Who's afraid of me?

It's been a hot minute. 

But yesterday, my therapist asked me if I had given any thought to writing for myself again.

You see, I've been feeling very burned out.  There are no words.  Heck, I can't even find words to say what is in my head.  Writing has been so hard.  But in listening to some Taylor Swift this morning, there are some phrases that stuck out to me.

"… The who's who of "Who's that?" is poised for the attack
But my bare hands paved their paths
You don't get to tell me about sad

… If you wanted me dead, you should've just said" ~Who's Afraid of Little Old Me
 

 

It's been a bit like whack a mole around here lately.  One problem pops up, you whack it back down and before you even have a a moment to catch your breath the next one emerges.  From not so unexpected diagnoses to regressions in eating disorder behaviors.  From malnourishment (again) to massive weight gain and growth and then back down.  From sick and dying family members to the death of beloved pets.  

And yet, one thing I've always said about myself is that there is an internal strength that drives me.  I can always go on and do what needs to be done even when I do not know where I am going to find the strength any more.  It's like the imagery of "I Can Do It With a Broken Heart," 

"'Cause I'm a real tough kid, I can handle my shit
They said, "Babe, you gotta fake it 'til you make it" and I did
Lights, camera, bitch smile, even when you wanna die
He said he'd love me all his life
But that life was too short
Breaking down, I hit the floor
All the pieces of me shattered as the crowd was chanting, "More"
I was grinning like I'm winning, I was hitting my marks
'Cause I can do it with a broken heart (one, two, three, four)"

 

Wash, rinse, repeat.

 

Andrew and I have been doing a lot of reading about the power of positivity and gratitude and there is real truth to that.  And I'm trying to be thankful, even if what I am thankful for is that school is back in session so I can finally tame some parts of the house and day.  And not only that, but blessed space and the opportunity to rest from the constant energy of just being around other people, no matter how much I love them. 

 

 

One of my absolute favorite songs right now is "Who's Afraid of Little Old Me."  Partly because it speaks to the events that brought the mama bear beast out.

 

"… Is it a wonder I broke? Let's hear one more joke
Then we could all just laugh until I cry

 

… So I leap from the gallows and I levitate down your street
Crash the party like a record scratch as I scream
"Who's afraid of little old me?"
 

I was tame, I was gentle 'til the circus life made me mean
"Don't you worry, folks, we took out all her teeth"
 

Who's afraid of little old me?
 

Well, you should be"

 

 

Toxic

Toxic - acting as or having the effect of a poison; poisonous.

When you embark on the path to creating a family, your mind is filled with visions of giggles, laughter, food fights, night time snuggles and day time naps.  You know there will be times where things are not rosy.  That is to be expected.

The last thing you expect, though, is to be thrown into a life or death battle with the very devil, who is residing in the very soul of your young child.  The thought never enters your head that you will be kicked, scratched, bit, cut to the bone when it's time to eat.  Or that your even younger children will be there watching.  That even your health, as the caregiver, is affected.

We've been struggling a lot with some very big emotions from the very youngest of us.  Emotions that she doesn't know what to do with.  Emotions that are made even stronger because her whole world changed overnight.  Suddenly, everyone is home all the time.  No parks.  No friends.  No school.  And no reprieve from the very real toxicity that fills a home when your child has an eating disorder.

Eating disorders are toxic.  They are a slow, sneaky poison that sneaks in and slowly sinks its claws into not only your sick child, but every member of your household.

I worry about my very quiet, intelligent boy, who somehow seems entirely unaffected by the chaos around him.  I know he must be, somewhere deep inside, but he doesn't show it.  It comes out sometimes, in innocent phrases.  Like the simple statement how she's "just afraid of getting fat."  Or "just doesn't like to eat."  He knows something is not right.  But he's not talking about it.

Eating disorders are toxic.  They are seeping further and further into my head to where the shear exhaustion of thinking about what to have for dinner puts me in full on avoidance mode.  I am trapped, alone in my head with no way out.

There is this song that has been running through my head for a while now.  It puts into words the things I can't say.  But they are 100% true.

