Warning…triggers. Only read if you are a caregiver. I am at a loss…so I am venting.

I cannot breath. I am helplessly watching my son slowly dying at the hands of this monster anorexia.  I have discovered that it is up to it’s old tricks and my son is getting weaker and weaker.  I am a coward. I know what I have to do to save his life, but I am so gripped with fear that it seems that I am almost paralyzed by it. God, please give me strength to do what I have to do for my child. I feel like I am checking out and we are never going to be free from this monster until we are all dead.  Why is this a thing? Why would anyone what to starve until they are dead? I don’t understand how or why we got to this point.  He has so many dreams but this mental illness that can only be cured with food is stealing his life and adolescence.  Please my beautiful child just eat the food.  Isn’t that the absurdity of it all, we have a pantry full of food and he will not eat it…not he just throws it in the garbage.

You know what else is absurd, he has no compassion for others that are suffering from mental illness….he just can’t see it in himself.  I don’t recognize him anymore, he used to be kind and funny so interesting to be around. When anorexia is screaming at him he takes it out on me by body shaming me and telling me how much he hates me.  My heart and my spirit are broken and I don’t know how much more abuse I can stand.  I am his only parent and caregiver, his dad died five years ago.  I am unable to afford the best treatment around as if there were many choices for boys.  It is a discriminating disorder, we have to drive to ten-buck-two to find a inpatient treatment or drive two hours to an outpatient program four times a week.  How can I take that much time off without losing my job?  I have to work to pay for the insurance…I feel so helpless.

I just love this child so much, I just want him to be well….please pray for him and I will continue to pray for you too.

The War Against “It” and The Fellowship of Us

How many battles does one have to lose before winning the war?  This is the question I often ask myself.  Margaret Thatcher said, “You may have to fight the battle more than once to win it.” I cannot keep track of the losses we have had against this war with anorexia. Some days I feel like the very life blood is draining from our bodies from another battle with “it” (I refuse to dignify anorexia with an acronym or name). I imagine as if our house is a battlefield and after an exhausting battle with “it” there are lifeless bodies everywhere.   My son is a casualty in these battles, even though he and his mind are being used as the “host” of the enemy.  During these battles I have to remind myself that he is not in control of what is happening, nor are the hurtful words coming out of his mouth. It is so difficult to remember to put my battle armour on, so that “it” cannot destroy my relationship with my son.

“It” (anorexia) reminds me of the “One Ring” as in The Lord of The Rings, the story is that if you are the guardian of the Ring it will begin to control your life until you are destroyed.  I picture “it” looking like Gollum and is trying to twist my son’s mind creating a love/hate relationship with “it” and himself.

I see my son as Frodo Baggins on a journey to free himself and the world from the evil of the “One Ring”.  I guess I am Frodo’s sidekick Samwise Gamgee, who protected and carried Frodo when he was injured.  Samwise did not choose to set-out on the journey, but he went willingly to protect and serve Frodo.  My family make-up the rest of The Fellowship of the Ring, protecting both Frodo and Samwise from the evil that is trying to kill them before Frodo can destroy the Ring.

fellowship-of-the-ring

I suppose it took thousands of pages to tell the story of The Lord of The Rings and so I must accept that it will take thousands to write my son’s story.  I will continue to be my son’s Samwise for as long as this war last and he is victorious over the evil of anorexia.

