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.

you just might find you get what you need

It definitely wasn't love at first sight. You know those hokey ads of two people running towards each other in a field of daisies, arms extended, ending in an embrace? Well, we would have missed, turned around to try again, and smashed heads together, knocking out a tooth in one and inflicting a black eye on the other. It was really that bad.

When I found out that Elizabeth was being shipped back to Butner, I emailed E, our wonderful social worker from the last time there. She had a full caseload and didn't think we would end up with her this time. We didn't. I didn't hear anything after a day or so and emailed her again. Finally I got a phone call from Mr. G, our new social worker. He was obviously multi-tasking and apologized for being too busy to call. I said the best way to get ahold of me was to email. He said he didn't email. When I started talking about something I felt it was important for him to know, he cut me off and said he'd see me when I got there that afternoon.

By the time I did get there, I was in a fury. I was early enough that I figured a supervisor would be around and I planned to ask to be switched to a more compatible social worker. I was madder and meaner than the last time we'd been in Butner, and I was in no mood to be messed with. I waited in the lobby for him to come get me to take me to the unit. He arrived and started talking immediately about Elizabeth as we made the five minute walk to the lower level. E and I used to make small talk on that same walk. She made me feel like Elizabeth was the only patient she had and she had all the time in the world to listen. I felt like I was in the presence of another human and that made it easier to focus on the difficult work we had to do.

I don't do well with what I hear. Like Elizabeth, I have my own auditory processing problems. I got through college by writing down every word of every lecture and then going back to the dorm and rewriting the important parts. I can't walk and listen at the same time. I need to see it, and pictures help too. And I communicate best by writing, so that I have time to think about every word and whether it conveys what I want it to say.

Every encounter Mr. G and I had seemed to be a negative one. He talked fast; I listened slow. He strode; I moseyed. I was an idealist; he was a realist and impatient with my impatience with the system. He was interested in facts; I told stories. He interrupted constantly; so did I. We seemed doomed.

Before Elizabeth came in to the visiting room, Mr. G and I sat and talked, mostly at each other. "Why won't you do email?" I asked. "I need you to do email." He said that HIPAA regulations made it so that an email with identifying information in it could cost him an outrageous fine and he wasn't taking the chance. "Okay," I said. "But I don't do well on the phone, so it will have to be in person. And you can't do something else while you are talking to me." I could feel his irritation growing. "And you can't interrupt," I added, "Or I'll have to bring a talking stick and you can only talk while you are holding it." He looked at me in semi-amazement and then laughed.

When I left that day I hadn't talked to a supervisor yet. But Mr. G seemed reasonably competent and fairly personable. I asked Elizabeth what she thought. "I like him," she said. "Some of the kids don't because he's strict. But I think he's nice." That was important. After all, she was his patient, not me. I didn't have to like him. He sure was hard to talk to though.

As a southerner, it's hard for me to trust someone if I don't know their people. Have you ever noticed that when southerners meet for the first time, they start playing the Who Do You Know Game? It's an easy way to find out if someone is good or trustworthy or maybe not so nice. You can't play that game in hospitals, especially psych wards. In Baptist we lucked out and there WERE people who knew my people, and they were people I trusted. But this guy was the HIPAA king and I didn't know his people or his stories, and he had my kid.

The next time I came, Elizabeth said, "Mr. G knows Louise." Well, THAT was unexpected. Louise is a bona fide wise woman who knows both of my children well. I emailed her as soon as I got home. "He is one of the best people I know," she said. Oh. My friend Janice, herself a social worker and a member of my Child and Family Team weighed in. "He seems to know what he's doing." That was high praise from her. When we next met, I told him that Louise and Janice had vouched for him and I was willing to keep working with him. "But please don't just dive in. Ask me about the weather or something."

And he did. He really tried and I appreciate that. He made small talk, obviously itching to get on with it. As time went on, our relationship became easier. When I'm talking about Elizabeth, I have stories I tell, stories that I think say far more than a straight narrative does. He started listening to my stories and in the process discovered that it's easier to do that than to calm me down when I can't get my point across. He took time to hear what was being said in between the lines. He learned to laugh at me when I pounded the table and said I wanted to control everything. Then he helped me find what I could control and get on with it.

Claire and I visited Elizabeth last night. I was incensed about a decision the hospital had made, and this time I was the one who started in on him as soon as he came down. "How come I have to obey your rules but the hospital doesn't have to obey their own rules?" I fired at him. "What are you, an idealist?" he countered. We went on like that, yet somehow managing to accomplish what I had wanted to before we ever got to the unit. While he was out of the room getting Elizabeth, Claire asked if we were going to have the conversation I had talked about having all the way to Butner. "Oh we got that straightened out," I answered. She narrowed her eyes in confusion. "You two were each carrying on a conversation, but it wasn't the same one," she said. "How could you have accomplished anything?" But somehow, we did.

As I signed reams of paperwork tonight in preparation for Elizabeth's leaving Friday, I stopped between forms. "You are a good person and I appreciate everything you have done for us," I began. "You said that yesterday," he said, "Here, you didn't sign this one."

When my kids were little, I used to infuriate them by countering their complaints with singing the Rolling Stones' song, "You can't always get what you want . . . " I still miss the easy relationship I had with E at Butner. She was just what Elizabeth and I needed our first trip to Central Regional, kind, patient, knowledgeable, pastoral. But Mr. G kept me from getting too comfortable. This was just a temporary resting place on our way to better things. He wasn't about bonding, he was about getting her what she needed and sending her on her way. He, jarring yet compassionate, was the right person for this part of our trip. Because, you know, if you try sometime, you just might find you get what you need.

Where we're headed

. . . . and all I do is miss you and the way we used to be . . .

It's looking like the Butner chapter of this journey may be coming to a close. Since Elizabeth has been back there, the push has been to get her out quickly before she gets too comfortable. She likes Butner and she feels safe there. Hell, I feel safe there too. It's hard for both of us to leave. Again.

We have been looking at PRTFs, psychiatric residential treatment facilities for those lucky enough not to need that particular acronym. There aren't enough anyhow, and the situation is complicated by the fact that a Virginia PRTF that had 113 NC kids lost their NC funding, and so those kids bounced back into the already overcrowded NC system. Some PRTFs have turned her down, based on her high level of need. I have the world's best Child and Family Team (CFT) and they, along with our Butner social worker, work long hours calling, submitting applications, and calling some more. Finally two accept her, both in eastern NC.

Yesterday I drove down to visit the one in Kinston. It's a haul, over two hours or three Dire Straits albums away. My heart remains in the mountains even though I've lived in central NC for 23 years, and so this flat dusty land feels especially alien and alienating. Why are there so many RV sales lots on this road? I pass Cleo's Concrete Creations, Chosen Vessel Ministries, and lots of Christian academies. Yellow signs with red spray painted words sprout like weeds all over the roadside: peaches, tomatoes, yorkies. Yorkies? I check again. Yep, yorkies. Do I really want her in a town that boasts the 2nd AMEN ment Gun Shop? I'm suddenly very homesick for Chapel Hill.

