Closure

Closure. If you're like me, when you read that word, what immediately jumps to mind is the phrase 'closure is a myth'. But upon further rumination, I have to disagree. I think if we look instead at what the word is really intended to mean, we will find that we are simply misinterpreting the concept of 'closure'.

According to society, closure is supposed to be an end. It's supposed to be the light at the end of the tunnel that is grief, suffering, or trauma. All too often, people struggling through difficult times find themselves frustrated when that 'end' comes, and we don't suddenly feel better. But closure is not erasure, not forgetting, not 'coming around' to see things differently. Closure changes, not erases, the pain that preceded it. We don't like, we don't forget, we only begrudgingly accept our pain - but somewhere along the line, it gets a little less cumbersome to carry around with us. That's what closure really is - a slow, gradual process of learning to live with things we'd rather not.

Our society seems to think that closure comes from some action, either on the part of the sufferer or by some legal, moral or ethical system. Once we put the bad guys behind bars, the victims will have closure. Once we find out what happened to the missing person, their family will have closure. Once we lay our loved ones to rest, we can find closure. That notion, that performing some human action somehow triggers this magical peace called "closure" to fall upon us, is one of the most damaging approaches to the grief process.

Loss doesn't end when 'answers' are found. Pain doesn't stop hurting when justice is done. Grief isn't over when the funeral service is. In fact, these are often the most difficult times for sufferers and mourners. When everything is sorted out, put away, packed into neat little boxes, when everyone else goes back to their lives, and a hurting person must try to go back to their life, the way it was before tragedy struck... that's the hardest part of grief.

You go to work or school the next day. Everyone is talking and laughing and there are posters for upcoming activities or achievements, you are expected to go back to being productive, to getting things done, as if the trauma you experienced didn't just happen... that's when you want to scream. Everybody seems to think you'll be 'okay' now, and you're just not.

Several years ago I lost my best friend Angie to bone cancer. She fought it for over five years, lost a leg, a lung, her hair over and over, and then God called her home. The whole time, Angie had this attitude, this way about her that just made all of us forget, just for a moment, the monster in the room (the dreaded C word) - and just have fun being together. Angie was the best person I've ever known. The day before she died, I sat by her bed and held her hand and promised her that we would be okay, that it would take time but we would get there.

The day she passed, hospice came and cleared out all the medical equipment. The funeral home came and took her after a couple hours. The pastor from the church came and talked to us. We all started planning services and tributes and all the arrangements that come with losing someone you love. We set to work for days, put together a visitation and a funeral service, came together to remember our lost loved one... we cried, we laughed, we experienced it together, and if you weren't okay - well, that was okay too.

Then the funeral service was over. We had dinner together and then everyone went home. The next day was a weekday and I had to work. My coworkers were sympathetic, but no one could have stopped that first day back from being one of the hardest things I ever had to do. I remember getting up in the morning, getting dressed, thinking I was okay... driving to work, logging onto my computer, greeting my coworkers, and then... I was just walking back to my office from the bathroom when it hit me out of nowhere. My best friend was gone and I was never going to see her again.

I almost fainted in the hallway. I still remember the dizzying way the tiles on the floor seemed to spin as I tried to catch my breath, a crippling panic attack overtaking me. I remember rushing back to the relative privacy of the bathroom before slumping to the floor and sobbing. I remember looking at myself in the mirror, willing myself to 'get it together', but the panic wouldn't abate. Eventually I knew I had to come out of the bathroom, but as soon as I walked into the office I shared with the rest of the injury prevention team, I ran into my boss and I couldn't hide the sheer torment on my face. She asked me if I was okay and I broke. Ugly sobbing in the middle of my office. She gave me the rest of the day off. I think that day was the worst day of my grief - trying to go back to normal, to all the people who, for some reason, didn't seem to have noticed that the world had stopped spinning. I just wanted to scream at them, "Don't you realize that everything is WRONG now??" But my grief was not theirs.

The following day I tried the 'go to work' thing again, and this time I did a little better. I had panic attacks all day, but I managed to contain them. Worse, I worked with a population of at-risk kids for four hours each day at that time, and they didn't even know anything had gone awry in my life. They didn't need any more troubles. Still, I wanted to scream all day, at all the people who couldn't see that the planet had just shifted off its axis, but I didn't. I did cry the second I got into my car to go home. I did call my mom at lunch and wonder aloud if it would ever get better.

After that every day got a little better. Not a lot. I had to be on medication for the crippling panic attacks I was experiencing regularly. Visions of those last days still haunted me every time I closed my eyes. I was somehow unable to remember over 8 years of happy times but blinded by a few days of tragedy. People told me that would start to change... with time. And I wanted to rage against this 'time' thing, this thing that was the only cure for the misery I was in, but that which eluded me. I won't lie. That was a dark time in my life. Little things would remind me of my friend, and still stuck in the grips of mourning, all I could think about were the worst of times. I don't even know how long it took before the good memories started to outweigh the bad, but I know it felt like far too long, and in the eyes of nearly everyone else, it was 'over' and I was supposed to be 'okay' now.

All I wanted to do was scream that I was not okay. That the funeral, the visitation, the things we'd done in memory of my best friend, had not given me this elusive 'closure' thing that was supposed to mark the end. At that time in my life, I did firmly believe that closure was a myth - but I, and the rest of society, simply failed to understand what closure actually meant. It wasn't something that came from a funeral service or from finally having answers, it wasn't a switch that flipped... it was this slow, gradual ascent from the depths of grief until finally, one day, you looked around and realized that you didn't look back and cry so often anymore - that you could finally look back and smile.

Today I feel closure. That doesn't mean I forget Angie, or that I miss her any less, but now the good memories outnumber the bad. Now I see her everywhere - the rainbow on a day when I just can't seem to dry my tears... the whisper in God's ear that she promised to make - to look after my dear borrowed kids... the sight of one of her favorite things in my daily life. And I thank God for having the priviledge to know her.

My Scarlet Letter

Most people are familiar with Nathaniel Hawthorne's The Scarlet Letter. A great deal of people have studied how Hitler's Germany branded Jews and other "undesirable races" with a patch or armband. The concept of 'marking' people who were considered undesirable is nothing new, in fact, most people think it's a quite antiquated concept. But it's not. It's alive and well in America, in YOUR city, today.

I wear a scarlet letter. Actually it's more of a purple smock type garment with three arm holes that neither fits nor flatters anyone. But it's my scarlet letter. Upon admission to the hospital, patients with psychiatric issues are not given the standard blue and green gown that ties in back and shows most of your backside if you're not careful. Patients with psychiatric issues are given The Purple Smock. It's bright purple. I mean, you can't miss it. It's one-size only, it hangs off just about anyone's shoulders, and it's nearly impossible to keep everything covered while wearing it. It's just a really rather unpleasant thing to have to wear.

But what's worse is that it brands you. Right now I'm in a mixed ward - patients with physical issues, but some of whom also have psychological issues. Because of the 'episode' I described in my previous post, I have been relegated to the group with psychological issues and branded with The Purple Smock.

When you're wearing The Purple Smock, people stare. Some people, family members or other patients don't really know what it means, but many do, and all the medical personnel do. Just like with Hawthorne's Scarlet Letter, it immediately tells anyone who sees you that you are different - and not a good different. You are defective. You have done something or said something that earned you that detestable garment, You are the book, and you are very much being judged by your cover.

So, knowing upon sight that you are 'crazy' or 'SI' as they like to refer to us, people treat you differently. Again, you'd like to think that hospital employees are a little more professional than that, but they're not. They're human like everybody else and they know what The Purple Smock means. Suddenly every word out of your mouth is called into question, every action scrutinized. You have to try to decode if people are really taking you seriously, or if they're just nodding and smiling, all the while knowing you're crazy, and applying the stigma that is so often attached to that. This is hard enough for most people to do, but people with psychological illness struggle enough to decipher what is going on in most social situations. Psychological illness SUCKS. I'll flat out say it, it SUCKS. Being labeled and stigmatized, on top of psychological illness? That's just like kicking a person when they're down - and if you think it doesn't affect the treatment they receive, you are deluding yourselves. The Scarlet Letter, still exists - it's just a purple smock now... and I don't know about you, but I'm ready to take it off.

#SHATTER STIGMA

Episode

Yesterday, I had an episode. That’s what I call them, but I guess it doesn’t give you very much information on what I’m actually referring to. As most, if not all of you know, I have Borderline Personality Disorder. After participation in an outpatient treatment program a couple years ago, I am managing my illness much better and the good days certainly outnumber the bad, but every once in a while, one of those days pops up that just seems determined to break you. On those days, I’m not proud to say that I still don’t cope well. Those are the days I have ‘episodes’.

