Labeled

Healing and growing take work- often painful, gritty, I'd-rather-run-away than face this stuff kind of work. But, as with most anything of value, it's always worth it.

A couple of weeks ago, Samuel and I returned to the doctor's office where he had done the ADOS assessment for autism. We were there for the results and to go over the full report from the clinician's observations of how he completed tasks, how we answered one bazillion questions about his development, behaviors, understanding, and communication, and his medical history.
She handed both of us copies of the full report which spanned four pages. We flipped through the papers and scanned the medical description of what has been plaguing him and our family for the better part of 13 years. Her conclusion was Autism Spectrum Disorder (high functioning), and Bipolar I.

The black ink that bore his diagnoses swam in front of my eyes as tears formed. I wasn't so much upset, as relieved. He's had both of these diagnoses before- however- never both at the same time. He was given the diagnosis of bipolar when he was just three years old. It was shocking to me then. It seemed too big of a struggle to lay on shoulders so small, yet, the behavior and moods we'd experienced fit well within the perimeters of the disorder. But, when he was given that label all those years ago, it wasn't enough to explain everything we were dealing with. I knew in my gut there was more to it, but his young age made it difficult to tease out what was going on.
At that age, he'd been hospitalized for the first time. When we were discharged, he left with BP as the main diagnosis, and we were thrust onto the path of psychiatric care. What followed was years of running into dead ends. Psychiatric care is overwhelmed by the demand and not enough providers; psychiatric care for children is even harder to find, and children under the age of 8 are often refused service by doctors. It's not considered 'good practice' to diagnose children with such a heavy label, and for the next 5 years, we were given a myriad of other diagnoses instead- all of which essentially were symptomatic of bipolar. Right when he turned 9, we saw an incredible doctor at UVA. She was highly sought after and we quickly understood why.

Her ability to draw out what she needed from her patients, compile information given to her, and her uncanny skill in understanding family and behavioral dynamics, allows her to dig through unnecessary detail and identify the underlying issues. She diagnosed him with autism. I was relieved. I stopped taking him to the less than helpful psychiatrists. Instead, we stayed with Dr. Anderson (developmental pediatrician), traveling several hours one way for appointments regularly, and she helped us with med management, recommended therapies, and education about autism. I'm embarrassed to admit that because I was keenly aware of how autism was more 'glamorized' (for a lack of a better word) than the 'run of the mill' mental illness, it was easy to latch onto the autism diagnosis and forge ahead. Autism had risen into the collective awareness of our communities, and explaining to outsiders that questionable behavior stemmed from autistic struggles was more easily understood and accepted than sharing the painfully stigmatized information about mental illness. Dr. Anderson was incredible for us. She found a combination of medications that helped immensely- though our lives were anything but 'normal'. Still..... I knew there was more.

To get this combination of diagnoses; explanations of why and how his brain works the way it does, and education on what to expect, how to respond, and the types of support we need was ... a huge relief. The two together answer so many questions. They make life hard. For him, and for the rest of us. The two disorders buck up against one another and can exacerbate many of the symptoms he wrestles with. It's a sobering diagnosis- one that will require him to be diligent for life in taking his medications, eating well, resting and sleeping enough, exercising, and intentional social interaction balanced by intentional solitude. It's a lot for anyone- and certainly for a kid who is weeks away from his 16th birthday- and yet, there is relief. Comfort. Words given to years of hardship and confusing moods and responses. A real, tangible explanation as to why this has been so hard and so traumatic for all of us. Validation that he's not a bad kid, I'm not a failing mother, and our effort to push back the weight of this hardship has been nothing short of heroic.
He's one of the strongest people I know. He's had to live through being my first child- and my early years' lack of understanding about the brain and mental health and illness. He's had to endure my anger, fear, grief and inadequacies as I suffocated under the weight of scathing judgment heaped into my lap by doctors when he was young, and some extended family (who are no longer involved in our lives).

We've grown so much together. I have learned to trust my intuition. I never stopped seeking, begging for help, researching, trying everything I possibly could with the knowledge I had- but I also took on the burden of judgment from others who had no idea what life looked like for us. I allowed ugly words spoken in ignorance take root in my heart and spirit and regrettably, I mothered all of my children from that place of wounding for too many years.

