just a bump in the road

So Elizabeth is back in the hospital and I'm just fine with it. After all, she has a chronic condition which has an acute flare-up every now and again. Some things I can prevent and some things just are. And this trip falls into the second category.

She has done well with a relatively unstructured summer. I signed her up for two weeks of camp with a couple of weeks in between. She did great at the first week right up to 4:30 Friday, when she had a freak-out and had to be briefly restrained. She was able to process this with a couple of people, something that just isn't her strength. Before she went back, the camp director, her community support team and I all talked. We made sure there was every support in place, constant one-on-ones, my talking to the staff, a crisis plan. But there is always something you can't plan for.

The unplanned thing was a lice outbreak. I had her checked and she was clear before camp started, but on Monday, they found a louse and a nit. We went into town, bought the chemical stuff, raced to a local friend's house, washed and combed her, and then I took her back to camp, all before 10:30 am. She was able to reintegrate into camp just fine. Tuesday she was clear, but she was pretty fragile by the end of the day. Wednesday they found more nits, so we drove all the way home (45 minutes) to do the washing and combing thing again. She was back by noon and seemed okay.

But she wasn't. She didn't want to leave when it was time to go because she didn't want to leave her favorite counselor, Addie. After the first camp, I could see she was becoming obsessed with Addie and I talked to her about it, as did her therapist. When it was time to go Wednesday afternoon, she became violent towards me, hoping that Addie would intervene. Which she did, but Elizabeth couldn't calm herself and I had to call 911.

The deputies they sent looked about 12, although they were driving, so they had to be older than that. I always worry with young cops; do they have the life experience to read people accurately? Will they see the sweet child having the breakdown or will they see someone dangerous? One thing I give thanks for is that Elizabeth is a girl because a black violent boy does not stand a chance. But they were good at their job as well as kind, and after they got her in the car, they gave her a stuffed dog which she held close the remainder of the night.

The ER gods were kind to us as well. We were sent right back to a room. UNC has a behavioral health emergency department, separate from the others. They have apparently accepted the fact that emergency rooms are the front lines in mental health care and have prepared for it. This is good except they won't let me take my computer or phone in, and so I look forward to a long night's stay without the online scrabble games that used to make these stays bearable. The drill is that she is seen by a pediatric resident, then the attending, then a psych resident, then their attending. Getting four docs down there can take hours. But within an hour we have the first resident, and her concern about lice brings the attending down to see us. She is one of the best we've ever had and she does what she can to make things easier for me. Elizabeth is so dehydrated that they can't get any blood out for tests; after three tries from three different nurses, the attending puts her foot down and tells them it will have to wait until the next morning.

The psych residents come down before midnight, two of them. One interviews Elizabeth and one me. Mine asks me for her history. If you've followed this blog, you know it's long and it ain't pretty. She finally puts her pen down and just listens. Within an hour, they've decided to admit. And there are beds so they can admit there. I'm home by 2:30 am; this may be our all time shortest stay in the ER. Our fellow inmates are moderately entertaining; one does a little dance for the resident and me before he is discharged.

Once in the unit, we also get the luck of the draw when she is assigned to a fellow and not a new resident. He keys in on my use of the word obsessive when I describe what happened. "Has she ever had a diagnosis of obsessive-compulsive disorder?" There are so many of her actions that I can ascribe to her anxiety or her language disorder or her sensory integration problems, but there are many that just won't fit. I visualize them lying around the floor like pieces of paper without a place to go and suddenly someone hands me a file and it turns out that they all belong there. He asks to do a test called the Y-BOCS which screens for that. I like him and I like that he thinks like a detective. He agrees not to change her meds and I appreciate that. Sometimes the residents get all excited and want to play with meds, but he's fine with leaving them as they are.

When I get home, I tell Claire what he said, and she goes into her ranting riff she does whenever Elizabeth gets a new diagnosis. She did it last when Elizabeth was referred to UNC Opthalmology for possible glaucoma: "I am relatively sure that what this black, mentally ill, gluten allergic, adopted kid does not need is TO BE BLIND!!!" Today she starts in, "Let's just give her ALL the diagnoses because she doesn't have enough as it is!" I have to agree with her. Lice are very unusual among African-Americans, but she's the one that gets it. Claire and I don't, just her. Why is she the one that's diabetic with thyroid disease plus gluten, dairy and corn allergic? Why does she have the sensory integration disorder and a speech disorder too? Anxiety? Mood disorder? No one promised fair, but could we just have a break? Apparently not; instead we get OCD.