An episode means suicidal. It means I’ve lost control of myself, my environment and whatever situation I’m in has gotten past all my defenses and taken over control of my body, my mind, everything. In a way, I cease to be ‘me’. Friends and family have told me they don’t recognize the person they see during one of my episodes. I want to try to explain why. I’m going to use an incident that happened yesterday to illustrate, by making this post my open letter of apology to everyone my behavior affected.

To whom it may concern:

Before anything else I would like to apologize for my behavior yesterday. I would like to explain to you exactly what I personally perceived which generated such an extreme response, but in no way do I intend these explanations to serve as excuses for the way I acted. I understand that each person’s actions are their own to claim, regardless of state of mind.

Something most of you probably know is that I suffer from Borderline Personality Disorder. A big part of this disorder for me is that I am very sensitive to social interactions. I often perceive people as being hostile toward me when they are not, or suspect people are lying to me when no one else seems to think so. Those are just a couple of examples. Often,  a family member or trusted friend helps me interpret the world around me so that these misperceptions do not interfere with my ability to function to too great a degree. Other times, however, when no one is there who knows and understands how the disorder manifests in me particularly, I tend to base irrational actions on those flawed thoughts.

This is essentially what happened yesterday. Yes, the initial reason I was upset was because I couldn’t understand why small changes to my care couldn’t be made. I should have been able to realize that (a) I didn’t get to make the rules and (b) the rules weren’t intended to do ill toward me, but because I do not perceive things normally, I couldn’t see those things – all I saw was judgment. I felt that by refusing to consider those changes to my care, the staff was judging me, labeling me in some way and, as I’m very sensitive to judgment, I did what of course is the hallmark of BPD – I *way* overreacted.

Today, with some perspective, I can see that it’s unlikely that the staff was actually thinking that way when I suspected it, but that my own actions lent credence to the theory I so strenuously objected to. It was that sense of being judged or not listened to, rather than the actual approval or denial of my request, that caused me to lose control and act out the way I did. Sometimes this is hard for me to explain to people who don’t have the disorder because from the outside it looks so much like it’s just a temper tantrum because I didn’t get what I wanted, but there is much more going on underneath. The situation escalated as I felt like more and more people were judging me, dismissing me, not understanding me, etc. Eventually I get to a point where this is so dominant in my mind that I start thinking my whole life will be full of judgment and that’s not a life worth living – thus the suicidal ideation and sometimes action. 

From the outside I can see how it looks like, when, after not getting what I want, I simply throw a tantrum over it, but on the inside, it’s no longer about whatever the original argument was anymore (which is why the original argument is often so trivial and people wonder why I react so strongly). What is happening is that I am losing control of whatever little part of me is restraining the other, bigger part shouting at me that people are judging me and that my life will always be that way and therefore I should just kill myself.

When I calm down, usually after some sort of pharmaceutical intervention as that’s all we’ve found to work thus far, that lying part of my brain recedes and I’m left wondering who that person was that acted so out of control, so irrationally. So not like me. At that point I recognize that my actions were destructive, that my perception was seriously mistaken at the time, and that I am ashamed of the way I acted. I usually see the other side of the initial ‘argument’ as well – and wonder why I couldn’t have just accepted it instead of freaking out. But then I guess that’s the disease. Later I’m sorry. Like today, I’m sorry. I’m sorry for the way I acted, I’m sorry for anyone I hurt either physically or emotionally, I’m sorry for the resources I forced others to expend trying to keep me safe from myself. If I had it to go back and do again, there’s no doubt in my mind that things would have played out much differently.

In any case, this is a somewhat simple explanation of one of the aspects of my disorder, but the one that is most relevant at the moment. I hope that in reading this and seeing my apology you can forgive me – and whatever loony-tunes bug got into my head – for the way I acted. I really am trying every day – and will continue to try – to moderate the symptoms of this disorder to allow me to live a more normal and hopefully much less dramatic life.

Thank you for your time in reading this. I know it is not an excuse, and I don’t intend it as one – I need to learn how to interpret the world around me accurately on my own, and that is something I will work on. My hope is that explaining my behavior from my perspective will help us all understand each other a little better. I know we can make strides in this area!

Regards,

Kate

The Year That Almost Didn't Happen

So I haven't done a whole lot of blogging this year. I write when the words come to me, and this year they've been elusive but for a few exceptions. This, however, came to me as soon as the chill of impending winter set in.

Usually, if I sit down to write a ‘year in review’ post, I (a) wait until the ENTIRE year is over, and (b) take for granted all the silly and superficial ups and downs of daily life. Usually, my heart aches for the pieces that were torn away three and a half years ago. This year, my heart is full. This year I’ve been blessed beyond my wildest dreams and yet, it almost didn’t happen. 2015 nearly ended for my family before it even began.

The day we came home to the carbon monoxide detector going off, none of us had ever experienced that sort of situation before, and everything seemed fine, so it would have been all too easy to just brush off the warning – take the batteries out of the detector to stop the annoying alerts and go about life as normal. We almost went to sleep that Sunday night no different from any other... except, if we had done that, we’d have never woken up. We’d all have died from an invisible intruder we should have known was lying in wait.

Instead, that night, we carted three people and five cats to a local hotel, literally minutes from our home, but that night it was a safe haven. I remember sitting in the living room waiting for a friend to bring cat carriers, wondering how much gas I was breathing in just sitting there. I remember reaching into the depths of my bank account to pay for the hotel room that was saving our lives. And most of all, I remember the seriousness and the fear on my family’s faces the following day when they  solemnly told me that none of us would have survived if I hadn’t insisted on going to the hotel that night.

Unfortunately this set off a whole cascade of unfortunate events and I couldn’t possibly count the tears I cried in those first couple days. Then – a miracle. Though every call I made to inquire about heating assistance was fruitless, help came to us in our time of need. Through the unimaginable kindness of what most people would consider near-strangers, people with whom I just happened to share a common interest, the malfunctioning appliance was quickly replaced. Because of another stranger who helped fill my car with firewood, we were kept warm through the week we waited to have the repairs done. People I'd never met before cared for my family as though it were their own, and I will never forget that kindness.

In fact, that’s why 2015 happened.

That’s why the first hug I got from A in three years happened.

It’s why AJ, my sweet (borrowed) little 6 year old with autism, crawled up into my lap and told me I was his best friend.

It’s why I fostered and found homes for four more litters of kittens (Prose and Haiku are HOME for the holidays – adopted together last week!)

It’s why I got to celebrate a Sweet Sixteen with M - who was THREE when I met her!

It’s why I got to help make Christmas magic for a friend who was also struggling.

It’s why I got to go on my first date (yes, at 25 years old, and no, he wasn’t the one, but I enjoyed the rite of passage!)

It’s why I got to take my best friend to Washington DC for her 30^th birthday, fulfilling a lifelong wish for both of us.

It’s why I got to bake Christmas cookies with my friend’s little girl last week.

It’s why every minute of these 365 days happened.

The kindness of near-strangers; that's why those things happened.

And it's why the next 365 days will happen.

Why I will train at the Dojo once again, recapturing the self-confidence karate gave me years ago.

Why we will be there to celebrate a 17^th, 13^th, and 7^th birthday.

Why we will foster several more litters of kittens on their way to forever homes.

Why we will all be here to continue paying it forward.

The ugly, evil parts of the world are all-too-visible and can easily trick us into thinking that the entire world, and everyone in it, are cruel and unforgiving. I, however, have proof that this is not the case. An outpouring of human kindness is the reason I'm here, and this time of year, I can recall all too clearly how things could have been different, so once again, I owe my thanks to people who were there for us last winter. Yes - there are still good ones out there - and to them, I say: Thank you... for 2015.

Terminology

Thinking back quite a few years to when I was in middle school, I remember that I had something of a reputation. Not the one for being a social outcast, weird lunches, uncool clothes or being teacher’s pet, but one I created on my own. I was the “word police” – and there was one word that was the greatest offense. One that teenagers say every single day.

“Retard”.

It’s said to someone who has just done something foolish, someone you don’t like who just can’t do anything right, someone who gets in your way in the hall. The adjective form, “Retarded” is even more commonly used – to describe something that the speaker feels is stupid. In nearly every sentence, “retard” or “retarded” can be replaced with “stupid” and the sentence will still make sense. But what the word actually means is ‘to slow down’ or ‘having been slowed down’. Try inserting “slowed down” into some of those sentences. “This homework assignment is so slowed down!” No one would know what you were talking about, they’d probably look at you like you were... slowed down.

