Do not be afraid

Our Christmas Eve tradition is to go to the 5:00 pm service, one that includes a slide show narrative of the Christmas story as told by Luke and enacted by children in our parish. For years it was my pleasure to put this show together, a job I loved because every year I found something new in the story. Tonight I watched with equal joy(plus no stress!) and yet again, something new stood out.

Mary is quietly minding her own business, perhaps mending or peeling vegetables, when suddenly an angel appears. "Do not be afraid," he begins, and then he gives her news which rocks her world. Those words appear again, this time to shepherds watching their flocks by night. Once again, an angel appears, and they are terrified. When the girls were young, one of our favorite Christmas books was This Is the Star, which features an awe-ful angel, filling the page with light and glory and majesty, appearing to shepherds who understandably cower in fear. "Do not be afraid," the angel tells them. After watching this celestial light show, the shepherds leave their sheep to go to Bethlehem.

Do not be afraid. Those words resonate with me because there is so much fear in the air right now. As a small child, my nephew had rules for monsters: they were not allowed in the bathtub or his bed, two places of great vulnerability. Even as more cynical adults, we expect safe places. Yet twice in ten days, a shooting struck where we thought safety lay. Twenty-six children and adults were murdered in classrooms with tiny coats on hooks and crayons in desks and abc's on the wall, leaving a schoolful of survivors who will never feel safe again. And today, firefighters responding to a fire were picked off by a sniper, killing two and severely injuring two more. Firefighters are the ones who come to save us. Without them, life becomes immeasurably more dangerous.

Do not be afraid. Almost a year has gone by since Elizabeth was sent home from her psychiatric residential treatment program by people angry they couldn't fix her. Anxiety is a horrible thing and Elizabeth suffers greatly from it, especially at night. Many times our small house feels too big and unsafe, and we end up in the car driving for hours in the dark until she falls asleep. Many times her social anxiety causes her to strike out at others, saying unkind and hurtful things. I feel worn out and stretched, but there is no margin for error with her and so I must not show my exhaustion and hopelessness. Her anxiety is contagious, causing others to fear her and worry over what she might do next. Even now, almost midnight, she lies in her bed, anxiety and excitement over Christmas tied up together, keeping her awake.

Do not be afraid. Many are without work and struggle to pay their bills. I HAVE work, yet I still struggle. Elizabeth is an expensive child and I juggle where the money goes. I try to triage: trip to the vet for a cat, five separate plumbing problems, a broken window in the girls' room, new tires, shoes that don't hurt, bills unpaid. I find myself paralyzed, unable to decide, until one becomes a crisis and the decision is made for me.

Do not be afraid. As I reread Luke, I'm struck by how Mary and the shepherds respond. They take action, Mary saying yes and the shepherds taking a roadtrip to see for themselves. But first they stop being afraid. That's an important detail because if we take action while we are still afraid, it's a very different action. When we are afraid, we see the world as a dangerous place with people who are trying to take what is ours. We may think we need more guns to protect ourselves against the bad guys. We hoard our money out of fear of not having enough. We worry that people are taking more than their fair share, even if we don't need it. We make our world smaller and, we hope, safer. Paradoxically, the smaller and more heavily armed it becomes, the more unsafe it feels.

One of the healthiest suggestions to come from the Newtown shooting is to do an act of kindness in honor of each victim. I decided to take this task on; doing so has forced me to expand my world, to look outwards instead of circling the wagons. Paying for the car behind me in the drive-through or letting someone go ahead of me in line reminds me that they are people like me, tired and broke and afraid, and not someone to guard against. It's not charity but community, an acknowledgement that we really are all in this together.

Meanwhile others have expanded their world to fit our messy family in. When I could no longer stand it, Deb, Amy, Sadie, Summer, and Sarah invited Elizabeth into their homes for afternoons and days, allowing me to breathe again. Our friend Tom meets with Elizabeth weekly, gently helping her to understand her story and her fears. Several significant and unexpected gifts, one from our Christmas Eve magi, have taken the edge off our financial crises, and once again reminded me that we have enough. The teachers at school take a deep breath and try again to help her succeed.

Tonight I feel peaceful and calm. Claire is home from college and Elizabeth has finally fallen asleep. We spent the evening with friends and Elizabeth's birth family. The stockings are filled and the presents are wrapped. I'm sleepy and grateful for family and love and laughter and good food. I'm thankful for fear-free moments, when I can see clearly and act wisely.

