My friend Katie Maki aka Mamabear is an amazing source of nutritional rehabilitation recipes and lived experience, and her ability to refeed and get her daughter fully well while living in a remote location and with limited access to specialized help taught her a lot and she is generous in sharing that knowledge. This is Katie's and her family's story the video to accompany it (please do watch - hearing this all in her voice is powerful) is found here. Look for more great recipes and advice on Mambear Mondays!
The Mamabear Approach
My entire life I have been an outspoken person. I have always asked hard questions, often questions that others see as controversial. I have always had strong opinions and have questioned authority. For as much flack as I have taken for all of this, I am beyond thankful for this aspect of myself, as I have navigated through the quagmire of mental illness in my child.
When my daughter was diagnosed with Anorexia in the fall of fifth grade (in 2010 at age 10), I literally lost all confidence in myself as a mother and caregiver. I do not think one person escapes the initial shock and guilt that you feel. The “should have, could have, would haves." The “How did this happen under my watch?” I struggled with body image my entire life just like the vast majority of people in this country. I had lost a bunch of weight in the previous years and was religiously working out and running. I thought I was setting a good example. I know now that anorexia is a highly-genetically linked disease involving metabolism dysfunction. I know now that no one ever chooses to have an ED. I wish I could go back in time and have a talk with my 2010 self. It was not my fault.
My husband did a ton of research as our daughter continued to spiral and he found something called the “Maudsley Method." He found the book “ Eating With your Anorexic” by Laura Collins. He wanted to try a version of this method on our own. I was too scared. Too terrified. I was full of self-doubt.
I spent every spare moment trying to find help. The majority of places that I contacted did not take ten-year-olds and they had no recommendations. The majority of therapists I called told me my daughter was “too sick” and needed to go to an inpatient facility. A few places would take her but we would be banned from even talking to her for the first 72 hours and then only allowed to see her during visiting hours. I literally hung up if I heard those words. They were seriously asking us to hand over our 10-year-old child. No way in hell was that going to happen. I did find one place that was willing to work with us. They were willing to let me stay there with her a few nights. They were willing to let me be around in the building and to hang out in the group room during free times etc. It was not by any means great, but it was the only place that was not going to do basically a parentectomy. It was 8 hours away from our rural home. I would stay with her. My husband would be home with our other two kids and keep working. We were beyond terrified.
We had actually gotten my daughter eating a few days before she went to inpatient. We had spent hours at the table with her ED screaming, crying, begging, writhing, spitting, and throwing. We had gotten her to eat that morning before she was admitted. We sat in that office during her intake talking to all sorts of people. As I watched the hours go by I finally asked if they were going to feed her lunch? By now it was like 1 pm. The psychiatrist jumped up and got on the phone and got my daughter a yogurt and a not yet ripe banana. This was the first red flag.
We met with a dietician who literally gave us plastic food and a plate and asked us to show her what we thought serving sizes were and what was a balanced meal. I was so angry. I remember my husband and I talking about how degraded we both felt.
I was given meal plans that I was to fill out for my child. They were huge papers with all sorts of numbers and requirements. We decided on day one that if she had eaten it before she got sick, then it would be fair game. I now know this is referred to as the “tear the band-aid off” method of tackling fear foods. I just looked at this as war: war against something that was trying to kill my baby. The dieticians and some staff questioned this. They thought I was pushing “too hard”. As the days and weeks went on our daughter was not gaining much weight. I would beg and push for them to up her calories and fats. They were shocked that she was not gaining at 2200, 2500, 2800 calories. On this meal plan she only was required to have x number of fats. She would argue with me in the cafeteria if I added an extra tiny butter packet because she “already had 2 fats." My ten-year-old child with an eating disorder was being taught how to count fats. I was feeding my starving kid green beans and apples. It felt wrong. Everything felt wrong.
As a “reward” for completing meals, my daughter was given participation in a yoga class. All she talked about was that class. It was obvious to me from the second I heard her talk about it that her ED was going to use this as yet another way to exercise excessively. She had a severe exercise compulsion as a part of her illness. I told them no yoga. She did things like making mistakes on purpose on her homework so she could violently erase to the point of sweating. I asked the teacher to let her use a pen. I was basically told that I was seeing ED everywhere and needed to relax. They caught her doing squats. I demanded a 1:1 with her at night. Turns out, ED WAS everywhere.
