If you have been reading my work, you may be curious about the chronology of these stories. This story you are about to read would be first, taking place in May 2017, while our daughter was a patient at Rady Children’s Hospital. The second would be Pop-Tarts and Gas Stations, which occurs about a month later in June 2017, while in the outpatient PHP at UCSD. Finally, Snow White and Snacks takes place in early September 2017, at home in Santa Barbara.
Flying Saucers and Parental Distress
When you ask eating disorder professionals what the most common parenting worry is in refeeding their child, you get some version of this statement.
“I’m scared that this process will forever damage my relationship with my child.”
If this is your worry, I will not dismiss it. However, you do need to get past it.
When I told my husband that this was a concern for many parents, he was stunned, stating bluntly:
“She can’t hate you if she is dead.”
It does sting as I read this… Jeff maintains that complex problems contain both short and long-term issues. Often, we can get caught up on the long-term problem and lose sight of the short term imminent danger.
Let me be honest, it never once occurred to me that our relationship with our daughter would be fractured. Not on the darkest hour of the darkest day. It was never on my radar. Jeff and I both saw the same thing, that in both the long and the short term— people die; at an alarming rate from eating disorders. That gave us complete clarity. At 11, we needed to keep her alive… to hate us…
When I speak with parents, one of the first questions I get asked is,
“How do I do it? How do I tolerate my child’s anger, refusals and distress?”
The short answer is… you just do it.
This is the only time; I will ever advise you to ignore your own feelings. Your laser like focus is to stabilize your child. I hear you when you say,
“How do you handle the angry words from your child?”
When your three-year-old had a meltdown in public, they screamed and cried because you would not buy them something and then said,
“I hate you, mommy…”
How did you react? Did you take it personally? Or did you laugh to yourself and instinctively pick up your toddler, kissed them on the forehead knowing my sweet baby is tired, she needs a nap and as her mom, I know what this behavior means?!
Parenting through an eating disorder will become like that. Goodness, I know it does not feel like it today. But it will. I PROMISE. It took a while to learn what your toddler was saying. This does too…
For a long time your home will feel like a battle zone. Meals were a battle for us for over a year. Yes, it is the hardest and most exhausting work you will ever do. And let me be clear, there are no short cuts. There’s only getting through it. Even if your child receives excellent residential treatment, they do not come home well. They will be more stable than when they left, but they are not well. You still have oodles of work to do…
I know its brutal when your child hurls a string of profanities at you. Let’s be honest, sometimes you didn’t even know that combination of words could go together. But they did, and in your kitchen. So, I ask you, how is that any different from when she was three? Is it because her vocabulary is better? Is it more cutting?
When it happens. In that moment… Stop.
Focus on her verbal skills as a work of Art!
No. I’m not joking.
Seriously, she is so dysregulated, so out of control and her brain is firing at YOU. You need to pay attention.
Just as she did when she was three… She is using her “words” albeit in the most horrifying string of expletives to tell you,
“Mommy, I can’t do this… I’m scared. ED is hurting me. I need you. Save me.”
Do not turn away. You face this. Your child is being held hostage. And your job is to step in front of the terrorist, to use your body as a human shield.
These beauties are our children. We are their parents. We protect them. We love them. We get them well.
And we do it with, this meal. This snack. And then we do it all over again. For as long as necessary…
How you do it is up to you. But I’m going to tell you how I did it. With a story about a flying saucer.
I honestly don’t know how I missed it at first. It is likely because my head ached, and my left eye was throbbing. But as I stood alone in the sterile hospital bathroom. I heard nothing, not the buzzing of monitors, nor the voices or footsteps of medical staff just outside the door. No, I was transfixed by my own reflection in the mirror—in complete utter silence.
I was without question in physical pain, but in that moment it was my soul that ached, from a depth of agony I had never known. As the throbbing from my eyebrow persisted, I unconsciously lifted my hand to the source— my heart stopped. For the first time, my eyes rimmed with tears. I felt a completely different tsunami of emotions, I wanted to wail, a deep agonizing cry… of relief. Because as my heart stopped— I saw it, the trickle of deep red blood tracing a thin line down toward my eyelid.
What should have felt like utter darkness, alone in that antiseptic hospital bathroom, the smell of disinfectants engulfing me, blood trickling down my eye. I felt only relief.
Yes, Norah’s actions had technically hurt me. And there would be consequences for her actions, but the depth of her rage—that’s what we call, a tell. The sheer raw terror, the lack of self-regulation; her life was in freefall with no bottom. I saw it all, I felt it, I could smell it. It was visceral, it was primal. It was raw…
If another person on the planet had hit me; intentionally or not, my reaction would have been different. Much different. In this hospital bathroom, seeing my reflection, it was the turning point, if not for my daughter, then for me. It was an opening, and as her mother that was all I needed.
I had been in the bathroom for less than five minutes. As I walked back down the hallway, I met the deep loving embrace of the psychologist who saw it happen.