Do not trouble your hearts overmuch with thoughts of the road ahead. Maybe the paths that you each shall tread are already laid before your feet, even though you do not see them. -Lord of the Rings J.R.R. Tolkien

 

Drowning…

“Every thought is a battle, every breath is a war, and I don’t think I am winning anymore”.  – unknown

I am not feeling very strong today, I feel numb.  I am not sure how to move forward in the war against anorexia.  I am losing my beautiful child and I am becoming as ugly as anorexia.  I feel so angry and I am losing the ability to hold it together.  I cannot hold my tongue when my son is lashing out at me constantly.  My reason tries to remind me that this is not my son, that it is anorexia that is attacking me.  I know that he does not mean the insults and accusations he is hurling at me, but I am human, it cuts deep and hurts like hell.

drowning1

As bad as I am feeling, I know that my son feels worse. I know that he is trapped in his negative thoughts, in the battlefield in his mind.  He cannot find joy in anything or with anyone.  He is lonely and lost in a crowded room.  Anorexia is trying to isolate him, he told me, “I am never going to fall in love or get married, because I don’t want to be touched, it would be too exhausting.”  I feel so sad to think he might never know the intimacy from falling in love and sharing his life with someone.

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I have tried to reach out to support groups for parents of children with eating disorders, but I don’t understand half of the things they talk about.  Everything written in the forums is written in acronyms that take me forever to figure out what the heck they are talking about.  I just wish they would spell it out! This mental illness is hard enough to make sense of and now I have to figure out what CHOP, FBT, EDO,…are.  I feel like an outsider looking into this club of which I belong, but feeling like I don’t because I cannot understand the language. I think I will start my own support group and make it mandatory that everyone who posts must use full sentences and no acronyms!! Afterall, how helpful is a support group if you can’t understand half of what is being said?

if-everyone-could-stop-using-acronyms-ive-never-heard-of-twbg

I am out of steam, so I guess I will leave this right here…maybe tomorrow will be better.

“God has a purpose for your pain, a reason for your struggle, and a reward for your faithfulness.  Trust Him and don’t give up.”  –unknown

“When you are at the end of your rope, tie a knot in it and hold on a little longer!”

I haven’t written in almost a year, I haven’t had the desire or the time to write about the war our family has been fighting.  My son’s recovery has become a very slow crawl, my mom’s dementia is slowing stealing her life, and both of my grown children have returned home due to circumstances beyond their control.  I have to remind myself daily of a verse in Psalm 91:2 that “He is my refuge and my fortress, my God, in whom I trust.” If it weren’t for my faith that my family is not alone and that God is our refuge I would not be able to walk another day in this fight for my son’s life. 

My son’s fight to regain control over his life has become a raging war.  Whether it be OCD with food obsessions (he refuses to use the term anorexic) or a fear of being obese “it” has gained too much ground in his fight.  He has lost the weight he had gained.  He has grown a few inches (thank God) but, with the loss it put him in less than 5% of the population in weight and also in height.  He refuses to see this as a problem…really! And yet, when he has moments of clarity of the situation he expresses the frustration of what his disorders have done to him not only physically but, what it has done to his self-esteem. It is in these moments that I feel that maybe, just maybe “When I am at the end of my rope, if I tie a knot in it, I really can hold on a little longer.”,  until the disorders come marching back guns a blazing and just like that my son’s reason is gone…poof!

His disorders have taken not only my son as a hostage, but our entire family has become collateral damage.  It feels as though there is an emotional terrorist on the loose in our home and there is nowhere to run! I feel like we all have PTSD (post traumatic stress syndrome) from the emotional roller coaster we have been on for the past several years.

My fear is that if he doesn’t start fighting to regain his mental health and make some gains, I will have no choice but to take him to a residential treatment facility across the state.  It is the only program that addresses boys with eating disorders.  It makes me sick to think of leaving my “baby” in a place where I cannot protect him.  It goes against everything about being what a mom means.  As a mom all you want to do is protect your children from everything that could harm them.  Handing him over to a treatment program means I can no longer protect him and it makes me feel as if I have failed him in every way.  I know this is irrational thinking but, it still causes me to feel physically sick at the very thought of him being alone in a strange place and the fear of someone hurting him beyond repair.  I have to keep reminding myself that “…God has not given us a spirit of fear, but of power and of love and of a sound mind.” 2 Timothy 1:7.

