Giddy

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I just sent off the last emails I didn’t get to yesterday, as I wrapped things up at work before taking some days off.  I won’t be back to work until the afternoon of the 2nd of November.  I feel like a teeny-bopper about to go to a really cool party.  Giddy.  I want to do some cleaning and getting rid of clutter; this isn’t glamorous but it’s how I’ve learned to usher in the holidays and they are drawing near!  I’ve promised myself at least two hours of writing a day.  But the most, veriest exciting part of this vacation has to do with my spouseman’s birthday gift to me.  He’s given me a big girl camera.  I’ve had a quite lovely ‘point and click’ Nikon CoolPix that died last month. He lent me his camera last weekend so I could go take pictures on Old Selma Road.  And today, a few days early, I received a Canon EOS Rebel T6 with three lenses and more little stuff ,like filters, than I even have a clue how to use.  I’m going to be learning me some more photography and I am simply tickled pink.  Probably gonna try to stay off the grid quite a lot; how wonderful to allow the world to get on with business without me.  Later!

Lest We Forget

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From My Garden, October 26, 2016

The nights are cool enough that we keep our windows open now and wake up cuddled close under the covers.  It’s so dry in Alabama that few trees are turning pretty colors; instead, leaves are drying and falling without that breath-taking and beautiful in-between time.  Perhaps that’s why I find something so gallant and brave in the way the roses in my garden have gathered up strength, cool breezes and sunshine to have one last glorious flowering.  I have always loved the starkness of the grey and stripped landscape of winter.  This year, though, I find myself giving thanks because the roses have made one last, audacious stand against the passing of the growing season, lest we forget, in the bleaker months ahead, that there will come new days of color and glory.

Wrapping It Up for the Day

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.

The View Today

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View of the New River, the Sun and The Atlantic

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.

Another Kind of Parenting

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Getting Ready for a Baptism, Church of the Ascension

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.

Shattered, Again.

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.