Gaudete Sunday, 2018m

In 2012, the year we finally had to place Maria in her current residential program, she was not able to come spend Christmas with us at home. Instead, on Christmas Day, we took her presents and went to spend the day with her at BARC.  She was into basketball in those days and she and I had a running argument: as we shot hoops we bickered endlessly about who was Little Bow-Wow, and who was LeBron. LeBron was playing with the Miami Heat and we were both whooshed by him, each of us wanting to claim his name for herself.  It was not the day we would have hoped for and it turned out to be just fine. The weather was the most perfect SoFla weather imaginable on Christmas Day: sunny, mild, a cool, gentle breeze blowing.  It was so good to be able to reach out and hug that kid who still had (and has) the capacity to take my breath away in the fullness of her beautiful and miraculous self.

This year, with the distance that separates us and our girl’s continued struggles, we will not get to be together on Christmas Day. I head to Lauderdale for a very quick visit later this week. Her presents are wrapped and ready to go with me. I’ll deliver them to the social worker at BARC who will see to it that Maria gets them on Christmas morning. One of the gifts I will carry is a new electronic picture frame. Sherod has loaded over 150 pictures in chronological order—the story of her life since the day we got custody of her in México in 2001.  On Wednesday, the day I get to spend with her, we will have some time to look at the pictures together and tell stories. Even if we don’t, Sherod and I have had the frame up for the past 2 weeks and I have stopped often to look at all those snapshots of her life—and ours.  

The pictures remind me that Sherod and I have tried awfully hard, been so determined to do everything we could to give María the best life possible. At one level that is no consolation—life continues to be grim for our girl, with no end in sight. At another, though, I can see moment after precious moment, when, for however briefly, María has known herself loved and I have gotten to experience grace beyond counting mothering her.  Sadness? Yes. Regrets? How could I regret love?

I sit writing this on Gaudete Sunday, the Sunday of Rejoicing, as Advent wobble and tilts towards Christmas. Tonight, my dad, Sherod, and I had dinner as the flames on a pink and two purple candles of the advent wreath on our dining room table burned steadily.  We share more meals with Dad these days and last night, we had also eaten together, though at the kitchen table.  There, I had candle light, but also the fun, silly light of a small string of star shaped lights I picked up at Michael’s earlier this month. I’d wrapped it around a vase and filled the vase with greenery.

I’m back at that table now and if I look outside, or into our living room, I see lights as well—the plain white lights on the Christmas tree inside, Sherod’s tomato cage forest outside. Each year, he wraps quantities of colored lights around tomato cages and sets them up out by the edge of the front garden. Some of them hang low from a tree and if there is a breeze, they sway gently against the dark darkness of a country night, all of them together a kind and persistent insistence of joy even in the midst of sadness. Though we don’t use María’s first name, Luz much, each small light, or luz in Spanish, that shines in my home this year is a reminder not just of the “Light that is come into the world,” but of my daughter as well.

Sherod’s forest of tomato cage trees

  I listened to a podcast yesterday that included a story about a person who worked as a counselor with people trying to recover from heroin addiction. The counselor explained that in her experience, as heroin addicts finished getting through the worst of their withdrawal symptoms, they seemed to find great comfort in empty spaces. She wondered if those empty spaces represented the hard truth that addiction brings with it enormous, sometimes catastrophic loss. Could it be, she said, that standing in a room with nothing in it might be a way of acknowledging the grievousness of such loss?  I don’t know. But yesterday, it gave me a way to understand why I have so strongly resisted pulling out all our Christmas decorations. The Christmas tree just has lights on it, along with  3 ornaments I was given this year. The advent wreath and a Christmas-y table cloth and placemats are about as much as I can bring myself to have out in acknowledgment of the season. My girl is not here and everything else feels like clutter.

And here’s the thing–the miracle, actually…the emptinesses of this Advent have been startlingly rich.  I’ve had time to spend with friends. Time I didn’t spend in the busy-ness demanded by our culture has been time I’ve gotten to do a bit of extra work with my new parish, work that has delighted and amused and been wonderfully meaningful.