Do not be afraid. It's a choice as well as a call to action.

how Lindsay singlehandedly saved Al Gore's press conference

The Democratic presidential primary in 1992 was confusing and filled with somewhat unknown players. President Bush's poll numbers were extremely high and his reelection seemed to be a certain thing, and the first-string Democrats had no interest in running a losing campaign. I can't even remember whom I voted for in the primary; by the time the North Carolina primary rolls around, there is no mystery about who the candidate will be and our votes don't really count for much except gravy. And Bill Clinton, the candidate who surged ahead, fell behind, explained his affairs on national TV, and finally crossed the finish line with more than enough delegates, looked like a very long shot.

But on a hot July night, my sister Leslie and I sat in her bedroom, she ironing while I planned lessons. The TV was on and it was Clinton's night to speak, to accept the nomination. He sounded like Elvis and he strung simple words together in a mesmerizing way. Nothing wonky about that speech. My lesson plans and phonics cards slipped off my lap as I listened to, no, FELT the cadence of his words: "That's what the New Covenant is all about." I noticed Leslie paying a bit more attention: "But this is America. There is no them. There is only us." Finally both of us were sitting at the end of the bed, transfixed: "We can do it. We can do it. We can do it." We looked at each other. I don't know which one of us said it first, but we both knew what we had to do: "Let's go work for this guy."

Which was how we found ourselves in the newly-rented Democratic State Headquarters in Raleigh in late July with a toilet brush and a broom. Full of enthusiasm, we had presented ourselves ready to change the world and found that it first needed cleaning. It wasn't exactly what we had in mind, but it had to be done and we were certainly qualified for the job, so we dove in. It was a rabbit warren of offices, far too big for a state not expected to be in play, and the party chairmen were walking through, deciding who should be in which office. As they came to the room we were cleaning, Leslie piped up: "Have you thought about having a childcare room?" They looked at her silently. Yikes. "You know, for volunteers who would like to help, but would have to bring their kids?" My voice trailed off as they turned their attention to me. Okay, obviously a bad idea. The silence continued. They looked at each other. "That's brilliant!" one of them finally said. "Let's choose a room."

Which is how we found ourselves sharing the position of State Volunteer Coordinator. Our job was to recruit and assign volunteers to the myriad tasks that had to be done: looking up phone numbers, setting up chairs, running materials to people who needed them, answering phones and questions. One of our first tasks was to set up the Family Values Childcare Room, and it was used, a point we were proud to make when Hillary Clinton toured it. There were nine candidate or candidate's wife visits, along with a few celebrities, but it was the volunteers we met who left us in awe. Sanitation workers in bright orange shirts came in after work, so tired they could hardly stay awake, but determined to help in any way they could. More than one elderly woman sobbed in our office, telling about the illegal abortion their mother or sister or friend had, and their determination to make a procedure no one wants to have legal and safe. College students came in great numbers. There were African-Americans and white people, gay and straight, long haired guys on bikes and men with sunburned arms in pickups. There was no them; there was only us. It was heady stuff.

As the summer moved into fall, the race became more competitive in North Carolina, and things heated up around the office. Lindsay, Leslie's daughter, was three at the time, and Leslie and I both had full-time jobs, but that was no deterrent. I'd work late afternoon until she got there bringing Lindsay. We'd both work until about ten, eating kung pao chicken in large quantities and trying to come up with ridiculous numbers of volunteers for the ever increasing number of tasks. Lindsay moved from desk to desk, occasionally falling asleep under one. Once I looked up to find her showing Ron Brown around the office. Another night Valerie Harper walked in holding her. Around ten, I'd take her home, leaving Leslie to finish up and close down the office. It was a 40 minute drive to Hillsborough; she'd sing Christmas carols to keep me awake, but a couple of times I was so tired I forgot to stop and went all the way to Greensboro.

In September, one of the state chairs came running into our office. Al Gore was having a press conference at the Ronald McDonald House in Durham about the Family Leave Act. One of the families who was part of the press conference had to drop out. Our boss was asked to find another family on very short notice. "Well," he said. "We have one, but it's not a Dan Quayle type of family. It's two sisters raising a child." Send them over, he was told.

