The Joy of Openly-displayed Knives

This time last year, I was bemoaning my broken house. I lived on subfloor, my washer had died, the guest bathroom leaked, and I hadn't had hot water in three months. None of that is true now. How that happened is another story, but my house is no longer broken.

Elizabeth has been mostly stable, and she has not been hospitalized in over four years. She graduated with a diploma and a graduation party, which was far more important to her than the diploma. She comes home every Saturday and goes back to her AFL home on Sunday. She has full days of volunteering, she takes a hip-hop class, and she works her paying job on Sunday mornings.

One of the gifts of her stability is that I have revived my hobby of plant parenthood. Now I get to see them as plants and no longer as projectiles. Occasionally a pot gets broken, but that's usually the fault of the cats and not the kid. I love leaves as others love birds; each one seems so different and miraculous in their variegation and texture.

But the big news is that I got a knife rack. It's magnetic and I have it on the side of the refrigerator, with all my knives openly displayed. The knives aren't the sharpest, but I no longer have to go through the drawers to find one. They are there right out in the open.

This may not seem like a big thing to you, but it is to me. When you have a child hospitalized for mental illness and they are sending you home without help or hope, the thing that they always tell you is to be sure to lock up the knives. I dutifully did that because it was something to do, even though it wasn't really what was needed.

I am inordinately proud of my knife rack. And I know, as you do, that it's not really about the knife rack. But it's a gift of grace, nonetheless, and I think I'll go look at it again.

Semper Fi

Thomas Edwin McDonough was born April 2, 1931, to Thomas E. McDonough Sr. and Ophelia Jakes McDonough in Richmond, Kentucky. At a young age, his family moved to Decatur, Georgia, for his father’s job as Physical Education department head at Emory University. Tom graduated from North Druid Hills High School, where he was named most flirtatious. During that time he was active in Boy Scouts and attained Eagle Scout. He was a rockstar swimmer for the Atlanta Swim Association, setting numerous records. He attended Emory, where he was a member of Sigma Nu fraternity and where he met his future wife, a young nursing student and crack pool player. Tom swam the breaststroke and relays for Emory and in the HavAtlanta games, an annual event between athletes of Atlanta and Havana, Cuba. He earned both his BA and his MA from Emory. He married Claire Tompkins in 1953, and their first child arrived a year later.

He joined the Marine Corps and was stationed at Camp LeJeune in North Carolina, reaching the rank of 1st Lieutenant. While his active duty time was short, his Marine Corps training and service was one of the defining periods of his life and started his transformation into a pacifist. In 1958, following the birth of his second child, Tom and his family moved to Englewood, Florida, where he was a teacher and then principal of Englewood Elementary; among other accomplishments there, he started a special ed class of sorts, that served those who were experiencing failure in school. He drove around town in his blue Austen-Healy Sprite with a Playboy sticker on the window and all four kids in the passenger seat. He took his children to spend nights at an often-vandalized construction site for an African-American family who was trying to build a home. Claire’s and Tom’s house was open to all who needed it and their hospitality was often accepted. He was also principal of Gulf Gate Elementary, Venice High, and Nokomis Elementary. He was a co-founder of Ekistia, a private school in Osprey, Florida. He and Claire made legendary annual Easter camping trips to Marathon in the Florida Keys, with their kids and dozens of their kids’ friends.

In 1975, the McDonoughs moved to Boone, North Carolina, where he worked for Upward Bound. He returned to school for his degree in X-ray technology, and then moved with Claire to Georgia where he taught X-ray at Griffin Tech. They moved back to Boone upon retirement, at which point he worked for Mast Store. The Episcopal Church, especially Holy Cross in Valle Crucis, was important to him. He served on the Executive Committee of the Diocese of Western NC, and was five times Senior Warden of various churches, twice at Holy Cross. There were many organizations whose work he supported: The Lung Association, North Carolina International Dyslexia Association, Oasis, the NAACP.