And today, after church, I led a vestry meeting that ended with some social time to welcome incoming vestry members and bid farewell to the ones who are rotating off. As we were sitting around the conference table shooting the breeze,  I heard someone come up to the door behind me so I turned around to look. One of the women I worked with at my previous church had come to bring me a gift. It’s a gift she and some of my parishioners made for me and it’s hard to describe what it is except to say it is part of one of my most favorite presentations from the Catechesis of the Good Shepherd.  I could not have been more surprised, nor could I have been more joyfully thankful than I was at that moment—for the gift itself, for generosity of time on the part of the people who helped her make it, and above all, for my friend’s beautiful heart in bringing such a gift, that in its own way is also all about the light.

It is true that empty spaces can offer us the consolation of being real about all that has been lost. And. And it is equally true and life-giving to remember that the emptiness can be filled in the most unexpected ways and most surprising moments. So yes. It is Gaudete Sunday. 

Preparing to prepare

Labyrinth in the Chapel

Holy Comforter will offer a series of intergenerational programs on the Sundays of Advent.  On the first Sunday, participants will have the option of walking through a labyrinth in our ever-so-beautiful chapel. If they prefer, they can help write a prayer for each of the Advent Wreath candles. Both are quiet, gentle ways of entering into this season where darkness melts into light.  For the second Sunday, we we will work on a collaborative art project that explores words used to describe Mary. Just the colors we will use for the project are vibrant and luminescent.  I smile every time I look at them.  The third Sunday is tree-trimming time, and for those who prefer something more quiet, the materials to make Christmas greeting cards for the peoplea we serve through the food pantry and the Communities of Transformation program.  And then, on the fourth Sunday….There will be good hot cocoa with peppermint sticks, marshmallows, and whipped cream, and our organist/choir director will graciously gather us around the piano in our parish hall so we can laugh and sing things like ‘the weather outside is frightful.’ 

The table is set for our last two listening gatherings

These first two Sundays, I will also wrap up the “A Time for Listening” program which has been a marvelous way to start getting to know the people Holy Comforter, the memories, the hopes, and the dreams that are harbored in our parish.

Our church, like so many others, faces all the challenges of our denomination: an aging congregation, the loss of some of our financial base, a neighborhood that keeps changing in ways that feel bewildering sometimes.  Precisely for that reason, I am convinced we have to take the time to prepare to receive the Word made Flesh with our whole self–muscle and bone and voice and the steps we take carefully on a labyrinth journey and the feel of the hot cocoa sliding down our throats, and with eyes able to feast on rich, gorgeous color.  I have spent the day preparing to prepare with my new faith community–my body tells me so with some soreness.  It also tells me, with the little skip my heart takes, that we are about enter to into enter Advent, my most favorite season of all…

A face of the ACA aka Obamacare

Dad and little Tux

Here is one very small, very personal, reason why this matters quite desperately for my family.

In 2015, my father was living in Panamá when he came to spend Christmas with Sherod and me. It only took a couple of days for us to realize that at 89, he was getting quite frail. It would not be long before he’d need more help than he could get in Panamá. With my brother, Hans, living in Belgium, and my brother Nils in the UK, none of us had the flexibility to provide him care on on ‘as needs’ basis.  

Dad, Sherod, and I decided to find out what it would take for Sherod and I to sponsor my dad for residency so he could live out the rest of his days here in Lowndesboro. We learned three things very quickly:  1) Because there had been no previous conversation of a move like this, he could stay in the US and apply for a change in visa status from tourist to permanent resident.  If he left to apply for the visa from Panamá, it could easily take 5-10 years before he’d make it to the top of the waiting list.  2) Dad could not apply for any public assistance; for 5 years, Sherod and I would be completely responsible for any expenses he could not cover himself. After 5 years, he could apply for citizenship and qualify for Medicare, thus perhaps lessening my husband’s and my financial exposure.  3) Because it had been launched a few years before, as soon as he got his green card, Dad would be eligible to participate in Obamacare, though with no subsidies or tax breaks.  