We are survivors. He's done incredible work in the program he's been with for the past 4 months. He's talked, journaled, asked questions, read, participated in specialized therapies, gotten upset, angry, sad; he's engaged in vulnerable conversations with me that are hard to digest, yet powerful in their sharing. He's not a statistic. He's not crazy, or broken, or out of reach. He's a mighty powerhouse of talent, intelligence, ability, compassion, and maturity that comes with walking through the darker places of life.
I'm so proud of my son. We are the faces of people living with special needs and mental illness. We are warriors fighting a broken system, a challenging chronic health problem, and navigating a world that sees mental illnesses as excuses, or humanly inferior, or frightening. Neither of us would have chosen this for him. But it was chosen for us. And both of us are passionate about sharing our experience with the world- to offer hope, understanding, education, and connection.
I'm grateful for his tenacity. And I'm honored by his willingness to pull back places he struggles and share those vulnerabilities with me and others. He's something else- that kid of mine. And I have no doubt that he's going to change the world.

Speak now, or forever hold your peace

I've been going through Beth Moore's Breaking Free study with a couple of friends over the last few months. It's been a good place to examine myself; how I operate- in relationships, in my expectations, and life in general. It's been hard, and painful, and beautiful. (I highly recommend it!).  I'm in the beginning of week five, and the last couple of weeks have had us digging into our backgrounds to discover hard things passed down in our families as well as the really beautiful things. All of us carry both within our families of origin, and all of us will continue to pass on good and bad to the generations coming after us. The goal of the study is to discover, with intention, those things you desire to grab hold of and continue, and those things that have created difficulty, struggle, pain or dysfunction and in identifying those things- let them go.
Interestingly, I watched the video kicking off week five on Friday night. (start at 45:40 for the clip I'm referring to). The night that hate descended publically on my hometown of Charlottesville and made a blatant display of evil personified. The video addressed what Beth considers the most poisonous 'legacy' of many families: Racism. 

She does a great job of calling it out without mincing words, and without painting an ugly, insidious 'tradition' with sugared words to help us digest them. She calls it an abomination. A sickness based in fear and ignorance. She calls us to stand against it- with courage. Knowing for some, standing against the covert and overt racism in family relationships will cost something. She passionately argues that the ideology of being 'color blind' is a disservice, a farce, laughable. I'm with her all the way. She says when we are raised to believe that we are different because of skin color, then by default, it means someone has to be better. Yep. Amen. All things I am on board with. My only disappointment came when I realized she missed an opportunity to make another powerful, needed point. I would add this to her message:
Serving a creator God means we believe He has created all. All creatures, humans, plants, living things. Calling them good. As women, we frequently remind society that when we were created we were also deemed good, and also created in the image of God.
So... for my brain, for my logic, for my reasoning.. this seems a simple analogy. None of us look at the gorgeous blue butterflies flitting around our lawns and think "Man. Those blue butterflies are so much more important and valuable than the orange colored Monarchs. In fact, we should really try to get rid of those Monarch butterflies because they are in the way and annoying me by trying to get all of the nectar from these flowers! Dont they know they don't belong here?! We should make them go back to Mexico." We don't visit the animal shelter and tell the staff that all of the yellow dogs shouldn't be allowed to be adopted because they aren't as good as the other dogs; becoming incensed that the yellow lab is taking up space they could use for a chocolate lab and getting violent when told we are off our rocker for using such warped logic.