But through and through he was a Marine, and that permeated all he did. Although he never saw combat, he was a patriot who believed in defending his country by standing up for justice and peace. He talked often about the comfort that came from knowing that the Marines never left a man behind. And in his life, he constantly worked to make sure none WERE left behind. Whether it was a child at school or in Upward Bound, a foster child or just one of the many runaways that were dropped off by police at the McDonough house, those with learning disabilities, the hungry, or those who had suffered domestic abuse, he was an advocate and a spokesperson for the lost and forgotten. He went with Witness for Peace to Nicaragua. In 2014, he was arrested at the NCGA Legislative Building for standing up for voting rights and education. He wore a Marine Corps cap, and as he was led away in handcuffs, he could hear police officers whispering as he passed, “Semper Fi.”

In later years, much of his advocacy centered around those Marines and their families who were vulnerable to several ailments due to water poisoning at Camp LeJeune from 1953 to 1985. His son Scott, who was in utero at the time of Tom’s service, developed Multiple Myeloma, one of the diseases caused by chemicals dumped into groundwater. Both Tom and Scott became advocates, attending meetings and conferences designed to educate and gain services for those affected. Recently Tom was diagnosed with both Myleodysplasic Syndrome and Non-Hodgkins lymphoma, both Camp LeJeune-caused diseases. He decided to fight the illnesses because he did not want to leave his son and wife behind to fight for this cause on their own. Ultimately the diseases proved too much for him and he died peacefully at Watauga Medical Center on June 9, 2017, with his beloved family by his side.

He is survived by his wife of 63 years, Claire Tompkins McDonough; his four children Linda Ree, Scott, Randy (Andrea), and Leslie (Scott Sharpe); his grandchildren Brett (Meredith), Lindsay, Tom (Allison), Molly (Garrett), Josh, and Brianna; his brother Robert (Lisa); and his dog Ginger. His funeral service will be at Holy Cross Episcopal Church in Valle Crucis, Saturday, June 17, at 11:00 am. Memorials may go to Holy Cross or the Hunger Coalition (https://www.hungerandhealthcoalition.com).

Semper Fi, Dad.

stuffed bears in a bar

The summer of my British Isles trip, I took a train as far north as I could, and then took a boat to the Orkney Islands. I arrived on the summer solstice, which meant there was only about two hours of darkness each night. There were midnight golf tournaments and concerts and day trips to Skara Brae. I settled in at Mrs. Brown's Youth Hostel and prepared to take advantage of all of them.

I arrived late at night, too late to meet any of my fellow hostelers. When morning came, I made my way down to the communal kitchen and prepared to cook my breakfast. Two burly and bitter men from Glasgow were there at the stove frying eggs, bread, and tomatoes. They were on a work program where they paid 25 pounds and were sent to some out-of-the way part of Great Britain to work on building bridges or foot paths. They weren't paid but their expenses were covered and they felt it was better than sitting at home on the dole. One explained that they were red brick university grads, which apparently prepared them to do not much of anything.

While we were talking, another of their group came in the kitchen and sat down at the table. He began arranging various stuffed animals and a blow-up penguin in the surrounding chairs. The Glasgow guys got very still and watched me out of the corner of their eyes. The young man introduced himself to me as Ian and introduced the animals as well. I'm southern and I know how to be polite even under the most unusual of circumstances, but I have to say, my skills were tested as I passed the marmalade as each bear requested it in turn, translated by Ian. My rearing prevailed though and I could see the Glasgow guys relaxing, only to stiffen anew each time a new guest walked in.

Ian explained he had also gone to a red brick university, graduating with a degree in biochemistry. There were no jobs though, so he and his bears and the blow-up penguin traveled England and Scotland working on different manual labor jobs. "They like seeing a bit of the country," he explained. I asked how many traveled with him, and he thought it was about twenty this trip. "I try to take different ones each time. I don't need clothes; I just fill my rucksack with them."

