A child’s illness, a mother’s anguish

A long time reader shared this with me and I found it deeply moving. She graciously gave her permission to let me share it with everyone else.

If I were a painter I would depict: a child huddled in a hospital bed, burritoed into an oversized raspberry-pink coat, topped by a spray of blonde hair, like ripened corn. A woman, the child’s mother, ugly-crying on the bench outside the hospital, gripping elastic cords and zipper pieces. Or maybe I would just show the cords and zippers in a neat pile, so that the painting whispered in a secret code to a world I wish I’d never known.

Bibi (not her real name) was six years old when the school nurse handed me my blue folder.

“Welcome to the world of special needs,” she told me. “I know it wasn’t what you had in mind, but it is going to be ok.”

Bibi could not read. She was late in many of her motor skills, struggled to work independently, resisted wearing socks, underwear, or sweaters, and reacted in terror to any mild aggression.
Bibi, I was told, had Sensory Processing Disorder.

I cried right there in the nurse’s office. Most of the mothers do.

Neuropsych testing. RTI and Orton-Gillingham. Sensory brushes. Sensory pillows, blankets, and cushions. Gizmos to fidget with, gadgets to rattle and tap. Noise canceling headphones. Years of epically-unbrushed hair.

Autism, no.
Aspergers, no.
Cognitive disabilities, perhaps.
Dyslexia, yes.
ADHD, maybe.
Bipolar.
Yes.

It wasn’t a shock. Well, how can that not be a shock? — But, I know bipolar. I spent my childhood at its mercy — dragged along by the fury, grandiosity and flights of notion of my mother, a woman who needed a screaming fight about something, anything for at least a few good hours every weekend.

Bibi — beautiful, sunny, cosmically smart Bibi — is nothing like my mother. Bibi’s giggles cascade out of her like pink champagne bubbles. Her allowance is gone as quickly as it comes in — spent on extravagant gifts for her siblings or some child who was crying on the playground and deserved a pick-me-up.

When Bibi was seven, her prize hen Rosie — the golden-laced wyandotte Bibi had raised from a hatchling — was snatched by a coyote. The sound was terrible — chicken agony, coyote growls, and Bibi — armed with a fallen tree branch– shrieking her fury at that coyote, who released the hen and bolted for the woods. Bibi gathered up the shredded pieces of poor Rosie and brought her to me, demanding first aid. Dubious, (and grossed-out) I poured warm water and then iodine over the raw, chewed-up chicken flesh. I feared we were prolonging the poor thing’s suffering, but at Bibi’s insistence, I filled a box with soft rags and placed it on our screened porch under a warming lamp and tucked Rosie in for the night, warning Bibi the chicken likely would be dead in the morning.

Bibi snuck out to the porch sometime well past midnight, dragging a heavy camping blanket behind her. She brought Rosie to her chest, stroking her soft feathers and willing the hen back to life with the sheer force of her love. They spent the night that way.

Rosie survived.

But there were other sides to Bibi, and they scared me. She was plagued by graphic nightmares, long periods of elevated mood followed by lethargy and detachment. When the therapy and the routines and the removal of her bedroom closet door stopped keeping the shadows at bay, we found a psychopharmacologist.

Two weeks later, she woke up normal. Yes. It really was that simple. At first.

She was ready for school on time. She ate what we put in front of her. She did her homework and brushed her teeth and skipped happily off to bed. I wanted to track down the inventor of this small beige button of a tablet, send her a fruit basket or maybe a Mercedes, or a villa in the south of France. It was the first time in my life I considered the difference between keeping a person from dying, and keeping a person from living a tortured lifetime.

“There’s no magic pill” they say. — Yes there is. It’s called “Lithium.” (Or “Ritalin” or “Prozac,” or whatever.)

If melatonin and St. John’s Wort work for you, that is just fantastic. You’ve got it good. So do we. Many children and families suffer far worse trying to find the right medication — the one that works, the one that’s available, the one insurance will pay for, the one whose side-effects don’t make life not worth living.

Over time, other drugs were added to Bibi’s regimen, as they inevitably are. We dosed and we tweaked, and Bibi got very good at succinctly answering questions about her sleep, her mood, her energy, her focus. And always — always and forever more — she went to weekly therapy.

She also went to overnight camp.