I lost a family member to Down Syndrome before I was even born. Back in the 1960’s when my uncle was born, children like him who just happened to have one extra chromosome were, at best, referred to as ‘mentally retarded’. This was, then, the kindest of the terms. To see the others we need only to look to places and people who have not yet shifted their vocabulary. In one Eastern European country, the floor of the orphanage where all the children with Down Syndrome lie in cribs, the label outside the door read “Malformations”. Ouch. There’s not even an ounce of humanity in that one. Others commonly used across the world, and indeed in the history of the United States, include “mongolian idiot,” “mongoloid” or just “idiot”; “imbecile,” “lunatic” and so many more. Most of them had faded or lost their association with individuals with special needs by the time I was in middle school, but such was not the case for “Retard”. So I made it my crusade.

Now there are campaigns by the number. “Stop the word to end the word”. People first language. Others have taken up the cause, and hopefully are reducing the use of this antiquated term which should not be considered synonymous with ‘stupid’. I personally have started choosing random physical afflictions and using them in place of the “R” word, as an illustration to the listener of how ridiculous it is to use a diagnosis as a put-down. My favorite is “Diabetic”. It usually earns me a double take after which I explain my philosophy.

Today, though, I realized that far more of the terminology we use is inherently prejudicial against people with mental and physical disabilities. In recent years, the DSM-IV, the manual used to diagnose psychological conditions, has been under revision to the recently released DSM-V. In the revision process there was much discussion of what ‘official’ titles to apply to various afflictions. When the first DSM came out, homosexuality was listed as a psychological disorder. In those years “imbecile” was a medical term. As we’ve added to our knowledge, we’ve changed our terminology. But the DSM-V still has what is, to me, a glaring and insulting error.

Mental illness is diagnosed along 4 axes. Axis 1 disorders can be cured, they are usually temporary or intermittent and though disruptive to the life of the individual, are often responsive to treatment. Axis 2 disorders, which tend to be lifelong, deeply built into a person and while therapy and medication can lessen their effects, neither can cure them. The DSM-V, like the DSM-IV before it, terms these conditions “Personality disorders”. This is the terminology with which I take issue. In a world where we are trying to decrease the stigma of mental illness, how can we still use this term?

You might wonder what’s so wrong with it, especially if you’re lucky enough to have escaped Axis 2.Well think about this. Someone falls in love, and when asked what they find so endearing about this person, the other might describe their sparkling personality, good qualities, attitudes, all those non-physical attributes which we use to define people are their “personality”. She has a lovely personality, he has one of those personalities that makes everyone feel at ease, if appearance is the essence of a person’s physical being, personality is the essence of their mental being. Can you imagine telling someone they had an appearance disorder?

I don’t know how we can expect to fight stigma when even the professionally developed material used to diagnose and treat us tells us that there is something wrong, something flawed about our very personality. It tells a group of people who are already prone to self-judgment that their personalities, the fundamental essence of who they are, is wrong, ‘disordered’.

Sometimes I imagine two people meeting on the street. One looks normal but carries an axis 2 diagnosis. The other walks with a limp. One feels physically broken. One feels mentally broken. One carries a diagnosis of a bone or joint disorder. The bone or the joint is broken, not functioning as it should. The other carries a diagnosis of a personality disorder. Logically then we must assume that her personality is broken, not functioning as it should. Her personality, the very essence of who she is, is wrong.

How does this message help the world understand her? How does it help her understand herself?

In other countries, so-called “personality disorders” carry various other names. If you’re reading this, by now I expect you know that I have a diagnosis of Borderline Personality Disorder. Elsewhere it is known as “Emotionally Unstable Personality Disorder” (so, you know, basically the same), or sometimes “Emotional Intensity Disorder”. I like that last one best. I can admit that above all, the disproportionate intensity of my emotions to the events in my life is what lies at the root of most of my distress. Further, the latter term removes the word “personality” from the equation completely (which, interestingly enough, has not been the major sticking point on how the disorder should be named). In doing this it removes the connotation “who you are” is not what is disordered. The subject is changed. It is your emotions that are disordered, because they are extremely intense. I can’t speak for the entire BPD community, but I personally can certainly admit that my emotions are often disordered due to their disproportionate intensity.

I don’t know what spurred me to write this today. I’m not feeling persecuted, I know that I am not a label and that I am not my illness. I guess I’ve just been thinking about the wider world, people who are newer to this game than I am, who might be hurt by an inaccurate or insensitive term. Maybe with time the terminology will change. Yesterday’s “malformations” are today’s children with special needs. Maybe – just maybe, in 60 years, today’s “personality disordered” will be called something else, something less stigmatizing, thus helping us erase the stigma from all aspects of our lives and all corners of the world. This is just my attempt at giving the process a little ‘jump start’.

My Job

The first time I remember somebody asking me what I wanted to 'be' when I grew up, I was at my grandparents' house. I was scribbling away in a composition book that I was determined to turn into a chapter book (with pictures of course) when my grandma asked, and I told her I wanted to be a children's book illustrator. Yeah, my family got a big kick out of that one. Only I would pick such a specific, somewhat obscure career choice at six years old.

I went through a few more stages. Military, lawyer, military lawyer (what? I really loved JAG!), teacher, run my own daycare, own my own baby supply store, and ultimately I even went to college and got a degree in public health, as I liked to put it, "because I want to get paid to play with car seats when I grow up."

In the meanwhile I worked a few different jobs. I worked in daycare - taught preschoolers. I worked for the health department, the only job I ever had that actually fell into my field of study in college. I was a home health aide for a while, and then a nanny. When I quit that last job (which was more stress than it was worth), I remember thinking that I had no idea what I wanted to do next. At that point the only thing I wanted to be was a mom, and that's not exactly the sort of thing you find in the 'help wanted' section. I procrastinated on choosing something, which in the end actually worked out to my benefit.

During and after my time as a nanny, I was going through several evaluations to determine the extent of my psychological needs. I'd been diagnosed with depression since I was 14, but more extensive issues were quickly coming to light. I spent around a month in an intensive outpatient therapy program learning to deal with new diagnoses and coping skills. I'm being completely honest when I say that it's literally the best thing I ever did for myself. But at the same time, suddenly I was able to see how my mental health (or lack thereof, as the case may be) had affected every job I had ever had. I wasn't bad at any of them. I wasn't negligent. But I could have been better.

In those weeks of introspection, I realized that I had been expecting far too much of myself. The thought had never crossed my mind - all I was trying to do was work, hold down a job, which is what everybody does, right? Not too much to expect from myself, especially given my academic record. You grow up, you get a job. It's what you do. It wasn't until my CBT (Cognitive Behavioral Therapy) program that I figured out - all this time I'd been looking for a job, working for a few months and then moving on, I'd already had a job all along, and I hadn't been doing it.

When someone is diagnosed with a serious disease, everyone is quick to assure them that right now, getting better is their job, it's the most important thing. An athlete who suffers a devastating injury goes to physical therapy every day, and that's his job. Nobody would expect a patient of cancer, heart disease, kidney failure, to spend 40 hours a week (or more) wrangling toddlers or filling out needs assessments. It's absurd to think about... imagine your coworker, whoever is in the next cubicle or whatever the case may be, coming into work dragging an IV pole behind him. We'd all say, "Take some time off, take FMLA, you need to focus on getting better right now, that's your job."

So why, then, was I expecting that of myself? How could I, who knew what it was to struggle with mental illness, expect myself and others going through similar trials to just drag our treatment right along with us to work 40 hours a week? How could I expect others like me to work full time jobs while fighting mental illness every single minute of it? I couldn't - I couldn't expect that of others, so I couldn't expect that of myself - and looking back, I saw all the signs that I had been taking on more than I could handle, trying to work a traditional job while I was dealing with so many health issues (be they mental or physical). That was when I had to accept that I was, at least for now, disabled - and as such, my job was to get better.

I took it seriously. I still do. But from the outside I bet it looks like a whole lot of nothing, so today I want to share about my job. It started out similar to most jobs - with someplace to be at 9 am every morning - only the place I had to be was a CBT program, and the work I had to do was on myself. For close to a month I attended that program the way I would have attended school or work, but when it ended, I had to remind myself that I was still doing the job, even though I was now 'working from home'.

