Coaching moms who have a child in eating disorders recovery unveils a variety of challenges that life throws at them.

In between learning to;
 

• Navigate insurance
• ​Set healthy boundaries
• Create & engage a treatment team
• Be calm in the face of terror and chaos
• Nurture a marriage & other children who are getting lost in the fray

 
These women also are also hitting the age at which their body is ‘turning on them’. Okay, well they say it feels like that.

As I was looking for photos for this article, I saw many photos of women and children missing one or two arms. It reinforced my aim, to help us all to appreciate and feel gratitude for the arms we do have.

Working at my computer, the muscles have gotten smaller and the arms have gotten looser, bigger and lower...It’s all part of what happens naturally. AND, I’m working at reclaiming some of my strength so that I can have as much freedom as possible for the next 55 years. :) Yet, even though I know all I do about loving our bodies, it can be weird to watch my body change. And have to buy larger clothes. This is the reality. 

When we are parenting a child in eating disorders recovery it is essential that we model body positivity at all times. Not an easy task. Our child needs us to show them (not tell them) how we love our bodies. By doing our parallel process we can help ourselves and our child in recovery. 

Here are 5 SIMPLE things we can each do to combat these feelings and thoughts we have about our arms (or other body parts), especially as we are wearing sleeveless tops and swimsuits:

1. Feel gratitude for what our arms have done for us.
2. Have gratitude for what our arms can do for us still.
3. Notice when we have judgment and shift to gratitude.
4. Stop comparing our arms to what they used to look like and what other’s arms look like.
5. Go do something with our amazing arms to help someone else.

Will you take the challenge and love your body everywhere you go this summer? Even your amazing arms?

How do we implement all this? I’m going to challenge you to make a list of all the things about your arms for which you have gratitude so that you have it handy to accomplish the 5 steps. Feel free to share the shifts you notice on my Facebook page! Shift does happen. ​

Now, let’s get out there and enjoy the summer!
​Becky

 3. Learn skills for being; calm, emotionally objective and confident. This may include some DBT SKills. Dialectical Behavior Therapy (DBT) helps anyone with mindfulness and distress tolerance. When we are mindful and have managed our distress, we can be calmer. Being calm helps us be rational in our decisions so we can then cope with the wild things the eating disorder will throw at us. Doing our part to preserve our sanity and health helps us remain calm so we can actively preserve relationships. That doesn't mean it is going to be all wine and roses, but we can do our best to show the person in recovery that they are loved. Not an easy task with someone who often thinks they are unlovable and has their thoughts distorted by the eating disorder. 

4. Make a Top 10 List. What’s this you say? When I was learning how to be a more effective parent of someone with an eating disorder, someone gave me one of the best pieces of advice I've ever gotten. She said, You’re in crisis, practice extreme self-care, and make a TOP 10 List of things that fill you up.” This seemed selfish to me at that point, but I get it now. It was hard to fit it in some days with all the work of helping my daughter. 

                            We cannot pour anything out of an empty cup. 
​
So, you out there-yes you, making sure someone else's needs are being met...it's time. Get the nice paper (or any old thing) and make a list of 10 things you love to do, that fill you up. And then...do at least one EVERY DAY. Yes, every day. This will fill your cup up and make you an even better caregiver or “carer” as our friends in the UK say.

It might seem such a small thing to do but it is essential. If you are burned out, you will be of no use to your loved one. They need you, and they need you to be strong. So, do the right thing and go fill yourself up! You are the one who is on the front lines; you're getting the full brunt of the eating disorder's wrath. You need extra defenses.

5. Get support. This may be connecting with others who’ve been through this journey, paying a coach or therapist to guide you or attending a support group. 

6. Learn caregiver skills. An essential piece of self-care. Training on how to be an effective caregiver is available and research is now showing how effective it can be in reducing caregiver anxiety, distress and burden. Check out the research done at Kings College in London by Dr. Janet Treasure. 

​Resources
 Speaking of GRATITUDE...I'm hearing from more Eating Disorders Treatment Professionals that they care about hearing WHAT PARENTS WANT! This is music to my ears! 


The moms of Mothers Against Eating Disorders (MAED) shared their wants and needs. Then, Eating Disorders Advocate Extraordinaire, Cherie Monarch wrote a very helpful paper, What We Wish Eating Disorder Treatment Centers Knew. It includes 25 of the top needs and wants. You can read it and comment on it on the March Against ED blog or on my blog at Eating Disorder Family Support. 

