Tired.

Facebook wanted to know what's on my mind.

At the moment I'm just sitting here being verbally abused by a 25 yo son who has no genetic ability to reason and refuses to do the things he needs to do to be safe and well (you know, like not go outside in a thunderstorm during a severe heat warning).

Lately, though, I'm feeling an exhaustion like no other exhaustion I've ever felt, and not the good kind.

I'm not sharing this for sympathy. It's nothing new. Tired's been piling up for years. It's the daily life we have.

        But here's the thing.

If you think you "know" what other people's experiences are, like white folks knowing black folks' experiences, or single folks knowing parent-with-children folks' experiences, or urban folks knowing rural folks' experiences, or neurotypical parents knowing what it's like to be a special needs parent, or doctors and nurses caring for Covid patients when you're not even a medical professional, or ..... then you aren't really paying attention.

If your m.o. is to evaluate and judge people whose experiences are vastly different than your own based primarily on your own experiences, then you have a lot of growing up to do. If you think that you "know" something about someone's situation but you've never walked a mile in their shoes, let alone taken a stride nearby, then your privilege is definitely showing.

You may dismiss or mock me and my white male privilege for being tired, and I get it. Really I do. Plenty of people have told me to "get some rest," "take care of yourself," or just "suck it up." But before you do, maybe you could come lace on my shoes.

If your experience or ideas require you to invalidate another's, your understanding is wrong. And if your primary way of moving around in the world is with disdain and dismissiveness toward people and movements and principles that you don't even understand, your memes aren't worth the bytes they're lighting up.

 As for me, I am tired.

Tired.

    ... of Covid-19. Tired of people dying.

        ... of threats. Tired of self-righteous saviors.

            ... of incompetent leaders. Tired of politics.

                ... of self-interest. Tired of broken systems that refuse to go.

        

                    ... of being angry. Tired of being scared.

                           ... of my Christian faith being used as a weapon.

                                ... of patronizing do-gooders.

Tired of being tired.

And yet, my exhaustion pales next to how tired those whose very lives are always at risk must be. I can only imagine, and learn, and show compassion, because I will never know. I can contribute to what changes I can, and refuse to leave those who are weary to just make it on their own.

I may be exhausted, but there's still work to do. It will be easier if we do it together, especially in these days with physical distancing and unclear futures.

What's REALLY on my mind, Facebook? All these things, and more.

But right now I'm too tired to write another word.

You don't understand, and I don't either

Today is day 2 of week 6 of me and our son Benjamin practicing physical distancing. My wife's not far behind, checking in at the start of week 5. Our two other young adult children have had to adjust, too, one moving home for web-based college courses and weekends as an "essential" worker, and our other a full-time "essential" worker. Both are retailers that happen to sell groceries.

This whole Covid-19 thing is hard for everyone. Many of you still have to risk your health and the health of those you love in the workplace. You do this in service to your fellow humanity, and we're grateful. Many of you have suddenly become work-from-home employees. Within your personal family space you're now expected to carve out protected turf and hours for your employer. Many of you are unemployed and are spending your days navigating systems that were not designed for the stress of this time: unemployment, health insurance, debt load, etc.

Many of you have become instant home-school parents. Coupled with the above realities, it's really too much to expect any reasonable human to manage. Some of you are suddenly alone, distanced because you are single, or sequestered because you live as part of a particularly vulnerable community. Too many of you are facing long days with partners who are uncaring at best, hurtful at worst.

Some of you have lost loved ones. We've all lost admired ones. Some have been ill and have recovered. Some are ill now and fighting, struggling. We all have reason to wonder.

We're in these strange and anxious times together. Whether you believe that Covid is "real" (and I still can't conceive of why anyone wouldn't) or are convicted that it's some great political scam being pulled on the globe (check your sources, please), we all share in the frustration, awkwardness, and tension of the time.

Most of us have some mental frameworks to apply to this crisis. Those frameworks may be inadequate. They may be unsatisfactory. They may not be the "right" ones. But as neurotypical folks, we have ways of making uncomfortable sense of what's going on. 

My son with Williams Syndrome does not have those mental frameworks. The foundation for those frameworks is literally missing from his gene array. His gapped-out seventh chromosome mind has nothing to hold these days together with, and the things that typically provide a substitute for that logical shape are essentially taken from him. Physical distancing has eliminated the few "tricks" we have to keep the peace and provide at least a limited amount of focus for each day.