But as we're cleaning up Elizabeth's room, Claire hands me ten sheets of notebook paper where Elizabeth has started writing a letter to Addie: Dear A, dea, Dear Addie, I ho, Dear Add. We look and see a tiny mistake on each which caused that draft to be rejected. We pick up her clothes off the floor and joke about how she tries on ten or twelve outfits each morning. OCD looks like it's in the running.

I look for grace and find plenty. Another piece of the puzzle is one of them. She has received intensive inhome services from a community agency; since it's working so well, it will be taken away from her, which is the way the system works. But this setback should earn us another two months. It's also nice to have some time to myself. Tonight I go to Claire's play and tomorrow night I have dinner plans. There's time to putter, to clean and to eat gluten. We all agree that this is just a glitch, one that can probably be resolved with a tuneup. And this time I don't see the psych ward as a sign that I'm a failure but as another tool to help Elizabeth towards health.

food as enemy

I'm southern, which means food isn't just what you do for nourishment, it's what you do for everything. When people come over, you eat. When someone dies, you start cooking. Holidays are marked by seasonal food and lots of it. When my kids were young, we celebrated lots of days with themed meals: red, white and blue food on the fourth of July, blue milk for a blue moon, steak, beets, and strawberries on Valentine's Day. We ate meals together and I, for one, found a great deal of joy in our meals.

When Claire was seven, she convinced me to let her try being a vegetarian. She proved she could responsibly find other protein sources and not overindulge in carbs as many young vegetarians do, and she has continued on this path to this day. About that time, I tried Elizabeth on the Feingold diet, which removes artificial petroleum-based food dyes, artificial sweeteners, artificial flavorings and high fructose corn syrup from her diets. Her behavior improved and my insomnia ceased. We continued this diet until she became hospitalized on a regular basis; they fed her Froot Loops there and seemed puzzled when I complained. After all, what does food have to do with mental health?

Then she developed diabetes, type 2, and that involved a whole new set of food rules. We counted carbs and tested her blood sugar. She could eat almost anything, but it had to be in a balanced and responsible way: one pieces of pizza, not six, and that with a large salad. At her last PRTF, they obviously knew nothing about diabetes management, denying her peanut butter and lip gloss because they had sugar, but allowing her unlimited servings of potatoes, rice, pasta and bread. They were also big on artificial everything, and her diet was less healthy than ever before.

While she was gone, Claire figured out she was allergic to soy, not a happy thing for a vegetarian. Okay, so we'll cut out tofu. Except that wasn't okay. Soy is in everything. Most fast food restaurants use soy oil; most chocolate contains it as well. The restaurants we could eat in dwindled to two or three. Soy candles were banned and even magazines printed with soy ink. We read the labels on everything. Claire learned to bake out of self-defense, and we enjoyed the fruits of her efforts: challah, chocolate cupcakes with kahlua icing, brownies with cream cheese.

Today I took Elizabeth to a holistic practitioner, one who comes highly recommended by a friend. He looked at the numbers from her blood tests (done by her pediatrician) and pointed out the signs of inflammation. Her race, along with her diabetes and Hashimoto (thyroid disease), mean the likelihood of her having sensitivities to wheat and dairy are extremely high. We can do the $300 blood test, he explains, or we can just take it out and see what happens. We opt for the latter. He also wants her to stop eating anything deep-fried, due to the trans fat produced by high heat. He feels that the interactions that happen in the body have a huge effect on the brain.

I want to argue and say I don't believe this, but unfortunately it feels too right. I explain it to Elizabeth, putting the best spin I can on it: there are lots of good things to eat that don't involve wheat or dairy; you'll feel so much better. But that is no consolation for life without pizza, sour cream and Lockhart's fried chicken. Claire and I walk her through Whole Foods, exclaiming in rapture about the options we have. OOh, chocolate muffins! Quinoa! Gluten-free oatmeal! Seaweed snacks! Claire points out things that her friend Henry (gluten-free) and Grace (vegan) really like. Slowly she starts to come around. We pack up two small bags with $65 worth of food and head home.

Sometime after she went to bed, she got up and ate a muffin, the seaweed snacks, fruit snacks, and a bag of chips, her snacks for the next three days.