Today our guest blogger is Cherie Monarch who wrote this important paper and included some insights from moms in the private Facebook group MAED-Mothers Against Eating Disorders. Thank you for helping Eating Disorders Treatment Centers to have this valuable information on "What We Wish Eating Disorder Treatment Centers Knew." 

 by Cherie Monarch.


25 Thoughts as to how we can be a cohesive team to support my loved one in their recovery from an eating disorder

An Open Letter to all eating disorder treatment centers and their employees, eating disorder professionals, sufferers, and families of loved ones with an eating disorder …
 
Dear Treatment Center,
I want to thank you in advance for your time, investment, and dedication to help my loved one recover from their eating disorder. Words cannot express how thankful I am for the time and energy you will devote. I know we all share a common goal and dream for my loved one… that goal is RECOVERY.  Please know that I love my child deeply and would go to the ends of the earth to help them find recovery and support them in their recovery. We are attending your program because we want to have hope. You are our HOPE.

As you and I travel this journey together,  I think it’s imperative that we support each other and collaborate. After all, the more we work together as a team, the greater the chance for success - the greater the chance of saving my loved one’s life and setting them free. As you and I learn to work together, I wanted to share some thoughts and ideas to ensure we develop a strong working relationship and provide my child with the best opportunity for recovery.

1. The keyword is COMMUNICATION! COMMUNICATION! COMMUNICATION! If everyone communicates openly, honestly and frequently, ED cannot hide in the dark! That needs to be the cardinal rule. Together, at admission, let’s develop a communication plan including frequency, medium, and how you should be contacted if there is an urgent, life threatening situation or I feel my loved one is at risk of harm. This will help alleviate my concerns and fears.
   
   
2. Let’s empower each other. My goal is not to challenge you or to be adversarial. My goal is to help you understand my child as best as you can and to give you as much information as possible. I have witnessed their battle. Just as you consider yourself an expert on eating disorders, I consider myself an expert on my child. Please respect the fact that I have vital knowledge, and use me as an essential resource and an integral part of the team.
   
   
3. Please include me as part of the equation. If my child is 18 or over and I accept financial responsibility, please require my child to sign an ROI for me with no exclusions or exceptions. I should not be expected to be financially obligated, which often includes emptying my retirement account or savings accounts, obtaining first or second mortgages on my home, selling my home, or working additional jobs, but not be able to be involved in or have any other knowledge of treatment progress, struggles, or decisions. I am more than just a bank. I have willingly made sacrifices so that my loved one can undergo treatment. Just as I am integral to the equation financially, I am also integral to the equation from the standpoint that I am their mother and I will likely be the one supporting them when they discharge from your treatment program. It is important for me to have all the facts so that I can assist my loved one in making knowledgeable, life-sustaining decisions. Oftentimes there are multiple issues or co-morbidities, such as unknown eating disorder behaviors, trauma, suicidal ideation or attempts, alcohol, drugs, etc. Without this knowledge, I may unknowingly allow or support decisions or make comments that jeopardize their recovery or, more importantly, their life. It is important for the family to have the entire picture so we can keep our loved one safe, and support them effectively. 
   
   
4. Teach me that there cannot be a crack in the window. Teach me not to undermine the treatment team in front of my loved one. If I have concerns or questions, encourage me to come directly to the treatment team without giving the appearance that I am aligning with my child, and allowing ED to jump through the gaping hole as a result. If my child has concerns or questions, teach me how to not jump on the merry-go-round. Teach me to tell my child that I hear and understand their concerns and I think they should discuss those with their treatment team.
   
   
5. Please listen to my concerns when I contact you. Please don’t immediately dismiss me as an enmeshed or over controlling mother. Please remember that I know my loved one best. Oftentimes I have knowledge or gut instincts that need to be heard. Mommy intuition. It’s rarely wrong.
   
   
6. Tell me and please recognize that my child's brain is malnourished, even though they have BN, BED or OSFED, and that they are going to distort things. Just as we will hear things about the treatment center that is my loved one’s (ED’s) distorted version of reality, you will likely hear my loved one say disturbing things about me or what happened in our home that are a distortion of the facts. PLEASE take the time to check in with me, the rest of the family, and have separate family sessions to ascertain what the truth is. This is essential to move forward and promote healing for my loved one, for me, and my family. It is also important to recognize that treatment is not open-ended and is expensive. To waste time, months upon months, discussing issues that never happened, is diverting energy and time from the real topics that need to be discussed.
   