My spark of hope is that my son will fully recover and will become a spokesperson for other teenage boys that have no voice and very little resources in what is referred as a “girl’s disorder”.  Romans 8:37, ” Nay, in all these things we are more than conquerors through him that loved us.”

Some facts: Every 62 minutes at least one person dies as a direct result from an eating disorder. About half of anorexia patients have comorbid anxiety disorders, including obsessive-compulsive disorder and social phobia.  Boys might have a higher risk for Avoidant/Restrictive Food Intake Disorder (ARFID)  disorder than girls. 

 

Ugh! Changes are Challenging!!

So…recovery is so much easier when no one makes a sudden move.  Our home is under construction so to speak, not the structure but the occupants.  My older son and his family had been living with us for the last two years.  Their room is empty and all the sounds of a baby squealing, laughing , and crying have now gone silent.  My younger son who has been in recovery from anorexia nervosa (who also suffers from OCD and anxiety disorder) spent his afternoons with his niece and sister-in-law is now left with an emptiness that has been challenging his progress and recovery.  I knew he would have to face the “scary monster of change” eventually, but I was hoping we would be farther along into his recovery.

Sidenote: a little history about us.

The dynamics of a home can be a challenge ours especially, we are far from what most people see as a “normal” family.  My mother and I live together, we became widows in 2013. My mother was diagnosed with dementia last year around the same time my son was becoming anorexic.  My daughter moved back home and soon after my older son plus two moved in as well.  There have been seven of us living in one house, we have my mom 77 yrs, me 53 yrs, my son 27 yrs (dad to baby girl), my daughter-in-law 24 yrs (mom to baby girl), my daughter 23 yrs, my son 13 yrs (the one I blog about) and my granddaughter 15 mos.

The house is changing, we are getting used to yet another “normal” and it seems that will be the state of things as my daughter has expressed that she too will be moving out within the year. Ugh! Changes are challenging and I am struggling with them as much as my son. The house has been crowded, so it would seem that it would be nice to gain some space, but it has been a place of refuge for all of us since my dad and husband passed. We unknowing became reliant on each other, comfortable in our fortress against the world outside and now we have arrived at the place where my older children are ready to make the leap again into the world and make it their own.  As much as I am excited to see them emotionally ready to make a new start in their own homes I am also afraid of how all this change will impact my younger son and his recovery.  When I start feeling over-whelmed I picture OCD, anxiety, and anorexia packing their little bags a leaving too.  Maybe change isn’t so bad after all. I am hopeful that the changes he is dealing with now will prepare him for the challenges he is facing going back to a “brick and mortar” school in the fall.

 

“Bring Out Your Dead!”

Recovery is going well, so well it kind of scares me.  I am afraid when things are working and I am afraid when they are not.  I always believe that everything will work out.  I guess you could call me an optimist who is also a realist, so I will label myself optimist/realist you know like an introvert/extrovert after all everyone has more than one side. My son’s progress has been remarkable, I would say a miracle even.  He is getting stronger everyday and I can see puberty making its way through again.  He had stop growing, but now with the proper nutrition his body is responding and he is thriving.  His smile has returned, he has started telling jokes (something he always did before anorexia) and laughter fills the house again.  He is thinking more clearly and recognizes rational and irrational thoughts now, something he was struggling with when he was weak and frail.

He has a great imagination and last night he told me that “Charlie” (aka anorexia) had to be taken to the hospital and was not expected to survive.  He announced boldly that he signed a “Do Not Resuscitate Order”, that it was time for anorexia to be gone, dead to him, and that the voice of “Charlie” was very weak, almost not audible anymore. I love the idea of having a funeral for anorexia and forget burying it, we are going to cremate it!  Then scatter its ashes to the four winds, it is the only way really, no chance of digging it up again!