I continue along Hwy 70, cut off on 268 and find my way to the facility. Road construction debris fills a vacant lot next to it. The place itself looks like a prison, with a fence around it and several low buildings. I stop and sit in the car for a couple of moments, my mood matched by the heartrending strains of a Mark Knopfler guitar solo, the notes echoing the words of the last verse: rockaway, rockaway. In my mind it sounds a lot like walk away, walk away, but I resist. The song ends and I get out.

A staff member is walking with a obviously upset and indignant girl, who cries and tells her side of the story. The staff member listens and makes sympathetic sounds. The girl calms down and I can no longer hear her voice. That's positive. I am directed to the administration building. Kim is perky and upbeat, obviously excited about this new unit. She points out that a new unit is different from a new program. They already have 24 beds for kids ages 7 to 17. This new unit will house 18 more kids. Elizabeth is being offered a bed in a pod for six girls, most of them 12 and 13.

We go to the new building which is in that final stage that all teachers know from the week before school starts. Floors are shiny new, bedspreads are on the bed, but the computer lab is empty. Boxes are stacked in the hall. The building is light-filled and attractive. She would be in a three girl living area, with three bedrooms, a kitchenette, one bathroom and a sitting area. As I look around, I suddenly see all the things that I didn't know to look for in the last PRTF, signs that tell me that perhaps this place can handle someone with her level of need. The TV is behind glass. There are no visible projectiles. There is one seclusion room for every three kids. Kim tells me that even when they are asleep, there are four people assigned to a six bed unit. Okay, that's good.

We find an empty office and sit, and I fire questions at her. I'm going to tell her just how bad my kid is, making sure she knows what they are in for. I thought I had told the last PRTF that, but somehow they didn't get it. I'd rather tell them now than have THEM tell me later. "Are you sure you can handle her?" I demand. Kim smiles. "That's what we do here," she says. "I could tell you stories about kids that make your child look easy. They deserve to be helped too. We can handle her." I ask how many kids they have kicked out in the four years they have been open. None, she tells me. My kid can get kicked out of just about anything, I brag. She's been kicked out of schools, camps for mentally ill kids, PRTFs, and psych wards. There's a first for everything. "Are you scared yet?" I ask. "No," she says. "That is what we do," she says again.

I tell her I'll let her know something on Tuesday and head back home. I call members of my CFT team. We talk about good points and bad. I realize most of what I object to is due to my snobbishness: eastern North Carolina, the gun shop, the fact that Kim mispronounces words. But I'm mostly stuck because I no longer trust my gut, a real handicap for someone who makes most decisions by what feels right. I loved the last PRTF; I loved that it was a working farm on 400 acres. They had a cat, for God's sake. There is no cat here. It was in the mountains. I liked the people at the old PRTF. But bucolic and nice didn't work so well. I need competent more than I need lovely.

At our treatment team meeting today, the social worker and psychiatrist sit and listen as I babble, even though they are pushed for time. They are in their best therapeutic mode, patiently asking hard questions to help me clarify what I want to do. Finally Mr. G, our social worker, asks, "What do you need from us?" "Tell me what to do," I say. They hesitate and look at each other, knowing they aren't supposed to impose their views or wishes, and then turn back. "Take it," they say in unison. Finally—certainty from someone! They talk about why they like it and their reasons are good. They point out that she is in far better shape than the last time she left Butner. And we've learned from the mistakes that we made in her last discharge plan.

We make a plan: Mr. G will have her decide what she needs to do to say goodbye. They'll make a list and check things off. Butner will transport her down there; I won't go. She isn't allowed visitors for 30 days, but I can call. It won't be easy; she refuses to come to this treatment team meeting and hangs up on me twice when I try to tell her about the place. If I'm having trouble trusting, how much harder for her? On June 3, she and the other five girls will arrive at the facility together. That's not much time.

One bright point: our seminarian (a student priest to those not liturgically inclined) will be assigned to a church in Kinston. The Holy Family diaspora, which served us so well in Baptist, comes to the rescue yet again. Tom agrees to visit her and I feel better knowing another pair of eyes are on her.

If they do what they say they can do, she will spend the next one to two years there. They will do medication management, therapy and something they call ART—aggression replacement therapy. She'll get schooling and she can earn trips into town, and eventually even home visits. The assumption is that she will leave there and come home because our system naively assumes that a few months of services will cure mental illness.

I would like that but I no longer count on it. It's a long, winding road our family is traveling. This part is dusty and flat. I hope for a more scenic route someday, but that might not be where we're heading. When the things that you hold /Can fall and be shattered/Or run through your fingers like dust. . . I turn up the volume, hoping it will cover the conversation in my head. Right now my job is to get to this next turnoff and hope it's one that leads somewhere good.

garbage strikes, punk rockers and dandelion wine

After I survived the Aran Islands part of my British Isles expedition in the summer of 1987, I hitchhiked across the country to Dublin. It was a novel feeling to hitchhike the width of an entire country in one day. Hell, it was a novel feeling to hitchhike, something I had never been brave (or stupid) enough to try in the States. There was always a bit of anxiety interspersed with the excitement of getting a bit further along the way, but there were enough people happy to give an American a ride that I made fairly good time.

I arrived in Dublin in the midst of a rainstorm and a garbage strike. I finally found a youth hostel where I shared a room with two teenage punk rockers from Chicago. It worked out well; they stayed out all night and slept all day while I did the reverse. None of us had much money, but they had enough drama for all three of us. I listened to their early morning tales and offered advice that they neither asked for nor followed, advice that usually fell into one of three categories: see a doctor, call the police, don't do that again. I likewise disregarded their advice, which generally consisted of foregoing stuffy cathedrals and trying one of the many pubs or discos. We bumped along in genial disharmony, each bemused by the others' choices as how to best experience Ireland.

While they slept, I played the virtuous sightseer. I slogged along in ankle-deep floating garbage as I hiked to the post office that was the headquarters of the 1916 Easter Rising. My very distant relative Thomas McDonagh was executed for his part in that rebellion and was memorialized by Yeats in poem and by a plaque in the PO. I saw the Book of Kells at Trinity College and went to St. Patrick's Cathedral, where Jonathan Swift was Dean. I had planned to hitchhike up to Belfast, but by then my achilles tendons were so sore and inflamed that I knew I couldn't. After dithering for a day or two, I decided to splurge on the train and so arrived in Belfast relatively though not completely painfree. I took the bus across town to the ferry and watched as soldiers poked our luggage with their rifles and questioned us as to our destinations. It was my first experience in a war zone and I was happy to get on the ferry and head to Scotland.