   
7. Teach me how not to enable the eating disorder. Teach me the words to say. If my child calls complaining about the treatment center, crying, hysterical, angry, telling me they don't belong there, they're not sick enough, promising the world if I just let them come home… Guide me to tell them that I love them and they are exactly where they need to be. Encourage me to receive outside training or therapy on how to set boundaries and how not to enable the eating disorder. I know I did not cause my child’s eating disorder, but I need to learn how not to contribute to it or enable it. I need solid tools. I need to learn how to show my love for my child, even when maintaining boundaries. Please know that I do not want to enable the eating disorder. I just love my child and want to see them recover. Please give me the knowledge and tools to accomplish this.
   
   
8. Teach me how to tolerate their distress so that I do not jump on the roller coaster with them. Teach me how to endure feeling their pain. Teach me not to rescue them. Encourage me to gain skills to remain emotionally regulated and tolerate their distress. I need you to look me in the eye, connect with me, and say, "You and your husband need training to learn how to set boundaries, remain emotionally regulated, tolerate distress.  GET yourselves into weekly DBT training, preferably with other parents, so you can learn real ways to help your loved one.” So important that my loved one learns how to feel their feelings and their distress, employ coping skills, and then navigate through them without me trying to rescue them and save them from distress.
   
   
9. Please understand the hell that our family has likely endured before my loved one entered your treatment program. My loved one has been diagnosed with and is battling a life-threatening eating disorder. They likely have been battling for months or years before we arrived at your program. It has devastated our family and has shaken our home to its very foundation. Our family may be in ruins or struggling to survive. I have been desperately trying to save their life; setting up outpatient treatment teams, trying to nourish them, trying to get medical practitioners to listen, battling insurance companies, and trying to figure out what treatment option is best. This is a hell that no one can understand until they have lived it – 24 hours a day, 7 days per week. Please recognize that I am exhausted, scared and numb. Please show me compassion and understanding with no judgment. Please know that your treatment program is likely hours from my home. My life is in total upheaval. I am terrified. This is no different than having a child battling cancer. In fact, it’s oftentimes worse. No one is bringing me meals, cleaning my home, sending me cards, or providing respite care. Please hold my hand and help me navigate the day-to-day challenges. I am a critical piece to this equation.
   
   
10. Teach me that my loved one will not be magically cured. That treatment is a journey and will have many twists and turns in the road. That there is NOT a magic cure or pill.  That it cannot be solved or resolved in a few weeks or months of residential treatment and/or PHP. Help me to understand that treatment is not one-size-fits-all. That sometimes we need to change the approach or the environment. Please manage my expectations early. As hard as it is for me to hear, it’s important to know that my loved one will likely not be that one in a million for who this is just a little blip, where they will receive treatment and get right back to their life, like nothing ever happened. Tell me it may take from 2 to 10 years for my loved one to recover from their eating disorder with lapses and relapses along the way. Teach me what relapses and lapses look like so that I recognize them before things are critical. Help me understand that even after weight restoration the journey can be lengthy – that the goal is restoration of physical and mental state. Inform me before they discharge that often times the most difficult part of the journey is when they return home, to the environment where the eating disorder existed. That they will not return home magically cured. Although it pains me to hear this, I need to know this. Please be honest and tell me no matter how much I love my child I cannot save them from ED. No matter what I do, not matter how hard I try, recovery will take as long as it takes. Tell me that every step in this journey is critical and helps get to the end result. Tell me that FULL recovery is possible. I need to be able to hold on to hope while managing my expectations.  
    
    
11. Please update me regularly as to how things are progressing...both good steps and not so good. I need to understand the challenges, whether it is difficulties with treatment, my loved one, insurance, or psychiatric or medical stabilization. I do not want to be surprised and may be able to address some of the challenges before they escalate. Please do NOT only call when it is at crisis level. We would like to avoid a crisis if at all possible.
    