Shawn Mendes - In My Blood
Help me, it's like the walls are caving in
Sometimes I feel like giving up
But I just can't
It isn't in my blood

Sometimes I feel like giving up.  But I can't.  It isn't in my blood.  No, in my blood is a fighting spirit so fierce it takes me by surprise sometimes.  No matter how many times I get back up, one thing never fails.  I get back up.  You can't keep me down.  I got back up from the miscarriages.  I got back up from the NICU.  Twice.  I got back up and got my daughter's tonsils removed despite the brick wall in my face who refused to see outside their own pre-judgment.

Someone help me
I'm crawling in my skin
Sometimes I feel like giving up
But I just can't.

I'm very worried about the future.  I know you shouldn't be.  It's not here yet. An inordinate amount of things could happen between now and then that will entirely shift course to a completely different destination.  I know this from experience.  But how do you stop poison? 


Sometimes I feel like giving up
But I just can't.
It isn't in my blood
It isn't in my blood
It isn't in my blood 

Fight Like Hell

This morning, as I reflected on how my son refused to finish his breakfast because his game was more important than his food so I simply shut down his device until his breakfast was consumed.  And he screamed, and yelled, and told me all about how mean of a mom I was and how I was going to make him lose all progress he had made in his game and how it would be all my fault.  And my only response was to shrug my shoulders and reply how food was more important and if he lost all progress then it was his fault for choosing his game over his food.

And as memes and hashtags rolled through my mind, hashtags such as #cleanyourplate #meanmomandilikeit #eatyourfood #allyourfood #andlickitclean stood out and I had the idea to google some memes to go with it.  What I came across was striking, and made me realize just how much my view of food has changed over these last few years.

Most of them had to do with the perception that if you overeat, you will become fat.  A few even characterized a grandmother spoon feeding an adult even though she was full and couldn't clean her plate.  Cleaning your plate seems to have become akin to becoming obese.  And there is no denying that overeating can lead to obesity, but calories have their place in our diets.  And a very important one for our children.

Another that I came across, showing a rabbit surrounded by carrots with the directive to clean your plate, at first caused me to chuckle.  But then I had another realization.

To my oldest child, every plate of food is as overwhelming as this meme.  Regardless of the food placed on it, to her, that plate is overwhelming.

I don't know that this is true for all ARFID sufferers, as I feel she leans much more heavily towards full avoidance and restriction of all foods, not just certain textures or classes of foods, and her disorder leans more towards anorexia than just simple fear of getting sick.  Which explains why the traditional anorexia therapy has been successful for her, because it's not the type of food that she's afraid of but all food in general.

I see many comments and themes thrown around social media about how you can't force a kid to eat.  That kids will eat as much as they want, and some days more than others.  And that if a kid doesn't eat what is served, don't substitute and serve it again.  That if they are hungry, they will eat it.

But what if they literally are not hungry?  What if that instinctive drive misfired, and their brain told them that they actually are not hungry?  I still struggle with a feeling of judgement over the fact that yes, my children are required to eat every bite they are served.  That they do not get the choice of what, when or how much to eat.  And that yes, you can actually coerce a child into eating by making the alternative to not eating more painful than the eating.  That the fact that these tactics are what I have to use in order to ensure my child lives and grows.  That I have shed many tears as I hugged my child who is screaming at me that I'm killing her, hurting her and why do I want her to die when she is presented with food.  Who has hit, kicked, bit.  That I still avoid social events including food because no one wants to see that ugly.  That I have stood there holding back tears while I swore to myself that as long as I was living, ED will not have my daughter.

Scrolling through my Facebook profile pictures, I came across this one from a few years ago.  It so accurately describes where we are now.

I have had to fight like hell, and fighting like hell has made me who I am.

I didn't want to be strong.  I just wanted to be.  But I will embrace the suck and just as prematurity found out, I will fight like hell and ED has picked the wrong girl to attack.

Remove the stigma

This article that I shared before has been running circles in my head lately.

Even 10 years later, even as she has fought eating disorders and anxiety and has come back to me and thrived. And is no longer in danger of hospitalization and death, I still find her birthday, and the days leading up to it, difficult.

And not difficult like they were in the first few years, where I would randomly cry at nothing and had no idea why I was. Where I was agitated and annoyed at everything and just wanted to climb into a dark hole where no one could find me. Where flashbacks would take over and at times I would find myself unsure of what year I was in and what was really my current reality.

