Guest post: A daughter’s illness, a mother’s anguish

Prayer

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.

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

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.

  • Sal

    Much love to Bibi and to her amazing mom. I’ve now been on both sides of that psych ward door, and both require enormous strength.

  • Paula

    Beautifully written, it brought tears to my eyes. I wish the best for this amazing family.

  • yentavegan

    We were lucky. Our local public school created a self contained campus for emotionally/mentally ill students. Two of my children benefited from this therapeutic setting. I hope your school district has a program like the one we have. Mainstreaming my kids would have been torture and it would have exasperated their issues. Good LUck.

  • J.B.

    Thank you for sharing this beautiful story. I know you love Bibi fiercely, and wish you the best.

  • fishcake

    I had a lump in my throat as I read this. Bibi and her mom are inspirational.

  • StephanieA

    This was hard to read. My husband has bipolar, he’s very high functioning and you wouldn’t know unless he told you. He works full time and is responsible, so him being bipolar never worried me until we had kids. I’m so scared for them, and it makes me think that we shouldn’t have more, that’s it’s not fair to the child. My older son is 3, and he seems normal to me, but some things do worry me. He hates water on his face and ears, and is scared of loud noises. He’s also very sensitive and clingy. Since he’s 3 I have hard time knowing what’s a normal toddler and what isn’t. I hope if either of my children are diagnosed, I can be a mother like Bibi’s.

    • maidmarian555

      Both my parents were bipolar. Neither my brother nor I have the condition (nor do my four half-sisters).

  • MaineJen

    Wow. Bibi is a badass. And she’s lucky to have the mom she does.

  • fiftyfifty1

    I laughed out loud during the part about the camp. I’ve worked as a camp nurse at my kids’ camp and it was exactly like that. “She takes 2 of these gummy vitamins with breakfast, 1 calcium +D chew at lunch, 2 probiotic gummies at dinner and 1 1/2 Herbal Immune Supports 30 minutes before bed.”

    Each med or supplement bottle is given an official camp label, then locked in med locker located inside a locked med room. When the correct time comes, I portion each pill out, place it into a special labeled envelop, find the child (never easy in the chaos of a camp), pull the child over individually, give the meds and observe them being taken, then document the pills taken and exact time taken in the official infirmary log. It wouldn’t be a problem except that fully 25% of kids arrive with a bullshit regimen like this, and it takes up hours of nursing time. Seriously parents, DO NOT send your kids to camp with vitamins and supplements! The only good part is that since so many kids are taking pills, the kids on real meds don’t stand out.

    • demodocus

      have they not heard of multivtmins?

    • Mattie

      It’s considerate of the parents to ensure that the camp sewerage system is so well nourished from all the super expensive pee these kids will be making.

    • Mac Sherbert

      Well, while I do find that a bit over kill I will say that my gifted anxiety child will develop stomach problems if gummie fiber is not given (because anxiety causes digestive problems and ugh food anxiety). However, for a week I’d probably not send them and just fix him when he got home.

  • Amy

    Well that had me in tears. Saw too much of myself in it, although my condition has never gotten that severe. And saw too much of one of my children in it, although again so far her mental health condition has stayed mostly in check.

    What an amazing mother and what an amazing young woman Bibi is. Much luck and love to both of them.

  • CanDoc

    A beautiful account of what can be at times a very ugly journey. Thank you for sharing this tale of enduring love, humour, and your beautiful badass daughter.

  • BeatriceC

    Bibi is a lucky young lady to have such an amazing mother. The mental health care system in this country is horrible, and she’s navigating it with grace to get the best care for her daughter. And so much acceptance and love. I cried.

  • mythsayer

    Shit…this sounds a lot like my daughter. We know something is wrong… we don’t know what, and I’m hitting brick walls trying to get her into psych testing.

    She doesn’t sleep like a normal kid, she has the “epically-unbrushed hair” (she screams when there is ANY hair pulling), hates water on her face (ergo, hair washing takes 20 minutes and it’s filled with murder like screams), she still wets herself during the day (she turned 7 two days ago)…there’s more.

    This scares me…

    • momofone

      What a hard and scary place to be. I hope you find the answers you need.

      • mythsayer

        Thanks. I’d say she’s “normal” 75% of the time, so there are definitely worse situations to be in. She has ALWAYS hated having her hair brushed. She constantly picks at things (she loves her fidget spinner…I’m hoping she’ll use it instead of picking paint of cabinets and leather off the car doors/seats). One of her first sentences at not quite 2 was “I NEED A TOWEL!” (Water on her face = bad).

        I never thought she was on the spectrum but now we wonder. We are pretty sure my husband has aspergers or something mild…he doesn’t like to make eye contact during arguments, he misconstrues social cues (like he took me literally when I’ve said tonparents “your baby is so cute! I just want to steal her and take her home with me!” He would say “that’s so creepy! Don’t say suff like that!” And I’m flabbergasted trying to tell him it’s a figure of speech, kind of…nobody believes a mother is really going to do that when she’s already got her own baby with her). He took a test once for autism and he scored off the charts positive on it…his empathy score was something like 12 and anything under 25 is positive…I got like 33/40…he got like 12/40.

        So we think she MIGHT be on the spectrum, even though she super social. But this is making me think bipolar might really be a possibility.

        Like last week, we asked her to come inside around 6pm just while we were eating dinner (she’d already eaten…we just wanted her inside while we ate because her friends had ALSO gone inside, so she was alone).