After he left the kitchen, one of the Glaswegians lingered for a moment. "Thanks for not laughing at Ian," he said. "He's okay. Those damn bears though . . . "

While we went our separate ways during the days, we came back together during the long light evenings, when we compared lives and played cards. The other guests came to accept the stuffed animals as well, and the bears in particular were often dealt a hand too. One evening the suggestion was made to go to the pub; we got our things and prepared to leave. But Ian was dithering. Which animals should go? Even the Glasgow boys were shuffling their feet in frustration as the time ticked away. Finally I asked which animals were old enough to drink. Ian brightened. Only four of them were and he could carry them easily.

The whole hostel, all eight of us and the four stuffed animals, settled in at a booth and ordered pints all around. We were a varied lot: two Americans, one from Korea, one from Germany, one from France, and three from Glasgow. The Korean and the German spoke no English; the Glaswegians and the Americans doubted what the other spoke counted as English. The French kid spoke it badly. Conversation was difficult, but as the night went on and more pints were ordered, our attention turned to Ian's animals and what they said in various languages. We roared and ribbeted and meowed and barked in our respective tongues until we were howling with laughter. We staggered back to the hostel about 2:00 am, just as the sun was setting.

I was leaving the next day and I had become very fond of Ian and his animals. I asked if I could take a picture of him. "May my animals be in it?" he asked. "I'll only get my very favorites." He posed for me and when I was through snapping the shot, he asked he could give me a bear. "He's not one of my best, but I'd like you to have him." I was touched and accepted him, the white one on the far left. He traveled the rest of my trip in my backpack and sat on a bookshelf for several years after that until my dog got him and chewed his eyes off. I grieved his demise.

I didn't know much about autism then and even less about Aspergers. It was several years later before I realized that Ian was most likely my first meaningful experience with someone on the spectrum. That was a gift; when autism entered my life in a bigger way, the learning curve was shorter because I already understood that those on the spectrum could go to college and be independent and be social. I wonder sometimes what happened to him; he'd be middle-aged now and his animals not much younger. Perhaps he has new ones. Perhaps he tired of them, although that makes me a little sad to think about. Wherever he is, I hope he has meaningful work, protectors surrounding him, and friends that accept him, his stuffed animals, and should he still be around, the blow-up penguin.

Homemaking

When I first bought my little condo, I had a five month old baby and big plans. Friends helped me paint before I moved in. I was so happy to have a place of my own, and I painted other rooms, took down wallpaper, and furnished it almost entirely from thrift stores. Baby number two came along, but I still had an interest in keeping up with things. I loved entertaining and one of my favorite events of the year was our annual St. Clare's celebration in honor of Claire's name saint.

As Elizabeth's mental illness became more obvious and more acute, there was less time and energy to devote to homemaking. Still, friends helped me paint and lay new flooring. One summer, I sent the girls to my parents, and an amazing number of friends participated in doing a room makeover for them. Someone sewed pillows, someone else made a valance, people painted walls and ceilings, and several helped with new flooring. There was new art and new bunkbeds, with new comforters and sheets. When I'd put Claire to bed at night, she'd look around and ask me to remind her who did what. It was community at its best, and their room was a happy and safe place, at least for a bit.

But a home doesn't remain happy and safe when a family member has mental illness, especially one that causes such violence. It's one of the most isolating things about mental illness. The toll it takes on family members is mirrored by the toll it takes on the house, and I stopped inviting people over out of embarrassment and shame. Elizabeth threw furniture and ripped doors out of their frames. Anything could become a weapon and often was. During her rages she pulled books off the shelves, emptied boxes of papers, threw plants, and pushed over bookshelves. I gave up having houseplants, always a source of enjoyment for me. When the water heater started leaking, I had neither time nor money to deal with it and so I ignored it. A rug covered the buckling and peeling laminate. The broken house seemed to be a fitting metaphor for our broken family.

