One night recently, she cried out for me. She doesn’t do that much anymore, but earlier that night, when I’d tucked her in and softly sung, “You are my sunshine,” in her ear, she’d cried.
“What’s wrong lovey?” I’d asked.
“I just started thinking about a sad thing,” she’d said.
“Oh?” I ‘d asked. “What are you thinking about?”
And with tears thick in her voice she’d said, “I’m thinking about when you will die.”
So hours later, when she called my name, I went to her and brushed the hair from her face and kissed her sweet, sweaty cheek and asked again what was wrong.
She didn’t know. She just knew she needed me. And so I stayed.
She nuzzled her way under my sweatshirt, her tiny hand wrapped around my soft belly, my badge of motherhood, her nose and lips resting gently against my skin. She inhaled deeply, breathing me in, willing me, I thought, to always stay this close, this present, this real to her.
I know that feeling. So many nights I sneak into their bedrooms hours after I’ve tucked them in. I adjust their blankets, sink my face into their hair, drink them in and say a silent prayer.
Please god, let me keep them. You just have to let me keep them.
This is my desperate plea. It has been since we learned Chris inherited this tragically misfolded gene from his dad, which meant he was capable of passing it on to our babies. What good this prayer does me, I’ve no clue. I just know it is visceral, involuntary. It comes from the depths of me, and I feel it first like a punch in my gut before it rises up my constricted throat and escapes in anguished sobs or choking gasps of air.
This — the thought of losing my babies to this disease — is an abyss I know I cannot climb out of, so, while I teeter on the edge, I cannot let myself slip and fall. I cannot entertain this notion beyond my silent cries to god, because if I do I will fall, I know, and never return.
So on that night, with my sweet girl’s face buried in my belly, I thought instead only of her.
She is 6 years old with an awareness beyond her age. She’s always been that way. I remember when she was tiny, and she would look up at me from the baby carrier with eyes that said, “Yeah, I get it. I understand it all.” She is beautiful in a way that stuns me. She makes friends everywhere she goes. It’s not uncommon as we walk home from school for handfuls of kids of all ages to holler out, “Bye, Willa!”
She is smart as a whip and cunning and clever and silly and strong. When she could hardly talk we were at a playground. I stepped away to check on her brother when suddenly I heard her tiny voice yelling, “NO! STOP! I NOT YIKE THAT!” I ran over to find some older girls trying to pick her up. I knew then, no one is going to mess with this girl. She knows what she wants and what she doesn’t and is not afraid to say it. I looked at this fierce soul wrapped in such a tiny body, with her huge Disney-princess eyes and her messy topknot, standing her ground so solidly, and I thought, how is it that she’s just 2 years old and already I wish I could be more like her?
She is as sensitive as she is strong. In the weeks after I had a stroke, when she was just 3, she was literally sick to her stomach with worry. Now, when I’m sick with a cold or a stomach bug or whatever it may, she’s known to crawl into bed with me and fall asleep by my side. Last week, when I hurt my back doing something completely innocuous and was frustrated by the pain and the fact that I cannot afford for my body to fail me at this point in my life, she looked at me and said, “Mommy, maybe your body is telling you that you need to stop doing so many things for us.”
She is my girl, this one, with her big heart and her dark eyes and her brilliant smile, and as I sat on her bed in the dark that night after she called my name, running my hand through her thick, brown hair, I thought about that big heart and how, in these last couple months, as life has calmed enough for me to watch her move through the world, I have seen her in a new way, a more grownup way. I thought about the way she takes in the world around her so completely but often keeps it there, inside, out of reach from my worried, wondering mind.
As she watched her daddy lose first his right hand and then his smile, I wondered — what does she understand about this? As I watched her break down in sobs when once her brother called her by the nickname Chris’ dad had used for her, I worried — what does she understand about this?
The answer, I know, has always been more than I think.
Her brother is three years older, and they are alike in many ways and different in so many others. He is also keenly aware, so observant and incredibly sensitive. His worries come out in a rush — full-body sobs, racing heart, sweaty forehead. For so long, Willa has seemed steadier, calmer, as though she took the information we gave her and rested in it completely. But I see now I misjudged her quiet understanding as unquestioning acceptance.
When Chris’ swallowing was deteriorating and her brother was so very scared, his panic attacks a near nightly occurrence, Willa sat at the kitchen counter as he cried in my arms, drawing or coloring and repeating the mantra we had been telling them for weeks.
“It’s ok, Cohen,” she would say. “Remember that coughing is not choking. Daddy is ok. Daddy is being careful.”
She is not shy about telling people her daddy has one hand or that he “sometimes talks funny,” and she has never seemed to dwell. That, I see now, is her 6-year-old ability to accept and love and be in the moment. Kids, I know, are so much better at grief than adults, and she seems especially well-suited for this life that’s been forced upon her. Still, I know her approach doesn’t mean she’s not like a little duck — calm above water and paddling like crazy underneath.