        We literally only wanted her inside for 15 minutes until either my dad finished eating so he could go back outside with her, or her friends (they are older…like 10 and 12) came back out…you know, safety and all that…she’s only 7.

        So anyway, she came inside crying, which progressed to screaming and kicking into a full blown tantrum of her punching and kicking walls, screaming “I WANNA GO OUTSIDE!” (On repeat).

        She did that for like 45 minutes! Literally, she could’ve been back with her friends in 10-15 minutes, but instead she screamed and hit the walls and doors for 45 minutes simply because we asked her to please come inside so she wasn’t alone.

        She isn’t rational sometimes and it’s scary. And then once she calmed down, she flipped a switch was fine again…

        • J.B.

          There are a lot of diagnoses with similar patterns. Anxiety, ODD, etc. We paid for private testing for my daughter because her therapist (who knows her stuff) needed additional information to really make sessions work better.

          How are you trying to get testing: through school? Does your daughter have a developmental pediatrician? If not, get your pediatrician to refer you. The developmental pediatric evaluation is likely to have better insurance coverage than other evaluations. Then if warranted you can get referrals for additional testing/motivation for school to do so.

          I’m sorry, it’s really tough and confusing to deal with such a situation. In our case having diagnoses and good professionals have made a huge difference.

        • ForeverMe

          Mythsayer:
          I agree that there are many possible diagnoses for these symptoms. It could be many things….But, please, rule out physical problems first.

          I say this because my father, brother, me and two of my children have one of the rare (or rarely diagnosed) Ehlers-Danlos syndromes (EDS), which is genetic. And, too often, people with rare physical disorders are erroneously referred to a psychiatrist.

          This happened in my family and delayed our diagnoses. This was a big issue because some of our problems were physical and treatable or at least managed.

          I’m not a doctor and I’m definitely *not* saying that this is what your daughter has, BUT only sharing that other disorders can cause her symptoms.

          For example, your daughter’s symptoms – all of the one you mentioned, but esp. older wetting, no hair brushing/washing, issues with water, and major irrational fits over small things – were my some of my family’s symptoms of both EDS and it’s co-occurring disorders.

          We have feelings of anxiety, often caused by excess adrenalin. Excess adrenalin causes nervousness, fits, squirming, unusual fears/worries and trouble sleeping. My children use the spinners and pick things (mostly lips). In our family, the extra adrenalin / anxiety also causes perfectionism… also leading to fits or frustration if things aren’t going as planned or expected.

          And just to clarify, the some of my families symptoms (mentioned above) were due to commonly co-occurring conditions with EDS. Some of these were a brain condition called Chiari (head pain ~ don’t touch head), tethered spinal cord (causing urinary incontinence), and severe spinal instability, esp at skull-c1 and the neck.

          These conditions were there from birth in my 2 kids. The result was that they had strange issues from a young age.

          In fact, some of their concerning behaviors were because they had hurt ever since they remembered and didn’t know it was not normal. It esp applied to head and neck pain- no brushing/washing hair – it hurt! It was also the cause of many fits.

          But since they didn’t know it wasn’t normal to hurt, they never mentioned it! And as a parent – with my oldest at least – I would never have thought to ask if she was in pain!

          I just wanted to let you know that it could be many different things going on with her. I hope you find out what’s going on – if anything… because, sometimes, not knowing is worse than wondering and worrying. At least it was for me, with my kids.

    • Mattie

      Can’t offer much advice, but try a ‘wet brush’ and get her to do her own hair, I used to HATE having my hair brushed (thick, curly, pulling hurt a lot) and the wet brush doesn’t pull at all really, and doing my own hair was more tolerable (you can also brush hair wet, so two-birds kinda situation). You can also buy things to go on her head to keep water off her face when hair washing 🙂

    • Mac Sherbert

      I know its the fad thing right now, but argan oil has been the best thing for tangles and hair brushing at my house.

  • Dell

    Good job momma ! It’s a tough life. My sister in law is in the hospital right now because a mix of medication inbalance and her self adjusting the dosages cause her paranoia ro kick into high gear. It’s been her longest hospital stay since her diagnosis. She is getting better, and it is important to remind her she was balanced and functioning fully for 5 years and that she can do it again.

    In a way, this is harder on my husband and mil to deal with the hospital visits and everything that comes with dealing with an illness episode because they remember her from before she was sick. I’ve only known her as she is today with the illness always in her system so it is easy for me to not have expectations of her acting nurotypical – she is who she is now, and that is okay as long as she is as healthy as she can be.

  • Dr Kitty

    What a beautiful piece.
    Much love to Bibi and mum- two wonderful people.

  • Squillo

    A really powerful, beautifully written piece. Thanks to the author for sharing and to Amy for posting it.

    • Lisatgray

      If you were looking for a way to earn some extra income every week… Look no more!!!! Here is a great opportunity for everyone to make $95/per hour by working in your free time on your computer from home… I’ve been doing this for 6 months now and last month i’ve earned my first five-figure paycheck ever!!!! Learn more about it on following link
      http://www.TopJobsWorldNetworkGroupBest/Home/Net…...

  • demodocus

    *hugs for Bibi* Brain chemistry can suck. People get stupid around people with physical issues, but its worse with mental ones. My husband is blind in addition to having the family tendency to depression. He’s very open about the blindness but not so much with the depression and anxiety.

  • Heidi_storage

    What a story–so full of love and pain. Bibi sounds amazing, and so does her mother.