There were so many days when I felt useless and broken. There still are. There are days when I realize it's 4:00 pm and I'm still in my pajamas and haven't left the house. There are days when I see family members hard at work sometimes well over 40 hours a week and wonder, what the heck am I doing? I call it "a case of the 'should's". "I should have a normal job." "I should be making money." "I should be doing something with my degree." "I should work as much as my family members." Those are the times I have to remind myself that even though it may not look like it, I'm working as hard as anyone else.

I'm doing my job. I'm getting better - or at least getting through the days. It's hard to explain to anyone who hasn't experienced it themselves (and I wouldn't wish it on anyone), but the amount of work I can do without even getting out of bed is astronomical. Mental illness bombards its victims with constant negativity and distorted thoughts. We wake up thinking "Why even bother getting out of bed?", or "No one cares about me anyways," or "I can't handle life, I should just go back to sleep". We lie there for endless moments searching our consciousness for some shred of evidence to the contrary, something to throw back at those automatic, destructive beliefs. We wake up from terrifying dreams that are all too real and spend hours trying to convince ourselves that we are safe, that this time, it was just a dream. Some days we succeed. Some days we don't.

Every day, that war between such deeply held negative core beliefs, and the healthy ones we are trying to convince ourselves of, rages out of control. Whether I'm lying in bed, volunteering, walking the neighborhood, or cleaning the house, the battle rages, and it drains the energy right out of me no matter what else I'm doing. Some days the bombs are falling so fast that the only thing I can do is take shelter until it's over. Those days, nothing else gets done, but I've still worked all day - just, instead of working on a project or a presentation, I've been working to survive. At the end of the day, if I'm still alive and kicking, I've done my job.

Some days are a little easier. Some days, our minds are prepared for the enemy's onslaught, and we get up, get out of bed, get dressed, maybe even leave the house. Some days we're fighting so hard and with such determination that by the end of the day, we wonder why we can't just accomplish this much every day. And those days are nice, they're a breath of fresh air - but it's easy to fall into the trap of blaming ourselves that not every day is quite so simple. It's easy to wonder, why, if yesterday I cleaned the whole house, washed my car, went to the grocery store and worked a volunteer shift - why am I exhausted before I even get out of bed today? It's because no matter what my body is doing, my mind is fighting that very same war. It's because not every battle can be easily won.

So this is my message for those of you out there who are dealing with mental illness: KEEP FIGHTING THAT WAR! And be kind to yourself. Wherever you are, whatever you're doing, you are doing far more 'work' than even you realize, in every minute - and it's just as important as the work anyone else is doing. Let's stop beating ourselves up for 'not being good enough' and start thinking of ourselves like mental health warriors - slashing through dark jungles the likes of which most people can't even imagine.

And for those of you who have a loved one affected by mental illness, my message to you is this: What you're seeing, what you're observing, is only a tiny fraction of what we're going through. While we might look lazy or unmotivated to you, that battle is raging every minute. Be kind with us, be gentle with us, because after a hard day's work, the one thing we want the most is the love and support of the people around us. To know that whatever we're working through, however the battle may have played out each day, we are not fighting it alone.

Defective

It's been no secret over the past year that I've been in intensive therapy for mental health issues, even that I have a diagnosed personality disorder. Less often, I've shared with a few people that even an objective, official assessment of my functioning concluded that I am not currently capable of working or carrying any other great responsibility on my own. What I haven't shared so much, is how this whole thing makes me feel.

When I sat down in a Cognitive Behavioral Therapy (CBT) session a year ago, I was asked to identify the thoughts I had about myself, the core beliefs I held about who I was. I selected a few things.

"I'm a failure."

"I'm broken."

"I'm incompetent."

"I don't matter."

"I'm defective."

As I read through a list of common negative core beliefs, this one stood out to me the most. It's exactly how I'd been feeling - like somehow, between that day and the day God designed me, something had happened that had broken me, knocked a piece or two off, made me less than everybody else. Like I simply wasn't capable of the things most people are capable of, and that was my fault and it meant I would never contribute to the world in any significant way. I was broken. Send back to the factory, toss in the scrap heap, this one's no good.

Sometimes I still think that. 

But it was a few weeks into my intensive therapy program when I hit this startling realization, which is what I use to remind myself to this day, that everyone is flawed in some way and it does not decrease our worth, our contributions to the world. 

I'd heard "defective" used to describe human beings before, somewhere else.

Remember Katie?

Or how about Brett?

Or Marla?

All of these precious children were declared "defective" by doctors in their home countries, and as such sent to live in orphanages. Any child who was not adopted before their 16th birthday was transferred to a mental institution for the rest of their life. When Katie's mama went on that first trip to meet her daughter, the ward room that little girl was in was labeled "malformations".

Did I ever think of them that way? Malformations? Defective? 

Of course not, not for a second.

(And by the way, Katie has grown by leaps and bounds since she was adopted over 3 years ago)

NOT defective.

Down Syndrome. HIV. Cerebral Palsy. Osteogenesis Imperfecta. Limb differences. Arthrogryposis. Autism. Hydrocephalus. 

When they're present at birth, we call these diagnoses "birth defects". 

Like, because that child is different, she is somehow broken, less than. It's this idea that I've spent the last few years of my life fighting, tooth and nail, on behalf of kids like Katie, and Brett, and Marla.

The are not defective.

Even closer to home there are examples. Most, if not all of you should be familiar with the story of my mom's little brother, my Uncle Tony, who was born with Down Syndrome.

Also NOT defective.

The doctors said he would never walk or talk, he belonged in an institution, he couldn't learn, he was defective. My grandma and grandpa though, they looked at him and they only saw their son, who they loved no matter what the diagnosis, who they KNEW was not "defective". In the 1960's, this was a relatively uncommon attitude, and its always been one of the things I admired about my grandparents.

Then there's my best friend, Angie.

Try and call my best friend defective and I'll break your face.

She babysat AJ for me that day. From her wheelchair. Wearing her prosthetic leg. 

AJ was NOT an 'easy' baby. Anyone who took good, loving care of this little boy (with a set of lungs like you wouldn't believe!) could not possibly be defective.

Further, she was my best friend. And she had cancer. And it took her leg, and then her lung, and then her life. More and more cancer cells popping up with every scan, all over. 

Cancer means that cells grow in your body that are not supposed to be there and that cause you harm. Isn't this the very definition of a defect - a problem that is not supposed to be there? Well, maybe in the individual cells, but in the person? In my best friend? No, cancer did NOT make her "defective".

As I sat through weeks of CBT sessions this thought lingered in the corners of my mind. How could I call myself "defective" when I wouldn't call any of these human beings - souls that God made by His own hand and in His image, by that term? Was there a core difference, that because my problems were psychological instead of physical or developmental, I could be defective and they could not? Even I know that doesn't make sense. To further muddy the waters, what about those children with conditions that could be classified as psychological? Self injurious behavior, attachment disorders, even autism skirts the line between developmental and psychological - but none of those kids are "defective". For that matter, what about the person sitting next to me there, at CBT? Of course I would never describe them that way.

So what made me different?

Why was I allowed to be defective when I balked against the notion that any other human being be described as such?

C, my individual counselor in the program, told me that this was an issue of a lack of self compassion. A double standard wherein you hold yourself to a higher ideal, even an impossible ideal, that you would never dream of holding anyone else to. There was no difference, there is no difference. Physical, developmental, psychological, cognitive,whatever - PEOPLE ARE NOT DEFECTIVE.

I work with car seats a lot, helping parents keep their kids safe. Sometimes they're recalled because they are defective and may not keep a child safe. I put a CD in my disc player and for some reason, all it does is spin, no music. Either the CD or the player is broken, defective. But people? No.

People are not defective. People cannot be defective because each and every one of us was created by a loving God in His own image, and He does not make mistakes.

Struggles. People can have struggles. People can have problems, wounds, imperfections, but people ARE NOT problems, wounds, imperfections.... defects. People are people. There's no one way a person should be, no factory stamped seal of approval that declares a person "normal" or "right" - and if those things remain undefined, it is impossible to define "defective".

I'm not sure who I'm writing this post for. Maybe you. Maybe the world. Maybe me. Probably me. Because I still have to remind myself sometimes - okay, all the time - that I can't label myself as defective when I would not apply that word to any other human being. Knowing this doesn't make the emotions, the feelings of inadequacy go away - but it does give me a chance to question my thoughts, because I thought I was defective, but I just proved that wrong. Maybe I'm okay after all. Maybe I just have different kinds of struggles, maybe I'm striving toward a different kind of normal - just like all the other beautiful souls I mentioned. And that's okay, because isn't everybody striving toward their own normal, their own best?

