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.