During a parent support group meeting the leader said something to the effect of “They have to choose to get better. We cannot make them eat.” I snapped. I said, “The Hell we can’t." I left the meeting and felt in all honesty enraged. A woman came up to me with a tiny piece of paper with the F.E.A.S.T. website written down. She said that we seemed to be very like-minded and that this website was different. That was a game-changer. I also found the book “Brave Girl Eating” by Harriet Brown. I was becoming empowered. I was trusting in myself again. A fire started to grow in my belly. I am grateful to my husband for being patient and allowing me the time to believe in myself again.
To make a long story short, after the psychiatrist told my daughter that me leaving for less than 24 hours to go see my other two children was “abandoning her,” my husband and I decided enough was enough. We decided to take our daughter home and refeed her on our own.
In the first ten days we put more weight on her than they had the entire month she was inpatient. We went from 2800 to 4000 calories the day she got home. We ramped up the fats big time. We used heavy cream, butter, and oils wherever possible. As time went on her caloric needs rose. Growth hit. It took 6000 plus calories a day for nearly three years. She grew nearly 9 inches and went through full puberty. She doubled her body weight.
In some ways I feel like we were “lucky” at that time to not really have any growth charts. We just kept going and feeding her for years until she was able to fight ED on her own. We fed her until her brain righted itself. A couple of times I thought we could maybe back off on calories and it bit us in the butt every single time.
We also live in a very rural area where there is no professional help for EDs. Our family doctor was willing to listen and learn and basically we coached her through what we wanted said to our daughter. We wanted blind weights. No talk of numbers, goal weights, or appearance. We asked our doctor to tell our daughter to “Trust mom and dad." We had no dietician or psychiatrist. Our daughter had no pre-existing issues before she got anorexia. Her OCD behaviors, severe anxiety, depression, panic attacks, hallucinations, all diminished and eventually disappeared with enough weight gain and time. She never took any medication. We used Skype to talk with an awesome therapist a few times in the beginning, and she supported our decision to stop therapy. She was too mentally ill for therapy to benefit her at that time. I am not preaching to go this alone by any means; this was just our reality. If we had needed more intervention we would have gotten it somehow.
We did our own version of exposure therapy with some of her behaviors. We got a kitten and she was only allowed to see her if she could go up the stairs to my room normally. She would do patterns of jumping and touching her toes and all sorts of things when using stairs. We worked on it for a few days here and there. My husband would hold her torso and I would physically move her legs one at a time on the stairs. Then she asked me “Mom, if I run up the stairs one step at a time can I see my kitten?” I said yes. She then spent about a half an hour talking to herself and her eating disorder out loud. She was crying and taking deep breaths. All of a sudden she did it! She ran up those stairs one stair at a time, one foot at a time. She got to the top and was beaming! She never did that particular behavior again. It was like that with a lot of behaviors.
We learned to “speak ED”. Things like when we went out to eat and my daughter would beg me to get her anything but French fries. That was really her way of telling on her ED. Her ED did not want to her have them so that meant I needed to require that she eat them. This happened many times along the journey. We learned quickly that when we found rotting food or found out she was dumping her lunch it meant that she just was not ready for any independent eating. It was again her way of telling on her internal bully. We ate lunch with her nearly daily for the majority of 2.5 school years. We looked at food as her medicine. She needed every dose every day.
If she spat out a bite, it was replaced. If she picked apart a bun then she got a new one. If she was caught exercising she got 3 warnings and then a shot glass of Ensure. I slept with her for a year to keep her safe at night. Then she slept in bunk beds with her little brother for about 6 months. We sat outside of the toilet and the shower. We did everything in our power to prevent that eating disorder from getting its way.
None of this was easy. It was Hell. It was exhausting. But in the end, it worked.
It took a solid 3 years of 3 meals and 2-3 snacks to get our child to a point where she could battle those ED thoughts on her own. Then it took a couple more years of being ever vigilant. If we felt the ED hairs stand up on the back of our necks or that familiar pit in our stomachs, we jumped on it. That part sucked. You just want so badly for it to be over.
We also dealt with some really scary risk-taking behavior when my D was in middle school. Her old friend group turned on her. People told her to kill herself. She was sneaking out with older kids doing all sorts of stupid things. So just like we did with ED, we circled the wagons. We tightened the reigns. And we loved her fiercely through it.
I guess there are some fundamentals to parenting a mentally ill child with an eating disorder that I feel very strongly about.