It reminds me of a quote. "If you judge a fish by its ability to climb a tree, it will spend its whole life thinking it is stupid." (The attribution for this quote is disputed.) Everyone has their own unique abilities, their own personal goals, and NOT ONE OF US is defective.

A Short Story

The mother of two young children wakes up on a Saturday morning, and for one blissful moment, hovers in that state between asleep and awake where she's only partially aware of her surroundings.  Then in an instant it all comes rushing back... everything that happened yesterday, the painful treatment she had to go through at the hospital, crying because things felt so hopeless, not being able to do the things she wanted to with her children... and she feels crushed all over again.

She drags herself out of bed because she knows she has to care for her children, who will be waking up any minute (in fact, it's a shock that they're not already up!).  No sooner than she steps into the bathroom to take her shower, she hears the crying coming from her one year old little boy's nursery.  Followed by a loud yell of "MOMMY, THE BABY'S CRYING!" from her four year old daughter.  She sighs and retrieves her son from the crib, snuggles him, changes his diaper, and then, already exhausted, goes to the bathroom with both kids standing there vying for her attention.  She just wants to get back into bed... she feels so terrible this morning... not that it's different from most mornings.

Knowing she has to at least feed them some sort of breakfast, she pops in some microwave oatmeal, cools it off, and serves it to the kids.  She doesn't bother with making anything for herself... nothing agrees with her stomach lately.  Shower forgotten, after breakfast, the four year old (who is a little princess) is the only one who gets dressed.  She bounds downstairs with more energy than a small Midwestern town and chipperly asks "Mama, can we go to the park today?  It's pretty outside."

Guilt washes over the mother, knowing that there is no way she can take her daughter to the park on this admittedly beautiful day.  Just the thought of getting the kids and herself ready, loading them into the car, keeping an eye on them at the playground, loading them back up, and coming home, exhausts her.  Heart breaking because she can't give her daughter the kind of childhood she wants her to have, she says "Not today, sweetie, Mommy doesn't feel good."  The little girl nods - she knows what this means by now.

All day, the children's mother fights against feelings of panic, depression, exhaustion, and complete apathy.  She forces herself to do the things necessary for the health and well-being of her children, but it completely takes the wind out of her.  She wishes, over and over, that she had someone to help her with all this.  Her whole body hurts by now.  She just wants to collapse into her bed, or onto the couch, or even the floor at this point.  She hasn't eaten all day, yet she feels like she's going to throw up.  As she's fighting these overwhelming feelings, the guilt is overwhelming.  Her children deserve a whole mother, one who can do all the things she wants to do with them.  She hates that they have to understand, at such a young age, what it means when mommy doesn't feel good.  If she had a magic wand, she'd fix it all... not for her, but for her kids.

After a whole day of hearing other moms and dads outside playing with their children, reading parenting magazines about exciting springtime activities, the mother is feeling incredibly defeated.  If only she could do all these things for her children, who she loves a hundred fold more than herself.  If only she were healthy.  As she tucks them into bed, skipping baths because it's just too much today and asking them to choose a short book so she can get to bed herself, the thought occurs to her that this is what tomorrow will be like too.  Monday her children will go to a sitter while she is at the hospital... and then when they all finally get home, she will be too exhausted to really enjoy them.  Tuesday, the same pattern will happen again.  And over, and over, and over, for what seems like forever.  Sometimes she thinks she's never going to get better, that her children are going to grow up with only half a mother, that she is going to miss the golden moments of their youth.  She cries to herself as she falls asleep, praying for healing.

Having read all that, what are you thinking?  Keep in mind that this is a true story, a thousand times over.

The mom is obviously sick, but she's doing her best.  She probably needs some help at home.  What is she sick with?  Is it cancer?  Is chemotherapy why she's so exhausted?  Is it degenerative?  Will she die too young?  What horrific disease has stolen even the joy of playing with her children?

What if I told you that she is physically perfectly healthy?  That all her screenings have come up negative?  She doesn't have cancer.  She doesn't have heart disease or kidney failure or an aneurysm.  She has Borderline Personality Disorder.  Or Major Depressive Disorder.  Or Panic Disorder.  Or Bipolar Disorder.   It doesn't even matter which one, those are in a completely separate category for most people.  They are *mentally* ill... not physically ill.

I bet the first time you read this story, you felt sad for this young mom and wished you could help her.  Now go back, knowing what I've just told you, and see if you feel the same way.  Are you still sad for her?  Do you still want to help?  Or do you blame her?  Do you think she shouldn't have those beautiful children since she can't take care of them the way healthy person could?

I think most of us would like to say that it doesn't make a difference to us where the illness lies... but it does, because I've seen it.  Cancer is never anyone's fault.  A person with MS isn't expected to just 'push through it'.  Those of you who know me know that I help with car seat checks because motor vehicle accidents are a top cause of death in the United States and proper restraint can prevent that.  Public health dollars are allocated to these things en masse.

We find out someone we know has been stricken with a terrible disease, or hurt in an accident, and all the sudden a meal train is going on, people (some of whom you don't even know) are bringing you dinner every night, offering to clean your house, watch the kids for free, refer you to specialists that they know, offer a shoulder to cry on.  We find out that same person has a mental illness and we pull away.  Friends stop coming around so much.  They don't invite you to social events.  They tell you it's 'too hard' to be your shoulder to cry on.  There's no meal train.  No sympathy cards.  No flowers.  No concerned coworkers coming by your cubicle on the rare day you make it into work just to ask how you are.  Why?

In the 21st century, with everything we know about how the brain works, why would we treat it any different than any other diagnosis?  And because we do, how many people go without the treatment they need because they're terrified of the judgment that might come with a diagnosis?  For most physical ailments, failing to treat them *will* eventually be fatal.  Why would we expect any different of mental illness?  Just because it's a different part of the body?  Because there aren't quite so many awareness walks and ribbon months?  Because people you know don't just come out and say "I have a mental illness" they way they might say "I have diabetes"?  There have even been cases where social workers, knowing that the mother is mentally ill rather than physically ill, read the above story (in real life) as neglect and take the children away.  Would YOU seek treatment, knowing that in doing so you may lose the only parts of your life that still occasionally bring a smile to your face?

This has to stop.  It has to.  Because - and no, I'm not being overdramatic here because I have SEEN THIS HAPPEN - our inability to accept mental illness as something that occurs naturally, requires treatment, but does not change the person we know and love, IS KILLING PEOPLE BY THE THOUSANDS.  Look at the suicide rates in America over the past few years.
In 2010, suicide was ruled the cause of 38,634 deaths (up from 34,598 deaths in 2007) in the United States alone.  Motor vehicle crashes, however - admittedly an area in which I have done much research and volunteering, accounted for 33,687 deaths in 2010, having been officially surpassed as a leading cause of death by suicide.

Many people will say "Well then, why don't more people just get treatment?  They just shouldn't kill themselves."  But for what other illness or injury do we blame the victim for not getting help?

Make no mistake, suicide is a result of mental illness.  Physically and mentally healthy people do not just kill themselves.  Suicide is the 'terminal' of mental illness... only it isn't nearly as easy to predict or prevent.  Until we shatter the stigma associated with seeking treatment, so that getting help for mental illness is on par with getting help for physical illness, these suicide rates are going to continue to skyrocket.  Everyday people... mothers, fathers, sons, daughters, brother and sisters, are going to wake up every day and live the kind of life the young mother at the beginning of this post lived.  I wouldn't wish that on my worst enemy.

This month, May, is Borderline Personality Disorder awareness month.  The color is gray.  Admittedly, everything has a month, or a day, and a color, these days, and May is probably an awareness month for at least half a dozen other things, but my goal today is to shine a light on a dark corner of MEDICINE that is rarely seen or heard outside the clinics where it is treated and the lives of those who suffer it.  BPD CAN BE FATAL!  It can kill you just like any other disease!  10% of BPD sufferers eventually end their own lives.  It would not have to be this way if we could erase the stigma of seeking treatment.  This is only the first of my posts on the topic.  And I'm not saying we need to start up meal trains every time we hear that someone has BPD, starting tomorrow.  I'm not even saying that mental and physical illnesses CAN be treated medically in the same way - they cannot.  But what does need to change is our perspective.  Admitting mental illness should not be a source of shame or embarrassment.  It should be no more frightening to come out and say "I have Bipolar Disorder" than it is to come out and say "I have epilepsy".  The reaction to such an admission from a loved one should not differ.  That is the first step to stopping the epidemic rates at which mental illness affects our populations.

