Welcome,
If you landed here, you may have questions or concerns about a loved one with an eating disorder (ED). I’m sorry that this is where I meet you, but grateful you have found your way here. In the Spring of 2017, we watched helplessly as our 11-year-old daughter nearly died from anorexia. As a result of our experience, I wrote this article for my hometown paper the Washington Post, "She was 11, with an eating disorder" .
Pop-Tart and Gas stations…
I have often said even before eating disorders (ED) entered our life, that there are chapters and chapters missing in the book, “What to Expect When you are Expecting.” Even when my kiddos were tiny, I often found that other moms were the battle tested experts. You know the ones, the moms whose kiddos were just a bit older than yours but could still feel the sting of the developmental milestone you were facing. They knew exactly how to handle that beautiful baby that would not sleep though the night or could coach you through the latest developmental surprise.
The COVID pandemic has unleashed a major toll on our children with eating disorders. Millions of families are working tirelessly to re-feed their children and doing their absolute best. In the last few weeks, I have seen FB post after post with questions about fear foods, food lists and questions about junk food. We have tackled each of these issues at our kitchen table. I am also the first to admit that my opinions on junk food took a complete 180° after the Pop-Tart snack incident in our ED outpatient program.
In the Spring of 2017, when our 11-year-old daughter was admitted into Rady Children’s Hospital, her doctor asked us if she had any medical or food allergies. We shared she did not. Next, we were asked to remember a time that our daughter was healthy and to make a list of foods she never really liked. That was easy for us. She had three types foods that she never liked going all the way back to preschool. They were seafood, Chinese food, and raw tomatoes. If we had Chinese food, she literally ate white rice from the time she was a toddler. The treatment team was clear—she would not be given the three foods on that list. We all have preferences, but each one of us have been in the position of being presented with a food we do not love, and we still have eaten it. Keep in mind, our children are different from their siblings and peers— they have a medical condition that requires food as its primary medicine. Eating when they don’t want to and eating foods they don’t love is a key skill your loved one needs to master—ultimately, their recovery depends on it…
As you consider your loved one’s No List… Keep in mind two things, many programs only allow three items and ED has a long reach. There are oodles of stories of loved one’s desire to be a dairy free, vegan, vegetarian or pescatarian, which were all part of an early pattern of restriction. Unless it is in your faith tradition or family’s value system to refrain from eating animal products think long and hard about what you will allow your child to have on their No List. Your goal is to ensure that your loved one makes a full and complete recovery from ED- do not settle for quasi-recovery. The No List utilized during re-feeding, should closely match the historical foods your child did not eat long before ED made an appearance in your home.
In some circles, there is a distinction between a No List and a Fear Food List. In our work at Rady Children’s and the UCSD Eating Disorder Clinic, this distinction was never made. We operated in the realm, if it was something she would have eaten before her ED diagnosis, then its something she should eat now. A Fear Food List is never something we knew about or allowed our daughter to build. She knew if it wasn’t on the No List, she was expected to eat it.
At 10 our daughter’s ED restriction manifested by foods that made her “nauseous”. In a few short months, her food list became dangerously limited. At first, her Rady/UCSD team thought she had ARFID, but it quickly became abundantly clear that she had anorexia. In the clinical setting, as we began wide-ranging refeeding, we witnessed the full wrath that ED was inflicting on our daughter.
After a month on a feeding tube in the hospital, she stepped down to the outpatient program at UCSD. She was in bad shape. Still unable to complete most meals and snacks without Boost supplement. After a parent session, we joined our children for a snack, once completed we would go home for the day. As I recall the snack that day consisted of three things, a juice box, a cheese stick and one pop tart.
At the time, I remember thinking, “Really? A Pop-Tart, that’s crap.”
Full disclosure, Pre-ED, I would have called certain food “junk”. We absolutely didn’t have Pop-Tarts in our house. I own it… Yep, I was that Mom.
But those days will never return because, “When you know better, you do better…”
There are moments in this journey that you can’t unsee… Pop-Tarts, will always be that for me. My entire world shifted in an instant when I sat at that table.
I watched her eye that flipping Pop-Tart like a serpent, a cobra circling her. She balked at the entire snack. Immediately telling me she would, “Just take the supplement.”
Calmly but firmly, I told her she was eating. After 12 minutes of coaching, she took the first bite of the cheese stick. Her hands shook with each bite, she had tears in her eyes, but she was working so hard to eat. She was desperate to get to the mandated 50% of the food to finish the remainder of the snack with the drink supplement. The pain and anguish on her face was palpable. As I looked around the table, her other program mates were trudging through. My girl was not making progress. At the required 20 minute mark, she wasn’t close and she still needed to eat a portion of the Pop Tart. She would not budge. Flat refusing to even pick up the Pop-Tart.