The flashbacks and tears are gone. I can read my blogs from those days where before I couldn't even look at them. I can look back and see the good and face the ugly. But I can't escape the unrelenting anxiety that these days leading up to her birthday bring. And I'm tired of it. I truly am. Even knowing of it, it took me a while to recognize my current physical symptoms and irritation as that ever-present anxiety overtaking my mind, and even knowing that is what it is, am powerless to move myself out of it.

I feel like these words from the author of this article sum up 100% what I am feeling and what life is like after experiencing a more complex trauma - "For someone dealing with complex trauma, the anxiety they feel does not come from some mysterious unknown source or obsessing about what could happen. For many, the anxiety they feel is not rational. General anxiety can often be calmed with grounding techniques and reminders of what is real and true. Mindfulness techniques can help. Even when they feel disconnected, anxious people can often acknowledge they are loved and supported by others.

For those who have experienced trauma, anxiety comes from an automatic physiological response to what has actually, already happened. The brain and body have already lived through “worst case scenario” situations, know what it feels like and are hell-bent on never going back there again. The fight/flight/ freeze response goes into overdrive. It’s like living with a fire alarm that goes off at random intervals 24 hours a day. It is extremely difficult for the rational brain to be convinced “that won’t happen,” because it already knows that it has happened, and it was horrific.

Those living with generalized anxiety often live in fear of the future. Those with complex trauma fear the future because of the past."

Part of the complication comes from the fact that the moment I finally let go of the fear that the other shoe, that I kept waiting to drop, wasn't going to...it actually did. And so fiercely and profoundly that I was again in that place of fighting for my child's LIFE. And I still do fear for her life. I know the complexities of the disorders she is dealing with and the risks to her mental health as she grows. I know some of these habits she is developing now to deal with her anxiety can turn into more harmful ones in the future. Telling myself that those chances are slim to none doesn't help, because honestly, I have been on the receiving end of those "slim to none" chances several times with this child. Again, the inability of the brain of a person who has experienced complex trauma to be convinced that it "won't happen" because it already knows it HAS happened.

I don't put this out there for justification or pity me plea's. I swore from the moment that pregnancy turned from ok to not ok that if I did anything out of this situation, I would work to give others hope that it could be ok - and normalize the very real feelings they had throughout this traumatic process.

This is real. This is life after a trauma. I do not cause this, nor can I control it but I fight it day in and day out. And if there are ever times I disengage, it's not because I'm angry at you or arrogant or any other negative emotion, it is simply because I need to reset and remove myself from the sensory overload that is life. I will reengage. I don't expect people to understand it who haven't lived it. I just hope to make others aware. #removethestigma surrounding mental illness.

The reality of mental illness

This morning, I came upon a comment in a community of ARFID sufferers and carers that got me thinking.

The poster was frustrated with his/her parents inability to just "accept" and "live with" their level of pickiness and indicated the relationship made them even more unwilling and unable to eat.

I know this individual looked at this as a parent unable to accept them for who they were or how they were, but the only thing I could think was - isn't it the parents job to help their child overcome their challenges?  The way the commenter presented the issue was he/she was unwilling to change.  They liked who they were.  They had no desire to change how they were.  They didn't see a problem with who they were.

I get that.  I 100% get that and as a parent I do accept that my child sees food and the world differently.  But I also see how the way she views food will present her with difficulties when she enters the adult world, if she would even make it there if I enabled her to continue in her disordered way of thinking.

Here's the thing.  ARFID is an eating disorder that is a part of a bigger mental health issue.

I strongly feel that if I were to enable her to continue her eating patterns, it would be doing her a disservice.  I would be failing her if I enabled and encouraged her to eat how she wants.  One example that came to mind was that of depression.

I can speak to depression and anxiety from a very authentic place.  I have struggled since a teen with depression and since prematurity entered in, I have added post-traumatic stress disorder and further anxiety and depression.  My post partum depression never left.  Add to that the ARFID diagnosis and trying to care for a child who has absolutely NO DESIRE to eat and will put up any wall she can to avoid the simple act of bringing a fork from her plate to her mouth and I was up the creek without a paddle.

Every morning that alarm would go off and I wanted to cry.  Because now I had to get out of bed.  But I didn't want to get out of bed.  I wanted to stay right where I was, enveloped in the comforting warmth of the disillusion that I could just stay asleep and not have to deal with my day.

Every day, my biggest accomplishment and challenge was simply getting out of bed.