My destination was the small town of Strenraer for two reasons. One was that was where the ferry went. But it was also the home of a family my boyfriend had met the previous year when he was in Scotland, and they had invited me to stay. I arrived in Strenraer without incident and called the family. The wife answered the phone. After we had exchanged greetings, I told them where I was, and she said she would send her husband to get me. I described what I was wearing: "I'll be the one in the white shirt and black pants." "Hmm," she said thoughtfully, "I think I'll come along as well."

When they pulled up, she jumped out of the car and burst into laughter. "Next time," she said, "You might want to call them trousers. I had visions of you standing here in black underwear."

I had thus established myself as a green traveler rather than the urbane American I had hoped to pass myself off as, but that worked to my benefit. I was obviously in pain, so the mom hustled me off to the doctor. He invited the whole staff to meet me; they all had friends in America that they wanted to ask me about, friends in Montana and New York and Massachusetts, and they were disappointed when I didn't know them. He looked at my inflamed achilles tendons for just a moment, asking, "You've been hitchhiking, haven't you?" I was surprised, but I admitted that I had been. He explained it was a very common injury. I was wearing a heavy pack, and when a car stopped, I ran to get in, my body at an awkward angle which stressed my tendons. He put me in an ankle brace and on an anti-inflammatory, apologizing profusely for the one pound cost, and sent me on my way. I tried to pay but he wouldn't let me. This was my first, wonderful exposure to government sponsored health care.

I filled my prescription, put on my ankle braces and felt like a new woman. So when the teens of the family invited me to a local disco that night, I was ready to try it. The three of us entered the dimly lit, cheesy nightclub with its grimy floor and glittering ball and headed up to the bar. I knew that it wasn't a good idea to drink alcohol while taking medication, so I decided to stick to apple cider. The room was hot, I was thirsty, and the cider was cold and cheap. After the third one, I discovered I liked to dance, something I had never enjoyed much in the U.S. After the fourth one, my dancing had improved so much that I was attracting spectators, who obviously were watching in envy. After the fifth, the crowd had gotten large enough that I started wondering if something was amiss. I found one of my hosts, who offered me a beer. I explained that I couldn't drink alcohol and was sticking to cider. She stared at me for a moment before she and her friends dissolved in giggles. "And what do you think the cider is?" she asked.

Oops. I decided to take my chagrined and intoxicated self home to bed, but she wasn't ready to go and her brother was nowhere to be found. "It's easy enough," she said. "Just cross the square and keep to the left. You'll see our flat." I found my way home and fell into bed fully clothed. The next morning at breakfast, as I cautiously eyed my fried tomatoes and eggs, I looked up to find her brother watching me with amusement. "I see you got home all right," he said. "I wasn't sure you would. You looked like a bloody sailboat, tacking from one side of the street to the other. We followed you part way to make sure you got here. I thought you said you didn't drink?"

There were further adventures involving the whole family, the World Cup on the telly and homemade dandelion wine that it would have been rude to refuse, but for some reason those memories aren't clear. I'm sure they still have their family stories about the American who came to visit and stayed accidentally drunk the whole time. Is it any wonder I can't remember their names?

why I'm surly tonight

Baptist gave up. I knew they were going to. Dr. J had said that they were going to put in for a transfer to Butner because it would take weeks. "Besides," she said, "If she's doing well, we can turn it down." Less than a week later a bed came open and they didn't turn it down. I have to give my permission for them to give Benadryl, but I have no say in her being driven across the state to a new hospital by a sheriff's deputy.

It's a bad time because they have just started her on a new medication and are tweaking others. Psych meds often have to be started at low doses and then increased gradually. Sometimes you have to prescribe different drugs in the interim, while the new drugs are being increased. And then there are the drugs that are given to stave off the sometimes horrible side effects of other drugs the patient is on. She is right in the middle of all this.

Luckily I have the email address of our former social worker at Butner and I email her to tell her Elizabeth is on her way and not to change any meds. They can't add anything without permission but they can take her off. Tonight the admitting doc calls to ask my permission to put her on new meds. I say no and ask that she stay on what she was already on until I can meet with them. He can't find a record of her being on any meds. I tell him what I think they are and he finally finds a reference to that. He agrees to leave her on her current drugs and let me take it up with her medical team tomorrow. He is very nice and tells me how Elizabeth is doing. She is excited to be back because she will get to see me more.

I'm going to take a hot bath and read my murder mystery and eat ice cream and pet a cat. And then I'm going to go to bed. That's the best plan I can come up with at the moment. I'll think about it tomorrow.

hope of things unseen

I first saw the painting The Disciples Peter and John Running to the Sepulchre on the Morning of the Resurrection in the Musée d'Orsay in Paris many years ago. The painting has a very modern feel to it, but in fact it was painted in 1898 by the Swiss landscape artist Eugène Burnand. The Musée d'Orsay has an overwhelming number of impressionist pieces, housed in an old train station. I drifted through the light-filled space, leisurely drinking in my fill of Renoir, Degas, Monet, and Van Gogh, all favorites of mine, glorying in the joy of so much wonderful art that I'd seen up to this point only in books. Then I came to this unfamiliar painting and it stopped me cold. I stood for several minutes and just stared.

You know the story. After the dark days before, the sun is rising and John and Peter rush to the tomb. They have heard Mary's report of the stone being rolled away and, except for the linen clothes, only emptiness waiting within. It's easy to tell who is who: John the mystic, ethereal in his white robe, has his hands clasped as in supplication as he runs ahead. Peter, the craggy fisherman, looks as if he's been on a three day drunk. He has, of course, but it's a binge of bitterness, self-castigation, and grief rather than alcohol. What they have in common is the hope and shock that permeates every part of their being, that propels them in spite of their exhaustion and fear to race each other, that wonders what they will find there . . . . .

Hope is often indistinguishably mingled with fear; when life is satisfactory, there are only superficial things to hope for: a new car, a sunny day, a raise, pot roast for supper. It's when things are the darkest that hope is most needed; that's all that's left. Is it even possible to live without hope?

When Elizabeth was ten, we went to a regularly scheduled psychiatrist appointment. For some reason, she would not cooperate that day and hid under a chair. Dr. B tried to coax her out, but nothing worked. Finally she stood up and said, "There are children for whom there is no hope and I think you have one." Then she left the room, leaving Elizabeth and me staring at each other, her from under the chair, me standing in the middle of the room. I held it together until later of course, because that is what you do when you have a child with severe anxiety. No hope? I changed psychiatrists, but the damage had been done. No hope? What do you do with that?

I have a number of friends with mentally ill children and one day I ran into one at the mall. "Linda," she said, "I keep having this dream of holding D. and walking into the ocean and not stopping." Tears filled both our eyes. I could only nod because I know that dream all too well. It's the dream you have when you have no hope. No hope? That closes all paths but one.

