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.

Living Outside the Chaos

I’m really quite good at managing chaos. I’ve had lots of practice, and have become a warrior of survival. I’m proud of this, and have learned not to fear much as the confidence in my ability to weather massive storms keeps me in peace.
But.

I’m not good at managing the manageable.

I’ve written about my oldest son and his battle with mental illness. He’s 15 now, and the ebb and flow of his sickness has lasted for more than 13 of those years. I have 3 other children, all younger than him. We have lived in the shadow of his illness for the entirety of their lives. 

Things are better now. While we still have situations that knock the wind out of me (as recently as earlier this week), the violent chaos that was normal in our home for more than a decade has waned. With his maturity has come some ability to push back against coping skills of aggression and destruction. I’ve come to a place of trusting my ability to parent him well, and rather than lean into the storm and exacerbate it with my own fear and anger, I’ve learned to utilize authority and boundaries in a healthier way. The last nine months has been the longest peaceful stretch of my parenting career. Even during this most recent drama, there has been no violence or aggression. 

Yet, I’m struggling.

I’ve been dating a man for the last two years who has seen the dynamics of my family, who has seen the shocking aggression that can pour out of my beautiful first born, who has seen the fear in the faces of my other three, the sometimes unhealthy attachment that has been forged between me and my kids, and who has seen me cry and work and do everything I can to help my family. He’s bided his time, and occasionally he’s spoken up- asking questions and exposing what I already know: I am not good at managing the manageable. Over the last year there have been conversations that he’s initiated that have left me angry, sullen and sobbing. (Never his intention, and always a direct result of the wounds it picks at.) They say that the truth will set you free, but first it will piss you off.
Last night was the second time we had a conversation where the things coming from his mouth seemed to be directly from the heart of God- piercing my soul, shredding my heart in the knowing, and rendering me silent as I knew it was sacred. My flesh wanted to rise up and scream in defense, but my soul knew it was everything I needed to face; and I was grateful to have someone willing to face it with me in love. Beauty doesn’t equal pain-free. Love doesn’t mean avoiding hard places. I ached. I sobbed. I heaved with grief and fear and disappointment.

The difficulty now is that while living in a constant state of chaos, I have never learned how to live in the normal. I did everything around the house while trying to keep my kids safe. I never had breathing space to teach them simple chores or provide a structured schedule. And now, I’m exhausted. My children rely on me to do everything. They don’t pick up after themselves, or only do so with my prodding and their attitudes. There isn’t much structure, and what is there, revolves entirely around me. It’s not healthy for any of us, and it’s not feasible for me to keep this up. But the reality is this: I have no idea how to do it. I didn’t start small, with toddlers who were pulling chairs up to the sink beside me to learn how to do dishes. I didn’t have homework time at the kitchen table in the evenings because many evenings were spent fighting darkness and aggression, and sending children into my room to stay out of the path of their brother. I don’t have a family-known set of rules, expectations and consequences because my oldest (who, by default, sets the example for the others) is not motivated by either reward or consequence. Parenting him has been a continual shifting of what might work for this day, this situation, this mood. It’s left the others wondering what the constants are… and, to my grief, they come up empty.

I look at our dynamics, the lack of maturity and skill in my children, and I feel despair. JJ spoke these things- things I’ve already known- things I would rather run from- and called me to action. Part of me wanted to launch myself across the table to shove him to the floor, and part of me wanted to run away and leave the work to someone else, and part of me was broken… but part of me was grateful. His delivery was kind and raw. He reminded me of my strength and ability and asked why I didn’t infuse this situation with those characteristics. I dropped my head into my hands and sobbed. I could barely speak and he had to ask me to repeat myself several times. I don’t know how to fix it. I know the way things are right now is not good for anyone. I know that you telling me I work too hard at home doing things the kids should be doing is true- but I’m telling you I’m afraid, lost, and honestly, I am not sure I believe in myself as much as you do.

I have allowed things spoken to me when I was younger to take deep root and affect my ability to parent the children God gave to me- with my personality, skill set, strength and energy. I can tell you that logically, I know I have been paired with these children for a reason. That they have things to teach me, and I them, but the strangling vines grown from words once thrown into my soul have siphoned off the nutrients meant for healthy growth. I hear Failure. Flaky. Impulsive. Flighty. Unable to finish anything. Easily Bored. Lazy.