What if I didn't?  What if I chose to stay in bed?  What would happen?  Children would not get fed, I would not get fed.  Bills would not get paid.  Life would simply stop in a very real and eternal way.  But I would be happy and content wasting away in my bubble of unawareness.

Is that any way to live?

No.

The very reality that life would cease to exist if I just "accepted" my mental illness as a part of me and gave into it should be answer enough.

Neither am I saying that I (or she, or this poster) is "less than" for struggling with mental illness.  No, the very opposite.  They should be loved, and encouraged, and guided to find the tools to overcome these challenges.  By pushing one to not accept their status quo, the hand that they've been given, aren't you actually giving them a chance to overcome?

So, yes, I push her.  I push her beyond her boundaries.  I fight her day in and day out.  I am working to give her the tools she needs to eat even when she doesn't feel like it.  Or want to.  Or in an uncomfortable situation.  In the same way that I can't allow myself to stay in my bed, she can't allow herself to say I don't want to eat today.

Staying in bed is not an option.  Not eating is not an option.

The reality is that mental illness is hard.  It's debilitating.  It's confusing.  It's not a straight line from a to z.  It's painful.

But recovery is possible.  A full life without the restriction of our mental illness is possible.

If you can just fight for it.

It's not about control, y'all!

Seriously.  I can't tell you how many times I have heard this.  It's a power struggle.  Stop fighting her and she'll stop fighting back.  It's about control.

I swear if I had a quarter....

It's not about freaking control.  But it is also something I have struggled to understand.  Especially how to explain it to others not living it.

You see, when your child has an eating disorder, particularly a restrictive one, something happens in their brain.  It's an anxiolytic response.

E is so overwhelmed and terrified of her world.  A world she does not understand.  A world that is scary.  We sat together last night while she cried because she was afraid to grow up.  Afraid of a time that her father and I wouldn't be here, because she needs us so much.  She was afraid of the standardized testing they are about to do in school.  She was afraid of letting go of the past, because she was afraid she would forget those that were special to her in the past and their memories.  Her stomach and brain were churning with so much fear and she became afraid that she was going to get sick.

It's a horrible vicious cycle.

Restricting her food (or, as she said to me last night, not eating so she will stop growing) has become like an addiction to her.  She has realized that when she doesn't eat, she feels better.  She is not afraid.  Restricting the amount and type of food she eats has become an addiction to her.  It has become her way of dealing with the anxiety that consumes her.

Think about it this way.  An alcoholic uses alcohol to deal with difficult things.  It soothes them in the chaos of their life.  But, from the outside, we understand how the alcoholism is actually destroying their life and their health.  It causes them to act and do things that they may not otherwise do if they were not in the grips of the need for that drink.  

To E, restricting is alcohol.  It has become what soothes her when she is afraid.  Is there a control element?  Sure.  But it's a false one.  One she has told herself and that her brain has convinced her is the only way she can control this world she is in.

But from the outside, from our point of view, we can see the damage this way of thinking causes.  The malnutrition, the aggressive behavior, the anxious movements of her hands.  But to her, she sees that she is doing her best to stop herself from growing up and our requirement that she eat is something to be fought.

She does not comprehend that this restriction will ultimately kill her.

She.Does.Not.Understand.

A very wise friend of mine said it this way.  "Thoughts control behaviors. She cannot control her thoughts. They are what are disordered. Her behavior comes out of the thoughts, not the other way around." 

When you see it as a control thing, you are seeing the behavior.  But the behavior is not the origin of the problem.

No.  This is not about control.  This is not about the parent/child power struggle.  Or the child/authoritative figure power struggle.

This is about fear.  Fear of living a life without her drug.  Fear of living life without her restriction.

Don't Stop, Can't Stop, Won't Stop

Lately, I've been unable to sit still.  I can't stop moving.  I'm cleaning, or painting, or organizing.  We are mostly done with one big project (replacing the doors in the house) and I can't stop planning for the next (landscaping and cleaning the backyard and remodeling a bathroom.) 

I laughingly joked to myself the other day if there was an "addiction anoynomous" for home updating.  Because I just can't stop.

Then at a recent annual well-check for myself, and they give you that ridiculous self-assessment form with a million different questions that ask the same thing but in different ways, one question stuck out to me.  It was on a form to assess your anxiety levels and it asked if you feel the need to be in constant motion.

Well.  Yes.