We completed his application for residency, held our breath, three adults figuring out how to live together. I left home at 18 and only returned home for one or two week visits so Sherod and I were both strangers to my dad.  We prayed he’d have no medical emergencies.  Every part of his life back in Panamá, including his beloved dogs, Pía and Mouse, went into what felt like a state of suspended animation while we waited for his application to be decided on. And then, in May of 2016, his Green Card arrived.  Immediately, he applied for insurance under the federal marketplace program because Alabama had deliberately chosen not to have a state marketplace. The insurance wasn’t cheap–$730.00/month plus additional for dental insurance. Additionally, though he’d start paying in June, his coverage would actually not start until August 1.  Of course, literally, the week before his coverage began, Dad got sick enough to land in the hospital overnight. The bill came to $15,000. 

By 2017, the premiums had jumped to $1032 per month.  This year, they increased to $1325, or half of his total monthly expenses. It is tough—the bottom line is my dad has funds to cover his living expenses for about another 10 years.  We don’t have any illusions—under Trump, we do not expect that my dad will be given citizenship so Medicare is not an option.  Fortunately, this year, the monthly premiums only went up by $52.00 so that gives us a little breathing room.  But we continue to wait and watch as our current leadership does its best to dismantle Obamacare without having a viable alternative in place, especially \for someone like my dad.

Sherod and I are in a double bind.  Luz María is in a program that costs over 150,000 a year because she needs such intensive care. It’s a program funded by Medicaid.  As we listen to Mitch McConnell say that Medicaid and other public assistance programs need to be cut to manage the national deficit, we talk about the alternatives if the program is cut and we are left responsible for our girl.  The only thing we have decided we could do if we had to bring her to live with us is keep her drugged right up to the level of vegetative state—she’s simply too dangerous otherwise.  On the days we are brave enough to look at the entirety of our situation, we are aware that we could come to a time when we would be financially responsible for both my dad’s medical needs and María’s life needs.  We have had the conversation more than once. We have never found a way to make the pieces all work financially. We are fortunate to be able to save money every month. The cost of living in Alabama is certainly lower than in Florida. I continue to work and retirement is not on the horizon any time soon for me.  And we choose not dwell on the grim possibilities we face. I am too grateful for today.

But I will tell you as honestly and clearly as I can: there are some things terribly wrong in this country. I recently watched a program where a bottle of wine was easily auctioned for $500,000.  Five. Hundred. Thousand. Dollars.  A painting was sold for $90 million dollars in another auction that took less than 5 minutes to close. Yet an old man who I love beyond words may find himself without healthcare insurance by the end of next year.

Only once since I turned 21 have I not worked–and that was for 3 months after we adopted María and I quit my FedEx job to tend to her. I refuse to describe myself in some kind of false binary category—socialist or capitalist, Democrat or Republican. What I want is something that works for the largest number of people possible in a way that respects everyone’sdignity.  I understand we need a shared sense of  responsibility and that we must demonstrate a willingness to keep managing the tension between having a social safety net and taking personal responsibility for our lives. I’m not interested in blaming. I want solutions. And I know as a nation we are capable of figuring out a way forward with health care and some of the other large challenges we have ahead.

In the meantime, I ask as many of you as are willing to copy and paste the comment that goes with this post into your Facebook page. People like Sherod and I, and my dad, and my daughter, are the faces of Obamacare. 

Thanksgiving 2018

This Thanksgiving Eve, I have much to be deeply grateful for. It is also a time when I miss my girl something fierce. In the next few weeks, her behavior support team will try a new intervention that is tough, tough enough to have to go through an external review process before they can implement it.

Her new ways of pulling law enforcement and child protective services into her orbit when she’s out of control put her and the team increasingly at risk for the worst unintended consequences imaginable. I can’t spend much time thinking about the bleak options we have nor about what it will be like for her when/if the new intervention is put in place. I know that the best years we had with our María were ones when we used a similar intervention. I can still go back and look at the frequency data we kept for her during that time, trace the trend line that improved dramatically very quickly once we put that intervention in place. I just had so wished and hoped that the work we did then would stabilize her behavior more permanently.