    
12. Please don’t assume that I am enmeshed with my child just because I want to be involved in decisions and their treatment. Whether my loved one is an adolescent or adult, I likely have been fighting to save their life. This was not by choice, but by necessity. I did not choose nor did I want to have to remove my loved one from college, from high school, from activities, from jobs, or from life. Never in my wildest dreams did I ever think I would be feeding or interrupting the behaviors of my teenager or my adult child. Never did I think that I would be faced with making difficult decisions because my loved one was unable to make decisions that promote life. You see, I had dreams for my loved one. I envisioned that they would thrive in high school, go to football games and proms, have multitudes of friends, and be living life to its fullest. I dreamt my loved one would attend college, as an independent adult, full of hopes, and creating their own dreams and goals. Never did I imagine that these would be crippled by a life-threatening illness. We likely are at your center because we have exhausted all other options and made many wrong turns. Some of these turns were most likely directed and encouraged by professionals. I may be “enmeshed” in their current life because I’ve had no other option. I have had to EDucate myself quickly in an attempt to try to save my loved one.  My beautiful child, one that I birthed and nurtured, is being held captive by a terrorist. I’ve had no choice but to fight for their life. Because of this, I am concerned and invested in decisions that are made regarding their treatment. After all, I am the one that will be left picking up the pieces if things crumble. Please let’s work together to give my loved one the best support and best skills possible to navigate this journey. I am here because I have hope and I need your help. Please DO NOT tell my child that I just wish to control them, and I am enmeshed with them. That could not be further from the truth. The only thing that I wish for my child is that they will become an independent adult living their own life. A life full of options and surprises. The only role I wish to play is to stand on the sidelines, cheering them on and watching them flourish.
    
    
13. Teach me how to validate their feelings effectively and how to be vulnerable. I want my loved one to be able to feel and to know that I respect their feelings and that their feelings are valid. At times I may not effectively convey this because I am exhausted, frustrated, and scared. I want them to know that they are allowed to feel what they feel, even if they perceive things differently than I do. Teach me how to support my loved one without undermining my own feelings. Also, help me to understand that it's important to show our vulnerability in front of our loved one, so that they have permission to show theirs. Often times by embracing our own vulnerability we can promote healing for our loved one and for ourselves. Help me learn how to do this effectively.
    
    
14. Teach me that my loved one is going to call about the food. My loved one is going to call pleading that the food is not good, or it's not healthy, that they want to go to a different treatment center that has “healthier” food, that they're being overfed, that their stomach is hurting and distended, that they're constipated. Teach me that all foods are good, that foods do not have moral value. Teach me that nutrition, and sometimes a lot of it, is key to healing. Teach me that the only way forward is through the food. It is important that I am prepared for this call. Teach me the words to say.
    
    
15. Please know that my child did eat cake. No matter what the food – cake, pasta, fats, or ice cream – please know that my child did likely eat them prior to developing an eating disorder. Please have the dietitian speak with the family. The patient is not always truthful with the RD. They may tell you their favorite food is their fear food (many do), to avoid working on their real fear foods. Treatment is costly and limited so it is critical that they utilize this valuable time working on actual issues and feelings surrounding the real fear foods. Please remember that I am a witness and am an asset to recovery. I likely have vital information. Please use me as a resource.
    
    
16. Teach me how to support and empower my loved one through meals and behaviors. When you tell me to offer support when our child eats with us, what does that look like? Role play with me to help me understand what to say or what not to say. What do I do if my child refuses to eat or is using behaviors? Do I sit in silence, paralyzed, or do I encourage? Do I attempt to distract with card games, TV shows, and family banter? It is imperative that this is discussed openly, in advance, with me and my loved one simultaneously. There needs to be a firm plan in place. Even if an adult, the family needs to know HOW to help.
    
    
17. Teach my loved one and my family the physical symptoms and phases of recovery.Recovery typically involves our loved one’s body transforming through some awkward stages as it heals, becomes nutritionally stable, and goes through the vital organ insulation phase. Explain how the belly and midsection will get puffy and round to heal and protect their organs. That this is normal, part of healing, and will redistribute in 6-18 months. Clarify how this typically results in a feeling of discomfort, pain and distress for the sufferer. When we don't know, we assume you are over-feeding them, because that is what the sufferer tells us. Teach us how to support them and encourage them through this phase.
    
