Thank you for being a reader of my blog. As a thank you, you’re getting a preview of a new chapter that I’ve added to my Revised Second Edition of “Just Tell Her To Stop: Family Stories of Eating Disorders” that is being released in 2020.
Beautiful warrior moms, dads, siblings, partners, etc. know the soul shattering heartache of moments of hope that can suddenly pop like a red balloon—moments that only seconds earlier had brought mountain-top levels of joy. They have learned to listen to their wise instinct and use their breath to calm the consuming terror so they can choose micro moments of grace. Self-care has allowed them to feel those moments of life-giving grace, and to also experience the new grooves in the brain that allow them to go forward in a new calm, compassionate, confident way.
I’m a mom who has learned how to practice balancing self-care with grace while providing peer support to others wandering unsupported on this isolating journey. My days are filled with providing 1:1 and group coaching for family members of someone with an eating disorder. As a certified life coach, I take an oath to hold my client’s confidentiality so I have not told any of their stories in this book. I’ve written the stories of those who came to me wanting the hope of their hard earned experiences told. One particular client wanted to share how, because of our weekly coaching sessions over a few years, she held onto threads of hope and actually thrived. My book helped her find “her story” in the similar stories, and to identify with other families in order to feel connected to a community instead of isolated in a crowd. She no longer felt like a pariah living as an outsider in her own town.
This is the only chapter in which I did not write the story. This client calls herself “Luminous Momma” and is an established writer with a voice of her own so she wrote a letter to you dear caregivers.
During my own terrifying journey it would have been so powerful to hear that there was someone who understands the messy, hopeless, helpless, hard, long journey—and who came out the other side through self-care, support, grace, and courage. To have had the life-giving oxygen mask of accompaniment would have been life changing.
“Luminous Momma” has come out of the closeted darkness and reclaimed joy, and in the time since she wrote this, her child is living her healthy life fully, beautifully and is now off thriving at college. The long, dusty, rutted path of this journey can get better even though you don’t believe it at this moment. She has lived the heartache and seen the light at the end of the tunnel which no longer looks like a train coming head-on and is living a full, abundant life. She’s an amazing writer, and writing is her “super-power” so she has written this letter to the other moms since she is a mom. Please know that if you are a dad, sibling, spouse, partner, or friend, this applies to you as well.
This is her perspective and experience of having utilized an “evidence based treatment” model for part of her child’s recovery journey. This model is often called, FBT or Family Based Therapy which is different from family therapy that so many families have as part of their treatment. Please note that my clinician colleagues have confirmed that there is actually no “perfect family” for this model of treatment.
Enjoy her sparkling writing, and her message of hope. Re-read often, and you’ll get more with each reading. Thank you “Luminous Momma” for your gift of this letter. ~ Becky Henry
Letter to Parents/Family Caregivers, by “Luminous Momma”
We were the “perfect family.”
That’s exactly what we were told.
The family based approach experts said, “This is best practice treatment for someone so young as your daughter. You are the “perfect family.” It’s so good you caught this so early. You are in the best place.”
And I believed them.
I did not know that it takes as long as it takes and that having insurance did not mean you have insurance coverage.
I did not know and would not have believed this marathon could still be going on after five years and we still cannot see the flags at the finish line.
I wasn’t taught the complexity of the mental illness piece or even given a hint of the genetic stronghold. I didn’t know and the family based approach experts forgot to share that info with me, her mother.
I was told I was to re-feed my child. I had a part to play in her wellness, and I had a part in her illness. I was told I was responsible for her life, and as a mother I knew exactly what to feed her. They told me that everything in our life needed to stop if we loved our child. Hmm.
So let’s gather those thoughts as I weave them in the context of my family. There are other children, a husband, carpools and birthday parties and my own sanity to salvage. Treatment was hours away, and the need to maintain the car became as important as the daily grocery runs to get the calorie-laden essentials for our three snacks and three meals that were commanded of us to provide every single day.
We fell fast and far down the rabbit hole into a blackness that swallowed the entireness of us.
And the cast of characters we met, the treatment teams, well suffice to say they rivaled the characters of “Alice in Wonderland.” Someone told me, “You may need to re-feed her in the backyard shed, or you and your young adolescent daughter may need to take a separate apartment from the rest of your family to protect them from the collateral damage being done to each of your souls.”
We were encouraged, no, we were demanded to continue living this crazy, upside down life—for as long as it took. If we loved our daughter then the need for sacrifice of any and all things and all other persons in the family were necessary to save her, whatever it takes they told us was what we had to do.
And all the while we re-fed, no, we nourished our daughter. I despise the word “re-feeding.”
I hate, hate the word “Re-feed.”
She is more than a body to fill.
While we nourished our daughter, she began to disappear even more. There was less of her as each week went by.
I tearfully shared my growing concerns with the family based approach therapist and was told to give it “two more weeks,” and charged me once again with the responsibility of saving my child.
Surely I could save my child, they said.
I returned home to make the 1500-calorie dinner necessary and begged God to help allow these calories to be taken in to her emaciated frame because I saw a child who was skeletal. “This day, may this dinner not be a battle,” I silently hoped with all my heart. Alas, it was one of the ugliest ever, and her rage can only be described as primal. The kitchen was in shambles and the rest of my children were emotionally shattered as they watched their sister in an anorexic episode that could only be likened to something out of the “Exorcist” movie. Dishes flying, children scrambling for cover, chairs upended—was that her screaming or mine that made my head ache as this moment seemed to go on for years. Food was everywhere except into my daughter. I whispered a prayer, gathered my breath and calmly directed my three other children to safe spaces upstairs as their sister lay writhing and sobbing under the table. My kitchen table. A place I felt every family holds as holy space. As I gazed upon the upside down-ness that was everywhere before me, I saw utter brokenness in my struggling daughter. I also saw it in the terrified eyes of my other children and in my own shaking, bleeding hands.