Elizabeth has been hospitalized for three months now. She is fragile and falls apart easily. SHE has hope; she talks regularly about what we will do when she comes home. "You can't come home until you can do it safely," I remind her. "I know," she says. "I KNOW I can do it." Twenty minutes later, she falls apart over my leaving or having to take a bath or a perceived slight from another patient, and burly security officers descend once again. I see the signs of fatigue on the part of her doctors and nurses. They look away when I ask questions and their responses are shorter than they were. They spend more time justifying their actions. I have seen this before. It's what happens before someone once again gives up, when they once again stop hoping, once again taking my hope with them.

This weekend, Easter weekend, I visited on the Saturday. The regular docs had the weekend off and a Jewish doctor filled in for them. He's on the faculty at Bowman Gray and hadn't seen her before. While he was making rounds, she had a tantrum and he got to see her in her full glory. I came in shortly after and he asked to see me. "I'm wondering," he said, and proceeded to go down a different path than we've gone down before. "I don't normally work with children, but with violent adults. Still, there are some things in common." He proposed a new drug, part of a class that hasn't been tried, a cheap generic with few side effects which can be added to her existing meds. He called the attending at home and got his approval. "Let's try it," I said. I told him the story of Dr. B. He was shocked. "Oh no," he said. "Of course there is hope."

At the Easter Vigil that night, I sit in the dark and cry. Bishop Curry preaches, a good thing, because when he talks, I can almost believe in this risen lord stuff. When he talks, I can almost have hope. He reminds us of the power of baptism, and I remember that it's Elizabeth's and Claire's baptismal anniversary. "We bind onto ourselves today the strong name of the Trinity," we used to sing over their lamb cake lit with one of their baptismal candles. The lights come on and the roar of the Easter shout fills the room. Darkness is defeated. Of course there is hope. I wipe away my tears and ring bells with the rest.

I wonder what John and Peter felt when they reached the empty tomb. In John 20 we're told they went away to their own home. This empty tomb, this symbol of hope and resurrection to us, must have seemed like just another defeat among so many. I wonder what they were hoping for? They could not have imagined what would happen next. They could not have hoped for the resurrection.

What do I hope for? I hope that Elizabeth, a child of God created in God's image, will fulfill the promise of her baptism. I hope she will be whole and happy and faithful and useful. I hope that this next drug will be the one that works, and if not this one, then the next or the next or the next. I hope for more doctors who look at her and are intrigued rather than defeated. I hope for things I can not yet imagine.

Minister Charles L. Allen says, "When you say a situation or a person is hopeless, you're slamming the door in the face of God." I hope I remember that.

Of course there is hope.

wonderful pest

It's hard to remember when Bailey wasn't a part of Holy Family. First, he belonged to a neighbor, but he obviously wanted to become an Episcopalian, because he escaped to our not-so-welcoming arms whenever he could. He even ripped out his people's screen porch so he could join us in worship. Far too many times, I crawled around the altar during the 8:00 am service, trying to get Bailey out and back home. At Elizabeth's adoption party, I put him out of the undercroft 17 times. There is no telling how many times others did; the persistent widow had nothing on this guy.

Finally we all just gave up. His people appeared one day with his paperwork, telling us they were moving to Colorado and were afraid Bailey would walk, fly or hitchhike back to us in Chapel Hill. Cindy, our daycare director, became the keeper of the papers and the maker of vet appointments. I became the surreptitious collector of money for food and vet care. There was no shortage of donations.

Bailey pulled his weight. He attended every meeting, working the room while purring loudly, and made an appearance at every service, although he generally cut out during the sermons. He attended confirmation classes, but found the theology pedantic, so he slept through most of them. He took his naps with the children in the daycare and never bit one, even when he should have. When the health inspector came, he at first thought Bailey was a stuffed animal, until he stood and stretched, yawning in that slow, huge way that only cats do. Although the inspector docked the day care points, it was easier just to take the hit than to try to keep Bailey locked in my office for the day, something we tried a few times. Bailey was not pleased.

He kept the premises rat-free and kept us company when we had to work at night. He greeted Larry, the first day care worker on the premises, every morning. He was so much a part of us that when we took pictures for a parish directory, Bailey showed up, even though he hadn't gotten a reminder postcard. He marched stately up to the photographer, his tail high in the air, and jumped up on the chair. The photographer looked at us. "What should I do?" he asked. "He wants his picture taken," we said. "Take it." Bailey's picture appeared in that parish directory and thereafter he got reminder cards when it was picture time.

Bailey had his detractors; those who were allergic to cats, those who didn't like cats, those who didn't think cats should be drinking the holy water, there were many that felt he didn't belong there. He often slept in people's cars, scaring the bejeebers out of them when he jumped on their shoulder as they were driving away. But for every one of those, there were five others who slipped me money for Bailey's food or who showed up with a case of Fancy Feast. And Bailey had an important pastoral role. Whether it was comforting a crying daycare child or striding into a tense meeting, he did his part to keep the peace both within and among his parishioners.

At no time was this more apparent than on 9/11. We were in the library for EFM that morning when the horrible news came. Our administrator's husband was in New York, at a meeting planned for the World Trade Center. A member of the group had a son who was flying that day. As we sat watching the television in horror and fear, Bailey moved from lap to lap as we stroked him absently. He showed up to help plan the service for the evening. And he attended and sat with those who needed it. Man, did we ever need him.

One summer, we realized that Bailey hadn't been seen for several days. The staff started making inquiries, but to no avail. Larry, Cindy and I divided up animal shelters and checked them daily. Weeks went by, but we wouldn't give up. We just couldn't visualize Holy Family without Bailey. Shelter staff looked at me pityingly on my daily visits, but I explained that a cat who drank holy water regularly had to have a few more lives left. During my visits to the Orange County shelter, I fell in love with a little tortie, which I finally adopted. The next day, three months after Bailey left, Larry called me at 7:00 am. "Guess who was waiting for me this morning?" he asked. Somehow I wasn't surprised. He was much lighter but otherwise in fine condition. We postulated that he had escaped a rainy Sunday in someone's car, which then drove him to Durham or Apex or Carrboro. It had taken him that long to find his way back to us, but of course he did.

The next phone call wasn't so happy. It was about a year later when our priest called to tell me that Bailey had been hit by a car. Cindy took him to the vet, but his injuries were too serious and he was put to sleep. Larry had found him waiting outside the daycare when he arrived that morning. Injured though he was, he came back to us one more time.

He rests, I hope in peace, in the church garden. There were those who wanted to get another cat, but I explained that you don't choose a church cat, they choose you. We were honored for a time to have Bailey in our communal lives and I look forward to seeing him again at the heavenly banquet. And I don't want to hear any silliness about cats not making it to the Kingdom. This cat drank holy water.