    
18. Please teach me that I did not cause their eating disorder, and that they did not choose it. It is an illness. It is not for attention. Whether genetics, biology, negative energy balance, and/or environmental factors are at play, or some combination thereof, it is an illness with many underlying mechanisms, co-morbids, and co-occurrences. It is imperative that I understand that I did NOT cause this. It is also critical for my loved one to understand that they did not choose this, that the eating disorder chose them. Help us understand that it can be the ugly stepsister for anxiety, OCD, and other mental struggles. Help free both of us from the guilt and the pain.
    
    
19. Teach me that self-care is critical. Insist that I receive support for myself and my family outside of the treatment setting. Tell me that self-care is mandatory, even though it is counterintuitive. Explain to me that I cannot help my loved one if I am not breathing myself. Encourage me to obtain my own therapist and find peer support groups to help me learn coping skills and tools to navigate this journey with my loved one. Teach me that this is not a flaw or a sign of weakness, but this empowers me and allows me to put my oxygen mask on.
    
    
20. Advise me and my loved one that they cannot discharge from your program and immediately return to college. That they need time to practice recovery and employ the coping skills and tools that they have learned at your program. Tell me and my loved one NOT to entertain college before they are solidly in recovery and abstaining from ED behaviors for at least six months. Inform us both that even having an air-tight contract with a full treatment team in place at college will not protect them, especially if they are just out of treatment. Without daily supervision, the eating disorder can easily take the reins back. Parents need to know that ED can morph from one form to another. So even if you have a child that has RAN (Restrictive Anorexia Nervosa) and they go off to college, the only really "verifiable" symptom you can measure is weight. However, it is crucial to understand that they can be very disordered and struggling without losing weight. Educate us that bulimia at college is and can be just as DEADLY. That the college environment often does not promote recovery from an eating disorder, but fuels the ED. It is important that we have this information as early as possible so that expectations can be managed.
    
    
21. Teach my loved one that no one can recover from a life-threatening illness alone. This is no different than having open heart surgery and returning home after two weeks in hospital. It is life altering. It is imperative that they have a support system. We understand that at some point it is their choice and battle to fight, but if they have support around them – family, friends, roommate, someone they trust – they have a better chance at recovery. Encourage them to embrace and utilize their support system during and after treatment, just as a heart patient or cancer patient would do. Making a decision to discharge from treatment and live alone, across the country from family and friends, is isolating and can be deadly.
    
    
22. Let's design a roadmap together on what the next step looks like and assemble a support team. Please don't discharge my loved one without a solid plan in place, without an appropriate and educated outpatient team, and without appointments being scheduled. When this happens my child is sent home with little to no local support for the first couple of weeks as they are attempting to get appointments. This is a critical period. A time when they need the most support, not the least. Please let's work together, with my loved one, to have a firm plan in place. We want a recipe for success, not for failure.
    
    
23. Please make sure that I am informed, educated and prepared when my loved one discharges. I need to have a step-by-step plan and marching instructions, especially if my child is an adolescent or young adult. Far too often they are sent home and the parent’s role has not been solidified. I flounder because I see my loved one struggling or starting to decompensate and I'm told either by the outpatient treatment team or my loved one to-step back. I am paralyzed trying to figure out what to do next. Please give me tools. Inform me what meal plan my loved one is supposed to be following or if there is a meal plan. Is the meal plan for maintenance or restoration? Does it reflect that my child may be 12 years old, is still growing, and needs adequate nutrition to continue their development? Did my loved one discharge at goal weight? What is their target weight range? The only way for our family to provide adequate support is if we have knowledge. Continued adequate nutrition is necessary for recovery. Prepare and educate me how to ensure there is no lapse in nutrition.
    
    
24. Teach me how to support my loved one after discharge with a focus on RECOVERY and LIVING LIFE. The bottom line is my loved one will be discharged from your center and I will need to know how to support and encourage them. No one can recover from a life-threatening illness alone. I will need to learn to meet them where they are at and not saddle them with additional burdens and stress by making them adhere to a firm timeline.  Teach me and my child that recovery is THE top priority, that school and jobs can wait.  However, whether my child is an adolescent or an adult, it is imperative, at some point, that they reintegrate into life and start living life. Help me understand that it is not acceptable to sit in isolation trying to escape life. Teach me how to be a warm, nudging dolphin, yet provide firm, loving boundaries and support.
    