And that is something YOU can do.  Next time you hear that a church member has been hospitalized for a suicide attempt, don't avoid their gaze the next time you meet them.  Ask that awkward girl who mutters to herself how her day is going... and then just LISTEN to the response, no matter what it is.  Don't decide that these people can no longer be trusted or helped.  If and when it's appropriate, say something.  "Hey.  I heard you were having some problems.  Here's my number.  Please call me any time."

You might just save a life.

I Have A Problem With This

In the recent days, I read about a series of events that made me happy - and then sad - and then sadder.  These concerned the activities of Christian children's charity World Vision, and many of you may be familiar with the events to which I am referring.  For those who are not, you may find some information here, or just continue reading and I will briefly summarize the events.

On Monday of this week, World Vision, a Christian charity that offers a 'sponsor a child' program to aid impoverished children around the world, announced a policy change reflecting its intention to hire Christians who identified as homosexual.  In the two days since that information was released, large numbers (some sources says thousands) of Christian World Vision sponsors immediately withdrew or threatened to withdraw their support of their sponsored child through the program.  Facing this backlash and the prospect of having to tell thousands of children that the benefits of having a sponsor were ending for them, World Vision chose to cut their losses and reverse the policy in hopes of keeping its sponsors and maximizing benefit to the children they serve.

Now, I know there were a lot of things wrong with what you just read, but I want to take it one step at a time.  First, though, I want to make one thing absolutely clear.

These "Christians" who withdrew their support for the children they had promised to help over a doctrinal disagreement DO NOT represent Christians as a people, and they DO NOT represent the God we serve.  We'll get to more on why in a moment.

First let's talk about the initial decision - the policy change to allow the hire of homosexual employees.  When I heard about this, I was thrilled.  That decision by World Vision was very Christ-like.  You see, the God I worship wrote a lot of things in the Bible.  Sure, some of them can be interpreted as stating that homosexuality is a sin.  My opinion on that is neither here nor there.  The point that is important for me to make here is that this is not all the Bible says.  The Bible lists a multitude of other things that are considered sinful.  Lying.  Stealing.  Cheating.  Disobeying your parents.  Working on the Sabbath.  Using the Lord's name in vain.  Divorce and subsequent remarriage.  In the Old Testament, where most of the references to homosexuality are found, even things like consuming pork or wearing the wrong type of clothing.  It also states, in more than one place, that God does not consider any one sin 'better' or 'worse' than any other.  This means that murderers and liars are guilty of the same sin, not one more than another, neither more worthy of the Kingdom of Heaven.  None of us sin better or worse than others, we simply sin differently.  So to bar homosexuals - CHRISTIAN homosexuals - from employment, would be no different in the eyes of God than barring anyone who had ever committed any sin from it.  And none among us are without sin - so who exactly would World Vision employ?

Contrary to what the Westboro Baptist folks would like you to believe, God LOVES homosexuals.  He also loves liars, cheaters and even murderers.  In many places the Bible states that never should any one of us stop another person from doing good in God's name because they do so differently, believe differently, or because they are not "one of us".  To stop another person from doing good is to do bad yourself.   In changing their policy, World Vision was following Christ!  Their decision to allow even those whose doctrinal beliefs differ from their own to do good works in the name of the Lord was Christ-like. 

What followed, however, was the opposite.

As I previously stated, following the announcement, a large number of World Vision supporters either withdrew, or threatened to withdraw, their commitment to their sponsored child, citing what they believed was a policy that violated their religious beliefs.  Since this is my blog and it's about my opinion, I can state quite plainly here that they were WRONG.

Further study of the Bible would reveal to these people that World Vision's actions did not violate the beliefs of Christianity in any way - in fact, it is exactly what Jesus would do.  Love every person, encourage them, despite whatever their sins may be, to do good in His name.  You see, God LOVES the world.  He SO loves the world that He gave His Son so that we might have eternal life.  God does not love 'only those without sin'... that's not what the Bible says.  It says "For God so loved the world".  He loves the sinner.  He loves everyone - all colors, shapes and sizes - born and unborn, married and single, gay or straight, rich or poor, happy or sad, clean or dirty.  He loves us all... even the liars, the cheaters, the murderers, the adulterers, even the very people who denounce Him.  None of us is without sin.  He loves us anyways.  God would not have us stop any of these people from doing good in His name - so why would we expect World Vision to do that?

What does violate the beliefs of Christianity is withdrawing your support from an innocent, impoverished child who needs your help because you disagree with some higher-ups about a doctrinal issue.  This is failing to heed the call of the Bible to care for the orphan and the widow, to feed the hungry and clothe the naked.  There is no clause in the Bible for only doing what is right when you get to make the rules.  There is no clause that states that it is more important to judge others for their sins than to do good works.  Yet that is exactly what all those people did by withdrawing their support.  Is that what Jesus would have done?  I think not.  To hear that people had done this, withdrawn support from innocent children, supposedly 'in the name of God'... well, that hurt my heart.  And I know it hurt His too.

So then the news came today that World Vision was reversing its decision... they will no longer hire Christian individuals who identify as homosexual.  This made me even sadder.  Now not only are they also stopping people from doing good in the name of the Lord... we, the church, by allowing this to happen, are sending the world a message about Christianity.  We are sending the message that it is more important to judge than to help.  That charity and being Christ-like take a back seat to judgment and pride.

This is where I want to make a different message very clear.  These people do not stand for all Christians, nor do they stand for the God we worship.  The message they are sending is nothing but harmful to their cause - as it will turn more people off to Christianity, seeing the religion as judgmental and bigoted.  But sadly, these people are the vocal minority.  There are many, many Christians such as myself who supported World Vision's initial decision.  Some of us even sought out the organization to make donations or sign up to sponsor a child because of Monday's statement.  But you won't see any mass exodus of these people now that the statement has been reversed - because they actually value being Christ-like first, and would never withdraw support from one of God's children, or from an organization that helps God's children, over such a disagreement.  Certainly, to me at least, World Vision's reputation has been tarnished by the reversal - but if I had chosen to sign up to sponsor a child, I would not withdraw my support of that child now - the only person who loses when people do that is the innocent child.

It would be easy to assume that since things will quiet down now that the statement has been reversed, that Christian sponsors are happy with the results.  But like I said - the outcry came from the vocal minority.  The vast majority of Christians support both the ministry of World Vision and the equal hiring practices proposed in the initial statement.  We are saddened and disappointed by the reversal - but we won't be taking it out on the children.

So please, I ask you as you read about these things in the news, do not judge all of us by the ones who give us a bad name.  Do not be deceived into believing that we are all judgmental and bigoted - because the vast majority of us are not!  Those who are truly following Christ, even if they believe that homosexuality is a sin, also realize that we are all guilty of sin and that none of us should be judged solely by our sins.  We believe that none among us should be held back from doing good in His name because we sin in one way or another - because who, then, would do good?  We do not value being judgmental - the Bible does not call us to that.  We value being Christ-like, which the Bible does call us to... and He loves each and every human soul.  We truly do believe in asking ourselves, "What would Jesus do".  And in this case, well, as my favorite pastor used to say... "God loves you.  He loves you just the way you are."

So do good in His name.  Let no one stop you - any who try are not doing the work of the Lord.  And know that a vocal and judgmental minority does not represent our religion, or our God.

Too Long

Princesa,

It has been too long since I wrote.  I am sorry.  I have given you reasons before and I don't think you need to hear them again, I think you will understand perfectly well, but I do want to make sure that you know that even when I go a long time between letters, it does not mean I am thinking of you or missing you any less.  I still fall asleep every night snuggling Ellfant and thinking of you.  I still pray night and day for your health, safety, and happiness... and for you to come home.  I still see you in every little detail of my every day.

Yesterday I opened the closet to get out a coat to wear, and saw your flower umbrella that you got for your seventh birthday, and the pink rain jacket we bought because you didn't have one to wear to school, and I wished you were here to use them.  I allowed myself to part with a few of your things - outfits, shoes, things like that - so that your friends J and N can use them.  You should see the pride they take in wearing "A's clothes".  How they tell me they miss you every time they put them on.  How my heart smiles seeing things that used to be yours bringing other children joy.

You're going to be 11 soon.  I thought double digits was hard, but 11... goodness.  The day I said goodbye to you, you were 9.  Little.  11 is a pre-teen!  I hate so much that I have missed these 21 months of your life.  I wonder what has changed about you.  Which of your little quirks you have retained, if you've gained any new ones, what parts of who you were when I saw you last that you have outgrown.