Best cat ever

her name isn't High Acuity

This has been quite an adventure. We have gone from a level II placement to Duke's ED to CRH, then to a PRTF in Winston-Salem. We had several unpleasant incidents with law enforcement agencies, who, although CIT trained, were very inappropriate and threatened me and her foster mom with DSS. The PRTF was unable to handle her, so they dropped her off at Baptist Hospital's PED, where she remained for several days because there didn't seem to be beds anywhere else in the state. Baptist didn't want her because she was too high acuity, but finally they had to admit her into their unit, where she remains because neither UNC nor CRH could take her. She has been off-line quite a bit, so they changed her BIP, which seems to be helping her; she isn't requiring nearly as many prn's. The unit Wii is a great motivator and one CNA in particular has really been a strong advocate for her during her time there.

While we were still in the ED, I brought in someone from CPPR who informed HHS. I do feel like her rights under ADA were not observed during this time, and that we could have very easily added a DX of PTSD to her already long list. It would be interesting to see what the ACLU would say about this. I hope this information will make it to our legislators, who may think they are saving money by closing down facilities, but they aren't. Medicaid took such a big hit on her stay in the ED; luckily in the unit, she will fall into Criterion 5. That is a relief to me. Her present medical team agree on her DX of DBD, ADNOS, and S-RELD. Someone had mistakenly given them the DX of RAD, which is the cheap and easy DX for a kid like her, but most people agree that isn't accurate. She was also assessed for PPD but they didn't feel like she fell on the AU spectrum. She has been visited once during this stay by the hospital GAL who checked to make sure I wasn't hospitalizing her so I could go to the Bahamas for R & R or something like that. My big frustration at Baptist is that they have apparently never heard of SOC and so I feel shut out sometimes, although that is improving. I have a great LSW at the hospital who is very helpful and a very kind medical student has called me daily to update me, although he isn't important enough to get his own acronym.

Our QP from our CABHA has been working hard to fill out applications to other PRTFs, even though she can't be paid for this work because that would be double-billing Medicaid. Another member of my CFT, also a QP and a LSW, is helping her, and my friend who works for MHA FAN is as well (I am on their PAC). We have to keep our LME, which is OPC, informed and keep her PCP up-to-date. Right now it's looking like the waiting list for a bed in a PRTF will be about six weeks.

I'm also concerned about where her LEA is, since she has an IEP (SED and OHI) that guarantees her a FAPE under IDEA, and she is not getting that. She needs to be receiving services from a SLP, but the hospital doesn't offer that since, in theory, they are short-term. I am hoping that she will be able to get ESY services in the LRE so she can catch up a bit. The hospital offers an IAEP, but it's somewhat cursory. I could call the ECAC; they are always so helpful, but our circumstances are complicated.

So there is the update. If you understood that, God preserve you. You are either working in a terribly broken system or you are trying to navigate your way through it.

Me? I spend my free time driving back and forth to Winston-Salem. I'm reading a mystery series where the house is always clean, there is always enough money, justice is always served, the ending is always happy, and they never use acronyms. And they have servants. I don't need any more realism these days.

Oh, and her name isn't High Acuity. It's Elizabeth and she is the little girl caught in this mess. That's her with her beloved cousin Lindsay, who isn't allowed to visit because she is JAC— "just a cousin."

Channeling Amelia

As a former English teacher and church worker, one might think it easy to predict what great literature I reach for in times of trouble and need: the Bible? Well…..sometimes, but it’s a lot of work to get through and discomforting more often than comforting. Shakespeare? I think he’s great, but he’s not exactly relaxing, and all those bodies! No, my guilty secret is that many of my sustaining beliefs, especially those I turn to in difficult times, come from Elizabeth Peter’s Amelia Peabody Emerson mystery series (bodies aren’t so bad when there’s a mystery attached).

The first book, Crocodile on the Sandbank, hooked me with its strong female characters as well as its almost slapstick humor. In the second, The Curse of the Pharaohs, Amelia’s son Ramses is introduced and then left at home while Amelia and her handsome husband head to Egypt to help a beautiful widow. In Lion in the Valley, Ramses begins to come into his own, and a pesky master criminal is introduced. The eighteen books progress through the years, becoming both more complex and well-written, while still maintaining their trademark sly humor, romance, and breathless adventure. In He Shall Thunder in the Sky, the Great War has begun and the now-grown Ramses goes undercover to expose a traitor in Egypt. My inability to put the book down and go to bed before 6:00 a.m. showed me how attached I had become to the characters and how deeply I cared what happened to them. It was in this book that the concept of weathering pain and tragedy first struck me; those are not words heard in a time and country where people just want pain to stop. We often feel angry and indignant over undeserved trouble and look around for whom to blame. But the Emersons weather the storm. The war does come to a close, but the political intrigue continues and so does the hunt for untouched tombs. The series ends—at least for the present—with the “true” story of the discovery of King Tut’s tomb in Tomb of the Golden Bird.

It would be easy, especially if one has only read the early books, to categorize this series as light mystery set in an intriguing place. But over the years I have found myself returning to them regularly for strength and solace. When a close friend was terminally ill, I sent her the first four and told her she needed to read them. A few weeks later, she called to tell me they had made her feel stronger and were there more? I knew they would help because they had the same effect on me. That’s when I realized there are life lessons to be taken to heart in this series. In a whimsical moment, I decided to write down what I called “Amelia’s Words of Wisdom”, a list that is posted in my house and referred to regularly:

—The right man is worth waiting for.

—A good cat can be a lifesaver.

—Even when chasing Master Criminals, you wash the donkeys first.

—Do what you love.

—Disregard silly social conventions, but uphold those that matter.

—Side by side and back to back.

—Ethical behavior, both personal and professional, is hard when so many choose other ways. You still do it.

—We all struggle with racism deep down inside.

—It is pointless to complain that the world is not what we want it to be; sometimes you have to compromise on what you accept from others and from life itself.

—The world has always been scary, and present problems have been a long time in the making.

—None of us is perfect, and people can be hurt by that. Accept it, try to fix it, and go on.

—There is humor even in the midst of tragedy.

—We can weather this.

—Sometimes I would like to beat someone over the head with a parasol.

My friend died, my struggles as a single parent continue, recession threatens, and war continues. I’m still waiting for the right man, but I have four cats who keep me sane when they aren't making me crazy. I remember Amelia’s insistence on washing the donkeys first when the house starts descending into disorder. I work to behave ethically, even when it doesn’t pay. The world and my life is what it is, but I CAN weather this and laugh about it as well. And though I’ve never beat anyone over the head with a parasol, I’ve sure daydreamed about it.

I want to live at Ikea

photo by Karen Tam

Claire and I went to visit Elizabeth on her sixth night in the emergency room in Winston-Salem. On the way home, we decided to swing by Ikea in Charlotte. She's never been and it was the closest we've been in a while.

