It would be easy to slip into anger—even rage—self pity, desolation, loss, lament. I’m sitting here, as we wait for blood to arrive so Hazel can have a blood transfusion. Again.
These past 7 days have been hard. I’m about to turn 42, and my life is starting to feel more and more like I’m an actual adult. I keep waiting for the real grown-ups to arrive and take charge of this mess. Sometimes it occurs to me that I am the real grown-up.
A cold systematically took out Hazel (necessitating an ER trip last week), Gemma, and then myself. It appears that my body has forgotten how to deal with a cold while in isolation, and so I have a lingering cough. Ah, the joys of coming out of COVID isolation. Thank you, dear children of the world.
Certain responsibilities of being a child of loving parents are coming more and more to the fore. I thought I had years before it was necessary to worry about these things, but alas, those years have dwindled away to nothing.
I still choose to get up each day and smile fiercely at the sun. Sure, maybe sometimes that smile looks more like a grimace of pain. Yet despite trisomy 18, despite grief of unimaginable magnitude, despite leukemia, despite Alzheimers, dementia, and mental illness, I choose to dig in my garden, to read books, to write, to cherish my children, the living and the dead, to kiss my husband, and to keep striving towards … whatever it is we strive towards—maybe just being a better person in the world. Maybe just spreading compassion and love.
Because, in the end, gratitude still overwhelms me on a daily basis. We live in a safe country, where bombs do not fall at our doorsteps. Where buildings don’t rattle, then fall, crushing those we love in an age-old conflict with no ending and no resolution. My daughter, a piece of my heart, receives excellent medical care. Modern science has made it possible for her to live a long, healthy life, despite the fact that her body manufactured a deadly disease that would have killed her a mere 60 years ago.
I live in a home I love, with people I love and who love me. My job fulfills me, and daily, I help others through some of the saddest moments of their lives. I hold hands, offer hugs, wipe tears, ease suffering.
So yes, there are dark moments. They come often—when I watch my daughter weep in the ER after another painful and traumatizing experience, when I sit at my son’s grave and tell him about my life, when I’m driving, and for a moment I think about veering off of the bridge, the long fall to the concrete below, and that silent, final darkness which can seem so like relief.
But then the light comes in where I am broken. Sometimes it pours in through the biggest cracks, and sometimes, I can barely see it. I have to stand in the darkness and let my eyes adjust, but there it is. I can see the faint outlines of the things and the people that I love. And it is enough.
Today, I went to get Hazel a KitKat to help with her port access. We are at the Cancer Center. I got to the counter and saw the sign that said “our credit card machine is broken. Sorry for the inconvenience.”
“Do you take checks?” I asked.
The lady shook her head.
Of course, I didn’t have cash, because who does these days?
I stood indecisively. “How much is the KitKat? It’s for my daughter’s port access, and I can probably scrounge up enough change in my car,” I explained, seeing my hopes of a hot coffee vanishing into the fog.
The shopkeeper (as Hazel is fond of calling her) opened a Band-aid box and dug out a dollar bill and some change.
“I can give you the coffee for free,” she said. “Did you want cream?”
Last week, at Dollywood, I stood in line in the 90 degree heat, sweating, while a tired and hungry Gemma wailed in her stroller. When it was my turn, I piled the water bottles and snacks on the counter as Gemma screamed in the background. I went to pay with Apple Pay only to realize that they didn’t take it, and Jim had my wallet, somewhere off in the park.
The lady behind me stepped past me and proffered her debit card.
“It’s on me,” she said
Today, as we wait for a blood transfusion, I ordered delivery for Hazel’s favorite—Rocky’s Hot Chicken Shack. On the notes for the delivery driver, I put “2nd floor, pediatric oncology.” Our delivery came with a free, giant chocolate chip cookie and fruit punch.
Little kindnesses—cracks that let the light in.