A week in the life

What does a mother do in the week leading up to her 4-year-old daughter’s open-heart surgery?

She spends a lot of time talking to the air. There is a constant string of dialogue in her mind, with God or anyone else up there who might be listening, about helping her to just do the next right thing.

Her thoughts become demands, really, like she is claiming some sort of stake in a solid ground by them because she is past bargaining or begging. In order to make it through, she needs to believe that what she thinks is the truth.  

She wonders when she is folding the laundry whether or not she should go ahead and buy a few new pairs of summer shorts, because the ones that her daughter has from last year are a little too small this season. What will be harder: Making do with what we have? Or throwing away the new shorts if she doesn’t get to come home to them?

When she is cleaning the kitchen after dinner on that Tuesday night, she will find a scribble of green marker by her daughter on top of the canister that holds the marshmallows used as potty-training treats and wonder if she should wipe it off or keep it there because it may be a relic to treasure later.

She lingers too long at bedtime and gives out too many cookies for snacks. There are bubble baths at all hours of the day and popsicles before lunchtime. She reads “just one more book” as many times as she is asked.

She allows unlimited shirtless worm hunts in the backyard, and when she starts to get overwhelmed by the hours of playing pretend or the building blocks strewn all over the house, her brain tells her to be thankful for the mess, a reminder that always comes with a pang of dread and guilt.  

Every text, call or note offering support makes her cry because it is all just too much. She is full of emotion and focused on taking care of her own; the idea that someone is taking the time to think of her is a gift that means so much more than she will ever be able to repay.

She wakes up at all hours of the night to wonder if she has done all she can to prepare her other children for what is about to happen and finds a way to silently cry about how she will talk to them if the worst thing happens.

Every morning when the alarm goes off, she lies in bed, willing her mind to understand that she has to get up and put one foot in front of the other, she has no choice, even though all she wants to do is disappear. And each day it gets harder and harder to convince herself.

When she is out running, a necessity to distract her brain and muscles with something else to think about, she repeats “breathe in, breathe out, breathe in, breathe out,” afraid that her body will rebel and forget to do it on its own. She does this until her knees start to hurt, her body’s reminder to her head, that she is still, in fact, alive and must go back home to her responsibilities.

In the shower, afterwards, she tries her best to quiet her mind when it tells her that it would hurt less for her to leave this world than to lose her daughter.

She stops herself from leaning too hard on her husband. She knows he is carrying his own fears, and she knows that later, in the stillness and the quiet of the waiting room, they will hold hands and find the right things to say to get each other through the day.  

She purchases more cloud storage for her phone to hold all of the new videos and photos she has taken over the last week to satisfy the voice in the back of her head telling her each moment might be the last.

She fights the urge to hold and kiss her daughter at all hours of the day and night, wanting to remember everything about her: the way her hair falls in her eyes when she is playing; the joints in her little fingers and toes; the loudness of her breathing; that raspy, deep laugh she has when she is tickled under her chin; the smell of her hair; the way she says “me’s” instead of “my” and those perfect, little freckles that have just started to appear on her nose and cheeks.

She asks her therapist, “How do I make this the best week ever?”

“Just love her,” her therapist says, bringing her back down to Earth and grounding her again with purpose.

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