So tonight I miss my daughter and am grateful that my spouseman made this little video that makes me laugh. I will stay busy and I will welcome our friends and family to the feast tomorrow. I am thankful for love. Happy Thanksgiving, my friends.

You’ll have to take my word

Last night, I had another of my listening gatherings.  Seven down, 2 or 3 more to go. People have been generous with their stories, with their time, with their willingness to start considering new possibilities for how we move into the future.  But it had been a long day. A parishioner with nothing and nobody to call her own died unexpectedly and we are scrambling to do right by her. One of the guilds had their monthly meeting and had asked me to be the presenter. I’m finishing up all the plans and preparations for Advent and Christmas, both the ones at home and the ones here at church.  And my self is catching up, still, with the emotional roller coaster of the weekend with our far-away girl.

By the time I was done with my workday, it was 8 pm and one who is scattered even on good days, I walked out without my cell phone.  I was far enough down the road when I figured that out to decide not to turn back for it, especially since it was raining cats and dogs and getting colder by the moment. I prayed for safe passage to L’boro and kept going.

For the most part, in the less than 12 hours I was phone-less, I felt liberated. When I started up my car, the thermometer said it was 31 degrees out and it sure did have that feel/smell of just-about-to snow-time. I’d heard the worst of the wet front that came through was clearing out last night so I convinced myself I was mistaken and headed out the driveway, to our street and then to Broad Street/Hwy 29.

It was when I got to Lowndesboro that I realized I’d read the weather right. It had been snowing enough that there was a very visible dusting/gathering of snow on the limbs of the trees all the way down Broad Street. I passed one tree where there were a couple of cardinals sitting on a branch. That vivid red, the insistent white of the snow that demanded to be seen, and the mossy darkness of an evergreen in winter it was all gorgeous.

Finally, I missed having my phone. If I had had it, I would have taken a picture to share. So you’ll just have to take my word. But mark the date.  On November 15 of 2018, at 7:13 in the morning, we had snow in Lowndesboro, AL. Not enough to make a whit of difference, but enough to feast the eyes on. And feel that tiny little hop and dip of anticipation in the belly because Christmas coming. It  will be a complicated and fraught time for the Mallowman and me; it always is. And sad for sure, without our girl with us to celebrate with. Nonetheless. There are moments like the one this morning when I want to stop time long enough to truly, deeply, experience the gratitude that comes as I draw one breath, and then another.

Y’all: it snowed!

My daughter

IMG_6186

I don’t write much about my girl any longer. It’s too hard and sad.  Luli has struggled with her behavior since April, when her visit with us went so wrong.  It’s a damned if you do, damned if you don’t viscious cycle.  When either of us visits her, we are with her for only a few hours, most of the time is spent traveling to ATL, then to Fort Lauderdale and back. And her behavior goes haywire when we leave. After the most recent round of issues, her behavior support team got on the phone with us yesterday.  We had a conversation that helped me put another small piece of the puzzle together.

The very first psychiatrist we ever worked with described Maria as having organic brain damage. He was the one who pushed Sherod and me to look at the situation with our precious child in terms of triage and to recognize that her little self had been so deeply broken through her infancy and before we were able to adopt her, that we had to be careful not to let our own lives be consumed by the dark and bitter realities of so much brokenness.

Those words, which I’d tried to forget, were with me when, some 10 years later, the amazing people who had gathered around our little family to help us care for Luz Maria, met us for breakfast one morning in the spring of 2012. These were people with the skills and heart we had needed to put pieces in place after we went through a rapid-fire series of placements in the adolescent psych units in Miami and Fort Lauderdale, when Maria was 13. Now, at 15, Maria was out of control again and we were going under with the stress and chaos of having a young person who had become dangerous to herself and us.  A bed was opening up in an intermediate care facility (ICF) and 6 weeks after our breakfast, on May 16, when Maria turned 16, she’d be eligible for placement there.  The two women who were having breakfast with us looked at us and said, “it is time to let go of her.  This is a place where Maria can live for the rest of her life where she will be safe and loved.”