I know there are people who healthily and happily live on a gluten-free, dairy free diet, just as I live with someone who copes with a soy-free vegetarian diet. And I hope she will accept that this is what will make her feel better. But right now I grieve for my children who have to see at least some foods as the enemy, who have to read every label and pass on the cherry pie and bread and butter.

one lousy hand

Two days after my meeting with Nova last month, the supervisor called me and did some serious eating of crow. Her people had let her down. It turned out that the numbers weren't really as bad as they had told her and that Elizabeth HAD made progress. She was still learning her job and wanted to apologize, and the director/CEO of the facility was going to sit down with them and look at treatment goals. I felt like I was holding a handful of trump cards and that we could get some things accomplished now. There were some good folks there and I knew it would be very disruptive to Elizabeth to start over somewhere else. Transition is not her strong suit. I was ready to move ahead.

I'm obviously a pretty lousy poker player.

Elizabeth's Child and Family Team has been busy this last month. We've met twice and worked over email to come up with some thoughtful goals. We invited NOVA to participate via conference call at last night's meeting; no response. I finally called Disability Rights NC; it turns out they have had several complaints about NOVA, and they called and talked to Elizabeth's therapist there about some of them. They asked me to report her threatened discharge to the state, saying they couldn't just decide to kick her out like that. The worker I talked to at DRNC actually had met Elizabeth on another visit there. They were concerned about her diabetes too.

When they called yet again about another restraint, I asked once again that she be put back on the beta blocker that was looking successful when she came. The psychiatrist had pulled her off it in the first week. At clinic on Tuesday, he agreed to put her back on it for seven days to see how she did.

Today I took the reworked goals to NOVA for our monthly treatment team meeting there. Our team charged me with presenting these goals and asking them to work with them to hone her treatment. They had said they didn't know what to do, and our team was going to help. When I arrived, I was pleased to find their director/CEO had come to the meeting and I passed out the goals.

He held out a hand to stop me. "You aren't going to like what I'm going to say," he said. "Effective February 12, Elizabeth will be discharged from our facility." I said something about their inability to change their treatment to help her, that I knew they were out of strategies, repeating what they had said last month. "Oh, no," he said. "We can work with her just fine; it's you we can't work with." He quoted their handbook, saying that the therapeutic relationship was too broken to continue and that was grounds for dismissal. When I asked for specifics, he said that I had copied regulatory agencies and legislators on my emails and that could be construed as a threat. 

I asked about the diabetes testing. They had records showing that they had been testing all along, their nurse said, but no, I couldn't have them. Besides, a blood sugar of 274 isn't too high and they don't believe she has diabetes. The director/CEO said that he had diabetes and he knew about it. She certainly didn't have type 1 and she was too young to get type 2. I asked for the incident reports about the restraints she had while she was there, reports that I had been promised. They were refusing to release them. I asked the supervisor about her telling me that her staff had let her down and that their numbers were wrong. She never said that, she told me.

In the two days she's been back on the beta blocker, she hasn't had a single aggressive incident.

So there we are. I have a child coming home in a month. I'm not going to fight their decision and I'm trusting that she is okay in the time that is left. There are some good folks there and I have to believe they will watch over her. I have a lot of work to do in the next thirty days.

But not tonight. Maybe tomorrow.

those quiet goddesses are the most dangerous

I think a lot as I drive, and one of the things I think about is how families fit into categories. You probably know a family that seems right out of Faulkner or the Simpsons or Dickens or Hogwarts or perhaps Road Runner cartoons. Other people besides me do this, don't they? Sure they do! Well, my cousin's family falls into the Greek myth category. They live in a farm in the North Carolina mountains, and it's every bit as pretty as Mount Olympus. My cousin's husband looks like Poseidon, although perhaps Poseidon on Prozac, because he's calm and pleasant, none of that vengeance stuff. RM herself would have to be Hestia, goddess of the hearth. She's the one who keeps the wood stove going, bakes the bread, tends the garden and the chickens and ducks. She also keeps the goats and makes the cheese. Bernard, the dramatic youngest daughter, is clearly Aphrodite, goddess of love and beauty. Auburn-haired with gorgeous eyes, she is known for her drawings of Reubenesque mermaids. She loves to shop and socialize and she sings like a siren. They may live in the mountains, but she loves the beach. Definitely a 15-year-old Aphrodite.