What's that look like? Well, for the last three mornings it looks like 4:30 a.m. attempts to head outside in order to watch the workers renovating a nearby building, followed by repeated battles to keep him safe and redirected throughout the day. The battles are epic: he has a colorful vocabulary and somewhere along the line has learned effective insulting. He's threatening, and there's enough history to know that he's not just bluffing. His head-strong willpower is fueled by a very real inability to understand any logical argument. His frustration leads to anger leads to..... well, lots of things.

Three days ago the police met him on the street. Through a story told by Ben and an interpretation rendered by the officers, he ended up in the back of an ambulance and bay 14 in the local ER. None of it was remotely necessary, and with Covid 19 on the loose, fairly troubling. But this was the result of an anxious and confused adult who doesn't understand what's going on. You decide whether I'm referring to Ben or the officers.

The truth is, I don't understand what's going on either. I'd love to write like so many encouraging blogger-parents of kids with special needs that the joys far outweigh the trauma, that I have learned the intended lessons of grace, and that somehow I have discovered powers that I never would have known I had if it weren't for parenting Ben.

Sure, some days I feel that way. But not today.

Today I see that my mental and spiritual frameworks don't satisfy my need to make sense of our family in the midst of this crisis. I realize that pandemic distancing mostly reflects a daily reality for Ben and me and reflects many points in our family's social history. Uncovered within me is a level of frustration that has the potential for violence. Today my compassion and patience have very real limits.

I am angry. I am sad. I am overwhelmed. I am exhausted. And largely I am, like a lot of parents with developmentally disabled kids, lonely.

I'm not writing for sympathy or for "help." I'm writing so that you who have no idea what it's like to parent a developmentally inhibited adult child can hear the raw and painful truth. I'm writing so that those of you who are facing your own new challenges (and maybe even demons) during these days will have the courage to recognize your (ugly, confused) self and trust the truth of your situation. I'm writing so that we might consider how our own privilege and perspective is never definitive for someone else, but is imperviously representative of the truth we carry in our own lives.

For my fellow sisters and brothers in the Judeo-Christian faith story, this is a Psalm 22 moment. Please don't try to religious jargon it away. Yes, I have faith and a relationship with God through Jesus. It's a real one, and a lifelong one. But it's messy, and today that's the best I got.

Sometimes the hardest thing to admit is that we don't understand, that all the books we've read, lectures we've attended, sermons we've internalized, podcasts we've listened to, classes we've taken, and experiences we've had haven't actually prepared us for the physically distant space we're in. 

Right at this moment, that's exactly where we are.

Ben doesn't understand, and I don't either.  

And that is hard. 

And that's OK. It's all we've got today.

I would be weeping

Today, for the second day of a three day party marathon, we celebrated our son Ben's 22nd birthday. As an adult with Williams Syndrome, a genetic deletion that makes many aspects of daily living a challenge, Ben can at times stretch his father's patience and stamina.

But Ben is a beautiful human being. He is the friendliest guy you'll ever meet. His smile is amazing. His empathy is deep. His ability to remember you is nearly unmatched. He sees you as a friend, instantly and forever. He is a lover of people. 

I am so proud of Ben: all he has accomplished in his 22 years, the hearts he has softened, what he has learned, how he has grown, the dreams he has for his life.


As I've scrolled through headlines today, I have been struck by a pretty simple question: How do the parents of our current political leaders see their children, these white men in power, making decisions to further disenfranchise the poor, to obscure the rights of so many people, to dictate life choices for women and LGBTQ friends, to recklessly destroy our environment, to pursue wealth at the expense of others, to threaten our world through state-sanctioned bullying, and to disregard the health needs of millions of Americans.

If these were my sons, I would be weeping.

As a father I am humbled to have an eldest son (and two other kids as well) that understands the most important aspects of life: to love, to share, to look out for one another, to smile, to remember, to befriend, to care.

I would be weeping; but when I see my child, all I can do is smile.

Oh, Say. Can you see?!?

Yesterday I was standing in a gym surrounded by amazing, brave, and loving athletes and their families, ready for a day of basketball.

As we focused our attention on our nation's flag and anthem, I could not ignore the painful irony that this week we will inaugurate a president who shows willful disdain for the very folks who are the best of what these symbols represent.

Also recited in that gym,

the Special Olympics pledge is 

"let me win, 

but if I cannot win let me be brave in the attempt." 

I would love for our son to look at the flag and hear the anthem which calls forth this courageous and honorable endeavor and know that we actually mean it, but instead, what I see and hear is a depraved PEOTUS making fun of the people I love the most, and a cadre of defendants rising in heartbreaking defense.

