It is the end of a busy day interrupted by the realities we continue to wrestle with for our girl, María. There has been an ongoing push and pull with the hospital where she is hospitalized about medications. As her guardian I am charged with approving any med changes and I know too much now to approve blindly. This time, I was fortunate that her regular psychiatrist provided some guidance and recommendations for the conversations about med changes. But over a three day period, there were all kinds of misunderstandings that I had to spend time and energy sorting out.
We also had to accommodate a very unusual set of circumstances in her regular residential program—the administrator of BARC and the nurse director were out of town in training, the hospital’s psychiatrist and another person directly involved in her care rightly took time off to observe Yom Kippur. Yet another person was int he midst of receiving family and making preparations for her father’s funeral today. That made it impossible to make any plans for María’s discharge, though stays in a psych unit are very counterproductive for our girl and the sooner we can get her out, the better.
To my horror, late yesterday, I was advised that María was being discharged at 7:30 last night. Another round of anxiety, another round of calls that included being left on hold for what felt like endless waits, and we finally worked out that Maria would not be discharged at least until Monday. That was extremely fortunate; in the past, her insurers have forced discharges before an adequate plan for the transition was in place and there’s been hell to pay.
The good news is we get to put a plan in place. The bad news has to do with what happens to her inside the unit. She has to have been deemed ‘stablized’ enough to be discharged yesterday. And today she has been so agitated that three times she had receive a shot to sedate her. That may keep her in the unit longer than Monday. This endless loop of complications, steps forward and steps back…I’ve done better this time around, drawing some boundaries, understanding the limits of my capacity to make a meaningful difference in this situation. And it is also still true, that after a call like the one I received about today means I have to glue the pieces of a broken heart back together again.
She is safe. I have meaningful—make that beautiful—work I get to do in the morning, Sherod and I had a good day today. One day at a time. One step at a time. One breath at a time.
My work for the trip is done; I fly back home tomorrow. There’s some real sadness to sort through. What Maria and those around her experienced was more than a melt-down. The description I heard of the hours of rage is horrific and still written in black and blue on the people who cared for her. There is general consensus that what we’re dealing with is more about psychiatric than behavioral issues. Maria has an excellent psychiatrist and sometime soon we will begin the process, always involving trial and error, to see if there are meds that can help avoid another incident like this.
I was pleased and grateful to work with a competent, transparent and helpful person at the hospital, a person more interested in collaboration than confrontation or obfuscation like we ran into in past. I am much more confident that Maria will not fall through the institutional cracks like she did 7 years ago. Though one of the people I met and worked with today is dealing with an enormous personal loss and everyone is still getting past the fright and preparations and stand down from Hurricane Matthew, I was on the receiving end of compassion and wisdom.
As I make my way back home, I have work to do that is both old and eternally unexpected: that somewhat ashamed, somewhat annoyed sense that I thought I had this one!
All along, the work of loving Maria has been about letting go of my preconceived notions of what it means to parent her. I have become fierce in advocacy—sometimes too fierce—relieved that if nothing else, I could make sure she was getting the best care and support possible, no matter the circumstances or situation. As long as there is breath in my body and my mind is intact, I will have some of that work to do. What my magical thinking has to make space for, though, is the mystery of abiding with systems and institutions in the places of not knowing. Of not having clear answers of what to do—not because the system is indifferent or incompetent or dysfunctional, but because what we have known how to do has limits and now, new exploration and effort are needed to keep moving forward.
I will go back home, not certain when Maria will be discharged, because her attending psychiatrist in the hospital is Jewish and we are entering the High Holy Days of the Jewish faith. That has an impact on when she is discharged and I feel far less indignant than I would have before—my daughter fits into a larger community. Though she has almost insatiable needs, others have needs and lives too. In a similar way, the deeply puzzling, barely understood, intersection of body/mind/pharmaceuticals, requires patience and perseverance. Nothing will change quickly.