And Ed, the 20-year-old—I see Artemis, goddess of the flocks and the chase, every time I look at her. She's truly lovely, tall and willowy with golden hair, soft-spoken and low-key. She's at home on the land and can ride her horse for hours in the woods. She's magical with their farm animals and has even trained her border collie to bring her walnuts and crack them for her. Her pursuits are more solitary, reading, drawing and knitting. I don't know if she's an archer, but she should be. And like Artemis, it's easy to forget just how dangerous she can be.

Aphrodite and Artemis share a part-time job working with animals. A supervisor was hired as boss to the girls and several others at the job. I can't remember his name, so we'll just call him Jethro, for lack of anything slimier-sounding. He was 37 and almost good-looking in a sleazy kind of way and thought he must be irresistible to Aphrodite, who is actually quite capable of taking care of herself. But her firm redirection as he ran his hand down her leg or adjusted her bra strap or said something totally inappropriate didn't seem to be working. Oh, and did I mention he was her boss?

Being summer, the girls made an after-work trip down to the river to swim, a fact that proves they are among the immortal because that mountain river water is cold as Hades. And in that uncanny way that creepers have in appearing where they are least wanted, Jethro showed up, ostensibly to swim, but really to gawk and further his attentions to Aphrodite. He came riding in on a golf cart, an unlikely but somehow perfect vehicle for a seriously seedy villain. And so he resumed his courtship of Aphrodite.

Artemis watched for a bit and then smilingly beckoned Jethro over. He came eagerly, perhaps thinking of switching his focus to her. She looked at him silently for a moment and then said in a calm pleasant voice, "Jethro? If you touch my sister again, I'm going to castrate you like a motherfucking pig. And I know how because I've done it before." She smiled. He backed up, fear in his eyes. "I, uh, believe you," he stammered. When Hestia showed up shortly after to pick up the girls, Jethro was tearing out of the parking area, riding the golf cart far faster than safe and tilted on two wheels. When she asked what happened, Artemis told her, adding innocently, "But I said it very sweetly."

Jethro didn't stick around those parts much after that. I'm not sure I blame him.

Christmas Eve

I love Christmas Eve. I love the slow buildup during Advent, the feeling of expectancy, of waiting; O come, O come Emmanuel, comfort, comfort ye my people. I've learned to ignore the other stuff, the Martha Stewart frenzy, by staying out of the malls and turning off the radio. By Christmas Eve, I'm finally ready for the carols, the greenery, the lights. I love the 5:00 service and the between-the-services party. I love the parking lot exchange of baked goods and seeing the kids in their dress clothes. We could never travel for Christmas; this is our tribe and this is where we belong.

There is always a bit of drama over getting dressed before church, but finally everyone is showered, dressed, and in the car. Tonight, as always, I forget my dish for the party afterwards, but we're early enough that I drop the kids off and go home and get back with time to spare.

The purple and blue are gone and poinsettias and greenery fill the church. The wise men are hidden and the pews are filled with people I see Sunday after Sunday and those I look forward to seeing this one time of year. The Christ candle is lit in the wagon wheel Advent wreath. The readings begin: the people who walked in darkness have seen a great light. This year has had its dark moments, many of them, and the light imagery washes me with peace. The hymns start; I crane my neck to see who's playing, really to assure myself that Holden is at the piano. Not that it can be anyone else; no one else plays with that energy and joy.

The Christmas Eve slide show pageant begins. For years this was my job and one of the highlights of my Christmas. In November the kids would arrive in bathrobes, angel wings, dish towels and Halloween animal costumes, and we would re enact the Nativity story before cameras. It was a holy time for me, the familiar story made new by the faces on the slides I sorted. This year once again, the children's faces, flashed on the wall of the darkened church, elicit chuckles and awe, all at the same time. I look around the nave and see young adults who were the baby Jesus or Mary or Joseph or Gabriel. I've watched these kids grow up and I'm happy to see them home from college or holding young ones of their own. We are all connected by twenty years of this pageant. Kids grow up, things change, but sometimes it is good to have something stay the same.

The service ends with the congregation kneeling, singing "Silent Night". This IS a change, but a nice one. I sing along and then my mind slips into the past.