In spite of all this, we will not surrender hope. 

The love and bravery that filled that gym yesterday will remain undaunted. 

It is love and courage like Jesus - 

big love, 

unconditional acceptance, 

courageous inclusion, 

self-sacrifice, 

quiet power, 

all accompanied by enormous smiles.

There is no coercion. 

There are no threats. 

Bullying is wholly absent. 

Self-aggrandizement is nowhere to be seen. 

Indignant self-righteousness is mute. 

Personal preservation yields to the whole.

Teachers, coaches, volunteers, parents, friends and athletes: 

these are what is good about our world today. 

It is this good which will prevail. 

We are not going away. 

We will not be dismissed. 

We will persevere, with or in spite of or in the face of those who hold structural power.

We will win, and if we cannot win, 

we will be brave. 

Which means in the end we cannot lose the things that really matter.

Oh, say. Can you see? You will.

(originally published as a facebook post on January 15, 2017)

The myth of "self care"

For decades, well-meaning people have told me to take care of myself. Often it's the common, innocuous parting wish, simply stated "take care." When I am not well, it's offered as a more immediate concern, "take care of yourself," meaning "do what you can to become well again." Other times it has been offered as a philosophical admonition to participate in ongoing activities which signify self care: eat right, exercise, rest, love, participate in life-giving activities, pray, etc.

This latter instruction has actually become a nauseating mantra, popularized I think by the baby boomers, but readily adopted by most generations. Not surprisingly, it has also been adopted by the church.

Perhaps the most frequent refrain that is repeated to pastors is "take care of yourself." The line of thinking goes something like this: you have to be responsible for your own well-being, ALL aspects of your well-being. If you are responsible and take care of yourself, you will be a good pastor; if you don't, most likely you'll end up a burnt out, failed, or fallen pastor.

Same mantra goes for parents. "Take care of yourself" so that you can support your spouse better and be fully present in your children's lives. And it goes for us as employees as well. "Take care of yourself" so that you can be at your best when the pressure is on in the workplace.

I believe this sentiment. We need to have self-responsibility. We need to take action in our own lives to support our own well-being.

But I also don't agree with a word of it. Nothing I do is ever isolated enough to consist solely of self-care. If self care were to be true, I wouldn't be married, wouldn't have kids, couldn't be part of a church, couldn't pursue gainful employment, and couldn't enjoy avocations. Unless of course I'm an entirely narcissistic person, which no-one who ever tells me to practice self care would endorse.

The truth is that I get to make very few choices based exclusively on the need for self care. When I make food choices, because I share meals with my family on a daily basis, they are actually family decisions. When I choose to go for a run, I do so with a keen understanding that this choice will affect the daily rhythm of my family's life. When I say I need rest, someone, somewhere is not getting time or attention that they need equally significantly. If I go on retreat, I am shifting the burden of daily responsibility to others.

As the father of a special needs child, now young adult, the idea of self-care is almost laughable. When I run out of energy to deal with Ben, I can't just "turn him off" and go on a retreat. At best my wife and I can secure a respite caregiver to spend a few hours or even a few days without him, but during that time we'll receive at least 50 phone calls from him and live with the lingering fear that something will go dramatically awry. When it does go awry, there is no choice but to deal with it, irrespective of my need to "take care."

As I said earlier, the church repeats this mantra to its leaders all the time. It's one of the cardinal rules of pastoral ministry and church leadership. "Take care of yourself." What I've seen most often, however, is that the church's needs almost always supercede any effort a leader makes at "self care."

What do I mean? Let me count the ways. Financially. Take care of yourself, but we will pay you only what we can, not what you need. Time. Take the time you need for yourself, but only after you have met our needs, and only until we need something else from you (pastors "on call" during vacation). Family. Make sure your spousal relationship is strong, but don't forget you're married to the church. Don't neglect your children, but don't forget they're in the spotlight right alongside you. Spiritual life. Pray, read scripture, retreat, but mostly when it's convenient for us and in the end for our benefit. Behave. Always maintain composure and professionalism, even though the church will protect people who behave atrociously toward you. Play nicely. You must "take care" so that you can function transformatively in an organization that refuses to deal with its own shortcomings, pathologies, and sin.

I'm sure there are more.

I recently wrote a blog post about care. You can read it here if you haven't already. But it's not self care. It's community care. It's friend care. It's the grace-filled care of God.