A big part of my magical thinking also includes projecting out, making plans, dreaming dreams. We are back to the gift of today: the decisions that can and are made today. Today, I was also able to sit and drink my coffee looking out at the Atlantic as the sun came up, thanks to the enormous generosity of our friends Frank and Roberta who allowed me to stay in their lovely condo. Today, I was a bit stronger because my friends Carol and Pete fed me dinner last night and sent me home after tight hugs. Today, what I had feared would be a fight with the hospital turned out to be a productive problem-solving and coordinating session. I’ll eat dinner with my other cherished friends, Bob and Liz tonight. And earlier this afternoon, Sherod and I got on the phone together and talked briefly to our girl. She is not doing so well and—it’s always and—I got to tell her I love her and heard her say the same to me. All of that makes this a good day. Actually, a very good day.
I know Hartsfield so well I could probably find my way in the dark. The best way to describe what I feel when I am here is resignation, although today there was an unexpected delight. I make a point of not riding the train between terminals and instead, use the walkways that run parallel to the train route, between terminals. There’s usually a nice exhibit somewhere along the way and between terminals B and C, an interesting timeline with pictures of Atlanta’s history. Today, between A and B, there’s a new installation—quite lovely lighting, a ‘canopy of leaves’ hanging from, and covering the ceiling, piped nature sounds (birds, rustle of the breeze). It made me smile; I needed that.
This is what it means to be my daughter’s mother today. I go to Fort Lauderdale and know I won’t get to see her. I can’t. To do so would be to reinforce that melt-downs like she had on Wednesday not only lead to hospitalizations, but also bring mama running. It is quite brutal to make that decision. We have spoken briefly this weekend and everything in me wants to go through the phone and scoop up my peep. That is not how I can best love her, though.
Instead, I am headed down to sort out a mess created by the hospital where she was Baker Acted. They claim not to have received critical paperwork about our guardianship. A series of emails and calls yesterday convinced Sherod and me that this hospital, part of the HCA system, is as insidiously dysfunctional and incompetent as it was 7 years ago when we had our first encounters with them. Today, I am being given the run-around. Past performance is the best predictor of future performance so I know I have hours and hours of pushing hard to get minimal progress with them. I want to jump out of my skin. The most angry, confrontational parts of me get called out and those too, have to be tempered and tamped down. The goal is not to win. The goal is simply to do what I can to get my daughter out of that place as quickly as safe for her.
There is one more important piece of work. The staff and leadership of ARC/BARC have been consistently generous, professional, and deeply caring of our daughter. Working through a crisis like this is difficult, it places lots of strain on the relationships that are not just critical for our girl, but are relationships I value deeply. Together, face to face, we will try to put the best discharge plan possible in place to do all we can to reduce the risk that Maria ends up needing to be Baker Acted any time soon. There are no guarantees—but there is the reassurance that the combination of care and competence makes an incredible difference.
Yesterday, I baptized five little children of Mexican descent at the Ascension. They are not my daughter, but those beautiful faces, looking up at me all bright-eyed as I said those deeply powerful words, “You are sealed by the Holy Spirit in Baptism and marked as Christ’s own forever” reminded me of María. The wells of life and love in her and offered to me through her, run deep. It isn’t “my daughter”, or this “special needs young woman”, or “a patient at the Pavilion,” I am trying to love without seeing or holding. It is a bright-eyed, bushy tailed, incredibly beautiful Luz Maria, of flesh and bone, and heart and spirit who makes the hardship seem nothing in comparison to love.
Yesterday, María informed Sherod that she wanted to go back to her regular routines. With Matthew taking a turn closer to Broward, it made sense for Sherod to head home a day early. Initially, his plan was to stop somewhere along the way since he’d pulled away from Lauderdale in the early afternoon. But late, late last night he got home.
Maria made her usual six AM wake up call to me, sounding chipper and good. Today had already been a very long day and I had given a group I was doing some training with a break when I got Sherod’s text about an hour ago. This afternoon our girl had such a serious crisis that after everything else failed, she was Baker Acted and taken by the police to the psych unit in The Pavilion, one of the Bedlam’s of our time. For those of you who are not familiar with the Baker Act, it is a legal remedy to a situation where an individual presents such grave danger to herself or those around her that she is involuntarily hospitalized and involves a three day stay in a psych unit to stabilize and evaluate the person. With a serious hurricane threat, it is hard to know what care she might get in these next days. My fear is that as before, the psychiatrists will play the pyschopharmeceutical wheel of fortune with my daughter and María will not go back to square one but will emerge even more shattered.