It's another Christmas Eve at another Episcopal church, this one in Ashe County, in the mountains of North Carolina. St. Mary's is a small country church made semi-famous by the frescoes painted inside them. Faulton, the priest, was known for his dramatic flair, along with a great passion for the gospel, a love of liturgy, and service to the poor of the county. On that frosty Christmas Eve there was candle light and greenery and poinsettias, and although the heat never worked, so many of us were packed inside that it was warm. The Christmas and Easter folks were there with their furs and pearls, fresh from earlier parties.

Before the late service, someone had given a puppy to a parishioner as a gift. It was tiny and cute and we all admired it and played with it. After a few half-hearted yips of complaint, it happily fell asleep in the choir closet in the undercroft until time to go home. We all went upstairs where the service progressed to the end, an end which Faulton had carefully crafted for the full dramatic effect. The lights dimmed, we knelt, and the congregation reverently sang "Silent Night" as the candles glowed. Snow fell outside. It was picture-book perfect.

During the second verse, there was a small disturbance in the back of the nave and we looked up with interest to see what liturgical delight Faulton had conjured to end the service, the C and E's showing particular pleasure. A lurching figure stumbled down the aisle, holding something aloft. The organ faltered and a voice rang out: "Faulton! Faulton!" The organ stopped and there were a few audible gasps. "Faulton! Some bastard dumped a puppy in the undercroft! Oh Faulton, curse the son-of-a-bitch who would do that to this poor puppy!" he howled. A strong odor of cheap bourbon preceded the shabbily-dressed man, who held the wiggling puppy up like an offering as he staggered down the aisle to the chancel, where he fell on his knees, the puppy still raised above his head.

The room fell silent. More than one face showed horror and distaste. Faulton grasped the hand of the person next to him, and panic and indecision crossed his face. But Faulton was never at a loss for long, and standing suddenly, he crossed the silence and the space between him and the drunk and laid hands on the old man's greasy head. He looked out at the congregation and glared. After a momentary hesitation, we obeyed his silent but unmistakable command and gathered around; the puppy's owner gently pulled the little dog from the shaking hands and Faulton began to pray aloud, for the man, for us, and I believe even for the puppy, as our hands rested on the man and on each other. The prayer finished, the organ began again and this time we sang "Silent Night" to the end, not kneeling this time, but still gathered in the aisle and the chancel. The people and the puppy drifted off to their homes, and Faulton took the drunk to sleep it off at the rectory, where, unlike the inn, there was always room.

I love this story. I'm glad I was there. It's a story of grace and kindness. It's a story of getting things wrong and making them right. It's a story of light in a world that needs light.

Merry Christmas!

waiting for spring

I'm a good southern girl who was taught not to talk back or argue, at least not without a "bless your heart." Southern girls are nice. But good southern girls don't do so well if they have a child with mental illness.

I haven't posted much lately; no news is good news. Elizabeth seemed to be settling in to NOVA. Progress was slow, but there was progress. The number of behaviors had dropped significantly, and almost gone away during school hours. She had three trips home in the fall, for my birthday, hers and Claire's birthdays, and Thanksgiving, all of which went without a hitch. I looked forward to having her home for Christmas. In my mind, I hoped they could continue to work with her through the summer and then enter my school in the fall. We had talked about this plan in team meetings at NOVA.

Which is why it was so shocking to get a casual email a couple days ago, telling me that she was doing poorly. Her behavior had deteriorated after Thanksgiving, and they weren't recommending she go home for Christmas. They didn't feel she is making progress. And oh, by the way, her discharge date is January 20 and they suggest she be placed in a restrictive environment, for her safety and that of others.

When I talked to her last night, she was weepy about not being allowed to go home for Christmas. My policy is to never contradict the staff in front of her, no matter how outrageous the report. I will check into it, of course, but we need to be on the same team because it's confusing to her if we aren't. Sometimes it's just easier to tell her that something is a team decision; she knew we were having a team meeting today and I told her we'd talk about it. I knew they wouldn't really keep her from coming home, especially when home visits are a PCP goal (a PCP is a person centered plan, sort of like an IEP for the mentally ill). The discharge date was so outrageous I couldn't even take it seriously. It takes months to find a PRTF bed, and that is common knowledge. And they HAD assured me they never kicked anyone out, and that is what they were doing.

