Exhausted

The system isn't broken; it does not exist.

For five years we have been looking for supports to help Benjamin develop as a young man and pursue some of his life goals. He is unable to pursue those on his own to the extent that all of us would like. He needs help. He needs safe environments, but ones that provide opportunity. He needs to feel valued. He needs to be able to pursue some of his goals.

Ben has a lot of independence, both of mind and of action. That independence often runs into very real limitations, some of which are internal to Ben and others of which are a very practical nature. He doesn't understand either of those sets of limits, and so he spends most days hopelessly frustrated. Frustration often turns to anger.

As part of the social contract we hold as a society, our family gladly pays to support others in our community who have needs: homelessness, financial distress, physical limitations, food security, public education, non-typical neurotypology, mental health, etc. In return, Benjamin deserves access to the supports he needs.

Except, there are no available supports for Benjamin. Every perceived opportunity meets a roadblock. "We don't have the staff." "Another resident is too similar." "Our programs aren't adequate." "We're concerned about managing his behavior." "There is no available space." "We really like Benjamin, but..." The list goes on. Oh, but we'll keep him on our "list."

In the meantime, in order for mom and dad to pay the bills, we work and Ben has an in-home personal assistant. Only the PA is so limited in what they can do for Ben that it's really just a placeholder. It's not good for Ben, and while it's necessary for us, it's not good for us either.

Ben can actually be a beast. Some of you know this, but for instance last week he had a major breakdown because we couldn't authorize a $600 payment for something he wants and doesn't need. Every limb on me is either bruised, bitten, or strained. In order to prevent him from hurting himself, me, or his surroundings, I had to physically restrain him until the police could arrive to provide a buffer. We are fortunate that we have a well-trained and competent police department.

Our son is like a freight train. He starts coming at us verbally with expectations and needs from the minute he awakens between 4:00 and 5:00 a.m. until he eventually goes to bed, sometimes after 10:00 at night. It's not limited to in-person, as he has mastered the telephone and talk-to-text. To direct him into something that he hasn't already decided to do takes a day's worth of energy, and only sometimes is successful.

It is exhausting. And there is no help on the horizon because there is no system to actually support someone like Ben. How do we know this? Because we have been told this now for five straight years.

I'm not writing this for sympathy. Parents do the best they can, which is what we are doing. I'm writing this so that you understand that people like Ben, and families like ours, live on little desert islands. Our life is dictated by a deletion off the 7th chromosone. It has a name: Williams Syndrome.

Before you get on your high horse and say that we control our situation, come live in our house for a couple days, weeks, months or 27 years. Even those with WS have different expressions of the deletion. We do what we can, but we can't do this alone.

Thanks to those of you who are our friends and Ben's friends. We do appreciate you. This tirade is not about you; it's about a system that doesn't even promise because it knows it will fail.

Some days, like today, it's just about too much. I am exhausted emotionally, physically, spiritually, mentally. There is no break. There is no vacation. There is no time off. Some days are less exhausting, but ultimately it always adds up the same.

There's really no point to this post other than the fact that we had yet another rejection from a potential support system today. And Ben has called and texted me, angrily, a thousand times about his lunch, his needs, his frustration, while I'm trying to work at my paying job (that I love, but has significant responsibility). And finally I gave in and said, "Just buy your lunch and leave me alone."

Some days that's what I long for the most; something for Ben to do, someone else to support Ben, so he will just leave me alone. Of course I love my son. Of course there are moments of joy with Ben. But mostly my heart aches because we cannot see the way forward for Ben, or for us, and we can't go on like we've been. 

Illinois is one of the worst states for said supports. We know this. We knew this when I took the job with the church that brought us here. But here we are. We could move. Of course we could move. So easy, right? No energy to move, to find a new job, to make new friends, to recreate our identity yet again in a strange place. 

If you read this far, you really must be one of our friends. When we talk about state budgets and policy issues, we're not talking about an idea. We're talking about people. People like Ben who need their village to come up big so that they can live a bigger life. We can do better, and I know a lot of "industry" people who are really trying to do better. Thanks to each of you! But better is not coming quickly enough for us. 