I mean, I knew the reason I kept moving was to keep myself from stopping and thinking because if I did the weight of it might crush me.  But I never associated it with anxiety.  It makes complete sense, in hindsight.  The question is, what do you do about it?

A friend posted this image this morning and it completely resonated with me.  They need to add the constantly moving, ha!  But do you see anxiety in your life?  What are you doing about it?

Sometimes self care isn't self care

Self-care seems to be all the rage these days.  Every where you turn, moms are being encouraged to "get away" and "do something for themselves."  Even the Today show did an entire piece on how women are focusing so much on others to their own physical detriment.

While this sentiment is very true and valid, they miss one very important piece.  What is the definition of self-care?

(disclaimer: this is not my image, but from Pexels)


Dictionary.com defines self-care as "the practice of taking action to preserve or improve one's own health." And "the practice of taking an active role in protecting one's own well-being and happiness, in particular during periods of stress."

But that definition is fairly non-descript.  Is it nails?  Or massages?  Or vacations?

Or is it simply sunshine, fresh air, early morning coffee and organizing your kitchen cabinets?

I have found throughout this last year that self-care for me is two fold.  Redecorating my house (sorry Andrew) and reorganizing/cleaning/decluttering.

And maybe it's more than just decluttering the physical space.  It's definitely self-preservation, because quite honestly, it keeps my mind focused on anything and everything than what I am going through.  It keeps the thoughts out of my head that so easily crop up when I have a free moment.

So yeah, I'm avoiding actually exploring those deeper recesses of my mind, but honestly that needs to be dealt with when I am no longer in the midst of a battle that takes every ounce of mental and physical energy I do have.

Maybe it's ok

"Maybe it's ok if I'm not ok
'Cause the One who holds the world is holding onto me
Maybe it's all right if I'm not all right
'Cause the One who holds the stars is holding my whole life."  ~We are Messengers

Mental health has a stigma surrounding it.  I don't know why but it seems no one ever wants to truly say how they feel.  Conversations never go more than skin deep when someone asks you how it's going.  How many times have you been asked that question just to respond with "it's going ok" or "things are great!"  And how many times has that actually been what you wanted to say.

I'm guilty of this, and not so much because I'm afraid of the stigma of mental health.  Heck, I'm not afraid to blast it on Facebook.  PTSD, anxiety, depression are rampant in my life and in my mind.  I've actually been discriminated against because I fully admit to PTSD following E's NICU stay, because I want the world to know that yes, the NICU can be THAT traumatic and PTSD is more common after a NICU stay than most would believe or know.  And I do so hoping that other NICU moms read it and realize that a) they have it too and b) it's normal after what they've been through.

But I think for myself, I don't say what I really feel because I don't want anyone to feel like I'm just a Debbie Downer.  I don't want to bring anyone else down just because I'm struggling.

And yes, I'm struggling, and not in a bad way.  Who wouldn't if you woke up every morning preparing yourself for battle and a battle that you don't know when it will end?  Would you be ok if you had to watch your kid with every meal display anxiety?  Picking her nails, her skin, playing with her food making you think she's eating it, going for her drink.  Anything other than putting the food on her plate in her mouth.  When every meal takes an hour, sometimes more, even breakfast.  A simple bowl of cereal can become a line in the sand.

I think part of why I am struggling is because my personality is one of transparency.  I need to share, to get these words out of my head, in an effort to reduce the power they hold on me.  The more I keep them in the more the bounce and echo and swirl with dizzying power.  But I've been afraid, yes afraid, to share her story in this journey.

But what if I wasn't afraid?  What if she wasn't afraid?  What if everyone shared and the stigma disappeared?  Yes, she has an eating disorder but it's not something to hide and only share in whispered back room conversations like she has the plague.  Yes, we avoid any activities that include food because I'm not having that battle in a room full of people.  Not because I'm embarrassed by her, but I am, in many ways, afraid of how others will see her in the midst of the lack of knowledge surrounding eating disorders and mental health in general.

The song Maybe It's Ok has been bouncing around in my head for a few days now, especially the "maybe it's ok to not be ok."

Remove the stigma.  Because sometimes it really is ok to not be ok.

Which would you prefer? Tarantulas or scorpions?