Ikea isn't hopping on a Wednesday night. We wandered through, looking at well-designed kitchens, trendy light fixtures and perfect paint colors. My favorite parts, though, are the complete homes, fitted into a 375 square foot space, a 600 square foot space and others. There are no dirty dishes waiting in the sink, no bills to be paid, no clothes hanging on chairs. The people aren't home and the space is spotless. Obviously, invisible beings sneak in after business hours and tidy up. I'll bet the washer and dryer work. And there isn't any mental illness.

I want to live at Ikea.

But I don't and so I just keep muddling through the messes. Elizabeth spent a solid week in the ER, over-sedated, restrained, no art supplies (she hurt herself with them), no phone (she kept calling 911 to get her out of there), no books, no school (she wasn't admitted so she wasn't eligible for the hospital school), no visitors except me, no exercise, and eventually no TV (taken away for her bad behavior). I finally took a photojournalist in with me on Wednesday, sponsored by an organization that provides information on mental illness to legislators. Elizabeth's hair is matted and wild, her skin ashy, self-inflicted sores on her hands. The journalist's organization was disturbed enough that on Thursday afternoon they contact Health and Human Services, the state administrative body that supervises care of the mentally ill.

I spend Thursday morning on the phone with the child psych fellow at Baptist, arguing for her to be admitted there. Not possible, he says, she's too high acuity. We have to wait for a bed to open up at Butner. Butner may be a ten week wait, I counter. He then tries to explain mental health care in NC to me. He suggests next time we choose a PRTF closer to home. I then explain mental health care in NC to HIM. There are 29 PRTFs in NC. Each takes 12 or fewer children. She doesn't qualify for many of them. The closest is 80 miles away from Chapel Hill. They kicked her out. He explains that they are upping her meds, hoping to sedate her. I don't feel that I have any choice but to agree. He's not unkind, but he doesn't seem to get it that anyone might have difficulties behaving in a small room for a week.

Interestingly, that night at 1:00 am I get a call from the on-call psych resident. I'm out cold and beat on the alarm clock for a while before I realize it's the phone. By then, she's hung up but I call back and get her. It's been a hard night, she tells me. They've shot her up with haladol and she is sleeping now. But the decision has been made to admit her to Baptist's "Behavioral Health" unit, the very one that turned her down that morning. I ask why the change? Not sure. I suspect that now that HHS has become involved, keeping a 12 year old restrained and sedated in an ER bed for a week now looks a little, well, archaic? contrary to the Hippocratic Oath? First do no harm. The harm that has been done to her in the last few weeks may be irreversible.

I go up last night to see her and scope things out. It's a beautiful unit. The rooms are large and the staff is friendly. They have a one-on-one security guard assigned to her at all times. She had finally gotten a bath and some lotion on her skin. The desk clerk was braiding her hair. For the first time in two weeks I feel she is safe and cared for. We have friends who work at Baptist, friends in positions that they can be advocates for her. I sleep well when I return home.

It's not perfect. I argue with the charge nurse over some of the drugs she is given. The nurse wants to override Butner's six week observation, testing, and diagnoses. She's psychotic, the nurse says. No she isn't, I say multiple times, my voice steadily rising. She counters that she seemed disoriented and showed disorganized thinking during the one afternoon she had observed her. She's drugged out of her gourd, I tell her. I show her a picture of Elizabeth a few months ago, hair groomed, big smile, the lights on in her eyes. The nurse looks away and stops arguing.

They call me at midnight to tell me they have had to give her thorazine and put her in seclusion. She kept pushing the call bell and finally pulled it out of the wall. Shit. I forgot to tell them how scared she is of the dark and how she'll do anything to keep someone with her. Her worst times are always at night.

The downside to this is that she is off the waiting list for Butner. I'm not sure what that means for the long term. Our case manager and a family friend are working together to write applications to new PRTFs, even though the case manager doesn't get paid since Elizabeth is in the hospital. There ARE some good guys here.

People wonder how such a thing can happen. It happens because we let it, because we hide mental illness away out of shame. If this were a child with cancer, would we sit quietly by? I don't think so. If we treated the physically ill like we do the mentally ill, it would mean that we required the emergency appendectomy patient to wait a month for surgery. The breast cancer patient would be turned down at hospital after hospital because they had already taken a patient from Orange County and the waiting list for Orange County beds was three years out. The epileptic would be asked why he was refusing to control himself. The brain cancer patient who had private insurance would be told that insurance would cover just one chemo treatment every month, even though the accepted protocol for his illness required it daily for three weeks each month. He might find that his doctor won't take private insurance because only Medicaid covers the full amount. Another patient might find her doctor wouldn't take Medicaid because the state was so busy auditing practitioners that it left no time for them to practice.

Private insurance companies can't make money off of mental illness, so if they cover it, it's only half-heartedly. If this were Claire, back in the days when we could afford insurance, we'd be up a creek. Luckily Elizabeth has Medicaid as part of her adoption assistance as a high-risk child. It's not perfect, but it's far better than anything else I've seen. But that is being cut too, under the misguided notion that it might save the state some money. State Medicaid dollars are matched by the federal government and so cutting one state Medicaid dollar loses us two. And the kind of care she was getting in the ER costs us tons. It's ineffective, even harmful care at high prices.

I'm not ashamed of her illness. She is my beloved child, created in the image of God. So are the other children languishing in ERs across the state. First I will get my child taken care of, making as much noise as it takes. But even then, I have no plans to shut up.

Along for the ride

You may feel like you've read this post before. I certainly feel like I've written this post before. But trust me, it's a whole new episode.

After three days in the Baptist Hospital ER, Elizabeth's PRTF reconsidered and agreed to take her back. It took a good 24 hours for the Hospital to change courses and let her be discharged to them. Taking her back was the right thing for them to do. I was a little nervous, but overall I was okay with this. They are, after all, a facility that works with kids with behavioral problems. Everyone deserves a second chance to get it right. They assured me they were ready. They weren't.

Once again on Friday night, three days after they took her back, they take Elizabeth to the ER. When I talk to her on the phone, I have to admit that her actions are logical, at least once you understand her logic. The PRTF told her that if she acted up again, she'd have to go to Butner. As she said, "I wanted to go to Butner." Duh. What would you do? She has discovered a way to control the world to reach her goals: feeling safe and liked. That's not crazy. But it sure as hell makes life difficult.

The immediate problem is that there doesn't seem to be a child psych bed available in the state. Some feel that she is too difficult for them to handle. The ones that can handle her have no beds. It doesn't help that it's the weekend. Butner, being the state hospital, is mandated to take her, but only if there are beds. They don't have any either, so Elizabeth waits in the hospital. She's only been there about 50 hours this time. Our record is 74 and I suspect we'll beat it this time. She tells the nurse she can speed things up and so she starts acting out. They have to sedate and restrain her. I don't really blame her. Those little cubicles make me a bit violent too.

I spent all day yesterday working to keep her from going back to Butner. If we reward this behavior by giving her what she wants, it will take a long time to unlearn it. The social worker there reads me the list of places she has tried. Finally I have to admit that I can't fix this one and start thinking of how to redeem it.