And that leaves me exhausted and sad. Especially today. 

We ARE Together

Words for Gathering on Sunday, November 8, 2020

Here we are again. A significant thing or two have changed in our world in the week since we last gathered for worship. And yet much remains the same.

We long to gather in person, 

To share a hug or handshake,

To raise our voices in harmony,

To feel the energy of our spirits co-mingling,

To laugh with joy,

To weep with compassion.

But here we are, resigned to reach out through the digital network,

Protecting one another,

Honoring health and well-being,

Trusting God’s grace

To keep us connected

In the midst of this unusual season.

We ARE together, 

Bound by the love of Jesus,

Compelled by our common commitment to each other

And our sisters and brothers in humanity.

We ARE together,

Nurtured by the Holy Spirit’s power,

Called to be present,

Free to celebrate who we are.

We ARE together,

Created to live in harmony,

Building new worlds in Christ’s name,

Transforming darkness into light.

We ARE together,

Extending God’s generosity

To ourselves,

To one another,

To the world.

We ARE together,

To worship and rejoice.

Please pray with me.

Bind our hearts, Lord Jesus, 

first to you, 

then to each other and 

ultimately to the world.

We are here to pray vigorously,

To worship earnestly.

Reveal yourself to us 

through common words,

Familiar melodies,

And simple prayers.

We welcome your guiding presence.

 

Amen.

(Written for worship at the Highland Avenue Church of the Brethren, where we continue to meet remotely for the protection of our congregation and community. If these words are useful to your worshiping community, feel free to use them. If you do, I'd appreciate you providing attribution and letting me know.)

The day began with so much promise

 The day began with so much promise.

Coffee steam rising from the cup,

a special cup for reasons unspoken.

Sunshine peered around the curtain’s edge

fattening squirrels skittered about the yard.

Promise, behold the day!

A few errands, tasks left cautiously to the side until they could be abandoned no more.

Pick up. Drop off. Exchange some hard earned credit for this, and that.

The rattle has been incessant, even after long hours of work

to strengthen the suspension of an old Pilot.

Plastic. A cover not secured, resonating with every movement of this massive machine.

Easily set aside. Quiet order is restored.

Paint has been peeling for at least three years. 

First a little, soon a lot.

Wood around the large front picture window is exposed, grainy, raw.

Scrape. Sand. Wash.

Primer soaks, caulk oozes into corners awaiting the chilling rain.

It’s loud in here. 

Noise is reaching a fever pitch. 

Politics seem louder than the screamo festival I attended years ago with my teenage son.

To endure the noise may be love, or it may be our intent to survive.

Is it enough to just survive? The day began with so much promise… 

Positivity used to be a secret power that we unleashed.

Glass cathedrals echoed, “positive thinking is POWER.”

27% is a catastrophic warning.

Positivity: frightening, positively heartbreaking.

Broccoli soup is the evening bowl.

Table thanks flow easily over steam that rises,

but what of the millions that have no heat?

Within the physical depths

there is a lingering pain.

Anxious organs wait to snap.

My soul is enshrouded in a misty, damp chill.

What if we can’t right the ship?

When the reflection is unrecognizable, who have we become?

Who have I become?

Once the switch has been disconnected, flipping it doesn’t mean a thing.

Are we too late? Did we miss the promise of the day?

Hope declares that we are not done yet.

Faith intones a power greater than our own.

Grace compels us to try again.

Steam rises. Tonight's tea.

Decaffeinated. Herbal. Comfort.

Still. 

The day.

So much promise.

No Going Back

 I originally posted this on Facebook on October 5, 2020. 

I keep seeing posts about "getting back" to something that supposedly was "better." Back to an America that was "better." Back to an economy that was "better." Back to a discourse that was "better." Back to .....

The reality is that there is nothing worth going back to. The longing for a return to something that was familiar and that we enjoyed is nostalgia; it doesn't mean it was "better."