Yesterday, I stared into the abyss of my well stocked pantry, and I hit the "wall."  The wall that comes out of nowhere, that you stand it the base flat on your ass and wonder how you got there.  The wall that is so tall that it seemingly has no end.  And all you have is a teaspoon that you mindlessly and frantically use to scoop out any and all dirt from the base in the vain hope that if you can't get over it, at least you can go under it.  But the foundation is deep and you are so so tired.

Meal planning or any effort at all to put food on the table has become so disheartening and stressful, I don't even want to eat anymore.  But I do, spoonful by spoonful, because of who is watching.  Because if I require her to, how can I not?  Putting food in front of her can go one of two ways.  She grudgingly eats it like a robot programmed to pick up a spoon and shovel things from her plate to her mouth. Or it can go like today, where you'd swear that you must have put a plate of writhing cockroaches in front of her by the sheer veracity of the reaction.

And in some ways, maybe I did.  I've had it described to me that asking her to choose between two different meal options is like asking her to choose between eating tarantulas and scorpions.  I spent at least 20 minutes being screamed at because I had the audacity to put food in front of her and expect her to eat it.

Just keep digging.  Spoonful by spoonful.

Stop saying God is Good

Stop.  Just stop.  It's like "everything happens for a reason." 

I'm not saying God isn't good.  But how can you reconcile a "good" God with one who allows a child to die. 

I like this description I read on the blog "Still Standing."

"You got the job! (God is good!)
You closed on the house! (God is good!)
That car barely missed you at the intersection! (God is good!)
You’re carrying twins! (God is good!)

See where I am going with this? Because the reality is that if you believe God is good, then He’s good all the time.

Like when you lose the job. Or the house is foreclosed. Or your car is totaled. Or the twins die.
And while I believe that to be true, because I believe the nature of God is unchanging…would you ever in a million years tell someone who just lost their baby to cancer: “Isn’t God sooooo good, though? Wow, didn’t He do it right?”"

I recently heard someone say how we find our calling in life is by the #&*! we go through.  The bad, horrible, painful stuff.

And while I don't disagree with the premise, because all the calling's I have found are directly as a result of the trauma's I've experienced.

But it floats around in your brain the same way "everything happens for a reason."

There is no reason that could ever be "good" enough to justify the loss of a child.  Or a spouse.  Or an illness of a family.  Or war.  Or crime.  Sure, good can come from a horrible thing but that does not JUSTIFY the bad.

When people share their pain with you, they aren't looking for comfort in the sense of "this too shall pass" or "good will come of this."  They just want a hug.  And validation.  That their pain is justified.  That they have a friend who will walk with them through this season.

And yes, good can come from it.  But maybe that's something they need to discover for themselves on the other side of the season.

Jesus Christ Superstar and Eating disorders

When looking to find the time of the Jesus Christ Superstar performance, I stumbled on something that stuck with me.  It was an article in People magazine sharing how John Legend started juicing in the past few days before the performance.   In it, John's wife shares how "John's eating really healthy now.  He has a shirtless scene he's really excited about, but he's actually starting to fast, like juice fast, starting today."

Eating healthy and juice fast?

As I sat and played with my beautiful daughter this afternoon and she was playing some sort of "animal adoption" game with her multitudes of stuffed animals, she set aside one with the comment of "this one is too fat to be adopted."  Moments later she repeats the scene.  When I interrupt her to ask her why she thinks the heavier animals won't be adopted, she just shrugged and said that her sister was saying that.

I was perplexed.  Diet has never really been a "thing" in our household.  Unless you count the diabetes diet, which thanks to gestational diabetes x2 was a thing.  But never the fad diets.

And it struck me tonight.  It is pervasive in our lives anymore, these messages of you are too heavy.  You need a diet.  Here's the perfect diet for you.  Things like the People article and the inference that a performer felt they needed to go on a crash diet to "look good for a shirtless scene" just leaves you in dismay.  Especially when you are working with a child with an eating disorder.

Even though her disorder is not linked with a body image issue but rather anxiety, her frequent statements like that sets off so many warning bells in my head.  How am I supposed to teach this child that beauty lies within when society is teaching that it lies on the surface?

I am reminded in this of the song by Zach Williams, Fear is a Liar.

"Fear, he is a liar
He will take your breath
Stop you in your steps
Fear he is a liar
He will rob your rest
Steal your happiness
Cast your fear in the fire
'Cause fear he is a liar"

 

Fear.  He is a liar.  Those voices, they are a liar.  You are beautiful as you are.  In your skin.