Which is how we found ourselves sitting in a 100° room with several other families, waiting on Al Gore to make his appearance. There was a phalanx of bored-looking press types helping to raise the temperature with their sheer numbers. At this point in the campaign, everyone knew there were no surprises with Gore. The jokes about his woodenness are so true that he collects them. On the bus tour we took with him and the Clintons, you never knew what Bill was going to come out with, but you ALWAYS knew what Al Gore was going to say. We stood behind the stage at fairgrounds and courthouses, unseen by the crowds, like a small army of zombies, reciting the speech from memory, complete with his jerky and rehearsed arm movements.

Gore arrived, was introduced, and proceeded to move through the press conference like an automaton. I saw one of his aides close his eyes in exasperation. Another desperately suggested he meet each of the families who were present, so he moved around the room introducing himself to each of us. As our turn came, I leaned down to Lindsay. "Do you know who this is?" I asked. She looked up at him with a wrinkled brow, obviously disappointed. "Yes. It's Al Gore. Where's Bill Clinton?" Gore started laughing and then asked if she'd come sit with him. Lindsay, who has never met a stranger in her life, jumped up and sat on his lap, while Leslie and I silently prayed for her to remember her newly-acquired  and somewhat shaky toilet-training, at least for that day.

And he . . . relaxed. As Lindsay covered him with her blanket and offered to share her pacifier, he patted her arm absently while he waxed eloquent about why we needed the Family Leave Act, about how families with a sick loved one need to be able to care for them without fear of losing their jobs. Four years before, his young son was critically injured when he was hit by a car; he had lived this. This was something he was passionate about, and it showed, finally. Of course, I thought, as I watched him with Lindsay, he's a dad. He knows how to do this stuff. The press no longer looked bored; indeed, it sounded like the machine guns in old war movies as cameras clicked continuously.

The press conference came to to a triumphant end and his aides found us in the crowd. "We owe you one," they said.

Which is how we found ourselves in the front row of Bill Clinton's inauguration, sitting next to Jesse Jackson and the Marine Corps Band and a Blood and a Crip. But that's a story for another time.

out of the nest

Not too long ago, I had a baby, a cute little chubby cheeked thing. At least it FEELS like just a bit ago, and I still have my baby weight to prove it, so it must be true. It's an odd thing though—I dropped her off at college today. She was never a clingy child, but oh, how quickly a mom can become superfluous! Claire's actually going a year early, but the fact that she did all the application stuff herself when I wasn't paying attention lets me know she is probably ready, even if I'm not. During the summer I had numerous panic attacks about whether she was properly prepared for the real world. I finally sat down and made a list and I am feeling better about things. I will not claim that I taught her all these things but I did some and she picked the others up somewhere along the way.

The first thing on my list, an item of cruciality, is her ability to make a white sauce, which means she can cook loads of things. Not only that, but she can make a gluten-free, dairy-free white sauce. She can also make killer chocolate kahlua cream cupcakes, a skill that will make friends and influence people. She is not afraid of quinoa and she knows many uses for coconut oil. Her room is right next to the dorm kitchen and she will put it to good use.

She can do her own laundry and has for years. She can also use a laundromat, something that I've insisted both of my kids learn because there will be a period in their lives when they have to do that, and there is no point standing around looking foolish, jingling quarters and wondering which machine to use and where the detergent goes. Along those same lines, she can pump gas. Although there are times I've doubted it and today is one of them, she can clean a bathroom. She can accessorize with confidence and style; I did not teach her this.

I did read her Dr. Seuss and Winnie the Pooh and Laura Ingalls Wilder and the Chronicles of Narnia and the first Harry Potter. I couldn't read fast enough for her liking after that and she politely relieved me of that duty, but I'm pleased that I got those in because they are all critical to a sane and thoughtful childhood. And she continues to read an amazing range of things, including all of Shakespeare and Stephen King and several online scholarly journals.

Continuing on the Winnie the Pooh theme, she knows how to play Poohsticks, something we did with her friends when they were toddlers. A few years back we were at a youth group picnic, and the frisbees and footballs sat unused, the teens nowhere to be found. When I investigated, I found them playing Poohsticks on the same park bridge they had played on when they were younger. It's a good thing to know how to slow down and watch a stick bob in the stream and this is one of my proudest parenting accomplishments.