The thought of anorexia being dead to us makes me think of a scene in Monty Python’s movie The Holy Grail (I know it’s not a normal thought, but my life is anything but normal).  The scene is where a man is pushing a cart of dead bodies through the streets and beating on a pot while yelling, “Bring out your dead!” and another man brings out an old man on his shoulders who is not quite dead and who is in fact telling the other man that he is not dead and is on the mend, but the man wants to put him on the cart anyway.  Well, he is told he will have to wait until the next Thursday when the cart comes around and the old man is really dead.  The man with the old man on his shoulders asks the man collecting the dead if he could just do him a favor and take the old man anyway? So while no one is looking the man with the cart hits the old man on the head and finishes him off.  The man thanks the man with the cart and off he goes.  I imagine hearing “Bring out your dead!” and my son carrying “Charlie” (anoreixa) out to the cart. While “Charlie” is making a case of not being dead yet the man with the cart wacks him in the head and carries him away!  If only it was that easy to be rid of anorexia.  Life is not like the movies.  My son is the only one who has the power to quiet “Charlie’s” voice, only then will he hear the call to “Bring out your dead!” and will be free from anorexia forever!!

“The perilous highs, and desperate lows, and extravagant flurries of mood are not always symptoms of a broken mind, but signs of a beating heart.” -Terri Cheney

Just Like That!

So….recovery is going well, in fact better then I imagined it could.  I am more hopeful after our weigh-in at the doctors yesterday.  My son has gained weight and is happy about it, he feels better and looks better than he has in months.  The doctor said he was strong and that he believes my son will fully recover.  I pray that he is right, I want him to be right, I need him to be right!

I have asked him what is different, what has change and he said that he was tired of feeling tired and hungry all the time. That he didn’t what to feel that way anymore, ever again so he needed to change and he is changing.  He is changing the way he sees himself and making good choices using food to heal his body and regain his health. I am so proud of him, he is my hero and he inspires me to make good choices too.

 As much as I know that he is making progress, I know that he has a lot of struggles in front of him.  He starts high school next year, it scares me and excites me all at the same time.  I worry that it might be too much stress and he will regress to what feels safe.  I want him to have normal in his life again, to just be a teenager and have fun exploring this new world between childhood and being an adult.  I want him to worry about whether he should ask the pretty girl in fourth block to homecoming and if the zit on his forehead looks like a third eye, not about how many calories are in the pizza and if he eats it he will have to exercise more to undo the damage. I know that he is a fighter and he has dreams he wants to see come true, so I will continue to be his biggest fan and loudest cheerleader in his battle to regain back control over his life and banish “Charlie” aka anorexia  forever!  

actually, I just woke up one day and decided that I didn’t want to feel that way anymore, or ever again, so I changed.  just like that!” -unknown

“Loan Shark”!

Anorexia will take you farther than you wanted to go, Anorexia will stay longer than you intended it to stay, and Anorexia will cost you more than you wanted to pay.  

 My son is in a really good place right now since he started his recovery, but there are moments when he is reminded of what anorexia has cost him. We received his lab results and although we got good news he does not have Celiac Disease on top of anorexia he still has some problems with his liver and white blood counts. 

Sidenote:  The effects on the body from anorexia are horrible! When we went to get his blood work done, we both were feeling optimistic and positive about heading into recovery, but how fast the mood can change when you are reminded of what the cost of anorexia is. He is 13 years old, but he has to have a neonatal needle (special size needle for “preemie” babies) and a technician specially trained to draw blood from “preemies”.  Needless to say he felt defeated and I was reduced to tears.  

He didn’t talk  much after the lab report was delivered . My son is a deep thinker, always analyzing all the data that he takes in. Eventually he comes to me and says, “Mom, can I talk to you?” I reply, “Sure, you can always talk to me. What’s up?”  I catch myself sometimes holding my breath anticipating what he might say. I have learned that sometimes I am not sure if I am ready to hear what my kids have to say.  It’s true! Parents want their children to feel safe, to be open with them (at least they think they do) but it is not always easy.  Parents sometimes forget that their children have their own thoughts and ideas. So yes, sometimes I have to remember to breath and remind myself that, it is okay and I did a good job raising independent thinkers.   

