I’ve always said it was different with her in ways I could not articulate.
My third daughter, Eden, was born at term, healthy and weighing eight pounds. Within a week of her birth she was Failure to Thrive, seeing a doctor every day, a pall of mystery dangling over her head. Why was she sick? Why couldn’t we make her strong?
My last post for damomma.com covered Eden’s first hospitalization at the age of two: our frantic drive to her doctor’s office, his 911 call, the rawness and gratitude (oh those pediatric nurses) I experienced as a thirty-four year-old mother of a little girl who was fighting to breathe.
I stopped blogging for the reasons I gave: because I wasn’t getting paid for my work. Because the kids were getting older and life was changing.
And for the reason I did not give: because Eden was sick.
In all the ways the births of my children had made me creative and loving and open, having a sick child had made me clenched and staid.
My first thought as a mother was that if anything ever happened to my baby, I could not imagine there being anything left of me — I did not want there to be anything left of me. Then I had a second child and felt that way about her, too, and just did my best not to think about it too much.
Then I had a third child, and too late I realized that her destruction would be mine, and mine would be her sisters’, and the pall of mystery drew closer and darker.
In a tiny hospital bed she fought for breath as I trained oxygen at her face, the love I had for her run through with terror.
That year we went to the ER five times. I learned how to work a nebulizer, take an O2 saturation, and gauge her temperature to a tenth of a degree by my hand on her peach-fuzz back.
She acquired an immunologist, a quilted Vera Bradley bag full of medications, and a hatred of needle sticks that triggered pitiful sobs at the sight of the blood lab.
But she grew bigger, and ironically tall, with golden curls and thick lashes fanning her chocolate eyes.
In her third year, she went to preschool, armed with a glittery bottle of hand sanitizer and orders never to touch her face.
She got pneumonia, followed by a quick succession of respiratory infections, fevers, and days on end of low oxygen counts. She missed five weeks of school.
In the pickup line one day, a mother confessed to me that she had sent her son that day with a fever. She just needed her “me time,” she said. Plus, she was convinced it was chicken pox, as she had exposed him two weeks ago to give him “natural immunity.”
“So I don’t feel bad sending him to school,” she chattered. “The vaccinated kids should be fine and the unvaccinated kids all want to be exposed naturally.”
Within 24 hours red sores had broken out. Eden had a fever of 104 degrees, after Motrin. I lay her on a pile of blankets on the bathroom floor, draping her with wet towels that steamed against her skin.
It was the first time I had ever really struggled with hatred for another human being.
Vaccinate your damn kids.
We survived that winter, and through the heavy heat of that summer, and now it is winter again and I am grading papers in the living room, beside our wood stove, which is crackling. Snow spats against the windows and every few minutes the house shakes with wind. I am almost done, and looking forward to bed.
And then Eden is beside me, huffing. I put a hand down the back of her flannel jammies.
“You need a neb,” I say.
A tear slides from her face to the floor. “Why does this happen to me? What if I die?”
Your child learns to talk, and you find out what the last four years have been like for her.
I lift her to the couch. Her body settles into mine, tummy arched toward the fire like a cat in sunshine.
“This happens to you because you have asthma,” I tell her. “You have curls and brown eyes and you love cheese, and you have lungs that spazz out very easily. It’s how you were made. It isn’t going to kill you, it’s just really annoying.”
I am so sorry. I am so sorry that this is her childhood: fighting to breathe, stuck with needles, peered at, worried over.
I am sorry that this is my life: binge-watching Doc McStuffins, tight with sleeplessness, doing my work with my laptop propped up beside my panting child.
I know how lucky we are.
Children in our community have died since Eden was born. Children with asthma in other parts of the world die because they don’t have access to the medicines we have.
I have friends whose children know the lifelong effects of childhood cancer. Although Eden has come very close, she has never been truly, awfully, life-threateningly sick. We are lucky.
But it is still another night with a gasping child.
I want to go to bed, to get up tomorrow and drop her off at school, do my work, have an uninterrupted thought, take a walk. I want to live a few months without visiting the pharmacy, calling a doctor, reviewing the insurance statement, making a payment plan with the hospital.
“I hate it,” she whines. “I’m not going to neb and you can’t make me.”
It’s the tone that does it. The 2 a.m. self-pity.
It is because it mirrors mine.
“Oh, you’ll neb,” I say quietly.
“I don’t want to!” she shrieks.
“You’ll do it anyway.” It’s not mean or vindictive. It is the very opposite of a lost temper. In the firelight and the snowstorm, I am mothering us both.
“Everybody has stuff in their lives that they don’t like. This is yours. The only choice you have is how sad you let it make you. ”
I dispense one dose of Albuterol, one of Budesonide, turn the machine on. I wonder for an instant whether I will have to pin her down to get the mask on — I’ve done it before — but she complies and now the crackle and spatting and wind are accompanied by the hateful whirl of the nebulizer puffing drugs into her lungs. The coughing comes next, as her rattly breath loosens.
It takes twenty minutes. I carry her up the stairs — her little heart flutter-thumping, her breath much softer. I tuck her into my bed, propped up on pillows, and doze with my hand on her chest until the the room fills with the light of sun-on-snow and the sound of our neighbors shoveling.
The storms stop, the afternoons hint at growing longer, the snow is plowed into filthy heaps that shrink into the earth. Eden goes back to school.
The girls have won a local farm’s St. Patrick’s Day float design contest, earning them the privilege of riding in the parade.
Edenwise, this is a nightmare: trapped for hours in cold air on crowded streets — I know we should skip it. But in the end I dress her in layers topped off by her thick scarf, pack her Vera Bradley and a blanket and then there we are, under a glittery plywood shamrock, towed by a John Deere down a street teeming with headache-inducing human enthusiasm. A singer croons on the float ahead of us, Shriners clowns are throwing candy. Eden is grinning and somewhere in that little head stuffed with unicorns and rainbows I know she thinks the whole thing is just for her.
She is waving and blowing kisses.
A mile or two along the route she says:
It has come on quick and hard: her breaths rattle, her nostrils are flaring and every inhalation strains her clavicles against her skin.
“It’s the cold air,” I tell her, grabbing the blanket. But she knows, is pulling her scarf to her mouth, breathing into it to create a warm pocket. I dose her with the inhaler, check her O2 level, contemplate that insane crowd.
Find a cop? Call 911 on the cell and see if we can get an ambulance to meet us somewhere?
“Stop it, Momma, I’m fine,” she says with an irritated wave of her hand. She has burrowed up to her nose in the heavy blanket.
Shortly, her O2 levels are up, her color is ok, her clavicles are retreating.
“Ok,” I say.
So there she is: four years old. Spending hours on a rough wooden bench in 30-degree temperatures, munching candy, huffing into a blanket, blowing enthusiastic kisses at an adoring crowd.
I am oddly, weirdly grateful for Eden’s illness.
For the person it has made her.
For the person it made me.