She loves Bruce Springsteen and she will almost certainly say that I had nothing to do with that. I don't mind her believing this; she probably doesn't remember the Springsteen cassettes I used to play her on her brightly colored Fisher-Price battery-operated cassette player. Last summer her boyfriend's father took them on a pilgrimage to Asbury Park and she got to see Bob Dylan while she was there. That made me happy. Among the things she chose to take to college were two prints of Bruce in concert that her uncle took years ago.

Contrary to what many want to believe about this younger generation, she, like others her age, knows how to work; in fact, this school year and summer she worked two jobs and plans to work in college. One of her more marketable skills is that she can teach someone to read, which is essential to helping others be successful. She can milk a cow—well, sort of—and feed pigs. I don't know how important that is unless one is a cow or a pig or a farmer, but I'm glad her job skills are so varied. And after her first semester at State, she will be well on her way to being a beekeeper.

She has excellent taste in guys. For that I heave a great sigh of relief; there is a possibility that she won't make the same dumb relationship choices that I did. She doesn't feel the need to change to please her boyfriend, nor does she try to change him. And she has a life apart from him. Those characteristics greatly improve her chances of being happy. She has good friends who have many of her same traits, and so I don't worry about her when she's out.

I'm not sure where she got her strong will, but she has one and she has convictions. Perhaps they aren't the same things I believe, in fact many of them aren't. But she never lacks for an opinion (as many of my Facebook friends will attest), and she can articulate a position and support it with facts. She circulated her first petition in kindergarten, one to convince the teacher to let the girls play football too. I still have it. She became a vegetarian at age seven. At age ten, she and some friends started an organization to feed children in Haiti, one that continues today. Last fall she traveled to meet the children she has helped feed. And she can write and read and speak. I am convinced that it doesn't matter what she majors in; someone with those skills will have her pick of jobs.

While she has no patience for bigotry of any kind, she is tolerant when it matters. This is a good thing because I strongly suspect that her roommate was assigned on a day when the housing office was very bored. "What if we take THIS kid and put her with THAT kid?" Riotous giggles ensued, I know they did. "Make sure you put a video camera in the room and throw in some political material to stir the pot!" It may not always be easy, but I know with certainty that she will be kind, and I'm proud that she didn't do the knee-jerk thing and ask for a roommate change straight away.

While hanging out at the church waiting for me, she read the Bible and knows it well enough that she can quote fake Bible verses and almost fool me. Leviticus is her favorite book, which I find odd, but I think she likes reading the arcane rules. This is not to say that she believes in what it says, but belief is not something I have any control over and I'm always bemused by parents who think they do. I'm just impressed that she actually read it. Too many people who claim to live by it have no idea of what's actually in there.

She knows how to take the bus and can get around Chapel Hill/ Carrboro without a problem. Soon she'll figure out the Raleigh/ Chapel Hill bus system. Public transportation can be scary, but once you've learned to navigate one system, you can extrapolate that to other cities. This opens up New York, London and Paris. She'll be okay where ever she goes.

I sent her to Clapping Hands Farm Camp, one of my best parenting decisions. She learned so much there, among them that NO is a power word and must be honored. She got to progress from an annoying younger camper to a trusted counselor and in the process learned a lot about perspective, childcare, and tick removal. Camp's consistent message is that love is really what it's all about.

She can use commas and she even knows what an Oxford comma is. She is dyslexic, but she has made spellcheck her friend, and so even her texts are correctly spelled and punctuated. She can touch type. Although she has flirted with PCs, she is at heart a Mac person. This is important to me because the two kinds of computers support different kinds of thinking, and I am convinced that while PC people keep the world running, Mac people are the ones that will change it.

Are there things she can't do? Plenty, chief among them driving. But she'll learn if she wants to and in the meantime it saves me a bundle in car insurance. Carrying on a long-standing family tradition, she's not so great at math. She doesn't like donuts or watermelon; this causes me concern. Directionality isn't really her thing. I'm comforted by the fact that the list of things she CAN do is so much longer than the list of things she can't do.

As I tally up marks in the plus and minus columns, I realize this is really about whether she will look back with pleasure on her childhood. Living with a sibling with mental illness is no piece of cake, and it often caused me to be absent or distracted at critical times. I know there are no perfect childhoods; divorce, abuse, abandonment, illness, pain, and death are among the things that others suffer. We aren't so unique, but I still have moments of wanting a do-over.