This is an overly-simplified analogy, stripping history and pain and wounding from the subject for a moment; but my point is this: Especially for those of us who love our creator God- why would we even consider the thought that skin color determines levels of value?! God is creative. Artistic. Intentional. We have no problem accepting that in the animal world, and with various plants and flowers- yet we stop short of offering the same effortless acceptance to the creatures called humans that He has created in.his.image. 
Beth Moore is correct. In many families of every color (especially here in the United States where our history is marred with horrific crimes against humanity based on skin color), there has been a passing down of racism at some level. It can be difficult to look at. She speaks of her grandmother who faithfully served others, loved her church, spent time in her bible every day and then spoke disparagingly about a group of people- made in the image of God. It's based in fear and ignorance and continues through generations with the subtle (or not so subtle) rhetoric of : if we are different- then someone has to be better. 
Pastor John Pavlovitz posted on his website this weekend calling those of us with white skin to speak up. To call out racism for what it is. To call out our white counterparts engaged in this disgusting display of fear and hate and brutality. To refuse to stay silent in our protected lives, and largely disconnected communities. His message is powerful and necessary- and I want to push it a step further.
I have heard many of my friends of color say that they are tired. They are no longer afraid- knowing God holds them. But they are tired of fighting. Of trying to speak out to deaf ears. Ears deafened by the noise of ignorance- never having faced ugliness directed at them or their families or communities based solely on skin color. Ears deafened by the rally of voices around them telling them that 'the American dream is available to all- if they would just work harder'; or 'black on black crime is worse than white on black crime.', or 'they need to get over it. I never owned any slaves and I don't understand what their problem is. I have tons of black friends.', or the more "accepted" statements such as; 'black people are so much better at sports than white people'; tossed out as though it is a compliment and should be received with gratitude. What about,  'well, he had been arrested before, so I'm not surprised'; and the ever-present: 'why do they have to say black lives matter?! Don't they know ALL lives matter?!'. Those continual sound bites.. perpetuated in our communities, churches, families, friendships, social media, television... they drown out the voices of the oppressed crying out to be heard.
They're tired of competing with the hum of words soothing the nagging worry in those of us with white skin who dare to consider that all of this is so horrifically, terribly wrong... and that maybe, somehow, we have played a part.


Yes, John Pavlovitz. We must speak. It's our turn. It's the responsibility of those of us with white skin to tell our friends and brothers and sisters with brown skin that 'we've got you'. You don't need to keep fighting. You can rest. We will fight FOR you. In love. In honor. And to tell our white brothers and sisters, no. No. We won't stand for this. It's evil.
To my white brothers- your voice carries the most weight. You have the 'in' to those who perpetuate this violence of word and deed. You have the highest probability of being heard by other white men- because you look like them. You have to be brave. Selfless. Honorable. Bold. To call out the coworker who makes a joke that turns your stomach. To challenge your child who makes a blanket statement about 'black people' that he picked up in the lunch room. To tell your family- No. That's not true. And it's hateful.
You have a huge responsibility to use your unearned place of privilege for good. Not to apologize for it, to feel guilty about it, or to try and deny it. No. To use it. For such a time as this.
To whom much is given, much is required. With great power comes great responsibility. Please. For the literal love of God and those created in His image. Use it wisely.

When courage is met with silence

It's been far too long since I left words here in this space. Far too long since I sat and looked inside those places that have stories to offer and experience to share; and, I think far too long that I have been ragged and running and fearful and overwhelmed.

I had an experience this week that I feel compelled to write about- it may polarize some of you, and that's ok as I sometimes think some of the best writing does.
It's about a subject in which everyone has an opinion and many people have personal experience and those who might not have personal experience have opinions anyways.  Life is muddy like that.

This past weekend was a beautiful weekend. A precious friend I've treasured since high school came for a visit and our time together is always rich, refreshing and restoring. We swing from swimming in the deep end of existentialism to splashing in the shallow while we watch stupid videos on youtube and laugh until we fall out of our chairs. She is safe for me, and I for her, and I can say things without censoring and trust that she will dig through the dross to find the silver beneath my careless words.
I had a tough week last week. There are many big changes happening again with my family- and it looks as though we will be moving within the next few months again.  This will be our fourth house in two years, and the thought of uprooting my kids another time does a lot to me emotionally- from the sheer weight of another huge life change, to the basic reality of the work that comes with moving- which I will have to balance on my back that is packed high to the sky with more work than I can get through in each 24 hour block.