    
25. Please teach me how to be an asset in my child’s recovery. Empower me. Don’t worry; I am not looking for control. Please reiterate to the outpatient team that I can be an asset and an integral piece to recovery. Just as if my child had cancer, they will need support reintegrating into the environment that they left. Please do not make me appear like I am the enemy. Please don't encourage the OP treatment team to tell me to step back and not say a word. I am the one that generally has eyes and ears on my loved one. I will likely be the first one to see if they are lapsing, relapsing or decompensating in any way. Instead, guide me on what to say and how. Please ask me and listen to me when I'm sharing my concerns. Very likely my loved one – or rather, their ED – is not being truthful with you. Please allow my concerns to enter into the treatment equation. After all, I am the one left picking up the pieces when they collapse.

The ultimate goal is for my loved one to recover from their eating disorder and live a healthy and happy life. I have to believe that the key to making that happen is to have a cohesive treatment team and to work together to help them find recovery. The key to making this happen is open and honest communication. Let’s develop a solid plan together. I want to work with you, not against you. We are better and stronger TOGETHER!
 
With great hope,
 
Mothers Against Eating Disorders - MAED

With inspiration from Mothers Against Eating Disorders, a Facebook group of 1200+ mothers who have lived this journey.

If you are caring for a loved one with an eating disorder, please join Mothers Against Eating Disorders orFathers Against Eating Disorders on Facebook.  No one should walk this journey alone. If you are an eating disorder professional, please join MAED Professionals where professionals and mothers can learn and grow from one another.  

If you have been affected by an eating disorder or disordered eating and would like further information or help, please Contact Alliance for Eating Disorders Awareness for support at (866) 662.1235 toll free or info@allianceforeatingdisorders.com. 

Yes, it's been a while since I've posted here. I get more comments on my facebook posts, and being human, I respond to positive reinforcement. :) Yep, more comments here will motivate me to write. Feeding a writer is like feeding a dog, they'll love you forever. 

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.

Blessings
~ Luminous Momma

Recently Veritas Collaborative posted an article addressing "What Causes Eating Disorders." And a mom shared that she was frustrated that some are saying that eating disorders are only biological brain illnesses.

My response included:
I'm curious about who is saying to you that eating disorders are ONLY a biological brain based illness. Researchers have been saying for a number of years now that these are " bio-psycho-social" illnesses. It takes all of the components and we still don't understand what influences the genes to be triggered in some and not in others. 

My HUNCH about those who want to say they are purely biological brain based illnesses is that it is a back lash to the YEARS and YEARS of parents being told that if we weren't cold, controlling and dieting, our kids wouldn't develop eating disorders. There are still practitioners out there who firmly believe, "If it weren't for pathological parents, we wouldn't have eating disorders." This is what we've been up against for a long time. So when science showed us that there is a brain based component, some jumped on that wagon and chose to leave out the other components. I get it, I'm sick of parents being blamed/considered part of the problem. Much of the time in my coaching sessions doing eating disorder parent support is spent undoing the harm done by implicating parents as part of the problem. 

As to wondering what caused the ed, it's like an itch that we keep scratching. We really don't need to know the cause. Sometimes we don't know what causes other illnesses either, we must just go on from there. Blaming ourselves or implicating ourselves is not doing our children or anyone else any good. I'm all about accountability and when the time is right (after full nutritional restoration) it may be useful for some families to explore and resolve remaining underlying issues. 

As you can see, I'm rather passionate about this topic. Having been on the receiving end of under-educated treatment professionals who basically communicated, "You've done enough damage, just get out of the way." I get my feathers ruffled about parents taking blame. It doesn't serve anyone. And there are plenty of families in which there was ZERO dysfunction, ZERO dieting, no abuse, no fat shaming, only loving amazing parenting and the child still developed an eating disorder.

This is yet another reason we have our March Against ED coming up in Washington, D.C. October 27th and Eating Disorders Coalition Lobby Day for the #AnnaWestinAct on October 28th, 2015. 

Hi all, when it comes to support for parents of kids with eating disorders you've found the right spot. 

Your situation right now is challenging enough without feeling alone and scared and helpless. 

After sitting in a plain waiting room all alone 15 years ago while my daughter was being diagnosed with an eating disorder I decided that someone has to change the way parents get support when a child has an eating disorder. 

Take a look around the site and see the resources, services and support options. 