Here’s what you don’t know if you don’t have a sick child: those annoying HIPAA laws that mean filling out piles of forms and standing behind the line at the doctor’s office? Those laws have meant my daughter has access to life.

You do not go to the camp director and tell her your daughter is bipolar and taking a medication that could, maybe, perhaps, cause kidney failure if administered improperly. You do not tell your child’s counselor, “Hello, nice to meet you, please make sure she wears sunscreen and a hat and also it is not out of the realm of possibility that she might start to feel herself slipping into madness. You’ll want to keep an eye out for irrational sadness or fear, or a strangely elevated mood … are you writing this down?”

You do not tell them these things because then they will not like your daughter — much less head-on adore her, like she deserves. They’re not bad people. But the power they have over your child is horrifying. If Bibi were diabetic, the way people responded to her insulin pump would have absolutely no impact on the outcome of her illness.

How people interact with the mentally disordered has everything to do with whether they get worse or better. People with mental illness are often subject to shaming and rejection that reinforce their own worst terrors about themselves and the world. Enter HIPAA, and the right of patients to strict confidentiality from their care providers, even if those providers work for a private summer camp.

That hot July morning I waited in line for about twenty minutes, listening as a parade of anxious mothers gave the infirmary nurse detailed instructions on their daughters’ Claritin or Lactaid or Gummy vitamins or even — I am not making this up — her absolute need to 24 hour access to Tylenol. I can’t judge — I don’t know their stories — but when I entered the nurses’ office, I closed the door that had enabled me to overhear the prior conversations, and dropped two large Ziploc bags filled with orange prescription bottles on the desk.

How about some psychotropics, bitch?

She never flinched. She took detailed notes. She organized the dosages and had me check and recheck them. She reassured me repeatedly that she knew what lithium poisoning looked like and that she would do a proper psych triage on my daughter every day.

With careful management, love, luck and more than a few angels, Bibi has been imbued with self-worth, acceptance and an abiding faith that her life will be good. But she also understands that she will never be free of the burden of this disorder, and the suffering it brings her will always be part of her life.
All of her descents carry similar elements — elevated mood and creativity, followed by lethargy and disinterest. The nightmares return. She resists all sensory discomfort including showers and hair brushes.
This leads to more visits to the psychopharmacologist, consultation with the therapist, careful emails to the school nurse and her classroom teacher. Generally, the descent is followed in fairly good time by an ascent.

And then it wasn’t.

She was sleeping less and less, waking at all hours, wandering the house, writing stories, making elaborate presents for people she barely knew. I begged her to get on the school bus and she cried and asked if she could wear my coat — my new, luscious, raspberry colored down parka. “It smells like you, Mama,” she said softly. For weeks, she didn’t take that coat off. It gathered stains: toothpaste, dribbled hot chocolate, a faint hint of vomit.

Bibi was not getting better. And so we went to the Emergency Department of our local hospital, which is where mental health patients in crisis are triaged. Pediatric emergency cases can spend up to several days or even weeks in the Emergency Department. While there, they receive no treatment. They cannot leave their rooms, the doors to which are left wide open to the corridor at all times, a hospital security officer is stationed outside it. When mental health patients in the ED need to use the bathroom, they are escorted by their security officer and a nurse, and they must leave the door open.

Eleven year-olds are no different.

And so Bibi shuffled to the john, trailed by her mother and a nurse and a cop, peeing with the door open because she had committed the crime of being born with a chemical imbalance in her brain.

She was in the Emergency Department about five hours when a social worker led her dad and me to the “Quiet room.” Easy chairs. A box of tissues. A cheesy picture of a waterfall. Some day I will be a millionaire and I will donate to hospital quiet rooms boxes of soft kleenex because it just sucks to have a chapped nose on top of everything else.

The social worker walked us through the options. Bibi was in trouble. And they wanted to find a bed for her on the psych ward, if we would consent to it. We did.

Bibi was alone in her room, the door open to the hall, the security officer watching. I suppose to everyone else she was an unwashed, odd-smelling, confused little girl. To me, she was sweet Bibi-of-the-cascading giggles, and I climbed in beside her, pulling her close to my body, to the body we had shared, to her nose against my collerbone, and mine against her warm hair.

“I have to stay, don’t I?” she asked.