I can see the depth of her understanding in her thoughtfulness, in how she comforts Chris, often crawling into his lap and picking up his useless, wasted right hand. She will hold it between her two hands, stroke it gently, press it to her cheek and kiss it before looking up to meet Chris’ eyes, to let him know that she sees him, that she recognizes his loss, that she loves him.
I look at her and think — remember, sweet girl, you do not have to take care of us. That’s our job, even if it sometimes feels impossible, like it did on American Thanksgiving last year when we were nearing the date of Chris’ feeding tube placement, and we all fell to pieces.
I spent all day cooking. We knew Chris couldn’t eat much, but he wanted me to cook the whole meal. He didn’t want things to change even though everything had changed.
I set the table, and Chris helped the kids fill their plates. Before he even sat down, he took a small bite of roasted carrot. He started coughing immediately and didn’t stop for the next hour. A tiny fleck of carrot was stuck in his throat, and he couldn’t get it out. He coughed and coughed until he whimpered in exhaustion. The dinner was abandoned. Cohen laid on the couch with his head in my lap, his heart racing, terrified Dad was going to choke and die. I comforted him and rubbed his back. I looked around for Willa. She was silent, and I wondered why.
And then I saw her, curled up in a little ball on the floor, leaning against the couch with her head hiding in the cushions.
“Willa, sweetie, are you ok?” I asked. “How are you feeling?”
“I’m OK, Mommy,” she said. “I just like to keep it all inside.”
How does a heart shatter three times in one night? First, when my husband couldn’t swallow even a carrot. Then, when my son crumbled in my arms under the weight of his worry, and, yet again, as my sweet girl sat stoically to the side, holding in the fear and sadness that I knew was ravaging us all.
Two months removed from the calm that Chris’ feeding tube brought, we sat at the dinner table again, this time talking about feelings. Cohen had expressed his own in a productive way, and I was telling him so. The conversation turned to talking about our sadness.
“It’s really good to talk about our sadness,” she said. “Because it makes other people feel like they can talk about theirs.”
I often tell the kids that I write about my feelings, and so I mentioned that. I told them that talking about our sadness doesn’t make it go away, but for me it can make me feel a bit better, a bit lighter.
Willa went on.
“Yes, because we always feel sad about the things and people we have lost, like Daddy’s smile and Grandpa Bob,” she said. “Sometimes at night in my room I ask Grandpa Bob questions. What I really want to know is — does it hurt to die?”
We are all many things — not just sad, not just happy, not just silly or funny or quiet or loud. We are all many things, often all at once, and Willa is no different. She is bright and she is clever. She is outspoken and she is introspective. She is strong and she is feisty. She gets hangry and she is sensitive. She loves her family and sometimes thinks we are the worst. She cries and she laughs and she wishes her dad could smile and she loves him the way he is. She is sometimes sad and most often happy. She worries more than a 6-year-old should have to and she smiles easily.
She is her own, full person, and I marvel at every part of her.
When Chris was diagnosed Willa was just 4 years old. I took extra precaution and care backing up all my photos and videos because I thought with certainty that this little girl would remember her daddy the way he was then only from them, that if he lived long enough for her to remember him in her own mind, the memories wouldn’t be of him pushing her on the swings at the playground, but of her pushing him in a wheelchair.
But last night I watched the two of them playing on the living room rug. Chris was lifting her up on his legs and tickling her sides, and she laughed and squealed and begged for more, and I knew that no matter what happens — whether Chris is running next to her or watching her from the side, whether he is holding her hand or she is holding his — she will always, always know how much she is loved.
These babies of mine — loss is never far from their minds or their hearts, and I cannot change that. I cannot take away the questions about death and dying and love and loss that swirl in their little heads. I cannot save their dad from this disease, and, though I will do everything in my power to try, I cannot save them from it either.
What I can do, I will do to the best of my ability. I will tell them I love them so many times a day they roll their eyes at me. I will sing bedtime songs in their ears that send them into fits of giggles. I will hug them until they are annoyed. I will sing loudly in the car with them and dance on the living room rug until we are out of breath and read my favorite books to them and sit with them every night until their beautiful little bodies give in to sleep. I will listen to their sweet snores and smell their brown hair and blink back the tears and fight my way back from the abyss.
What I cannot do is be perfect for them. I will lose my temper. I will cry in front of them more than I should. I will be distracted and short. I will be too harsh, too protective, too rigid, too tired, too sad. And when I am those things, I will hold their faces in my hands and look directly into their beautiful eyes and tell them that I’m sorry and that I’ll never stop trying to do better and to be better, that I’ll never give up on them or myself or their daddy.
I will show them, with my own life, how we can find beauty and meaning even in our suffering, how we can use our pain to live with more purpose, to love with more depth.
And when in the night they call out my name, when they have a bad dream or want some water or simply need to remember that I’m still there, I will go to them. I will hold them and, sometimes, I will cry, because I can’t protect them from loss, from tragedy, from heartbreak. And then I will kiss their foreheads, and I will say a new prayer.
I know, god, that my love cannot save them from suffering in this life but, please, let it be enough to sustain them.
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