It's been a good year. Elizabeth has spent the last sixteen months stable and productive. It's been a long time since we've had an entire year with no hospitalizations and no police calls. She lives in an alternative family living home, with a kind couple and two other developmentally disabled children, but she comes home almost every weekend. Elizabeth does well in school, so well that school staff look puzzled when I talk about her past difficulties. She turned 18 this year and I've applied for guardianship so I can manage her finances, talk to her doctors, and help keep this vulnerable young woman safe. We go before the clerk of court next week.

Claire is doing well. She is getting married in March and her fiancé meets with my unqualified approval. She continues to teach at JRA. I enjoy the many facets that our relationship holds, and I love that she lives just down the street.

This has been a good year for me too, one in which I've been able to address and correct many of my own health issues. I've resumed walking and light weight-lifting. I've improved my diet and cut out the sugar. I feel the best I've felt in years.

I'm not sure it's a politically correct thing to say, but I like the empty nest. As much as I love my girls, I love that they have their own lives that make them happy. I love that my house is once again my own. This year I decided to make my house a more accurate metaphor for my calmer life. I started by hiring a handyman to rip out and replace the damaged flooring in the hall. He and his sons began working as I read in the kitchen. I couldn't understand the words, but I began to sense that there was a problem. Finally the one who spoke the best English came apologetically to explain. The problem wasn't just with the flooring. It was with the supporting beams. In the words of a friend, it was house cancer.

He covered it up with plywood and left, refusing to charge me for anything but the wood. I talked to the contractor who does our work at school and he fit me into his schedule, replacing the rotted beams. He charged me far less than the market rate, but it still was expensive and there was nothing left for the flooring. But I no longer worry about falling through the hall floor, and he repaired the guest bathroom plumbing while he was there.

2017's big project will be a new heat pump. The floor will need to wait a bit longer. In the meantime I'm working on smaller projects. The school contractor has made me a great offer to tile the guest bathroom floor. I have items to repair: a lamp, a drawer, the washer, some furniture. I'm going to paint all the rooms. And I've attacked the clutter with a vengeance. So far this week alone I've taken three loads to the thrift store and gone through a whole box of trash bags. There is NOTHING under my bed, except a cat exploring this unfamiliar territory. And I'm slowly bringing the houseplants back.

It's a source of joy, this reclaiming of my life and my house, all the better because it's so unexpected. I thought my life would always reflect the chaos of mental illness, and the peace of healthy children and a calm home is such a gift. I don't mind that the house reclaiming is a slow process; I enjoy the puttering and planning. I hope 2017 will be the year I allow people to visit my home, at least the ones who don't mind a plywood floor. It feels safe and happy here once again.

Triduum

Maundy Thursday: The first service of the Triduum begins. As always, we begin in the remembered light of Palm Sunday, proceed to washing feet, continue in darkness as the altar is stripped, and end in silence. As a three year old, Claire dissolved into tears as the service ended: "Why is our church so sad!?" It's a service that invites introspection tinged by grief and it does again tonight.

Tonight I sit by myself, my children absent, which makes it a little more melancholy. Many of those I raised babies with are similarly alone or with spouses only. My friend Leslie, also without her kids tonight, washes my feet and I hers; she hauls me up from where I kneel because it's harder now I'm older. I feel no shame about this in front of her, as she's seen me at my worst and this is hardly it. We have logged many years together; she was one of the first people who greeted me when I visited Holy Family for the first time in 1989. She was the first one I showed my positive pregnancy test to. She called me when I was in labor, asking, "Have you not had that baby YET?!" I was a witness when she was married in front of the justice of the peace. I went to her mother's funeral. She's hosted birthday parties for me and is Claire's godmother. I have no doubt there will come a time when we compare adult diaper brands. This friendship is repeated many times, mine and others, as I look around the nave.