My love language is words of affirmation, and I haven’t loved myself well as I’ve given head space to words of destruction instead.
 

So next week, I return to counseling. I’ve given years to stabilize my son, while waiting for the right time to seek stabilization for myself. I can no longer delay that process. His well being and the well being of the others depends on my health. I can see where the cracks are and need help processing the junk that is preventing me from doing what needs to be done. I need someone to help me pull out the vines and learn how to live in the space between chaotic events.
I’m nervous at the level of emotional energy this will take, but I’m ready to move into it and out of it in order to live well the life I’ve been given.

We are all 'One Anothers'

I’m at a loss. Why are so many of the white people in my community silent?
I have no idea what to do, what to say, how to help. I want to believe that love is enough. I DO believe it. It’s the very essence of God. It’s what we are created from. Love. It is written that love covers a multitude of sins (wrongs, faults, hurts, evil). It’s written that perfect love drives out fear. It’s written that we are made in the image of God. Male. Female. Those are the only distinguishing characteristics listed. Male. Female. No other distinction. No color, size, age, title. Simply man and woman.
So why are those of us who believe all of these ‘it is writtens’ being silent?!
On one hand, I guess I get it.
When something, no matter how terrible, doesn’t directly affect you and your life circle, it is easy to look away and focus attention elsewhere. None of us enjoy pain and suffering, and we spend copious amounts of energy trying to avoid it. If you’ve never experienced poverty, it’s easy to continue living without thought to those who live in financial desperation. There may be moments that move you, moments you give to those who need help, or offer other assistance, but for most of us not living in poverty, they remain moments. If you’ve never loved someone with mental illness, it is easy to offer simple fixes. Dismiss the complexity of the struggle. Look away with callousness or disdain when forced to bump up next to someone whose behavior or processing seems abnormal. You may have moments where you offer compassion, encouragement, a listening ear. But ultimately they sit separated. A series of disconnected, often forced, moments.

Most of us work hard to push pain far from our cultivated comfort, our fortresses of protection designed to buffer us against the ugly, dirty reality that comes with earthly struggle. Each of us have our own ugly, dirty reality in some form, and we work to manage those places while adding pitch to the cracks in our walls to keep out the ugly and dirty of things we’d rather not have to deal with. The ugly and dirty that exists outside of Us. Our lives. Our tightened circle.
So, is that it? Is this why, as white people, we can shake our heads in sadness when another black man is killed because of suspicion we hold inside of our walls that won’t allow us to separate villain from ‘other’, yet not be moved enough to speak? Is this why we can turn off the news feeling troubled but still able to sleep well knowing the epidemic of murdered black men isn’t able to breach our walls?  It is also written that we are to ‘bear one another’s burdens, which fulfills the law of Christ’. (The simple law that states- Love one another.)  That means to shoulder the hurt and fear and anger of others. Others. Not meant to be a separating word as we have made it, but simply: those not in our own personal skin. Every person outside of ourselves. All others. All. Others.
I’m so disappointed by the lack of response I see by the white community. Many people I love live inside of bodies just like mine; bodies that create babies, work hard, love passionately, ache with pain and weariness, battle disease, wrestle with faith, celebrate loved ones. Bodies just like mine simply shaded more heavily with God’s incredibly creative paintbrush. Where is the outcry from the lighter shaded people? Why are we so quick to dismiss what they are saying and gloss over it each time with responses such as “well, we don’t know the whole story”, “Maybe he was reaching into his car for a gun”, “he had other charges, so I’m sure they were afraid of him”, “his music was too loud, his clothes too ‘gang-y’ “. If this was happening to our husbands, sons, brothers and fathers, we would fill the streets and demand justice. Yet. Silence. What are we afraid of? Rejection? Misunderstanding? Hurt? Getting too close to those who weep and wail and grieve and watch us through saddened eyes waiting for our support, understanding and help? Those who we have made ‘others’ instead of seeing the reality that all of us are ‘one anothers’? Those we place in a category we do not list ourselves in.  Why is this even an issue? How can we bear the image of God in our very existence and yet not honor His image in those with shaded skin? I believe the act of acknowledgment by those of us living in lighter skin, the response of- ‘I see this. I see you. I’m not looking away. This is not ok. Where is justice?! We are one. We will work with you as one anothers to stop the suffocating blanket of fear and danger to you and your loved ones.’ There is no script here. There is no perfect word that will alleviate their hurt, sadness and fear.