Her intense eyes locked on mine, “First, are you ok?”
I nodded, I was fine, honestly—just a little stunned and even shaken. We both were. What amazed us both was the rocket fuel acceleration of her rage. Neither of us saw it coming. As I shared my battle scar, we both nervously laughed. I exhaled, exhausted, relieved, and buoyed by the depth of my daughter’s anger. The intensity of her actions assured me of her grit.
For nearly a month, I had spent night after night sleeping at Norah’s hospital bedside, the machines monitoring her beating heart, I had worried my daughter had lost her tenacity. That she had lost her fight. The sting just above my eye, was confirmation that my Irish Princess was still alive, albeit in her broken body. My eye bore witness, to what a mother’s soul trusted; the Irish Princess was still and would always be a warrior at her core. The Psychologist and I spoke briefly to discuss an action plan. She said that my Beauty was inconsolable and we absolutory could walk away from this meal.
My soul ached, but in this moment the depth of my maternal love, would be matched only by my own fortitude. She would finish this lunch. And while she was a long way from winning the war—my eyebrow was going to turn this meal into my daughter’s first win against anorexia.
A few days before this meal, the medical team agreed that we needed to increase the meal completion goal. In recent days, Norah had been backsliding, she was not eating the same percentage of food. And was becoming more dependent on the feeding tube. We set the meal goal at 75% solid food with the remainder by the feeding tube. When she was successful, she would be permitted to go on a short walk around the unit. Norah was so ill that she was not allowed out of bed. These walks were her only motivator—one or two laps— less than five minutes out of bed. That was her only motivation to eat. Anything.
Just a few minutes prior, we had assembled in the family designated meal space. The light filled room had a sofa, coffee table and two chairs. The psychologist and I were both in the chairs and Norah was seated on the sofa. We chatted lightly for a minute, and then the psychologist asked Norah to remove the institutional dome that covered her meal. You know the kind, those colored lids that keep hospital food warm. I had no idea what was under the dome. But once she removed it, I immediately knew we were screwed…
The meal goal was to eat 75% of the chicken wrap, small side, and drink.
This wasn’t something I had seen her eat in forever. It would be a beast. Immediately she flat refused. I did the coaching. She pushed the plate away. The psychologist also coached, she advised her of the mealtime clock. Norah defiantly stared back at me. I could no longer see my daughter. No, what was staring back at me was a caged and cornered wild animal.
Norah was so thin, her eyes sunken, cheeks hallow, her once porcelain skin was grey, her beautiful smile replaced with a feeding tube taped to her face, her long brown hair had lost its luster and was falling out in clumps. She no longer looked like Hermione Granger who she was for Halloween just a few years prior. That child was gone, what I saw was her ghost—cold to the touch; her hands hadn’t been warm in months. On the rare occasion she would now let me touch her, all I could feel were her bones. As I looked across the coffee table, all I could see was this ghost’s brewing rage.
And then it began. My eleven-year-old daughter was screaming at me.
“YOU LIED. I’m not eating. It’s GARBAGE. I’ve never had to eat 75% of my meal to get a walk. It’s too much food.”
Her fear was palpable. But I was firm.
“You will eat your lunch or no walk. It’s that simple. The rules at home will be different from the rules here in the hospital. This is a family lunch and as your parents, we set the terms.”
As the words came out of my mouth, she picked up the plastic dome that covered her food and slammed it on the table.
“NO, I WON'T EAT.”
The second she releases her hand off the dome, it went airborne. It became a flying saucer and you guessed it… It clipped my eyebrow. Honestly, if the circumstances had been different it would have been funny, but the situation at this table was anything but. Shock registered on each of our faces, the psychologist instantly stood up and said,
“That’s it. Lunch is over.”
Stunned. I looked at the psychologist and asked permission to be excused. I needed a moment. My sweet baby, just sat at the table dumbstruck and reached out for me…
“Mom it was an accident...I didn’t mean to...I’m sorry. Please don’t go.”
It was one of the hardest things I have ever done. I walked away from her in that moment. I had never left my children in distress. But, I needed to regroup. I needed this moment for myself.
A few minutes later, after our hallway chat. The psychologist and I reentered the space,
(I need to add, Norah was never alone. In my short absence another psychologist was brought in to monitor and support her.)
I found my baby curled up into a ball on the sofa, her brown eyes red with tears, she was a mess, red faced, snotty and sobbing. Without question it remains the tiniest I had ever seen my daughter.... she continued to sob; from a place of pain, she had never known.
“Mom, I’m so sorry, you will never forgive me...You are bleeding, I will never forgive myself. I hate myself. I hurt you...I’m so sorry.”
The sobbing was unrelenting. As a mother, it wrecked me. I have never known a time I was more desperate to release her from her pain. I curled up on the cold tile floor at my daughter’s feet. I then cradled my battle-weary warrior in my arms.