However, the experience of living with Elizabeth and loving her has added a depth to Claire that might not have been there if it were just the two of us. When a friend argues that we are a post-racial society, Claire looks at me in disbelief that anyone could be so naive when her experience living with a sister of color shows her so clearly this is not true. When Claire's friends struggle with depression, anxiety or eating disorders, she is able to see the person behind the illness, just as we hope Elizabeth's friends will do. She knows a lot about the complexity of authority: we've had good cops and bad ones, and we've had competent and incompetent docs. She's seen people in positions to help hurt her sister and she's seen kindness from someone mopping the floor in a hospital. There is enough pain among those who share our circle that she knows the futility of asking "why us?" She has never had the luxury of seeing the world in black and white. In our world, it's all shades of gray.

When Claire was between the ages of two and five, we sat down every evening when we arrived home and had a cup of tea together and talked over the day. That's when it became apparent that this little person had things to say. When Elizabeth became mobile, our tea time came to an end, one might say a crashing end, but I still cherish the memories of those afternoons. As a teen, those times were replaced by her sitting on the end of my bed telling me about her evening, but now that ritual's time is over too. I need to remember that IT will be replaced with something as well, even if it's not yet apparent what it is.

I'm feeling better now. If she will grade on the curve, perhaps I won't do too poorly, especially if she'll give bonus points for the dolphin ride. And I do deserve some credit for not crying today.

with a grain of salt

Three years ago, I woke up in the night with excruciating heartburn and nausea. I suffered through those endless early morning hours until I knew my sister Leslie was awake. She's a family nurse practitioner, and we give the family in the term a whole new meaning. It's always helpful to know she's there to triage, even if she's often in cahoots with my doc, W.  At 7:00 am I finally call her. "Go to the ER now," she orders. I had health insurance then, so it WAS a possibility, but the ER? I spend far too much time in ERs as it is. Besides, she's my BABY sister and I don't have to listen to her. "I'll just wait until W's office is open," I reply. I lie back down, trying to breathe, and sure enough, five minutes later, the phone rings and it's W. Leslie may be my baby sister, but she has my physician's home phone number. "Call 911 and go to the ER," W says firmly. I argue. She offers to pay for the ambulance. Finally I agree, although I wasn't going to call an ambulance. The last time I called them for a neighbor, I ended up chasing them around the neighborhood because they got lost, which happens regularly since our numbering is so strange. That seems a silly thing to do in the dark while having chest pains. I do call my neighbor who is happy to take me to the ER on her way to work.

Here is a secret. If you ever want to be seen in the ER or physician's office quickly, work the words "chest pains" into your conversation. "I'm here because I sprained my wrist and seem to be having some chest pains . . . " "I have a sore throat, and did I mention the chest pains?" You don't even have to finish the sentence because things will happen quickly. No triage room for me; they slammed me in a wheelchair and had me back in a cubicle before they even got insurance information.

As the morning went on, the pain increased. My sister showed up and I put her in charge and abdicated all responsibility; they administered morphine, and I remember very little of the rest of the day, which consisted of chest x-rays, CAT scans, blood tests, and my being a smart ass to the endless parade of med students and residents asking the same questions over and over again, or at least so I'm told. They admitted me overnight and discharged me the next morning. Before I left, I was visited by the attending and a covey of med students. They told me it wasn't my heart and expressed bewilderment as to what it could have been. I told them I'd had less severe episodes of the same pain, but they shook their heads in puzzled unison and toddled on. 

The pain was bad enough that I didn't want to repeat it, so as soon as I got home, I turned to Google. It only took a minute to find my diagnosis: gall bladder. I fit the demographic perfectly and my symptoms matched as well. I called W and told her. "Well," she mused, "that's easy enough to find out. Let's get you in for an ultrasound." She did and my guess was correct. I was highly indignant that the cardiac docs at UNC were so focused on my heart that they had no clue what else those symptoms might mean. It was really a waste of time and money. Someone needs to tell them about Google, an invention that could revolutionize medicine. W referred me to a surgeon and we scheduled the operation for a few weeks out.