But love.

Love says, I’ve never done this before. I have no explanation as to why I’ve never entered into your world as friend. Neighbor. Church family. Community member. I have no explanation to offer for why I’ve put walls up between us. But I’m here now. I see you. I see your pain. I don’t understand how it feels to worry your husband or son, brother or father may not come home tonight. But because I bear the image of God, and you bear the image of God, I am here with you to listen. I want to hear what you have to say. I want to hear all of it because we are all ‘one anothers’.
Then? We do just that. We listen. We hold their babies like our own. We sit together at tables and play games and break bread. We share stories of laughter and hurt. We invite them into our lives and ask to be allowed into theirs. We don’t look away from their pain filled eyes to avoid the ache it elicits in us. That pain? The ache we are trying to avoid? That is exactly where we are connected. When your heart jumps at their hurt and senses the weary agony of not being heard or seen… that jump is God saying YES! Right here. This is the bearing of one anothers burdens. Don’t look away. Honor this space. Let it move you. Let it affect you. Let it sear you. Don’t pass up the gift of bearing this burden. It sounds simple. And it is simple. But it isn’t easy. Loving and honoring and bearing and weeping and listening and sitting and being moved to action will never be easy. It will take God sized strength and ability. It will require us to hurt as our one anothers hurt. Yet the incredible thing is this; we bear the image of God, and He is more than capable of sustaining us as we bear our one anothers burdens. Lean into the reality of image bearer in you replicated exactly the same in every single one another.

I'm Not an Enlightened White Woman

I'm the daughter of a preacher-man. One who had congregations made up of people from every class and creed. My parents taught me early on that people are worth loving. Worth hearing. Worth our time and love. That all people are the same, and created in the image of God. They probably didn't teach me this lesson intentionally, however growing up in a home where our dinner table was often shared with people who weren't the same color as us, it's a lesson I learned easily.

Some of my parents' closest friends are a black couple who began their family and careers in the growing of our church. Their family quickly became part of ours; and dinners, birthday celebrations, weddings, graduations- we did all of them together.  He was a quiet and kind man in med school, and she was a plucky lawyer with a loud laugh, sparkly dancing eyes and welcoming arms. I remember my dad telling me that Thomas and he had had many conversations about race and oppression. Thomas was working as a resident in the hospital in our town and he had an ocean of student loan debt. He drove an old, beat up car, as the purchase of a new one was beyond his means. Like most med students, he was living the frugal life with the hope to one day live the 'good life'. He told my dad that after he had been pulled over and ripped out of his car and thrown against the side of it to be patted down and treated with suspicion, that he vowed to never again go out in sweats. He knew that his wardrobe alone could possibly change the perception of who he was- a black man in an old car. As a young girl, I was appalled. Thomas and Dayna were part of our family! Who would ever think that they would be a threat?!
We rejoiced with them as he moved up in his career, and she did the same. When Dayna became the first black woman to be published in the Harvard Law Review, my parents were just as proud of her as her own blood connected family. She is now actively working towards the time when it is expected she will sit on the Supreme Court. When Thomas was named one of the best cardiologists in the country, and his ad for UCHealth was published complete with Thomas in his surgical scrubs standing beside Peyton Manning in his uniform, we all stood a little taller, knowing he was worthy of the title. And I wonder... if he were gunned down and later his incredible story was revealed- would we as white americans then mourn because we would see his accomplishments rather than his humanity?! I know. None of us want to go there.

We hosted an Indian chief for dinner when I was in the 3rd grade. He came to our house in full regalia and allowed us kids to try on his headdress while he told us stories of his tribe and his ancestry. My mom made many meals for international students visiting our country, and many more for missionaries who were visiting home before heading back into the field.
I remember crouching on the stairs listening to the hushed voices in the kitchen when a couple in our church had miscarried the baby they had tried so many years to conceive. My dad was headed over to their house (one we had all been in many times as family) to offer comfort. Side note- He, a black man- an artist of epic proportions; my family had his paintings in our living room; she, a successful, professional white woman. Broken. Hurting. Grieving. (Romans 12:15  Rejoice with those who rejoice, weep with those who weep.)
My childhood was deeply marked by my parents' active love and friendships with people who looked nothing like us, and yet were exactly like us.