I coached her to “pick it up”, just to break the fear, she needed to touch her metaphorical snake, she picked it up and immediately pushed it across the table. I moved it back, and then she said it…
“Mom, you would never eat a Pop-Tart” and with sheer disgust in her 11-year-old voice, “And, you certainly wouldn’t have it in our house. This is GROSS!”
I calmly, picked up the Pop-Tart and placed it in front of her.
“Lovie,” I tilted her chin up, her lips were quivering, “Snack today is a Pop-Tart…”
Her reply was instant, “But Mom, WE NEVER EAT THEM. I never ate them before we were here. Why now?”
No one should have this type of VISCERAL REACTION to any food. Today, is the day that you know better. Our children don’t eat like everyone else’s children—full recovery means that we adapt, we change our relationship with food.
I do not care if in the past you considered some foods to have zero nutritional value…
When your child has diabetes, and their blood sugar drops, you don’t give them protein, you give them sugar. You give them a Pop-Tart, you give them a candy bar… Every food has a purpose and a lifesaving one at that.
I often would ask my daughter; “we are in a sketchy gas station in the middle of nowhere. We have not eaten for hours. Can you walk into that gas station and buy food?”
“You go to a party and they only have chips and chocolate cake- would you refuse? “
“Your plane lands late and the only thing open in the airport is a coffee shop with a donut. Will you go without? Or will you eat the donut? “
In that moment, you know instinctively, today it is a Pop-Tart… Tomorrow, it will be a cheeseburger and the day after that it will be something else… Where do you draw the line?
“Lovie, I know you are upset, and I know this is really hard. We are going to do it together. You need to understand, if you can’t eat it here. You will be eating Pop-Tarts at every meal at home until you can eat two without a problem. I’m right here, let’s get it done, together.”
She flat refused.
The other kiddos were now in the process of leaving for the day. Her buddies were doing their best to encourage her, as they picked up their bags to go home. She was stuck. She could not leave the table until she finished the meal or the supplement. She desperately wanted to leave.
She again asked for her supplement. I once again coached her to, “Pick up the Pop-Tart and take a bite.”
At this point, her team was ready to call it… I knew they were. She was a mess. I know my child, and before calling snack, I played my card. I picked up my phone and called my husband.
“Jeff, we are a little stuck here. I need you to go to the grocery store and get every flavor and box of Pop Tart the store has. I want the shelf clean; can you do that?”
In this moment, we had been married over 25 years, he knew two things about his very Irish Catholic wife, I wasn’t asking and I wasn’t bluffing.
His reply was why we are a solid unstoppable team united for our children.
“Yep. You are also the best fucking mama bear there is. You’ve got this. I love you.”
As I set the phone down, my sweet girl was stunned. As was the care team. I wasn’t balking.
I once more coached lovingly, “Take a bite. I know it’s hard. I’m with you for every bite.”
She just couldn’t, my heart broke for her. She started to cry. I pushed the Pop-Tart away and called the snack.
I held my sweet little girl in my arms, wiped the tears and then gave her the supplement. She drank it.
By the time we got home it was 40 minutes till her dinner. As promised, dinner included a Pop-Tart. The meal was brutal. Her hands shook, she cried, she crushed several over the following weeks. She was in extreme distress. For every crushed Pop-Tart, another from our stuffed kitchen cabinet appeared to replace it. That first dinner, she may have taken a single bite. Snack that night, she ate the whole thing. The food I hated, stupid flipping Pop-Tarts were around for weeks… Every meal or snack we gave her one.
Over the course of a month, she tried and ate EVERY, SINGLE, FLAVOR of Pop-Tart on the market. After oodles of meals, she did it… She could eat two without her hands shaking. And for months, Pop Tarts would occasionally appear… no problem.
Now today, years later, given the choice, there are tons of sweet foods she would choose over Pop Tarts and that’s fine, but full recovery means that you can… and if necessary, you will. Because some day, that may be your only option.
In our house we honor our body’s requests. On a hot night this summer, our daughter came into the living room, she looked at her father and said, “Dad, this is crazy, but I’ve craved a Cherry Slurpee all day. Would you take me to 7-11?“ My husband jumped off the sofa and off they went. It had been years since she had had a Slurpee…. Was it nostalgia or was it because it was hot?…
Who knows? Who cares?
Regardless of the reason, it was another sign of her ability to sustain recovery. And nearly four years in, she is still working on her skills and tools…
This is what full recovery looks like, and it is my hope, my wish and prayer for you…
I’m humbled that you allowed me to share our story. As you finish reading this, know this in your bones, you are a wonderful loving parent and even in the darkest moments, you are on the path to wellness.
- Kathryn
photo credit: KayVee.INC <a href="http://www.flickr.com/photos/25678284@N03/4209078409">Pop Tarts!</a> via <a href="http://photopin.com">photopin</a> <a href="https://creativecommons.org/licenses/by-nc-sa/2.0/">(license)</a>