What was our NEXT? My daughter was locked in this world of shame and anger, and the illness had a death grip on her mind and spirit. Couldn’t she see the devastation left in her wrath after asking her simply take one more bite?
No, she could not.
I attended to my hands, covered her in a prayer asking for this stronghold to be loosened from my child’s beautiful mind and body, and then I crawled next to her to let her know I was here.
She was not alone.
I gently coaxed her out from under the table and helped her step through all the shards and pieces of dishes on the floor, supporting her “oh-so-tiny” frame. I guided her up the stairs to a warm steamy shower, wishing some of this nightmare would melt off her sweet self.
I asked if she’d be okay, and then hurried down to tidy the war zone that was my kitchen. I did not look at the destruction; I simply cleared it all into an outside garbage can. I tried in vain to call my family based approach experts, our team. I left numerous messages as I swept up all the pieces of dishes and food. It seemed every surface of the kitchen, the table, and surrounding counters and floor were covered with the horror that unfolded hours earlier.
No one called back…It was Friday after 5pm.
No one was there to help me hold this hell, and my husband was on a plane flying across the country.
We were the “perfect family,” however, our daughter was disappearing before our eyes. ENOUGH!! ENOUGH of the experts who saw us for half an hour each week to assess her body, and then charged us to do better.
ENOUGH of the therapist who wanted us to catalogue for her the endless amounts of heavy cream and butter we were using in our daughter’s daily meals and telling us we needed to try harder, give it one more week. ENOUGH!
After 15 doctors and 9 specialists could not figure out why my daughter was fading away from us, after one expert thought because of my insistence I had Munchausen-by-proxy, why was I going to allow them to direct the ‘Next’ for my family?
So as I do whenever making hard and heavy decisions in the midst of this never-ending hell, I went to my room, sat at the end of my bed and fell into the practice I had cultivated after having to make too many heart-aching decisions. I put my hand over my heart, breathed in a deep breath of hope, and whispered “what do I know for sure” and listened, not to “best practices,” and not to what the experts told me. I simply turned to my heart, my God-given gift of momma-knowing and found in there was the path, there was the way to step NEXT and NOW.
My daughter’s body and mind are healing. My family’s spirit is healing. I am finding my joy, and my daughter is beginning to find hers too.
The “family based approach” did not work for us. I have no shame in that.
I have learned no matter what treatment you are asked to participate in, mommas, make sure there is consideration to how this will affect your family as well as your struggling child. When your “momma gut” gets that sickish feeling like after one of the doctors at the famous university hospital tells you in the examining room, “This illness, this is a gift, a true gift your child has been given.” Run, momma run!!! Just because they are experts in the field does not mean they know what to do, momma.
You know, trust yourself, momma, I did.
After that day in the kitchen, that night I crept beside my daughter’s bed to see how her body was doing. As she was sleeping, thick, blue, ropy veins pushed hard against her neck. I noticed a grayness to her pallor, and her chest was barely moving up and down.
In the deepness of the dawn, sitting in the corner of my laundry room, I dialed a number to a residential care facility that would take one so young—and without the help of the “family based approach” team of “experts.”
Through our family doctor who did all the testing that my daughter needed, three days later she was in a residential home for adolescents with eating disorders. Her heart rate was in the 40’s when she entered.
What if I hadn’t listened to my momma gut, what if I allowed the “best practice” treatment to continue? Well, I know for sure the story I would be writing today would be a very different one.
See no one believed when this all began over five years ago there was something wrong.
But this momma knew down deep something was not right.
Mommas, trust yourself. Believe you know what is best, consult, get quiet; then step forward knowing for sure that the experts only know what they know.
We the mommas know our children.
We were told we were the “perfect family” for the “family based approach”… No one told me or supported a belief that “best practices” can also come from a momma who knows and trusts her knowing.
Trusting our knowing does not mean we won’t question ourselves. As we were making the big decision to switch to a residential treatment center, I was questioning myself, “Is this really the next? Does it really mean at this time she cannot heal here in our home? Can I actually take her and leave her there?” And again, I needed to step into trusting my gut, stand firmly in my momma knowing and listen to my intuition to take the next step on a different path to try and help her recover.
I pray when you are stepping into your NEXT dear momma, you trust in your knowing and your seeing. That is where the gift lies, in our momma intuition, our momma-ness.
Oh, and momma, we can accompany our loved ones on this hellish journey and we can hold them if they let us get close enough. And most important, we can hold the hope for our family and our child. But momma, we cannot save her.
See momma, you need to be saying that out loud just about now, “I cannot save her…my love cannot save her.” Momma, I am so sorry, so terribly sorry about this truth. I am. I have come to know this to be true, and am still working on fully accepting this ugly true-ness. I believe the sooner we can grasp a whisper of that statement, we can begin to do some of our own healing, which may trickle on down to our sweet, suffering loved ones.
That doesn’t mean we stop, it just means I give you permission to know “it’s not your fault, momma, it’s not.” And it’s not yours to untangle. There’s a healing that has to come from our child.
How long momma? Well, as long as it takes. I do believe love wins, so keep loving your child into a sense of worthiness and they can heal. But momma, please love yourself, enough to let yourself off that cross you have crucified yourself on, enough to melt the thinking it is because of your genes or your past. That’s not helping the healing honey.
We were not the perfect family.
We are a family that can heal from anything, yes, even anorexia.
And you can too, momma.
I will be holding the hope high.
– Luminous Momma