We DO need to find better ways to take care, to take care of each other. Instead of a congregation telling it's pastor to use his/her vacation, how about building a strategy with the pastor so that the vacation is actually refreshing. Give them extra money to spend. Make sure there are alternative pastoral coverage people in place. Ask them to turn off their cell phone, and covenant not to leave urgent messages. Plan to complete work that needs to be done while they're away, not just put if off to double the load when they return. Mow their lawn and feed their pets. Stock their refrigerator for when they return.



What ways does your church care for its pastor/s? What other ways can you think of? I know some churches are working hard at shared care already. What can we learn from you?

Like I said, my beef with self care is not intended to get us off the hook for making better choices and following through. But I do think we need to examine how our ideas of self care are embedded in our culture's selfish and self-serving defaults, and how self care is at odds with a Christian perspective on relationships. Rather than a call to abandon self care, there's an opportunity for us to pick up shared care. There are lots of words for these alternatives to self care: compassion, friendship, covenant, mutuality, community, love.


It's a very rare day or hour that I feel capable and privileged enough to practice self care. The rest of the time, the vast majority of the time, I absolutely cannot do it alone. I wish we could stop pretending that we can take care of ourselves. I pray that we will stop putting the pressure on one another to take care of ourselves. Instead, let's take care of one another, extending grace and caring support so that together we might be well.

Where love is

Our son Ben is 21. He is a joy-filled, loving, social young man. His heart is as big as an ocean. He wants to help people. He wants to serve.

For the last two years he has been looking forward to a week-long volunteer workcamp. In 2015 he registered to attend, but the camp was cancelled due to low enrollment. This year he and I and my dad spent a week at Camp Mardela in Maryland, working alongside other participants in this intergenerational activity to get the camp ready for its summer ministry to kids.

Three generations working together

Ben was in his glory. He helped us split wood.

Ben and his grandpa!

He raked leaves.

Ben loves to rake leaves!

He helped clear trails, paint buildings, and deep clean the kitchen. He participated in food preparation and cleanup. He prayed for a meal and read scripture for devotions one evening.

And Ben did what he does best: he made new friends. Ben is more than just outgoing. He is socially uninhibited, a trait consistent with his genetic makeup known as Williams Syndrome.

Ben also got tired and somewhat ornery. By Friday afternoon, the fifth full day of the camp, his self-control was out the window, and my relatively small attempt at setting healthy limits and redirecting Ben quickly devolved into an angry tirade by our usually joy-filled Ben.

Ben's outbursts are not unprecedented. Because the area affected by his genetic deletion typically provides self-regulation, he doesn't have all the tools he needs to use good judgement, make logical decisions, and connect behavior to consequences, especially future outcomes. When he encounters such a situation, sometimes his frustration boils over, and it's not pretty. While not frequent, such violent scenes repeat with periodic regularity.

When his anger peaks, Ben reveals a very colorful and hurtful vocabulary, no doubt picked up in high school hallways. He becomes physically aggressive, kicking, punching, scratching, and throwing anything he can get his hands on. He is strong and persistent. These are scary moments.

As Ben's parent, these tirades can be extremely disconcerting and threatening. The amount of energy required to stick with Ben through one of these instances is immense. On the last day of a physically strenuous workcamp, my energy was already depleted. Since we were at a camp, my strategy to deal with Ben's rising anger was to get him outside and move safely away from him until he could escalate to his breaking point and ultimately return to what typically follows - a contrite, compassionate young man.

There were six other youth ages 13-17 attending the workcamp, five from one youth group and the youngest from another church. At the beginning of the week I had briefly introduced them to Ben's tendencies and spoke about Williams Syndrome. They were friendly and welcoming to Ben, and Ben has never met a human being he didn't want to be friends with!

I was unprepared, however, for the level of maturity and caring from these young people. I know good kids; my wife and I have a teenage son and daughter in addition to Ben. But I also know that kids can be unpredictable. These kids were both those things: good and unpredictable.

As Ben sat alone at a picnic table working through his anger, first one, then another, and then finally the whole group of youth gathered around him and "loved on" him.

I was overcome by tears. These amazing youth surrounded Ben with patient support and caring. In those ten or so beautiful minutes, they demonstrated everything anyone ever needs to know about Christ-like love and compassion. Their simple act of friendship lifted Ben, and broke me.

This is what welcome looks like. This is inclusion. These are simple acts of kindness done toward the least of these. This moment is a human triumph. Here there are no "special needs," only a friend in need.

Thanks, kids, for relieving a weary dad, and for being a friend to Ben! Thanks for sharing the love.

Maybe the rest of us can go and do likewise.