Elizabeth was, at that time, seeing an acupuncturist, who suggested strongly that I forgo the surgery. He  gave me an alternate treatment to try. It consisted of drinking shots of olive oil, chased by cold grapefruit juice. What the heck, I thought and planned it for the following Sunday. It was pretty disgusting, but I got it down. I had cleared it with Leslie, who is more open to alternative medicine than most traditional practitioners, but she ran into W at church and let her know where I was and what I was doing. I really felt that was not information W particularly needed, and I was right because she left church and charged over to my house to berate me for my stupidity and make me promise never to do that again. And I thought doctors no longer made house calls!

And I've not needed to repeat the olive oil procedure. Three years have gone by with no gall bladder pain. I've had numerous people tell me that this treatment can not possibly work, and even explain the science of why it can't work. But the truth is, it did. The ultrasound of my gall bladder that was taken at that time indicates that I should be in a great deal of pain. But I'm not.

And that is a long story to get me to the point I want to make. Over the years, Elizabeth has had probably ten different diagnoses: oppositional defiant disorder, intermittent explosive disorder, ADHD, anxiety disorder, as well as others. When she was two, we got her first diagnosis: oppositional defiant disorder. I went home and Googled it and spent the rest of the day in tears. When the psychologist found out, she offered to change it. "Huh?" I said. "It's just for insurance purposes," she said. "It's not like it's carved in stone."

That should have been my warning that psychiatric diagnosis and treatment are inexact sciences. But as the years went on, I listened hopefully to each new doc and took his or her new diagnosis to heart. Perhaps this doc would be the one to figure it out. Perhaps this person knew what he was doing. Perhaps this drug would be the one that did it. But things just kept getting worse.

Most of the things that worked, I've figured out on my own. I owe Leslie the credit for introducing me to the Feingold diet, in which I removed petroleum-based food dyes, artificial sweeteners and flavorings, along with high fructose corn syrup, from Elizabeth's diet. We saw an immediate difference. She does not do well with petroleum in her body. Most of her doctors rolled their eyes and talked about the fact that there was no science to back it up, although that's not entirely true. When she was hospitalized for the first time, I lost control of her diet. These very fragile children were being fed Froot Loops and Jello as well as brightly colored medications. There was and is very little recognition that the foods we eat may have an effect on our brains. There was no understanding that the systems of our body may be interlinked inextricably so that what we do to one part affects another.

January 2011 started a horrifying journey through the crisis mental health system. We entered it via Duke's ER after a hellish day of her attacking me. There a psychiatry resident told me I was misusing their facilities because I was unwilling to discipline my child. When I explained that this was an ongoing problem that was so much more than just behavioral, she rolled her eyes and stomped off to find her attending, who thankfully overrode her. From there we went to Butner, the state hospital for those with mental illness. The care there seemed good but she got worse instead of better. They discharged her to a PRTF (psychiatric residential treatment facility) in Winston, but they couldn't handle her and dumped her in Baptist Hospital's ER, where she remained for ten days because they didn't want her and no other hospital would take her. She deteriorated to the point that she was, at times, shackled to the guerney; they finally admitted her, where she stayed for a month until a bed at Butner came open. Another six weeks was spent there before being sent to a PRTF in Kinston. After fifteen minutes observation, their psychiatrist threw out the months of testing and observation, changing her diagnosis to psychotic and removing her from most of her meds because they didn't fit his diagnosis. Denying her medical diagnosis of diabetes, they decided she was underweight and packed 30 pounds on her, sending her blood sugar soaring. After she continued to deteriorate, they sent her home, saying she was too difficult for them.

And so, on February 16, I woke up with a child no one could handle and no one wanted. I looked through the stack of reports from the various places we had been. Very few of them agreed with another. And so I did what I should have done long before: I took what made sense and threw the rest out. Psychotic? Nope, psychosis doesn't occur just during times of frustration. Bipolar? I'm not buying that one either; only one doc diagnosed that and I have serious concerns about his competency. Anxiety? Yes, debilitating at times, but it doesn't look like most anxiety in kids. Expressive-receptive language disorder? I have said that for years and no one would believe me. Sensory issues? Hell yes. She still can't be trusted with liquid soap and she wears the tightest clothes she can find.

Put together, you have a child who is not comfortable in her own body and who loses the ability to communicate when she is anxious. Her language drops to about a two year old level. And what do two year olds do when they fall apart? They hit. They throw. Sorta like what Elizabeth does.