We will not know what comes next for a bit. What we do know is the depth of our love for her doesn’t waver. And that no matter how much ground is lost, we start over, again.
Early morning found me preparing baggies of dog food for 5 days. Mo was headed to Doggie Camp while Sherod is in Fort Lauderdale, and I am getting through a series of days that will extend well into the evening with work-related meetings. I left Mo in the care of two winsome young women who fell in love with him and he with them and then met up with my friend. She and I headed up the road to Birmingham; our original plan was to go shopping, stop at a favorite plant nursery on our way back, and do as we do often, talk and laugh up the road and back. But two things happened between when we made those plans and when we were ready to hit I-65. They changed the landscape of the day profoundly.
Our first stop was at the heart transplant unit at UAB. Last Saturday, a kind, gentle, lovely man got a new heart, a new heart he desperately needed to live. I was blessed to receive the texts his wife sent giving us updates as the night and heart transplant progressed. It was beyond breath-taking to follow the steps taken from early afternoon to late into the night, and to be able to stop at the beginning of the 8 o’clock service on the following morning to say to the congregation, “Some news is too good to not share right away. Last night, D got a new heart.”
A few wrong turns (UAB Medical Center is a space big enough, and complex enough, to hold the hopes of a family who has heard these words: “the surgery went well. His new heart is beating as it should”), and N. and I were in a room that seemed too small to contain the new world given to D and his family. We visited. We strained to hear and truly comprehend these words from John: “Abide in me as I in you…As the Father has loved me, so have I loved you.” We ate almost tasteless bread, drank tiny sips of wine out of something that looked like it belonged in a doll house but was a chalice capable of holding wine that is both ordinary wine and so much more. We spoke past knots in our throats and tears in our eyes, and then said our good byes.
I had another, more unexpected stop to make. Yesterday, M., our new and ever-so-dear friend, whose horses we keep and with whom we laugh and visit often, in our pole barn that smells of horse manure, and hay and country, stopped to see me. Sherod had already left for Fort Lauderdale and I was puttering around, doing evening chores. M and his wife had been planning a trip starting today, but now, M. was absolutely torn. Probably his most bestest friend in the whole wide world, whose cancer had gone into remission and then come roaring back, was at UAB, just barely clinging to life. M. and I talked about what it means to be a friend when it is time to say good bye; the grief etched deep in eyes that have crinkled as he and his friend laughed and giggled on many a day. There is no room for empty promises that “it’s all going to be fine” at moments like that. All I could do was promise today I’d stop in and say a prayer with his buddy and family.
A few more turns, though less lost as I headed to that second destination, and it struck me that UAB is also a space big enough to hold an ocean of tears and loss. M’s friend was in too much distress when I arrived for me to meet him, but I got to meet his brother and sister-in-law, was privileged to hold a picture of the two buddies. When I looked at it, I thought to myself, “Oh Lord, the angels will quake the day these two meet again in heaven, and they will make God laugh so much the skies will thunder.” All I could do was pray from a distance and trust that, as M’s friend finds his way back to the earth whence he came, and the Creator who breathed life into him, he will know himself loved in a way that transcends everything else.
I stopped in one of the restrooms outside the NICU, got out of my clergy collar, and headed for a very ordinary rest of the day, watching a friend try on different lipsticks, shopping at Whole Foods and coming home to hug my dad, feed my cats and the dog here at home. The house is quiet, just us girls: chickens, cats, a dog and I, keeping watch this night.
Today, I got to see what it means to get a second chance in a way that speaks of miracles. I was just an ordinary human being and friend for a nice while too. And tonight, my thoughts are with M., his buddy’s family, his buddy, who got a second chance for a few years and now turns his face to the vastness of what we do not know. The words that echo, precisely because of everything that filled this day are these:
“We are mortal, formed of the earth, and to earth shall we return. For so did you ordain when you created me, saying, “You are dust, and to dust you shall return.” All of us go down to the dust; yet even at the grave we make our song: Alleluia, alleluia, alleluia.” (BCP, p. 499)
My mom and my grandmother surrounded themselves with much beauty in their homes; a part of my grandmother’s Latin American colonial art collection was on special exhibit for a time in the Metropolitan Museum of Art. There was always a sense of wonder coming into her house when we visited her because everything was just so beautiful. My mom too, had a very good eye, though she lived in my grandmother’s shadow and I think trusted herself far less when it came to decorating her house. Nonetheless, I can remember being in the old part of Stockholm, Gamla Stan, with Mom, going from shop to shop, while my mother searched for a couple of pieces to add to her snuff bottle collection. I remember being enchanted by the colors and the artistry. A couple of them were painted inside with a single bristle.