A digression: as our legislators talk about cutting the budget, one of the areas that may be cut is mental health. One result of that is children and adults waiting weeks for a hospital bed. This is not acceptable. People with mental illness do not need to be stuck in a tiny cubicle waiting for treatment. Taxpayers are not saving money by doing this. I would guess that her ER treatment is far more than it would be in a properly staffed unit.

And how am I doing?

When I was a child, we used to fish in the creek near our house, using chunks of bologna as bait. I never caught anything, but I did love seeing my bobber go under and then pop back up empty. I am like one of those bobbers. I may go under for a brief violent moment, but I pop right back up. Last weekend I crashed for a day; this weekend I am merely resigned.

I love my daughter. But I can't cure her nor fix her; I can only love her as she is and work to shape her world so that she can be successful. Sometimes it works, much of the time it doesn't. And so I shift gears and try something else. So often I tell my students, "The only reaction you can control is your own." It's good advice if I do say so myself.

I find solace in dark humor shared with other parents of children with mental illness, in a beautiful handwritten card from a friend, in an unexpected gift. I find joy in small moments that are all the more precious because of their dark setting: eating ice cream under the "supermoon" last night; holding one of the kittens who looks up at me adoringly; watching a student collapse in giggles; having dinner with Claire and listening to her tell a funny story. I feel contentment in doing my job well, in having a conversation with a friend, in rereading a book I love. I am not unhappy.

On Friday, after I received the call telling me Elizabeth was headed for the hospital, my friend and I talked. She works with cancer patients and we talked about the fact that sometimes one has reason to be sad. It's not pathological. It's a normal part of living and doesn't always need to be treated. I have moments where I am unhappy about my life. But I have many more moments when I am content.

The truth is that I am proud of both my daughters. I have no desire to trade either one of them in. They are who they are and I am honored to share their journeys.

Even the one who tells me she likes Butner because their padded room is nicer.

Always Lent and never Easter

Maybe it's because I've been up since 4:00 am after falling asleep at 2:00 am that I'm even finding this funny, but I am obviously into dark humor . . . do you find anything at ALL funny in the fact that my child got kicked out of a PRTF for bad behavior? Five friggin' days she made it before they said they couldn't handle her. And they only have two kids. No one ever gets kicked out of PRTFs (that stands for psychiatric residential treatment facility). I could do a blog post on things Elizabeth has been kicked out of, but I can't remember them all.

They took her to Baptist Hospital and left her in the ER. She's been there the last 24 hours. SueAnn of Baptist just called me and said they are waiting to get on Butner's waiting list (That's kinda funny too—waiting to get on a waiting list). SueAnn gave me the number to talk to Elizabeth, which I just did. Her first question, "Do you hate me?" I assured her I didn't, but that I was sad that this had happened. She said, "Well, I told you I wanted to go back to Butner." She was remorseful that she had put me to trouble and that I was sad, but seemed very pleased that she was going back to CRH. It's one of the hardest things I've ever done, but I'm not rushing down there. There is no sense in reinforcing something more than I have to. She's coloring, snacking, and watching TV.

I played online solitaire for two hours in the middle of the night. It kept asking me "Are you ready to give up?" And I kept having to hit "yes". And I am.

Our QP (mental health case manager) called last night and she was livid. I think I take some comfort in the fact that everyone in the mental health field that I've talked to is incredulous. So much for the Methodists. Maybe the Episcopalians will take her. Baptist Hospital will keep her in the ER overnight but they don't want her either, so they plan on holding out until Central Regional will take her.

Ah, so it goes. It's not an earthquake, tsunami or nuclear meltdown. If I had health insurance, I'd go check MYSELF into the psych ward. But I don't, so I can't. Hell, I can't even afford to be suicidal. I think I'll go eat some chocolate. Maybe it's not the healthiest coping strategy, but I guess it's not the worst either.

At least gas and the laundromat are cheaper in Butner. And I won't give up. But I sure am tired.

Never can say goodbye . . .

Even though the pain and heartache

Seems to follow me wherever I go

Though I try and try to hide my feelings

They always seem to show

Then you try to say you're leaving me

And I always have to say no...

Tell me why

Is it so

That I

Never can say goodbye

No no no no, I

Never can say goodbye

This is one of Elizabeth's favorite songs. She loves the Jackson Five and she sings along loudly with this song. I found myself singing it as I left Butner for what I hope is the last time for a while. It was hard for me to leave too.

Goodbye laundromat. Goodbye Credit Union with your nice tellers. Goodbye Bob's pie. Goodbye Butmoor with all your fast food. Goodbye Stem. Goodbye this chunk of my life.

On Friday night when I visited her, she cried about going to the new school. She wanted to go home to me, to her sister, to her cats. She was sure we didn't love her. She was sure she wouldn't live with us until she was 18. I held her in my lap like I did when she was little and rocked. She wasn't pacified by talk of ponies, the campus cat, the pool, the climbing walls. She wanted to go home. And if she couldn't go home, she wanted to go back to Wright School. And if she couldn't go there, she wanted to stay at Central Regional Hospital. Elizabeth is a big fan of "better the devil you know than the devil you don't." Truth be told, I was scared too. Goodbyes are so hard.

I had to fly to Atlanta on Saturday morning for a family funeral and then back on Sunday. On Monday, CRH would take her to the new school, where Claire and I would meet her. I explained the plan over and over again. She was still anxious. She had learned the CRH jargon and routine and was looking at having to learn it all over again.

Goodbye overhead assistance calls. Goodbye courtyard ball games. Goodbye high acuity unit. Goodbye visiting rooms. Goodbye nice nurses who braided her hair. Goodbye Ms Cox and Dr. Gazzola. Goodbye long halls and shuffling men with vacant eyes.

I am grateful for her stay in CRH. Butner has always been a nightmarish place to me—so much pain there, with the prisons, and substance abuse rehab, and the state mental hospital, and myriad other institutions. But I've found the pain is balanced by a great deal of caring. After our first night, I can say we received some of the finest care we've ever gotten. Part of it was that the staff had the time to be intrigued. Her psychiatrist had a caseload of six; her social worker, four. Value Options, North Carolina's Medicaid gatekeeper, wasn't on their backs to kick her out after ten days. Six weeks let them do a lot of testing and we left with diagnoses that feel right to me and have some hope attached.

Her primary diagnosis is Disruptive Behavior Disorder, a little worse than ADHD but not quite so bad as conduct disorder. She also has anxiety disorder, nos. That means it doesn't look like most people's anxiety. And complicating it all is a brand new diagnosis of severe receptive-expressive language disorder. I've been diagnosing something similar to this for years, but have always been poo-pooed. When people talk, Elizabeth drowns in an ocean of words. Kids with this disorder have a very hard time in classrooms because teachers talk so dang much. You know how the adults in Charlie Brown videos sound? That's how she hears language. She loves lists and worksheets because she can take in language at her own pace.