He began expressing to me how angry he was with himself for letting anorexia steal his health from him.  He is a soccer player and anorexia was trying to take his dream of playing professional soccer away from him. I told him that anorexia was like a “loan shark”, you think you need what it has to offer but in truth it is only out to destory you and the payment that anorexia demands is your life.  It hurts to see how much anorexia has taken from him, but I am thankful he is now aware of what the cost of letting anorexia take over his life.  He is a fighter, he is brave, he is strong, he is my hero!  My son inspires me to reach out and grab the stars! I am grateful for the privledge to be his mom.

“……..Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.” Joshua 1:9

Oh, I didn’t hear you.

I think I may write a book one day about a “day in the life of…anorexia…dementia…OCD…” I can go on and on with this. The last 12 years of my life has been like a roller coaster, up and down, round and round, over and over again. I could complain, but I won’t because I am alive and I think life would be boring if it was too easy.  I am not saying I love the challenges that have been a part of my life, but I am grateful that I have learned a lot about myself.  I know that I am stronger and that God has always been with me through all of this craziness.  He has never forsaken my family, I can see His touch in our lives.  

It catches me off guard when someone throws me that look of sympathy with a sigh of, “How are you going through this after all you have been through, when are you going to catch a break?” They look at me as if they can’t believe we are facing another life changing issue. Isn’t everyone going through something difficult? No one is immune to sickness, death, and financial problems; everyone has their own mountains to climb. Right? Ok, don’t answer that! I get through my days thinking that the grass on the other side of my fence CANNOT be greener. 

I am going to get tee shirts made for my family to wear, they will have the message on them; Keep Calm It’s Only Dementia, An Eating Disorder, OCD,…(fill in the blank).  This way we can warn others what kind of day we are having. Shouldn’t every family come with warning labels?  Seriously, this way the general public can step around us without getting caught in one of our crazy moments.  Example, when mom asks me the same question over and over again making my frustration grow (which makes my volume grow louder) and when she finally understands she cheerfully says, “Oh, I didn’t hear you.” I am always left feeling defeated after one of these exchanges, especially when someone is watching.  This is why wearing warning labels on a shirt with the disorder or disease matching the mood for the day is a great idea, just point to it and smile! Enough said.

“Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”  Philippians 4:6-7

 

Pumpkin Pie Therapy…?

Who knew pumpkin pie could be therapeutic?  My son who is dealing with anorexia nervosa has become quite a good baker and pumpkin pie is his signature creation.  I have always enjoyed teaching my children how to prepare food from scratch, baking pumpkin pies and Christmas cookies has been our favorite.  Some of our best memories during the holidays have been in the kitchen baking and decorating the holiday treats.

 Sidenote:  Over the years we have had to learn how to bake gluten-free, yes! we have a basket full of issues in our house and Celiac Disease is just one of them.  I have a daughter who was diagnosed when she was 16, so food is an issue in our home for many reasons.  The doctors are now testing my son for Celiac Disease (like he needs one more reason to focus on food), at least I have mastered how to handle what it brings to our home.  

As you can imagine the holidays can be a difficult time for someone suffering from anorexia.  I can say with all honesty I was not sure we would make it to the other side in one piece.  But we did make it and I am convinced that pumpkin pie was the glue that held my son together giving him the strength to navigate through the endless trays of cookies, cakes, candies, and hors d’oeuvres that were within reach for two weeks of celebrating Christmas and New Year’s.  I am not sure why, nor do I care, for us every victory no matter how small or strange is a victory.  My son was a champion during the holidays and pumpkin pie with whipped cream (without a side of guilt) was his weapon.  I believe my son will recover from anorexia; it will be remembered as a small chapter in his journey towards fulfilling his dreams of becoming a great fùtbol (soccer) player and just maybe a great baker too.