Separate the ED from the person. They are not their eating disorder. I imagined a black mass with long gnarly talons standing behind my daughter whispering lies into her ears. Your child is not a liar, ED is. That bastard was going down.
Go to war. There will be hundreds of battles in this war but ultimately all that matters is that you win more than you lose. You will lose some. Put the hardcore work in upfront and stay the course. Do not back off.
Accept that you will make mistakes. But these mistakes are not failure. They are simply the feedback needed to change something.
There will be many times that you have to fight your parental instinct to just give into the ED. As a parent, all you want to do is relieve your child from their pain and anxiety. In this situation, we must do the opposite. We have to calmly push them to face it head-on all day every day. We must fight their eating disorder for them until they are strong enough to start to do it on their own. It is the hardest work I have ever done. It is a selfless act. I used to jump in front of my mirror like a boxer and put cold water on my face before facing ED. I would say, “Bring it. You will not get my child. We will beat you.”
Give up on timelines. It takes as long as it takes. When you feel stuck, tweak something.
Figure out where the holes are and close them. Figure out a new strategy.
TRUST YOUR GUT. Once you learn the basics of how this process works, trust your gut even when you desperately want to ignore it.
Be a united front even when you aren’t. FAKE IT. Talk about it later but in that moment you must be a team against the ED. ED will take advantage of any and all cracks it sees in you. It will try to play you against each other. This is true for spouses, siblings, friends etc.
Expect that some people in your life will choose to not understand how this illness works and why your life has turned upside down. They will not understand how sick your child truly still is after gaining back some weight. Let these people go. You need not waste energy.
Demand that your medical professionals on your team are practicing based on the most current evidence-based science. Be your own advocate. Read everything you can. Be the captain of the ship. This doesn’t mean that you need to be adversarial, but do not fall victim to the white coat syndrome. Solid ED help is hard to find. Join support groups online. There are some fabulous ones. Join F.E.A.S.T. and the Around the Dinner Table Forum. The people on that forum helped us save our child. Laura Collins deserves a Nobel Peace Prize for being a pioneer for the rest of us.
Do not settle for anything less than a full recovery. Do not ever give up. It is never too late.
And finally; Experts by experience are your greatest help.
-People like JD and me.
-People who have sat at that damn table.
-People who have loved a child fiercely through it all.
-We know this pain.
-We know this fear.
-We do not just sympathize with you; we empathize with you.
Chances are that if we have not gone through something similar, we know someone who has. We can find information and connect you. We can offer you a safe place to vent and cry while at the same time picking you up and dusting you off to get back in that ring.
Our daughter has been in recovery now for several years. She is a sophomore in college and is thriving. She wants to be a relationship and sex therapist. She has an awesome girlfriend. She is a talented musician who released her first album this year. She is healthy and happy and self- assured. She is my hero. She is a sparkle.
As life continues to throw curveballs at us, and it sure has, we know that everything we learned from our battle to save our child is somehow relevant and useful. It helps us with our other children and situations they face. It helps us with our own battles.
I would not wish this upon my worst enemy, but at the same time, I try to look at what benefits came from it. My family is tight. Our relationships are strong. We take nothing for granted. And my children know that we will love them fiercely through anything. We will not give up on them. Mama and Papa bears fight to the death for their cubs.
From JD: Many thanks to the Maki family for their openness and willingness to help others facing this fight. It's important and it changes things for the better even as it can be difficult. Daphne is living her best life today and that includes nurturing her musical career; you can listen to her music here.
Daphne is not the only lyricist in her family; this is a Mamabear poem on their journey.
Steel Embrace
The days were long, the nights were longer
The demon inside trying to grow stronger
I held it down, we held each other
An embrace of steel between child and mother
And even when the voice was loud,
Enveloped by that dark black cloud
I knew that you could hear my plea
I knew that you would come back to me
Your battered soul knew to trust in me
To let me kill the thing we could not see
Only guided by my unconditional love
And unseen angels from above
“ To the moon and back” we’d always say
As your true soul grew stronger every day
The tears we cried could fill an ocean,
The highs and lows of raw emotion
We’ve learned so much about what matters
And it’s not money or cars or corporate ladders
It’s the salt in our tears and the blood in our veins
Because after the battle, all that remains
Is the steel embrace as we hold each other
The unbreakable love between child and mother
Katie Maki