So although I made a few phone calls and checked with a few folks, I really wasn't too worried when I went down tonight. I had sent some opening volleys via email, asking for various paperwork, pointing out places they hadn't followed through, asking for authorization forms for folks in high places to have access to her records, the usual bitchy stuff that any parent of a child with mental illness knows to do in the ongoing fight to have ones child treated like a human being by the people charged with taking care of him or her.

But they were absolutely unyielding. A decision had been made by their treatment team (note to self—check on legality of that). My case manager, on conference call and livid, points out that it is short notice. We are giving you 30 days notice, they reply. "It's over Christmas and New Year's," she shouts. "Not to mention there ARE no PRTF beds," I chime in. The supervisor shrugs. "Take her home then." My case manager is stunned into silence, and I am too, but only for a moment. "Take her home? I don't have health insurance. She's put me in the ER twice. The team decided it wasn't safe to have her at home long-term, and you've just said she needs to be in a restrictive environment. That's why she's here!" "January 20," she says again. "Elizabeth is not invested in her treatment goals." Of course not. That's one of the symptoms of mental illness, a brain-based disorder that causes people to make poor choices that don't make sense to most of us.

I put in a call to another of my Child and Family team and ask the supervisor to explain it to him. She doesn't like what he has to say or how he says it and refuses to talk to him any more. He's furious. My case manager is furious. The NOVA staff is furious. I'm furious.

I calm down and talk about Elizabeth's severe expressive-receptive language disorder. Because she has trouble finding words to name her feelings, she acts out, often violently. Those behaviors are clues, I tell them. When she's acting out, look for the cause of the anxiety. I suspect the anxiety is over not being allowed to go home for Christmas. NOVA had agreed to look for a speech and language pathologist in Kinston or Goldsboro, something that never happened. How could you allow that to go untreated? And then there is the fact that her diabetes is back, which probably means her thyroid condition is back. Could that not account for behavior changes, I ask.

The supervisor gets very still. "What diabetes?" she asks. She's an RN, like all of their supervisors. "The diabetes that I told you she had before you ever took her, " I said. "The diabetes that is listed on her diagnoses on her PCP," our case manager blares from the speaker phone. I sense a breach in the wall and press on. "The diabetes that was under control without meds when she entered here, until your doc decided she was underweight and ordered double food portions for her." The supervisor starts flipping through her chart. "I've asked for her blood sugar levels to be checked every month when I met with you," I continued. "And last weekend, Elizabeth tells me they finally started doing it and it's 196. No one called me to tell me this." I'm on a roll now, righteous anger fueling my speech. "I've asked for a thyroid test to be done every month and I asked for one again yesterday, before this meeting. And when was it finally done?" "Last month?" she answers uncertainly. But she knows it was only done yesterday, just as I do. The other RN nods confirmation when I say that.

I tell them I plan to appeal and ask for a grievance form. She isn't sure where it is; there is a crisis in another part of the building and she needs to go, so she'll mail it to me. Not acceptable, I tell her. You've given us very little time and we need every day. I'll fax it to you, she says, desperate to get away. I don't have a fax machine. Her voice gets higher and she offers to email it to me. I agree and ask her who NOVA's accrediting agency is. She closes her eyes for a brief second and tells me.

They let Elizabeth see me for a few minutes. She asks me to write her a letter while I'm there. We often communicate by pictures and notes, because it makes so much more sense to her than spoken words. How wise that she knows that about herself. I tell her in the note that the team has decided she could come home for Christmas. I will be back next Friday, early, to get her, and then we'll go Christmas shopping. I ask her to remember that her behavior doesn't determine her getting to go home, but I'd still like her to really try to let go of the anxiety and stay calm. She reads the note and nods. Then she cocks her head. "Listen," she says. I hear a child screaming wildly in the background. "That's the new kid," she tells me. "He does this every night. That's what I did when I first came." She believes she has made progress.

One of the staff comes to take her to supper. As I leave, an ambulance is pulling up, lights flashing, the reflections making flickering pools of colored light on the wet pavement. I assume the screaming kid is being taken to the ER. I hope he won't stay for days waiting for a bed. I hope someone will stay with him. I hope someone remembers he is a child, alone, without his mom.

There's a cold rain falling as I drive the two dark hours home. When I get back in Chapel Hill, I stop by Harris Teeter to pick up a few things. I can't remember what I need, but my eye is caught by some red tulips. I buy two bunches and some lemons, just because I like the color.