Stores are full of fun spring and Easter goodies.  I long to put together an Easter basket for you, to pick up another pair of adorable Easter socks in the dollar aisle, to take you to the store and have a fashion show to pick out the very best swimsuit for summer.  Mom made Paczki last weekend and the weekend before... and I think about how if you were here, I'd barely get any!  But I wouldn't mind, because it would mean you were here.

I can't look forward to your birthday this year.  It was so very hard for me last year, even though I put a smile on and celebrated for you.  We'll celebrate again this year... but it won't be the same without you.  I'll miss picking out the perfect presents and watching you open them and exclaim "Oh, I just did want this!" even when you'd never seen it before in your life.  I hope you'll have cake and presents and ice cream and love wherever you are.

But I don't want my letter to be all about being sad and missing you because you were never one to dwell on the negative, the things you couldn't control - you were one to seize the day, enjoy the moment we were in.  So I'll fill you in on our 'moments'... on one condition... you tell me everything you can remember that put a smile on your face since I last saw you, when I see you again.

Mom is still working a lot, but she does it for our family and I know she loves and thinks of you all the time.  She's been cooking a lot of fun treats lately that I'm sure you'd be glad to help her out with... at least the licking the beaters part.  She misses sharing her bagels with you in the morning, you helping her dry the dishes.

Danny is going to college now, he's mostly taking general classes because he's still not quite sure what he wants to do 'when he grows up', but he seems to like it.  He plays video games all the time, as usual.  He's also driving now (I know, scary, right?) so there's an extra person to run errands around here.  He had a friend over last weekend... and they, you know, played video games while sitting next to each other, haha.

M doesn't come over every day anymore because she's almost 15 years old and big enough to stay by herself for a few hours - but we get together on weekends sometimes, or even weeknights especially if it's going to be cold in the morning so I can drive her to school.  We go shopping, play games, go out to eat... a couple weeks ago we went to Fort Rapids (the indoor water park I took you to where we saw some of our friends from church) and had a really good time.  Wished you were there.  We'll go when you come home.

I know you'll want an update on the kitties... they are doing good.  I think I wrote to you before that Boo went to kitty heaven, but that I got another kitten and named him Marbles - he's about a year and a half old now.  He and Tiger (or, "Stripey Cat" as you liked to call him) get along really well, even though they beat up on each other and chase each other around the house a lot.  Marbles got out of the house the other day when it was snowing and really cold... Danny and I had to drag him in from under the deck!

As for me... I worked for a few months as a nanny for a 3 year old boy and a newborn little girl.  I quit that job a couple weeks ago because it was just too stressful - funny how other people's kids are so much harder to handle than you guys!  I'm back to looking for jobs and helping Shannon with your friends J and N, and little M who has turned into a toddler since you last saw her, and R who was born last summer.  I love being at their house because they know and understand everything you and I went through.  Shannon understands where you're coming from more than I think you even know.  One day maybe you can talk to her about it.  I've also been doing the same stuff, helping orphans find families and getting them home, and seen a lot of beautiful families in the process.  And I taught myself how to make really cool bracelets and if you were here I'd make you a pink and purple one.  Actually, I do have a surprise for you when you go home... for all our missed birthdays, Easters and Christmases.  I can't wait to give it to you.

I wish I could hear from you and hear how you're doing, what you're up to, who your friends are, how you like school... we're going to have a lot of catching up to do when I see you again!

I love you Princess.  I love you like the moon at night - big, and round, and warm, and bright.

I love you.  Goodnight.

Love you forever,
"Kai"

The Year With No Hugs

I want to preface this by saying that I do recognize and appreciate and love the friends and family who are still in my life.  I give thanks for every one of you, because without you, this would all be so much harder.  My Year With No Hugs wasn't truly hug-free because of you.

It's January 1 again.  Another year passed.  Last year, I had so much to say about the previous year, because 2012 was so eventful for us (and no, not in good ways, for the most part).  This year... there's not much to say.  2013 was not eventful but for that I struggled with my health some more... three more surgeries and a birthday in the hospital, among other things.  But there's one thing that does stand out about 2013.

Since I met A in 2004, as well as since AJ was born in 2009,  there have been a few times when I went weeks, or even months, without seeing them.  Pawns in the cruel games adults played against each other, there were times when I couldn't see them... but they were always temporary, because I was needed.

2012 was the year that all changed.  When I made the phone call that changed our lives, I knew that this could be the case.  I also knew I had to do it anyways.  2012 was the year I said goodbye to my babies.  Gave my last hugs... if only I'd known they had to last this long, I would've hugged a little tighter, held on a little longer...

After exhausting all possibilities of bringing them home, I rang in 2013 with a heavy heart... hurting, because I knew I wouldn't be spending the new year with my babies, but still a little hopeful that things might change, and still glad to say goodbye to 2012.

We didn't get a miracle in 2013.  Things didn't change... not in the way I wanted, anyways.  I suspect they haven't changed at all... but there's no way to know for sure... because 2013 was the first year since I met A and since AJ was born that I didn't see them at all.

Not a glimpse.

Not even in passing.

Many times I thought of them, how I used to hug them close and thank God for putting them in my life... and I wished I could hug them again.  I dreamed about one day when I might get the opportunity to get just one more hug.  But it didn't come.  2013 was The Year With No Hugs.  Not once did I get to hold my babies close, smell the way their hair smelled after bath time, snuggle up and read a book, embrace them because I was so happy to see them again.  Not once.  I didn't even see their little faces.  Not.  One.  Time.

A whole year without hugging someone you love more than life itself is a long time.  It's a hard time.  It's a hurting time.

Maybe that's why I have so little to say about 2013.  When someone you love is missing... not much else matters.

I'm healing.  There will be two squares missing from my little patchwork family until A and AJ are in my life again (however long it takes)... but I'm learning, slowly, how to get by until then.

Who knows?  Maybe this will be our year.  I'm not giving up hope so long as there is breath left in me.  I'm still praying, every day, for our miracle.

Babies, wherever you are... prepare to be hugged, because when I see you again, I owe you a whole year's worth.

Te extraño

In Spanish, it means "I miss you".

And I do.

I know the odds are a million to one that you'll see this.

But sometimes it makes me feel better to imagine that you will...

So I just wanted to tell you that I miss you.  So much.

M said she saw you.  That you looked grown up.

She told you I said "hi" (even though I never asked her to - she knew I would've wanted to tell you hi.)

You said "hi back", and that you loved me, and to give me your kisses.

When M told me I cried.  Not because I missed you, although there are plenty of times I cry for that...

Because you loved me.

Still.

And if you love me, you must know I love you.

I miss you, princess.  Especially right now.  Especially at Christmas.

And I love you so much.

Hasta te veo, mija.

The Three-Year-Old Napping Saga

This is not funny.  Like I promised.  It's actually quite soul deadening.

Upon their third birthday, children seem to enter some sort of anti-nap vortex, wherein even though everyone with half a brain, child included, realizes they NEED a nap, they do everything in their power to resist the evil nap.  It's as though turning three also instantly changes all their blankets and teddy bears to monsters to be vanquished through the powers of nap resistance.  And all the grown-ups who have unwillingly entered this evil vortex with the child are slowly driven insane.

That's the world I'm living in right now.

Actually, scratch that.  I'm in a special anti-nap vortex wherein the grown-ups involved are all QUICKLY driven to a point of such insanity that stabbing their eyes out with an icepick and setting themselves on fire, thus ensuring a long recovery in a burn unit, sounds far more appealing than continuing the Epic Nap Battle.

Don't worry, I'm not in a burn unit.  Yet.

It could honestly be any day now.  I'm thinking about buying gasoline... and not for my car.

"Why?" you might ask, if in fact you have never visited this particular Vortex of Doom.

Well... let me see if I can illustrate this for you with a friendly timeline.  A friendly timeline of a completely fictional day in the life of a completely fictional person who knows a completely fictional three-year-old named... *tries to think of something non-offensive*  Hmm.  Maybe it should be Biblical.  What were Job's kids' names?

I looked it up.  One of them was named Ophlf.  Which sounds like a sound I might make while on fire.  So that's it.  Also, this Job dude had a lot of kids.  No wonder the guy was tormented... I bet he spent YEARS in the Vortex of Doom.

So, timeline.  Here we go.  Get ready.  It won't be funny, I promise.

12:00 - Ophlf (gosh, that's hard to type) eats lunch.  This goes fine.

12:30 - Ophlf goes potty.  This is starting to sound like a children's board book.