Today she and Ms Mary, one of her favorite nurses, arrived in Winston about the same time I did. She didn't seem particularly glad to see me. But she was very upset about Ms Mary leaving and stood at the window and silently sulked as she left. We will probably never see Ms Mary again and Elizabeth knows that. She has a hard time with people who are in her life for a short time and then disappear. It's a painful fact that object permanence doesn't seem to work with people. I've never liked that fact either.

We walked down to her cottage. This is a brand new program in a 102 year old institution. They work with kids from ages six to twelve for four to twelve months. Elizabeth is one of the first two kids, both of whom start today. The staff is excited and ready to get going. I feel confident that they will make this placement go well, both for Elizabeth's sake and for the program. We went through her clothes and put them away. The other new kid arrived and we went out to greet him. She had her physical and then we said our goodbyes and left.

Goodbye . . .

Getting there from here

Saturday night, sitting in the Espresso Laundromat in Butner, NC, drying laundry and watching Jeopardy with Claire. After I posted this as my Facebook status, I got lots of emails asking how I got to that place.

Answer: I got on I-85 in Durham and drove to exit 189 in Butner, present home of Bernie Madoff.

I know that's not what you are asking. And that's not really the answer. But lately that's about the best I can do, even as I know that requests for information are expressions of caring. Facebook sentences are so much easier than stories and Facebook friends offered concrete expressions of help in ways that didn't seem to come from other sources.

But today the right person asked the right question in the right way, one that wasn't an attempt to judge or fix. It was someone who didn't know me and who had too much pain and too little time to care at that moment. But he did. And then the wrong person—or at least one that I had no expectations of—offered an act of kindness so helpful that I wanted to cry. And the combination of these two events allowed me to breathe and think and tell a piece of the story.

I didn't expect to be in Butner, home of the state mental hospital, something to be avoided at all costs. Elizabeth has been in a therapeutic foster home, called level II care in the mental health system, ever since she hurt me last spring. The foster home was going fairly well, but school was not. She seemed happy enough, but "Aunt Jackie's" wasn't home and after every visit, going back to the home was an ordeal.

In January she went on a church youth group ski trip. She had a good time and did well. She was out of school on Monday, so I offered her the chance to spend the night and go back to Aunt Jackie's before I went on to work myself. We had a wonderful Sunday evening, playing board games with Claire and her boyfriend, pretending to be the kind of family we aren't and doing a damn good job of it too. Such a good job that she decided she was not going back. She would force me to wreck the car or hurt me badly, but she wasn't going back.

When we got to Aunt Jackie's, a neighbor observed our struggle, and thinking some poor white woman was being mugged, called the police. They came and took Elizabeth to Duke's ER. We spent about four hours there, sitting with our Kenyan sitter, talking to the psychiatric social worker, and I assured her that Elizabeth usually calmed down after an ER visit. Elizabeth said all the right things to the doctor and she released us. Elizabeth's therapist came to take her home.

After a great deal of difficulty and help from Duke Security, she arrived at home. But not for long. Two horrible, unprofessional and humiliating police visits later, we arrive back in the Duke ER. Same Kenyan sitter. Same billing clerk. Same nurses. Same room. The resident psychiatrist informs me that they really aren't there to work with undisciplined children and will probably send us home. I inform her that we will probably be back for a third time. She rolls her eyes and goes up to find the attending.

The attending decides to admit, but Duke has no psych unit. They tell me it will be days before a bed can be found in the state. I expected this. I push the now sleeping Elizabeth over on her gurney and crawl on with her. Later I feel our sitter cover both of us with a blanket and slide a pillow under my head.

In the morning, I give thanks for the hospital wireless while Elizabeth watches TV. The TV gets stuck on the golf channel. Finally they call the TV remote technician (who knew there was such a position?) and she comes and switches us to Disney. Later, miraculously, we're told that a bed has been found, in Central Regional Hospital, a 452 bed hospital for those with mental illness. It's a state facility. They have 32 child and adolescent beds and Elizabeth gets one of them. She is stoic as we wait for the sheriff's deputy to come and take her to Butner. The deputy is terse and won't look at me. I follow in my car. We've only been in the ER for 24 hours, which must be a record.

When we arrive, I ask to see Elizabeth, but I'm told that they are doing intake and I can't see her yet. I sit in the lobby and cry. It's the change of shift and people walk by me, people who are nurses and social workers and doctors, and they pretend not to see me. It's time to go home. I wish I had a friend who would call and say "I'm on my way!" but no one does and I can think of no one to call. I ask again to see her. Not yet. After three hours, I ask the receptionist to call. She does and is told that I can't see Elizabeth, that they aren't convinced I'm her legal guardian.

I'm tired and hungry and scared and lonely. That's my excuse. I can't believe what I'm hearing and I proceed to pitch a fit. The receptionist tries to calm me as I yell in the phone, saying things like you have no legal right, and I want to talk to a supervisor, and this feels like One Flew Over the Cuckoo's Nest to people too young to even know what I'm referring to. Finally they ask Elizabeth why she is in foster care and she tells them that she had broken my head. No, I had never abused her. I realize that the horrible treatment I'd received all day—the police, the resident, the deputy, here—all was because they thought I was an abusive mother who had no right to see the child she'd hurt. All these people who are part of the mental health system don't know the difference in a level II home and a DSS foster home. They think she has been taken away from me because I was a bad parent. They still aren't convinced.

But they do let me see her for a few minutes. She touches my name tag with her finger. F-0 she traces. That's her unit name. The 0 looks like a teardrop she says. That's because we're sad, I say. But the F stands for fine, and that's what we'll both be. She nods. I'll be back tomorrow, I say. She nods again.

She's been there a month now. We're lucky; at UNC she would be out in ten days. Here they can keep her longer. Her social worker has a caseload of four; her psychiatrist has a caseload of six. I can't ask for more. They feel she is over medicated and pull her off most of her meds. They feel her diagnoses are not accurate and are intrigued enough to want to find a new one. They are kind enough, but it's a cold place, with lots of locks and rules. I can't even see her room. But at least they no longer think I'm a bad parent.

And so I drive the 54 mile round trip to Butner on a daily basis. I now do all my banking in Butner, and since the dryer died, I dry my laundry here as well. I eat most of my meals in the car. I've become preoccupied with finding my way around the little town and I drive back roads while the laundry is in the dryer. I find the even smaller town of Stem and good barbecue and wonderful pie.

If I can't know where we're going, I have to know where we are. And I don't know where we're going and I'm not in a huge hurry to find out although there is a lot of pressure to do so. Events seem out of my hands and I watch with mild interest as people make decisions that they pretend I have a say in.

See, it's not a good story, just a list of unpleasant events. There is no ending, happy or otherwise. There is not even a take-home point. Maybe later.