Maria is now 22. For an 8-month stint when Sherod and I moved back to Alabama, she lived at an ICF in Tallahassee but the level of neglect we observed there was so serious we moved her back to BARC.  On and off during these past 4 years, Maria has been in good enough shape to come and visit with us. Most of those visits were glorious and then the last one was worse than a nightmare because there was no waking up from the amount of self injury and aggression she engaged in.  Since then, it’s been pretty much a roller coaster for her back in the ICF in Fort Lauderdale.

The new piece of the puzzle we’ve been given comes from the work that has been done on the impact of trauma on infants and very young children. If the trauma is severe enough and lasts long enough, a very young child’s emotional development simply stops. Dr. Hughes, that first psychiatrist, told us she had organic brain damage. It was the parts of her brain that gives rise to emotions and the regulation of her behavior that were so injured by the traumatic experiences of her infancy. We kept trusting that the plasticity of the human brain worked in our favor. There was nothing we weren’t willing to learn or do or try to help her overcome everything that went wrong for her from the moment she came into the world.  Somehow, that’s what it meant to say, “Love wins.”

For more reasons than I can enumerate, Sherod and I have never doubted that we took the most financially responsible step we could when he retired, which was to move to Alabama. We made that move trusting that with Maria in Tallahassee, we were a 3 ½ hour drive away and could do what we needed to do to take care of her.

And we hoped. Oh my God, we hoped to the core of our being, that there might come a time when she would be able to live and function in a less restrictive environment than an ICF, so she could maybe, possibly, move to Alabama.  This state systematically dismantled the safety net for people with Maria’s needs years ago, so only a significant improvement in her ability to manage her behavior would ever allow us to be near her.  Yesterday, I faced the reality that I need to let go of that hope now. I know how to do that—I’ve done it before and any loss of hope for a specific change, a specific outcome, in no way diminishes the love I have for my daughter. It simply frees me to deal with what is and keep learning how to love her in new ways.

Tonight, I got a call from the nurse on duty at BARC. Maria was running a high temperature so they’d taken her to the doctor who had then said she needed to go to the ER because she has a serious infection and the doctor couldn’t figure out the locus of that infection.  Maria has now been admitted.  She has a staff member of BARC with her and is waiting in the ER for a room to be ready for her.  As soon as she is in her room, the staff member will leave.  Tomorrow, another staff member will be back at the hospital in the morning.

If I stay very still and I work on my breathing, I get through the minutes. But I think of my woman-child, who is a 3 year old living in the body of a 22-year old, lying alone in the dark, in a hospital, and my heart fractures again, and fear seeps through the cracks.  I try to remind myself that my daughter is one of the privileged in this country; she could so easily be incarcerated in a for-profit jail instead, as so many men and women with mental health issues are in Florida. In Alabama. In so many parts of this country.  And I pray.

Keep watch, dear Lord, with those who work, or watch, or
weep this night, and give your angels charge over those who
sleep. Tend the sick, Lord Christ; give rest to the weary, bless
the dying, soothe the suffering, pity the afflicted, shield the
joyous; and all for your love’s sake. Amen. BCP

End times

I have been very conscious of ‘end times’ and endings today.  Regardless of the outcome of today’s elections, they always represent as much an ending as a beginning.  Dear Lord, how I pray there is some end in sight to the fear and despair that has caught us in what feels like a death grip.

As I pulled into the parking lot at Holy Comforter this morning, the wind was whipping around, tearing leaf after leaf after leaf from the trees around me.They couldn’t even settle down to rest in peace, the wind blew too strong and stirred them up repeatedly. The air was burdened with humidity as the rain waited as long as it could to fall. Before my very eyes, autumn ushered out the growing season; soon, another liturgical year, and a month after that, yet another calendar year will end. I used to be so scared of endings. Now, I am more convinced than ever that endings make room for something new I had not even imagined possible.  May the endings we have ahead be beginnings like God plans for us, if we are to believe Jeremiah, plans for our welfare and not for harm, to give us a future with hope.