One of the many ways I support parents is advocacy and educating health care providers. 

The photo is at the 2014 M.O.M. March of me and a sister of someone who died from an eating disorder. Here is what I'm up to the fall!

• October 15 - St. Louis County Health & Human Services Conference in  Duluth  breakout presenter HOPE: Shift Your Perspective on Supporting Those with Eating Disorders and Their Families http://www.stlouiscountymn.gov/Portals/0/library/government/departments/phhs/hhs-conference/2015-Conference-Broch.pdf

• Oct 27 - Mothers and Others M.O.M. March Planner & Speaker 
• Oct 28 - Eating Disorders Coalition Lobby Day - lobbying our Federal Govt to help get the Anna Westin Act to go to the Presidents Desk. Read Anna Westin's Story in my book, Just Tell Her To Stop: Family Stories of Eating Disorders. It was an honor and privilege to write Anna's story. To see it grow beyond the book into a law that is going to save even more lives reminds us why it is so important to keep Anna's voice alive. 

• Hope Network Mom's Retreat in Naples, FL Nov 12-15.  Only 8 spots left REGISTER NOW! Labor Day Special now till Sept 7th - get the same rate as the 1st 4 Participants!

In the daily horror of eating disorders work, there are so many bright spots that keep all of us going. Often it is the amazing people we encounter and work alongside. People who have been strengthened by fire. I'm so grateful for this wonderful network of generous experts to help with the tough questions.

Today I share with you the wisdom, insight and kind sharing of information from Quinn Nystrom, Diabetes Advocate, Author and Speaker in answer to this question that came to me from a desperate mom trying to help a very sick child: 

Dear Becky,
"My teen has type 1 diabetes, celiac, an eating disorder, bipolar and anxiety. The eating disorder diagnosis was initially bulimia but has since become Diabulimia.  Are there any other families were dealing with this and what has worked for them?"


Quinn's Answer:

"I'm so sorry to hear that your daughter is struggling with several health related issues. As Becky mentioned to you, I have type-1 and struggled from bulimia for years before seeking help and now being in recovery…or as I like to call it "active recovery". 

I want to commend you for seeking resources and information for how you can best support your daughter during this time. I want to first say that you are not alone as a family person who is watching a child go through living with diabetes and an eating disorder. It's so much more common then people believe. It's very sad for me but speaking nationally about diabetes for the last 13 years I'm astonished that diabetes and eating disorders really are not spoken about. I believe this is because people in the diabetes community are plagued by the misconception that if we speak about it, we are giving diabetes patient's ideas. This is beyond a false notion to me! 

The best piece of advice I can give you (and later when I gained enough strength to first speak with my family about it) and then within the last year have started speaking about it publicly, and wrote a little about it in my book about living with type-1 diabetes, is this….
1. Though my family may not know what it's like having an eating disorder….if they don't come at me with judgement or criticism I'll be more receptive to speak about it to them. 
2. People living with diabetes are so familiar with family, friends, peers, media, and medical professionals using words like "good diabetic" or "bad diabetic" and "good food" and "bad food"…the list continues…that so many of us who also struggle with an eating disorder place such high judgement on things assuming that others think that same way as some bad experiences that we've had. The best thing you can do is never associate black and white terms with her diabetes or ED. This goes to blood sugars, A1C's and food choices. 
3. Let her know that you're always there for her when she needs you. She may not be ready to speak at that moment, but knowing that you're open to simply listening to her will mean something to her. Living with two chronic illnesses can be plain exhausting. The balancing of both can lead to burnout. Know that as a parent you can't fix everything…but being a kind, supportive, compassionate listening ear can be very helpful. 

Please let me know if there are any specific questions of yours that I can answer. I write a blog….and have once written on there about living with an eating disorder. There are incredible resources in the diabetes community for your daughter as well as some great eating disorder treatment centers that I've worked with and found great success. If you feel comfortable feel free to give my Facebook info, email, website or whatever to your daughter. I have a real passion for mentoring other young women living with diabetes."

Sincerely,
Quinn
Quinn Nystrom
Diabetes Advocate, Author & Speaker
quinn.nystrom@gmail.com
www.QuinnNystrom.com


Thank you Quinn for being the Hope Network Guest Blogger today!  If anyone else is interested in being a guest blogger, please contact me. 
Becky