Sunday morning I awoke with the familiar sensation of having clenched my teeth as I slept.  My teeth were sore, and it was like a fairly mild toothache. I noticed it, but assumed it would fade into the day and laughter and fun with my girlfriend. She left that afternoon, and while I knew I was anxious about my future and so many weighty things that I'm carrying, I had no idea how badly my body would revolt.  Monday morning I woke up and the pain was stronger.  I was frustrated that while I know my circumstances are beyond me, that in the waking hours I was fairly functional but the truth was revealed in the dark.  It made me sad to begin to realize just how worried I was.  I took tylenol and went about my day, aware but not in awful pain.  And then Tuesday morning came.  I woke up in the middle of the night crying before I was awake.  I became aware of the searing pain my jaw and face and wanted nothing more than to squirm out of my own skin in order to escape it.  I took tylenol immediately and got my ice pack to try and get back into sleep where I could ignore it, but sleep eluded me. I managed to get through the morning at work, and by the afternoon I was in tears. I was tired from the pain, and beginning to be anxious about heading to sleep yet again where I knew my body would betray me.
When I woke up on Wednesday, I felt pain I haven't experienced in years.  I managed to get kids off to school, and my only thought was to see my doctor. At this level of pain, I was ready to do anything to stop it- from running on the street corners begging for narcotics, to smashing my head in the front door. It was some of the worst pain I've lived through in my entire life. In the foggy state of pain I was in, I was able to really begin to see how anxious I had become. The physical pain was a mega phone to the heart and emotional pain i was carrying without even knowing.  While I'm in no way depressed, the reality of the intense level of stress in my life became very clear, and I came around to the decision that I needed to talk to my doctor and ask for some help about managing my stress and anxiety. In the hours before my appointment it was all I could do to stay sane. I wanted to race to the urgent care office and beg for anesthesia. If they could knock me out, then I would get relief. I was in tears, and even vomited several times from the overwhelming intensity of the pain.
Finally it was appointment time, and I wearily sat on the tiny bed encased in crinkly paper waiting for the angel face of my doctor to open the door to relief.
When he came in, he asked what was wrong and I promptly burst into tears. I tried to tell him in ragged, breathless words, what was happening. I explained that I was under more stress than usual, and that I knew it was based in anxiety but I needed immediate help to get through the pounding pain that was taking over all of my head-space (literally). I've never asked for pain medication before, and was hoping that the 'in your face reality' of my pain would let him know how desperately I needed something. I knew he might also give me steroids for inflammation, and I was going to try and push out the words to ask for medical help with anxiety.
Nothing went the way I planned.
I love my doctor. I've been seeing him for about a year for my thyroid and other various minor issues.  I trust him. He's compassionate.
But when I began to speak of pain, and then to try and broach the subject of anxiety, I felt patronized. Not heard. Brushed aside as an overly emotional woman.

He told me he'd give me steroids for the inflammation and to use a heating pad. I sucked in all the air around me and worked to get enough courage to ask for stronger pain medication than tylenol. I didn't need much, just a few tablets to help me be able to rest, and not see stars.  He said no. Told me the steroids would help in a couple of days.  I was embarrassed. I felt as though I seemed dramatic and like a drug user.  I had never asked for anything stronger than thyroid medication, but his response made me feel like my record had just been flagged for asking for pain relief.
I managed to get past that blow and tried to tell him of my anxiety.  I have lost tons of hair over the last months- to the degree that I have balding places in my formerly thick, full head of hair. I had chalked it up to my thyroid being off, and while that certainly may be some of it, I believe much of it is worry and anxiety based too. I didn't quite know what I was asking for, but I knew I was at the place where I needed intervention.  The anxiety of sleep, the worry of not having housing, my ever running towards making ends meet, being the only involved parent and often the only provider for four children.. the list goes on.. I needed medical help. Even if only temporarily.
He recommended three supplements.  I told him that on his recommendation long before, I had bought and tried each one.. for months at a time.. with no measurable results. He told me I could be on daily medication, and I began to cry again.  I told him I didn't want to have to be on something every day, and that depression isn't my struggle; anxiety is.
He said that there were faster acting meds that I could take as needed but they were habit forming and he wouldn't suggest them. Somehow I managed to get the courage to say that I wanted to try anyway.  He told me again they were habit forming. I said back, through tears and embarrassment, that I didn't need much, but could use the immediate relief now, to get through this physical and emotional crisis.
He wrote the script in annoyance, asked me no questions about my life or lifestyle, and then told me I needed to get rid of some of the extraneous stressors in my life. I laughed through my pain.

When I got to my car, the anger began to build.
I had just done something very hard, very courageous, and I was treated with disdain. I had bravely asked for help for the very first time and my request was met with suspicion.