Quite honestly, Sherod and I really struggled as we started sharing a household. Our tastes are considerably different and though we have found common ground through the years, there has always been at least a gentle tug and pull between us about utility and graciousness, presumption (mine-ugh!) and hospitality. I’ve learned a whole lot about hospitality married to Sherod. Slowly, I have found a way to value beauty and challenge in myself both pretention and a desire to be liked, which includes having my home admired. Nonetheless, all through my years growing up, and then, as an adult, each time I visited my parents’ home while Mom was alive, there was this whispered, almost imperceptible promise: “many of these gorgeous things will be yours. You are the daughter, the sons don’t give a flip about any of it—much of this will be yours.”
The first round of letting go came when I went down to help my Dad after he sold the house he and my mom built in Boquete. He was downsizing significantly and needed help sorting through and paring down. I had vaguely imagined my dad dying in their own lovely house, not a rental, and my brothers and I closing the household down after his death. I figured that at that point, I would see about having the things that I would inherit packed and shipped to me. With Dad downsizing, and I working in a position that felt very precarious, it was gut-check time. I ended up showing my dad a few pieces of furniture I truly loved, and we agreed that he would see about getting those pieces shipped to me, along with my mother’s fine china. Every effort to make that happen fell short, I suspect because my dad was simply too overwhelmed, and time went on with those pieces and china sitting in a corner of his porch in the little rental.
Then, the reality of his need to move in with us hit, and after that, I faced into the enormity of the financial responsibility Sherod and I were assuming. All of a sudden, I had to think through and be clear with myself about what mattered. In the end, I settled on one painting and Mom’s collection of snuff bottles.
As much as anything, those pieces I let go of mattered to me because they connected me to the stories of my mother, my grandmother, and with one piece, even my great-grandmother who had lived with her daughter in Panama and the USA for many years and moved back to Sweden in her late 70’s. Mormor’s Mor, as we called her, took back with her a collection of all the exotic dead bugs she’d accumulated in the tropics, kept each in its own little box padded with cotton; her collection, which was quite extensive, was kept in an exquisite chest of drawers. When her lady friends would come to tea, she delighted in horrifying them by taking her specimens out to show. I knew exactly where that piece of furniture would go in our house here in Lowndesboro.
Maybe what also made this hard was we had the means to bring those things here and Sherod was extraordinarily generous about encouraging me to go ahead and do so. This was a purely adult decision I had to make based not on my own immediate desires, but the larger truths we inhabit these days. What you have relinquished of your own free will is sometimes harder to lose than what was taken away from you.
The picture arrived a few days ago and now hangs in the space I hoped it would fill. I don’t have my great-grandmother Caroline’s furniture but my mom’s snuff bottles and Chinese figurines are on the chest of drawers Sherod made many, many years ago. I can hardly even look at that little corner without tearing up; it didn’t take a houseful of stuff to stay connected to the women who came before me.
And today, something else happened. I had been out gardening and took a big load of weeds in the wheelbarrow to our burn pile. When I had finished getting the weeds where they needed to be, I walked back to the pole barn to put away the wheelbarrow. As I set it down, I noticed how beautifully the light was playing on everything our friends Mark and Kay have hung on the outside wall of the hay room, things they need for Gus and Buck, their horses who live with us. Those things were as beautiful, and the light was as filled with meaning as anything I own or possess. I got my camera, took a picture. I was hot and sweaty. I had been delighted, hefting the wheelbarrow, feeling the strength in my arms and smelling all the farm smells of this little corner, glad for my morning’s accomplishments.
It hit me then. This. The light and the color, and the very ordinary things that, together, were such a gorgeous composition. At best, this was a fleeting composition, but it was here. It was here for me to see before I went in to talk to my husband, and write a sermon, and call my girl. This. This is what I love. This is what matters.