 

 

Believe it.  Own it.  Don't starve yourself so you feel that you "look" the part.

Food is medicine. And life stops until you eat.

There is nothing more frustrating than watching your child and begging her to eat.  As parents, there are many things we can't control - but one thing you never expect to lose the ability to do is to encourage your child to eat.  Food is life.  It's what gives you energy.  Fuels your body and mind.  It is essential to your survival.

Today was her first day back in school after break and a new lunch requirement.  She had been able to sneak around the office staff due to their multiple tasks they had to accomplish.  She had been caught a few times throwing her lunches away.  So she had to eat in the classroom, one on one with a teacher.

And again, she tried to hide her chicken and chips in her trash.

Now - this is not unusual I'm told for kids with eating disorders.  She is not a bad kid.  Anything but.  She is smart, sweet, unique.  But to her, food has become the enemy.  Food leaves her with such anxiety that she thinks she is preserving her life by not eating it.  And she will do anything to get out of eating.

And it is apparently painful.  This process of getting her to eat.  More than just emotionally painful, but physically.  I had my own panic attack this morning and if this is how she lives each and every day.  I didn't want to eat most of the day.  But I did.  I knew it was vital.  More so now that she is watching.

Food is medicine.  And life stops until you eat.  In more ways than just sitting at the table.  And more than for just her.

Food is medicine.  And life stops.  And I just want to scream at her to just eat!  Just eat and this will all be over.  Just eat and you can go back to being a kid.  And the joyful, imaginative play.  Just eat.  I can't live without you.  And I will not let you starve yourself to death.

Back in the alphabet soup of life

"Life is like a box of chocolates.  You never know what you're gonna get."  ~Forrest Gump

When you first arrive in the NICU (or any hospital experience, really), you are immediately thrown into an alphabet soup that is very difficult to decipher.  A's and B's, IVH's with varying degrees.  C-PAP, NG, O2.  CC's and ML's.  Numbers and letters that make your head spin.

Beyond the NICU, you are innundated with adjusted vs. actual age.  Developmental delays.  Quarantine.  Therapies of every kind from speech to feeding to physical.

By age 3, you think you are coasting.  You graduate from most therapies (if you are lucky) and your kid's age is just their age.   You are in the clear.

But are you really?  Are you really ever in the clear?  Even if your child is term.  This isn't even a pre-term thing, although there is a link between this disorder and prematurity.

Avoidance/Restrictive Food Intake Disorder (ARFID) and Generalized Anxiety Disorder (GAD)

We've noticed since starting kindergarten that lunches were not being finished.  Some came home with almost all of the food that was sent.  She would tell us she didn't have time to finish it all.  Or that she didn't like it, even though she was regularly given a choice as to what she would like.

By First Grade, and her ADHD diagnosis, we felt she was probably too distracted by her friends to eat.

By Second Grade, more and more lunches were sent home essentially untouched, and she started refusing dinner as well.  We'd make what she requested and then refused to eat it.  When we pushed, she said she was afraid of getting fat.  Which, for a 45 lb 8 year old, is hard to imagine.  On her follow up for the initial trial of ADHD medication, she had lost 1.5 lbs.  And she has consistently fallen off her curve.  First, we thought she's just putting on height.  Then the next year she still grew...but started dropping percentages.  This year, she did not put on much weight or height.  With her several statements (and they really were very few...but they were alarming hearing this from an 8 year old) our pediatrician sent us to the Eating Disorder Clinic.

So, what is ARFID?  

According to the Center for Eating Disorders at Sheppard Pratt, ARFID is defined as: "Individuals who meet the criteria for ARFID have developed some type of problem with eating (or for very young children, a problem with feeding). As a result of the eating problem, the person isn’t able to take in adequate calories or nutrition through their diet. There are many types of eating problems that might warrant an ARFID diagnosis  – difficulty digesting certain foods, avoiding certain colors or textures of food, eating only very small portions, having no appetite, or being afraid to eat after a frightening episode of choking or vomiting."

In our case, things really spiraled downward after she got the stomach flu back in February of 2017.  She spent months regularly crying she was afraid she was going to throw up.  Every night she would panic if she didn't have a bucket by her bed because she was so scared she was going to vomit.  This lasted for 6 months or so before we finally were able to sneak the bucket out of her room and she stopped asking for it.  In December of 2017, she had a minor version of the stomach bug, immediately prior to being assessed by the clinic.  During that assessment, she showed signs of malnourishment and although it wasn't severe, we started Family Based Therapy (FBT.)  FBT works with families to develop strategies and skills to increase a child's ability to eat enough to maintain nutrition and growth.