12:45 - Ophlf is put in his bed, read a story, and tucked in with all four of his stuffed animals.  If the previous day's events are repeated, Ophlf will fall asleep right away and sleep for hours.  "Wow," you're probably thinking, "that doesn't sound like the sort of thing that happens in the Vortex!"  But you're wrong, because it does.  Why?  Because little Ophlf likes to keep us guessing.  Some days, you gear up in your battle armor only to find out that the opposing army only wants tea and crumpets.  Other days, you set aside the armor and let your noble steed go for a romp in the field, and the army sneak-attacks you because you got complacent.  They're not a nice army.

12:50 - Ophlf is singing.  OK, that's cute enough, little Ophlf is singing himself to sleep!

12:55 - Ophlf has confused singing with yelling.  Unpleasant.

1:15 - Still yelling.  You ignore the yelling in hopes that Ophlf will tire himself out and fall asleep.

1:20 - Ophlf has now started doing amateur gymnastics on his bed.  You again resist the urge to go up there, because it usually only makes things worse.  That is how three-year-olds work.  They are extremely counterintuitive.

1:35 - Ophlf has turned his light on and is now cheesing for the video monitor in his room, while making loud, sudden noises that frighten any animals within a six mile radius.  Time to go up there.  *You do.*  Ophlf looks jubilant that his attempts at getting you back in his room have finally succeeded.  You mentally start pricing how much gasoline it would take to soak your own body.  As you go back downstairs, with the light off and one teddy bear gone, Ophlf is cheerily fake-snoring while huddled in some sort of weird yoga-ish bear-type pose.  You tell yourself that you are not going back up there for at least another 15 minutes.

1:45 - Waving a teddy bear in front of the monitor, kicking the bedrail away from his mattress, all in the midst of jubilant screeches.  Has it been 15 minutes yet?

1:50 - Steadfastly refusing to speak to him and give any sort of reward for the behavior, you return to Ophlf's room.  It reeks.  Oh, the old poop-during-naptime trick... you know it all too well.  You complete the disgusting job without so much as a word, then return him to his bed.  Another teddy bear gone.

2:00 - Bedrail overturned, Ophlf on top.  Pointy metal things sticking up in the air just waiting for an amateur gymnast to fall on them.  Go back up there.  Another bear.

2:15 - Well, it's not his bed, but Ophlf is actually lying still... on the floor where he kicked the bed rail away.  You opt for as little intervention as possible and stay away.

2:30 - Check the monitor.  No Ophlf.  Thumping continues.  This can't be good.  Go up there.  There he is.  Right under the video monitor, repeatedly throwing a book and his last teddy bear against the wall.  Book and bear gone, you just barely manage to hold your temper.  When you try to put Ophlf back in bed with his  blanket, he kicks it off and begins to whine and cry.  Despite whining and crying usually being negative things to see in a child, you feel just a little bit accomplished.  Maybe you are finally making an impression on little Ophlf.  This time, when you go back downstairs, you steadfastly refuse to look at the monitor or return to the room.  For the safety and sanity of all.

2:50 - Thumping continues.  Refuse to care.  Start wondering where the matches are.  Will one match do it?  If not, will you, minorly burned, be able to light another in order to ensure a good long time in the burn unit?  Should you stuff your pockets with dryer lint to fuel the ignition further?

2:55 - Ophlf is standing at the gate on his bedroom door (you can hear him).  Shouting for anyone/everyone he knows.  Deep down, you know that the nap battle will be lost today.  You wonder if your Giant Eagle Fuel Perks can be used on gasoline meant for self-dousing.

3:15 - Check the video monitor.  It's been too quiet.  There's little Ophlf, emptying out his carefully folded clothes from the dresser drawers onto the floor.  Resist urge to bang head against wall.  Go upstairs, tell Ophlf that he is getting a time out after nap time, and that he will help you pick up the clothes.  Close door, because you  know this makes an impression on Ophlf.  He is not scared, he's just mad that the 'yelling at the gate' option has been removed.

3:30 - Ophlf puts two and two together and realizes he can open the door.  You can tell by the (far too audible) gleeful laughter.  Go back upstairs and close it.  This time, remain outside the door.  Commence temper tantrum.

3:45 - Temper tantrum still raging.  Realizing that Ophlf has been up there three hours now, and that you should've probably given up an hour ago (but who wants to give up right when they think they might be getting through to the kid?), wait for a lull in the tantrum and then enter the room.

Ophlf wins.  No nap today.  Thinking about it, you're pretty sure there's a Shell station down the street.  Oh well.  At least the burn unit will be an improvement over this day.

Dear Tim Horton's Guy

Dear Tim Horton's Guy,

I don't know your name, because either you don't wear a name badge, or I have never bothered to look at it in the course of our seven year relationship... so you have two choices.  Because you look alarmingly like David Boreanaz, you can be "Guy who looks like David Boreanaz" or "Tim Horton's Guy".  Since most people don't like being defined by their profession, especially if it involves a drive-thru window, I'm going with "Guy who looks like David Boreanaz".  Oh, and a bonus... I'm ridiculously attracted to David Boreanaz and I wish to have his babies... so, yeah, you're welcome.

Anyways.  Thank you, David Boreanaz look-alike, for your ever faithful service to me at the Tim Horton's drive-thru window.  You have worked there since before I started college, which was, you know, like AGES ago, back when Miley Cyrus was still adorable, and you have never failed to deliver my Timbits with utmost excellence.  In fact, the other day, I'm pretty sure I saw you grab just enough Timbits for me out of SOMEONE ELSE'S waiting box... which kind of made my day.

And speaking of making my day, today's exchange was another perfect example.  I mean really.  Here it is.

You: You're going to turn into a Timbit you know

Me: (Smiling only because you look like David Boreanaz, anyone else could not get away with commenting on my eating habits at the drive thru) ...and french fries, and grilled cheese sandwiches.

You: What?

Me: Those are the other things I eat.  Yes, I eat like a five year old, I know.

You: (laughing) That's awesome.  You're awesome.  Have a great day.

Ahem... I'M AWESOME!  Furthermore, by looking like an actor that I'd like to have babies with, you have inadvertently reinforced this notion I have that said actor ALSO realizes my awesomeness and/or knows I exist.  So good work, buddy, bet you didn't know you were actually serving Timbits AND a side of reinforcing delusional relationships with actors who don't know I exist!

Now, I have one bone to pick with you, Guy Who Looks Like David Boreanaz... this morning... there was a little bit of JELLY on one of my honey dip Timbits.  Now let's get one thing straight here.  I don't like jelly.  If I did, I would probably order donuts that contained it.  Since I do not like it, I choose donuts that do not contain it.  Therefore, contaminating one of my precious fried-dough morsels with the sticky substance is a serious offense.  I mean, I had to actually get a napkin and wipe it off before I could eat that Timbit.  This caused me some deal of anguish.

That all said, I'm going to let it slide, Guy Who Looks Like David Boreanaz.  Why, you ask?  What makes you deserving of my forgiveness after such a heinous offense?  Well, Guy Who Looks Like David Boreanaz, the answer is simple.  You look like David Boreanaz.  You tell me I'm awesome.  Now I feel like David Boreanaz thinks I'm awesome.  For that, I'm willing to overlook the offending jelly.

BUT - I do have to warn you, David Boreanaz-look-alike - my forgiveness only goes so far.  This jelly-on-non-jelly-containing-donut thing must not be repeated... because sooner or later, I'm going to inadvertantly start resenting you (and possibly also the actual David Boreanaz) for the contamination of my breakfast foods.  So, if you'd like our wonderfully fulfilling relationship to continue in the fashion it has for the last seven years, perhaps you should develop some sort of jelly detection system, and then only give contaminated Timbits to other customers who are less awesome than me.  Just a suggestion.

In closing, Guy Who Looks Like David Boreanaz, besides the jelly incident this morning, I think you are awesome too.  The only way in which you could possibly be more awesome is if you were ACTUALLY David Boreanaz.  Then we would make babies.  But since that's sadly not the case, just keep up the good work - the more you feed my delusions about my relationship with said actor, the more of your tasty Timbits I'll devour.  Wait.  Why did that sound sexual?  Ugh.  Anyways.  No more jelly.  Reinforce belief that David Boreanaz thinks I'm awesome.  Do those two things and we're golden, got it?

But remember my fickle forgiveness... keep up the jelly thing, and I may be forced to go to Jolly Pirate.  David Boreanaz does not look at all like a pirate, and you would be unable to sell more of your delicious breakfast to me, which I'm sure gives you great fulfillment... so I don't see that going well for either of us.
Much love, Guy Who Looks Like David Boreanaz.
XOXO,
Katie