The God I serve is a God who calls for a continual unfolding. Things will not ultimately be "better" until God makes it so. And the fact that it has yet to be made so means that nothing that was before is the type of "better" that I want to return to, or am called to return to, or believe in returning to. It doesn't mean it wasn't good; it's just not the ultimate good.

In the meantime, what we must aspire to is a new future in which humanity both intrinsically and extrinsically demonstrates that we recognize the uniquely powerful responsibility that we've been given for one another and for the world which we inhabit.

So far we've done a pretty lousy job with that responsibility. Neither democrat nor republican is the savior we seek. We each must take action toward a more responsible future. We must care for one another and care for our environment. Our care will never be perfect, but we can do better, so much better. We need leaders, too, who care and will empower us to care.

We can start by centering not on ourselves, but on the other.

What will improve the lives of those around me?

What can I do to make life better for someone else?

What is needed from me to care for God's whole creation?

What habits, attitudes, prejudices, insecurities, and fears do I hold that I must confront and repent of in order to serve the well-being of those around me?

Pursue these things. Then perhaps we'll experience those better days that we so long for, not by returning to some nostalgic past but rather by living into our responsible, hopeful future, together.

On Vocation, Gifts, and Calling: Part 1

Recently I've been thinking a lot about vocation, the deepest invitation to participate in God's mission in the world in meaningful and faithful ways.

The pursuit of vocational clarity has actually been lifelong. From the first inklings of a call to ministry while portraying the prodigal son in a fourth grade musical through a change in college major to more recent retooling for nonprofit and nursing home administration, I've sought to align my employment with God's blessing of who I am (vocation). 

Vocation still remains somewhat elusive, and I was compelled to explore the question further during the recent five year ordination renewal process in our denomination. Ordination in our tradition is understood as vocation tied to employment; to be ordained one must be personally called by God, affirmed by the church, and have a functional position through which to live out that call.

For some ministers the requirement to link vocation with employment can prove distressing. At this point in my life, my call to ministry is inherent in my work, but not explicitly linked to ordination. As a development and fundraising officer in a Christian retirement community, my work is about raising money. As a minister, that same work is about tending people's soul journey. It always is. 

The need to once again affirm my calling to ministry, show my continuing education, demonstrate vocation linked to employment, and renew the covenants which I originally made with the church over 27 years ago might have seemed like a no-brainer to many. In fact, many pastors and ministers treat the renewal process as just one more hoop to jump through in order to maintain their status. I know, because in the past I have, too.

This renewal period, however, led to harder discernment on my part. What is my vocation? How is God calling me to be of use in this world? What are the deeper passions of my life? Where might I best live out my faith, and under what circumstances?

In addition to those somewhat esoteric questions, I also was confronted with some more specific, contextual dilemmas. Is the Church of the Brethren as it's currently focused a tradition that I can continue to align with? Given my experiences in and treatment by leadership in the church, is this a body that I can safely continue to be accountable to? Have I failed God and the church in ways which would preclude the continuation of my leadership?

These questions, coupled with ongoing efforts to expand my skill set and employability, compelled me to reflect intensely on the ordination review process. The unsettledness in my spirit needed to be addressed before responding to the rote inquiries of the renewal process. It would have been easier to simply check the boxes, but it wouldn't have been faithful.

After a long period of procrastination and discernment, I did complete the required documents. I also included an unsolicited letter detailing some of my wrestling. Over the next few blog posts, I will share the essence of that letter and further explore questions of vocation, gifts, and calling. 

Faith for me is about surrender and alignment. I surrender to the will of God and seek, to the best of my ability, to align my life with that will. Sometimes I fail completely, or fall short in part. Sometimes those shortcomings are a result of sin. Sometimes those shortcomings are a lack of adequate discernment. Sometimes those shortcomings are simply the hidden mysteries of God, into which I move even without absolute clarity, so not shortcomings as much as faithful stumbles. 

In the end, however, I constantly strive to know the call of God on my life, to recognize and cultivate the gifts God has blessed me with, and to pursue meaningful activities of work and ministry. Whether I can see clearly or not, God remains constant and clear. And so God gives me the faith, courage, and hope to carry on.