Come February of this year, she came down with a bad tummy bug and spent hours vomiting even water.   And she started skipping multiple meals and snacks a day and lost over 3 lbs.  And hospitalization to get her weight restored was a serious possibility.  She refuses almost everything, even old standby favorites and it really is a battle to get her to eat even a few bites of her food.   She's thrown food away and lied and told teachers and us she's eaten it.

Her body has difficulty recovering from any sort of illness.  She just doesn't have enough resources available to maintain nutrition and healing. 

Enough of chocolates with different kinds of filling.  I'm throwing the box out, I've had enough curve balls.

Things you need to know:
1.  We did NOT cause this.  This is biological and has a variety of triggers that causes it to come to the surface.  We expect our children to eat a variety of food and well balanced meals and diets.  We gave them choice in what they ate.  Each school lunch is packed with input from them.  We ate at the table, together as a family.  We did everything we could to ensure proper nutrition.  But we ultimately can not hold her down and force the food down her throat.  This will be a long process which seems like it will require that we insist she eats what WE put in front of her.  No negotiation.  No ifs, ands and butts.  No choice.  Our job is to put healthy meals in front of her.  Her job is to EAT them.  So if you eat with us, know this.  She might scream, fight, cry but for the love of everything do NOT for one second suggest that she ate "enough" and to just let her go.  Or bribe her with ice cream or give her attention.  We are not torturing her (although she may act like we are.)  Chances are you won't see this behavior as she puts on a good front in public.

2.  This will be a lifelong battle.  We are working with her team to help her develop the resources to manage this as she grows as the fear to eat will always be there.

3.  This CAN kill her.  If she can't manage her fear of vomiting (part of the GAD) then she will starve herself to death.

So here we are again.  In another club no one wants to join.  This is the 3rd club we've been thrown into.  Infertility, prematurity, and now eating disorders.

It's hard to be hopeful at this point.  We are only a few months into this very long journey.  There is no light at the end of the tunnel right now.  We are staring into the black abyss wondering if we will emerge from this intact.  We always seem to overcome, but right now we are tired.  And preparing ourselves for the war.

Because war it is.  And a warrior is what she is.

We shall overcome

It's been a rough day for me, and it seems like at times like these are when I need to sit down and write again.  I wish I felt the call to write in good times as well anymore, but I guess those times come out in my photography.  It's times like this where it seems like the creative outlet of my photography does not cease the voices in my head and I turn here to give voice to them and release them from my mind.

I started this blog with the purpose of keeping family members up to date with my life.  It was easier to just get things out in the moment than remember them for Christmas letters.  Which I never seem to write.

Little did I know what it would turn out to be.  A chronicle of the lives of 3 amazing children, but really one super hero.

Yesterday was her 8 year check up.  Yesterday was the day she had the awakening that she wasn't like other children.  That she was different.

Yesterday, I sat with my child and held her while she cried.  And asked me why God made her this way.  And if this would ever go away.

She asked me if we were disappointed in her that she struggled to keep her attention where it should be.  She worried that her grandparents would be mad at her.

She talked of things far beyond her 8 years.  And, of course, I bawled with her.  My heart in pieces on the floor.  And the conversation has been at the front of my mind all day.

There is no manual for parenthood.  No book to read to tell you how to deal with these types of conversations.

But I told her, and I told myself of all the things she has overcome.  That I know she can do this too.

I told her of how she was born breathing.  Well before her lungs should have even been developed enough to do so.  Of how she had to learn to eat, and that she showed that she was ready to try well before her gestational age said she should have been.

That she came home before her due date.  Well before her due date.  And how amazing that was.

I told her of how fast she has brought herself up to grade level this year.  Of how smart she was and how proud I was of her hard work.

When you bring a child into this world, you never hope or wish for them to experience challenges.  You want them to have everything that you didn't.  I just hope that I can teach her to love herself for who she is.  Even with all of the challenges she experiences.  That the girl that she is - is so special and unique and someone to be treasured.  And that this won't keep her down.  She has shown her fighting spirit many times over the years, and I know she can do it again.