Then I go home and wait for spring and remember wistfully the time when I was a nice southern girl.

liturgy of leaving

My last job was that of Christian education director. I had no previous experience when I took the job, but I was desperate for health insurance and figured I could find Sunday school teachers with the best of them. I was surprised to find how passionately I came to feel about the work; much of it was helping people find their places in the community and another large part was helping children and adults learn to live liturgically. One of my gurus was the author and speaker Gertrud Mueller Nelson, who wrote the book To Dance with God. Nelson feels strongly about the place of ritual, not just in church liturgies, but in day-to-day living. Transitional times, she says, are dangerous times. The Church has always recognized this and marked those transitions—birth, coming of age, marriage, death—with sacraments and rituals. Nelson encouraged us to mark important moments in our lives and difficult periods of our days with well-designed rituals to make them safer times.

She says, "In our creative ritual making, we draw a circle around that place and that event so that we can be more fully awake to the magnitude of the moment." We ignore these transition times at our peril. Liturgy of transition can moor us to what and who is important, while ignoring those times or pretending it's just another moment can cause us to feel unsettled and beside ourselves.

Forgetting this wasted a lot of time and did a great deal of harm to Elizabeth.

In the last four months, she has careened around the state, going from a level II foster home, to Duke Hospital ER, to Central Regional Hospital in Butner, to a PRTF in Winston-Salem, to Baptist Hospitals ER, to their psych ward, and then back to Butner. She fought desperately to get back to CRH, at one point telling me, "But I didn't get to say goodbye to everyone." She left Baptist, her home for a month, with just an hour's notice. She muses about how nice Aunt Jackie, her foster mom, was and how she hopes she can see her again. She has a lot of regrets.

I knew we had to do a better job of helping her depart if we didn't want a repeat of the previous fiasco. I asked Mr. G, our CRH social worker, to help her figure out what she needed to do to say goodbye for good as she prepared to leave for a new PRTF. She asked for a notebook and had staff and peers write in it. That was a good start.

Our friend Tom, who has met with her almost weekly for a year, came up with the idea of a ritual as she left. He wanted her to know that she was part of a community and that she was loved. His hope was that she could use that love to sustain her through hard times. We invited those who were close to her to come to Butner and tell her in person. Because the hospital wouldn't allow children to come in the unit, Mr. G suggested that we be given a pass to take her out.

Tom and his wife Janice brought her to a restaurant in Butner, one where Claire and I ate regularly when we visited, one that had the advantage of a private room. Our friend Patti brought four of Elizabeth's friends. My sister and niece were there, as was our neighbor. Paul, our youth minister from church, rode with me and Claire. We ate pizza and mugged for the camera. The kids, who hadn't seen her in four months, picked up right where they had left off.

After our meal, Janice presented Elizabeth with a decorated shoebox. Tom explained that he and Elizabeth had talked about putting all that was important to her in a metaphorical box and holding it close to her when she left. This was metaphor made concrete; in the box she placed the letters and pictures we gave her. Each of us told her what we had brought and what she meant to us. She listened, wide-eyed, nodding at the things people said. Each item was placed carefully in the box. Tom talked about how he hoped, when she felt out-of-control, that she would use the love she was taking with her to help her remember to control her actions. Elizabeth and Paul recited the 23rd Psalm, alternating every word, something they did whenever he visited her. Then Paul prayed, asking that God be with Elizabeth and with us during this time.

It was good liturgy: meal, symbol, psalm, charge, prayer. And at least in the short term, it helped. She was tearful that night at bedtime, but appropriately so, as anyone might be who was leaving something comfortable and familiar to go to something scary new. In the morning, she was excited. When I talked to her Friday night, she seemed settled and happy. We acknowledged the magnitude of the moment and gave her something tangible to hold on to. We made it clear that our family and community were what she was leaving, not just Central Regional. And we told her directly, that even though she wasn't with us, she was still a part of us and deeply loved.

This is where we went wrong before: we didn't acknowledge the magnitude of the moment. In my desire to protect her from my pain, it must have felt as if we didn't care. That's not a mistake I will make again.

Go in peace, Elizabeth. Our family and our community are strong enough and elastic enough to handle your absence for a time. You are still a much loved part of us and always will be. Remember that and use it to help you do the hard work you have to do.