I attended junior high school in downtown Charlotte, NC. As a pastor, my father made meager earnings, and our parsonage was located in a rough area. Sadly, in America, poverty and race run neck and neck, and I was one of a small handful of white students. The only white girl who made the step team ( I actually have a little bit of rhythm!). Never once did I feel excluded, or thought it odd.

My church today is incredibly diverse. We have two campuses and one has a white pastor, and the other, a black pastor. My circle of friends is balanced with white, black, Hispanic and Asian loves. The man I have been dating for more than a year and a half is a friend from high school, a black man with brown children. My office is filled with people of all color and backgrounds and the company is owned by a black man. My son's mentor and counselor is an incredible black man whom Samuel adores.

My point is this. I'm not an 'enlightened' white woman. I don't believe there is any such thing. I'm a white woman who was given the gift of the love of all of humanity by two white parents who walked it out in daily moments. My mom is from the deep south, and while her childhood certainly was laced with the ever-present stereotypical southern racism mentality, her life experience with individual people carved out any of that inside of her. Her family (who all still reside in the deep south) have also come far from that pathology. The reason simply being- when you have a real encounter with the living God- the one we proclaim created heaven and earth- you can no longer look at any of humanity and believe that somehow some of humanity was declared good, and others declared subhuman. And when you have a real encounter with others who have brown skin, and know them as a person instead of as a color, you can no longer maintain a hateful mentality.  A creating, loving, imaginative God designed each of us in His image- and that realization cannot leave room for anything less than love. (Genesis 1:27 God created man in His own image, in the image of God He created him; male and female He created them.)


So what do we do? I think part of the answer lies in my history. I was mercifully given this gift of the example to love all people, and so it has become my life- but so many white people do not share my experience. I am continually blown away by the lack of black friends in the lives of so many white people. It's foreign to me to know many white people have never sat across a table and shared a meal and personal stories with anyone other than other white people. I cannot comprehend how so many of us as white people can express empathy for the trauma being experienced by our black brothers and sisters and yet never work to have a personal conversation with anyone of color. It becomes an over-arcing 'out there' and in order to bring any level of change, we have to bring it 'down here'. Into our personal lives. We have to be intentional. Nothing will ever change as long as we are 'us' and 'them'. But in order to collapse that divide, we have to dig deep into our humanity and get our hands dirty. We must be open and available to listen. Not listening with the intent to reply or somehow 'educate' black people on their experience, but to listen with the hopes of learning something. To listen to awful, horrible stories they've held close and not given over to us, out of fear of our continual minimizing or rejection. To listen to stories that might make us feel bad, guilty, embarrassed, helpless. And yet, listen anyway. Without running from the ugly feelings, or trying to brush them off of ourselves and onto a broken ideology that we purport not to accept. The greatest gift we have to offer one another is to listen to hear. To be willing to sit and hear the anger and grief and fear and not defend ourselves or try and explain away white privilege. To recognize that our experience has been blanketed by inherent protection- and we did nothing to earn it. To give space to the stories of pain that our black brothers and sisters have been longing to purge. It starts with us. Individually. Corporately. In our church families. In our work spaces. The black community does not need or want our pity, they want us to hear them. In hearing them, they are given back the mantle of humanity they have been stripped of. In hearing them, they are affirmed as worthy and seen. As people just like us; for that is who they are. Every one of us wants that. The black community has to scrape and claw and fight for it daily. How exhausted they must be. May it not always be so. We need to be a soft place to fall. We need to be willing to admit we don't understand, but are willing to listen. We must acknowledge our experience is not their experience- and that therein lies the struggle.

Nothing this horrific will ever be solved easily or quickly. But following the lead of God, and as it is written in John 15:13  Greater love has no one than this, that one lay down his life for his friends. Maybe, just maybe, this isn't always in reference to death- but refers to laying down the life we know and take for granted in order to truly love and stand in solidarity with our friends.