“No,” I said. “I will take you home right now if you want me to. But the thing is,” I stare at the styrofoam tile ceiling, willing the words to come. “I’m scared. I can bring you home, and I will if you ask me to. But I’m afraid I can’t take proper care of you. I am afraid you will get sicker and you will end up back here and it will be worse because we waited.”

“And you can’t stay with me?”

“No. I can’t. You’d have to do it alone.”

We clung to each other, my little girl and I, awash in the rawness of life.

We were lucky. A bed opened less than 24 hours later. The officer escorted us up to the psych ward, where he buzzed the security door for admittance. Bibi’s little chubby hand gripped the handle of the overnight duffle, her back straight, her chin set. So help me she walked herself in to the psych ward.

They searched her bag. She could not keep the ceramic mug, her scarf, or the knitting project. No sneakers or laced shoes of any kind. No belts, no nail clippers, nothing with an edge. They stuffed the banned items into a garbage bag which they handed to me to take home. And then they turned their attention to the coat, to its zippers and elastics and knobbies and all the pretty little things such coats have.

“Just cut it,” I said.

The nurse made quick work of it, ripping and slicing. Bibi put it back on and managed a slight giggle at how deflated it looked.

And then we were gripping each other and sobbing.

“These are not your people,” I tell her. “This is not your world. Your world is at home with me. So get it done and get out of here and come back to me.” We grip harder and sob more because we both know there is a lie there.

As of now, these are Bibi’s people, these hollow-eyed girls in flip flops and sweat pants, angry red divots along their arms where their fingernails have ripped at the flesh– their outward release of an inner pain no one has been able to soothe. They share Bibi’s disordered world, a world I have to abandon her to if I want to get her back.

And so there I am, on the bench outside the hospital, a garbage bag at my feet, elastics and zippers clenched in my fists and I think how maybe if I dug my nails into my arms it would distract me from all the unbearable bearing down on me. I can’t scratch my arms, but I want to wreck something, or damage myself or — no, not damage. Mark. Claim. Own this identity that will be part of me forever. So I send a text. I send it to anyone I think might be my friend.

“Bibi has been admitted to the psych ward. I need childcare coverage in the afternoons during visiting hours. I need a dog walker. Please text back if you have any availability.”

“I can do Tuesday and Wednesday after school to 8:00.”

“I’m going to send you my dog walker, she’s great.”

“What do your kids eat? I can drop a meal or two.”

Someone cleaned my kitchen, and someone brought food, and I claimed my place as the mother of a child who will need hospitalizations on and off throughout her life.

Thankfully, Bibi’s stay this time was short. Her medications kicked in, she was sleeping normally, and the bright gentleness I love so much was returning to her face. On the fourth night, they released her for home. Leaving, she was like Nixon boarding Marine One. She turned to her medical team and said, “SEE YOU NEXT TIME!”

In the car on the way home she asked me what we would tell everyone.

I said, “Why not tell them you were in the hospital?”

And she said, “Why not just go ahead and tell them I was in the loony bin and see how fast I make new friends?”

It was bitter and funny and awful and true.

“How about you just tell them the truth — you have a chronic condition. You need medication and sometimes hospitalization. Why don’t you let them give you the love and sympathy and support a hospitalized child deserves?”

We are silent. We know I am dreaming of a world we want to exist, that does not exist, that could only exist if we march forward believing in it. But what 11 year old wants to make that march?

“There are two kinds of people in the world, sweetheart,” I tell her. “Those who understand and feel compassion and sympathy for you and those you don’t need in your life. Why should you have to pretend to be something you’re not for people who aren’t nice to sick people?”

“Ok,” she said.

She wore her hospital bracelet for more than a month. A mark of her own, I think. A decision that she was done hiding a very vital — and sometimes very painful — part of herself. We are still navigating this world, Bibi and I, where we understand that the stigma is real and dangerous and that she must be kept safe. But we also know that the stigma thrives on people like us acting like we have something to hide.
I have this amazing daughter, with a wicked sense of humor and giggles like champagne bubbles. She likes to draw and cook and play softball.

She has a chemical imbalance of the brain called “bipolar.” Sometimes it blows through our life destroying everything it touches until we think the sun will never shine again. During those times, we rely on each other, and we ask for help, and we tell bad jokes, and we love the friends who send us dog walkers and clean our kitchen and repeatedly tell Bibi “You’re a bad ass, darling.”

Because she is.

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