And so I made my own treatment plan. With her pediatrician's help, we got her into UNC endocrinology, where they put her back on meds for diabetes and thyroid disease. Our intensive inhome therapy team from Carolina Outreach helped with therapy, psych med management, and coordinating care. Both her pediatrician and her therapist recommended speech as well as occupational therapy. She sleeps with a compression vest, the tightest pants she can find, under a 15 pound weighted blanket. I brush her. Then I enrolled her at Just Right Academy, which provides structure, consistency and help for her academic deficits. And last, I took her to a holistic practitioner.

He strongly suspected gluten intolerance. Elizabeth has two autoimmune diseases, diabetes and hashimoti, a thyroid disease. Dr. Y explained that those often go along with gluten intolerance, and the inflammation in her body, shown by her blood tests her pediatrician ran, make that even more likely. And most interesting to me was the fact that there is also a correlation between anxiety and gluten intolerance. Further testing showed his hunch was correct, and that she was also intolerant to corn, dairy, and millet.

It was overwhelming and at one point I broke down sobbing in the bread aisle at Whole Foods. Who knew they had such a good pastoral care team? The employees surrounded me, giving me hugs, samples, and really good advice. My friend Lisa got me an awesome cookbook with recipes for truly elegant food. Another friend, Jan, practiced and perfected tasty cookies that we all love. And Claire rolled up her sleeves and got to baking. We learned about quinoa flour and xanthan gum, how to curdle coconut milk with lemon juice to make buttermilk for ranch dressing, and the advantages of cooking with coconut oil. The hardest part is finding food on the run.

The food issue has been brought to the forefront by two events. First, Elizabeth was admitted to the hospital for crisis stabilization. It took two days for this nationally known research hospital to come anywhere close to a gluten-free, corn-free, dairy-free, diabetic diet. The first night they sent macaroni and cheese and bread sticks. The nurse sent it back. Then they sent a hamburger on a bun. Finally someone gave me a pad of paper and asked me to write down what she COULD eat. I did: unbreaded, unsauced meat. Fish. Fruit. Vegetables. Brown rice. Quinoa. Salad. Eggs. Beans. Potatoes. They looked at it in surprise; "Wow. That's a pretty healthy diet." Yes, actually, now that you mention it. Yesterday's lunch consisted of black beans, rice, salsa, and salad. Finally!

The second slap upside the head was a meal, one held at my friend Meredith's farm. She provides us with organic vegetables and eggs throughout the year. Last night she hosted a Farm to Fork meal with fresh vegetables from the farm prepared by a Kenyan chef, Njathi Wa Kabui. It was a four course, four hour meal that was vegan and gluten-free. Africans and Americans made up the guest list. The blessing was given by a Muslim; my table included a Jewish couple. The food was so filling and because it was so good, no one overate. We ate on her big porch by the pond, listening to the ducks and the cicadas. I left feeling fed in more ways than one.

And isn't that what we all want? We grab fake food to eat while we are rushing from one place to another, forgetting that meals are more than nutrients, not that we're doing so well at getting those. The word companion comes from the root bread and the prefix with, but so many of our meals are eaten alone or in front of the TV. With a child on such a restricted diet, it's easy for eating to become a grim, purpose driven activity, and that is just wrong. I wonder if our skewed ideas about eating don't contribute to mental illness, especially depression and anxiety. Perhaps lovingly prepared meals using healthy appealing foods, eaten with people we care for could help move a lot of us towards wholeness. I don't want to say that mental illness is not a real thing, but I believe that among the therapies, meds, and techniques we try, care-full food needs to become another intervention.

It's worth a try. Today I smuggled Elizabeth a pocketful of Meredith's grape tomatoes; her eyes lit up and she ate them gleefully. At home, I take the okra from my CSA bag and prepare to roast them with olive oil and garlic. It's too important not to give it a shot.

just a bump in the road

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

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

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

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

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

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

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

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

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

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

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

food as enemy

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

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

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

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

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

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

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

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

one lousy hand

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

I'm obviously a pretty lousy poker player.

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

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

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

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

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

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

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

But not tonight. Maybe tomorrow.

those quiet goddesses are the most dangerous

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

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

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

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

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

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