As I transition back into posting regularly (I really do have a lot to say ;) and people say they like it), I've asked a fellow warrior momma to share her thoughts.
She's chosen to write about their experiences with Maudsley Family Based Therapy and how it went for their particular family. Everyone has a different experience with different treatment models. And some things work for even the same child at different times. These are her views and she has chosen to remain anonymous. ~ Becky
Maudsley AND Momma knowing - by, Luminous Momma
We were the perfect family.
We were participating in the ‘perfect’ evidence-based, university FBT program.
That's exactly what we were told.
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 and will receive treatment..
I did not know or would have believed this marathon could still be going on after 5 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 Maudsley team 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. 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 3 snacks and 3 Maudsley meals 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. A therapist telling me, “You may need to re-feed her in the backyard shed, or you may need to take a separate apartment from the rest of your family for you and your daughter to preserve the rest of the family from the collateral damage being done to each of our souls.”
We were encouraged, no 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.” She is more than a body to fill.
I hate, hate the word “Re-feed.”
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 Maudsley Therapist and was told to give it “two more weeks” and charged 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. “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 I saw a child who was skeletal. 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 “Excorcist” 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 everywhere except for in my daughter. I whispered a prayer, gathered my breath and calmly directed each of my 3 other children to safe spaces upstairs as their sister lay writhing and sobbing under the table, my kitchen table. A place I felt for every family holds holy space. As I gazed upon the upside down-ness that was everywhere before me I saw utter brokenness in my struggling daughter. In the terrified eyes of my other children and in the shaking, bleeding hands of myself.
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 to 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 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 herself.
I asked if she'd be ok and then hurried down to tidy the war zone that was my kitchen. I did not look at the destruction as I cleared it into an outside garbage can. I tried in vain to call my Maudsley 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, surrounding counters and floor were covered with the horror that unfolded hours earlier.
No one called back...It was after 5.
No one was there to help hold this hell, 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 charge 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 did I know for sure" and listened, not to ‘best practices’, 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 may is beginning to find hers too.
We were the perfect family.
Maudsley did not work for us. I have no shame in that.
I have learned no matter what treatment you are asked to participate in, make sure mommas that there is consideration to how this will affect you, your family as well as your struggling child. When your momma gut gets that sickish feeling like after a doctor from one of the leading university-based FBT and research programs tells you in the examining room, "This illness, this is a gift, a true gift your child has been given." Run momma run!!! ‘Cause just because they are an expert in the field does not mean they know momma or are an expert on your family or your child.
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 Maudsley team who had made us believe that FBT is the only way a child could get well, I made the decision that would save my child and my family.
Through our family doctor who did all the testing my daughter needed, 3 days later she was in a residential home for adolescents with eating disorders. Her blood pressure 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 5 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 the ‘perfect family’ for Maudsley...No one told me or supported a belief that
‘best practices’ can also come from a momma who knows and trusts her knowing.
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 accepting this ugly true-ness fully. 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. Eventually, There's a healing that has to come from our children.
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.
My take away message is this: treatment is not one size fits all. If FBT is not working for your child or family let go of the guilt and thought “you have failed”. Turn your back on those telling you “to pull up your big girl panties” of “try harder”. Grant yourself permission to follow your momma intuition and reframe this thought. No one knows YOUR child better than YOU, after all it was your heartbeat they heard from the inside. Do whatever is necessary to save YOUR child even if that means abandoning “perfect FBT treatment” and seeking the support of an evidence-based residential treatment program. The goal is not to do what others deem as “perfect”, but to save YOUR child’s life. Your love will help you find the right path for your child and your family. Trust YOUR love. Whatever treatment path you choose for your loved one please know that if you are not seeing changes in 4-6 weeks, it’s time to re-evaluate.
~ Luminous Momma