I began formulating an email to him in my mind, and as I was cataloging my stress, I wanted to to shout from the rooftops that not only was I not a weak woman, I was one of the strongest women I've ever known.
I've never done this, never written out or shared the 'list' because I don't want pity-  but I want all of you to see just how serious this was for me:
In the last two years-
My husband reveled an entire other life I knew nothing about- that has lasted for our whole relationship starting before we were even engaged.  Throughout the year after he moved out, more and more information came to light and each revelation was more shocking than the last. The things he had done to me and to our family were no less than hideous.  He then chose to do nothing towards reconciliation except ask me to try again. No apology, no counseling, no redemption. Just rejection and shock, and pain.

In the less than 6 weeks after he moved out, we had to move off of the Marine corps base from our 2000 sq ft house into a 800 sq foot house and we had to give away our family dog. I lost my community, my intact family, my home, any shred of security I had formerly had.

He lost his job in the Marine Corps, money dried up, and I began driving kids back to the base daily so that they could stay in their schools for the remainder of the school year.

We moved again just 7 months later into the basement of friends and lived for a year in 1000sq ft with no functional kitchen. I cooked with a large toaster oven, a microwave, and a small camping-like stove.
The kids started a new school, I tried to figure out how to care for them and work and juggle it all.
I got divorced, had court dates, and wrestled through the revelation that my marriage had been rough the entire time, with lots of treatment towards me that take my breath away to this day.  The reality was dawning that it was never good, nor was it safe. I look back on the scared and weary woman and weep for her lost youth where she never felt cherished, or safe, or truly loved.

My best friend's mother died from cancer, we got two flocks of chickens that were promptly eaten by one of the dogs we were living with (traumatic for my already hurting children), we left our church and began going to a new one, we lost friends, we sold lots of our possessions, and learned to live with far less than ever before. Extended family stopped speaking to us, and rejection piled on top of rejection.

One of my sons was diagnosed with a chromosomal deficit and that began the addition of many more specialists visits who are all located in a town two hours away.

Now, I'm going to have to move houses yet again, I'm working multiple jobs in order to piece together provision for my family without having to pay for childcare, and some months I get no support from their father.
Nothing in our lives is secure other than the love I have for God and my children, and some days the reality of what I hold is so far beyond me that I wonder where my next breath will be drawn from.

My heart is just beginning to thaw and to open again and the fear of hurt and the heaviness of looking ahead at doing this alone for decades to come sometimes feels crushing.

To say that my heart and mind and life are full- and filled with lots of hard things is the understatement of the decade. There has been incredible beauty, and provision, and I'm growing and changing and healing and learning, and really am loving myself fully for the first time since early childhood… but I'm one woman. One woman with no safe place at night to rest my head and relax under the protection of another adult. I'm all of it. Protector, provider, comforter, parent, friend, disciplinarian. God is so incredibly merciful to me, and yet my back bends and sways under the burden I carry around, and I was beginning to break.

To be brushed aside by a doctor when I finally had the strength to eek out the words "Please help me" was crushing. I was given a prescription for an anti-depressant last year by one of his colleagues and I never filled it. I wasn't ready for meds, and truly don't believe I needed anything at that point.  I've been proud of myself that I haven't stayed in bed one single day, I get up daily and do what needs to be done. I'm raising my children, and trying to process each huge change with grace and expectation knowing that my kids look to me for my response to heartache. I know this is the only childhood they get and I want to make it the best I can even in horrible circumstances.

There are lots of conversations happening in our culture about mental health… and I am sad to report that my experience in being brave enough to ask for help was not a positive one.  I don't know what the answer is, and I surely believe there are plenty of people walking around who are abusing the system and making it hard for the rest of us.  I wish I had been received well, and given direction, but once again, I was on my own.  I am the model patient for doing everything right before asking- I've been in counseling, support groups, I have close friends, I eat well, I sleep well, I do yoga, I spend time daily in prayer and mediation, I find times of quiet, I get outside, I take the vitamins and avoid the junk. But the stark reality is that sometimes, all of the good is still not good enough. And it's ok to need help. It IS. There is no shame in it, and there should be no stigma. My brain and heart are weary.  And rightfully so.
I'm going to email that Doctor.  He can still choose to ignore my words, but I pray that as he reads through my story he will begin to see just how much courage it took for me to ask for help in a way I wish I didn't have to. I pray that the next crying woman who needs someone to look in her eyes and tell her it is going to be ok will be given that gift. And I will keep asking, until someone hears me.