’t feeling that well right now,” said her mother. “Maybe she can come out later?”
I frowned. I hadn’t prepared for that. Mom was holding Mall Madness behind me, and I turned to look at her, unsure of what I should do next. Mom to the rescue.
“I think,” said my mother, stepping forward, “that Heather wanted to give Alexis a gift.”
“Yes!” I said, suddenly surer of myself. “I wanted to give her Mall Madness. I have a lot of board games anyway. I don’t really need Mall Madness…” I trailed off. Should I keep talking? Should I turn and run?
The board game exchanged hands and disappeared inside Alexis’ room. Her mother thanked me, but I was so embarrassed I barely took it in. Retreating to my own room then, I climbed back into my own hospital bed. Once there, I found another round of cards and gifts of my own waiting. Somewhere in the mix was a pad of paper and a green gel pen.
“Oh how perfect,” said my mother. “Weren’t you wanting some paper to write on?”
I was, and I quickly set to writing things down. Oh to have that little pad of paper now, but I lost it somewhere over the years. What in the world did I write?
A day passed; a night passed, and just as quickly as I’d arrived, I was cleared to return back home—back to my pink quilt and the white lace pillows, back to my Barbie’s but forever changed. Somewhere in the clamor of leaving the hospital, Alexis appeared at my door a little weaker than before. She thanked me for Mall Madness. We swapped addresses and committed to be pen pals forever and ever.
Thereafter, off and on, we exchanged letters with each other, handwritten in pencil on wide ruled notebook paper. At some point in my teens, I posted a note that was never returned. I wasn’t sure if the silence in response was because she was busy dating boys or because she was dead. I still don’t know, and I still wonder.
So now I sit on my sofa in my marital home with the man that I, somewhere along the way from being a kid to becoming an adult, chose as my life partner, and a social worker asks us if we would be ok with parenting a terminally ill child and the first thing that springs from my lips is…
“I…well I….”
I see Alexis’ face in my mind, and I turn to meet James’s eyes. With a wondering look on my face, I ask my husband, “How do you feel about that?”
And the man that I somewhere along the way chose to marry doesn’t hesitate to say, “Yes.” I remember, in that moment, why exactly it was I fell in love with him.
“Yes,” I say to the social worker, too. “Yes we would be happy to parent a terminally ill child.”
Yes we would.
“Not many people say yes,” she says.
We nod. We understand.
“But I think your life experiences would make you a good candidate for it,” she says.
Yes. Maybe they do.
The social worker gathers her bags and leaves our home, and we collapse on the couch afterwards. We made it. We survived. A moment of silence passes, and then my husband pulls me up and tugs me toward the television in another room.
“A movie?” he asks.
“Sounds wonderful,” I say.
As we browse Netflix on Apple TV, I spy the movie “Radio” somewhere in the mix of movie suggestions.
“Radio!” I exclaim. “Do you remember watching that when we were all of nineteen and twenty?”
And he says, “Of course. How could I forget?”
“I knew I loved you after that movie.”
And it’s a really cheesy movie, but we watch it together, curled into each other’s arms on the couch, at intervals crying as we both consider what kind of pain and what kind of joy the future might hold.
Terminally ill. The potential to bury a child. To be a mother and a father dressed in black, mourning their baby.
Ouch.
What a prognosis, terminally ill—but then, aren’t we all? Aren’t we all terminally ill and dying anyway?
I think we can do it. Just maybe…
Somewhere in our paperwork there is a checkbox that is ticked. As I sit here typing tonight, I am thinking about what that one little checkbox could mean for us.
Terminally ill? Sure. Ok. Yes.
I wonder about the child that might be out there right now, dying for sure, but living as he does, and needing a bed and a shower and breakfast, lunch, and dinner, and a mother and a father to provide all of that and maybe a little bit more.
Maybe I could be that mother? Maybe I could bring him into our home and say, at times, “So what? So what if we only have three more years? Let’s live them up.” And at other times hold his collapsing little frame and cry the kind of tears that only sick kids know about. And then maybe when he was really pissed and needed to throw a teddy bear at somebody, he could throw a teddy bear at me? He could throw a punch at me? I could take it? Maybe I could.
Then later, when he was sleeping in his bed, I could kneel in front of his door and wail in silent prayer, pleading with a sovereign God to heal him, please, please, please, please…I could pour my heart out as it broke in a million pieces….and maybe He would heal him. But maybe He wouldn’t.
One little check box. So much potential for so much. Maybe it will never happen. Maybe we will never get that kind of placement. But maybe we will.
I’m ready either way, at least, I want to be. I hope.
Terminally ill.
Ok.
Check.