My sole responsibility as a mother is to protect my child, this is the child I prayed for and the child that I had spent months on bedrest to safely bring into the world. In this moment, I wanted nothing more than to carry us both away from this place—to make it all go away.
My job in the moment was comforter, to love what anorexia had robbed, her power, confidence, her strength. I could feel every bone, her arms were fragile wings, not the arms of my fearless tennis player, she felt no heavier that the clothes she was wearing.
I took my snotty nosed, red faced wreck of a child’s face into my hands… and I told her OUR truth.
“You are mine. You are here right now because Dad and I will do anything to get you well. And today, wellness happens in this room. You will finish this lunch.”
My Irish Princess was cold, shaken and shaking, looked at me and uttered the only possible response.
“Yes, Mom.”
Moving back to the table, I too was too drained to eat; but I forced myself to pick up my own fork to eat. I sipped my Coke. In this horrible moment, I was modeling eating through distress. While I continued to eat I watched my daughter’s hand shake and tremble as she moved the chicken wrap to her mouth. And then, she dropped it on the plate.
Sobbing, she begged me… “I can’t. Mom. I’m so sorry, I just can’t.”
Setting my food down, I reached my hand across the table, searching for my daughter, with barely a whisper I said,
“Norah, you look at me.”
Holding her shaking hand, I rubbed my grandmother's delicate wedding band. A ring I had placed on her hand just a month prior.
I was rubbing that ring for both of us. The ring, I had told her was our family talisman, a reminder that she comes from a long line of powerful woman. I told her that her great grandmother; was the fiercest woman I have ever known. Firmly holding her hand in mine, my voice was stronger, I began our mantra…
“Nor, you look at me. LOOK. AT. ME. Yes. You can. I’m right here with you. I will not leave you. YOU. ARE. MINE. I LOVE YOU. And we will do it together.”
With tears overflowing her exhausted eyes, she took a first a small bite of food. Her eyes closing, chewing, that face I knew better than my own, was unable to hide the excruciating pain. Bite after tiny bite, hands shaking, lips quivering, she persisted. For the next 20 minutes, my daughter was the bravest warrior to ever walk the earth, her brown eyes were filled with silent tears, and with each small bite she persisted until the meal was 75% complete.
Weak and exhausted, I walked with her back to her hospital bed, where she hooked herself back up to her heart monitor. As I tucked her in, I caught a glimpse of the butterfly on her chipped blue pedicure. I climbed up onto the bed, moving her tray table. Surrounding us were the telltale signs of childhood, a small gaming device, gel pens/coloring books all neatly stacked. For the next hour, I held my daughter and we watched television. A nurse came in and gave her the remaining 25% in the feeding tube. And at precisely 3 pm, a staff member came to escort my Irish Princess, my warrior, to a different dining room for a snack of cookies and milk. Which she ate.
I’m sure you guessed the consequences for the meal meltdown- she never got to go for the walk.
Today, almost four years have passed, and Norah is in solid recovery. She hugs me, she laughs with me and at me. She tells me she loves me. At fifteen she is wise beyond her years, with tremendous empathy and tolerance for the suffering of others. But let’s be honest, she is a full-on teenager, so she is still growing, learning and maturing. Even without anorexia, she would still have supports in palace, which I call scaffolding, to guide and protect her.
Former Cancer patients get monitored for years, and so does Norah. We still meet regularly with her UCSD based doctor and at minimum twice monthly for check ins with her therapist. These appointments have changed. There is a lot more laughter and smiles. Norah still does great work with both navigating the teen world’s challenges. But these two women, her doctor and therapist are her tribe. We speak as a team and Norah speaks to them privately and openly. I trust these two women with my life, but more importantly, I trust them with my daughter’s. They will remain in her life for years….
When my husband Jeffrey read this story, he asked me…
“How many times do you think Norah used some version of I hate you?”
We both smiled and laughed.
Because I can’t count that high… Because every time she did, I smiled inside. In that sacred space all mothers have. Where I visualize another anorexia cell dying a slow, lonely, painful death…
And in that private space, I look directly at ANOREXIA and I say boldly.
FUCK YOU. She was never yours. She has always been mine… Always.
When your child has an eating disorder the worries at times compound. You often can’t see the light, so it makes sense that many worry about their long term relationships with their children. If you take but one nugget from our story, take this. They will not hate you. I promise. They will thank you. Your child will be happy, they will love you and you will delight in every second. I can’t put into words how much better their life will be. A full life without the suffering, without the sleepless nights, without the screams and when their terror finally ends. Because when it happens—you understand a love and happiness you never imaged.
Thank you, for taking the time to read our story. I write them for the millions of Norah’s I will never meet and their parents.
Each time we read and share each other’s stories; we join our voices together to eliminate the stigma of eating disorders.
To parents and caregivers, tell your children everyday:
Full and complete recovery is possible, it is your reality, and it begins with this meal.
Much love to you and yours.
Kathryn
Pilgrimage Gal
(photo credit: Shutter Stock)