Tonight, as the altar is stripped, we sing the Taizé hymn "Stay with me," a meditation on Jesus's plea for the disciples to keep him company during that dark night. They failed miserably. I must say that we do better than they did. I look around the room and realize how many people there stayed with me through the years of Elizabeth's mental illness, how many of us stayed with Ed's family as he died and after, how many divorces, deaths, remarriages, kids' drug problems, spouses' and kids' illnesses, job losses, and moments of despair are represented in that room. Our friends and former parishioners Laura and Thomas and their kids came from Miami to be with us for Holy Week, still reeling from Thomas's recent cancer diagnosis, all of us knowing this is where they need to be. Staying is the ultimate act of love when things are hard.

As the service ended, the young woman in front of me fainted. It was hot and she hadn't eaten much. The nearest medical professional came and attended. I stayed because she is my friend's daughter and because I have known and loved her from birth. As I looked around the nave, I realized most people had stayed to make sure she was okay, even those who did not know her. That's what we do.

Good Friday: I was working so I could not go to the noonday service, but that evening, Lisa and Jim host a party for Laura and Thomas. Yes, it's Good Friday and there is some concern about the impropriety of a party on that solemn day. I am surprised at my lack of consternation as I tend towards the pietistical in my celebration of liturgical seasons. Part of my rigidity comes from working with the children at church for so many years; when teaching young ones, all you have is symbol and so we DID NOT sing Christmas carols during Advent and we DID NOT have Easter egg hunts during Lent and Good Friday IS a solemn and fasting day. But in examining this feeling, I have a clear vision of Jesus turning the water into wine (and scotch and Fullsteam beer, because Jesus doesn't truck with the bad stuff) and commanding us to love this family with every ounce of our being. And so we do and it turns out to be my most theologically meaningful Good Friday ever.

Such a party! Small children running through groups of adults, screeching in excitement, whacking each other with badminton rackets, trying to help themselves to the keg, playing with dry ice and glow sticks, muddy, wet messes, giddy with the joy of being together. There were so many years it was my children at that house doing those same things, but now I get to look on indulgently, although I do redirect the four year old from the keg to the lemonade. Fish tacos and vats of guacamole, homemade salsa, ice cream sundaes with the Rays' special caramel sauce. At the end of the night we pen messages of love and hope for Thomas and send them into the air on mini-hot air balloons. We gather for a picture that he can take back to Miami with him, a sacramental reminder that we will stay with you.

As the evening progresses, Thomas and his friend pull out instruments and the singing begins. At first it's just them, but others join them and, after a glass of scotch, I do as well. We sing as if Thomas's life depends on it, and maybe it does. I found myself wondering how cancer could stand a chance in the face of such music and such love. And the truth is, it doesn't. We all die, and sometimes we die earlier or more tragically than we hoped for. But on this night, this Good Friday, we stand here flinging joy and love like weapons at death, knowing we'll ultimately win. Thomas is His and ours, and death cannot take him from us, even though he may die sooner than we'd like.

Easter Vigil: Tonight I have both of my girls and because none of her little kids are there, Elizabeth actually sits with me. Five years ago I sat in this same pew at this same service and cried much of the night; she sat in a hospital psych unit and there was no hope. None. It got to where there was just no point in it. But life is funny and surprising even in its predicability; spring does come. It finally stops raining. People are healed. There is resurrection, not just in the empty tomb sense, but in things made new and transformation and grace that pushes its way in when it's least expected. Elizabeth and Claire decide to get dressed for church together tonight, and Claire helps Elizabeth apply makeup. They text me pictures to see if I approve. That would be a small thing for most families but that few moments of sibling time together along with the fact that we are spending five days as a family without calling the police is a miracle. Resurrection, y'all!

Tonight we begin in the dark with candles and the readings of salvation history, singing a song paired with the reading after each. After the first, particularly lovely song, a small child shouts, "Yay!" We chuckle in approval, feeling the joy trickling back in, there in the dark, not even able to wait for the Easter shout. We baptize the small shouter; we confirm several others. We shake our keys and hug one another. It's so familiar and as always, so new.

From light to dark and back out to light again because that's the way life is. These three days offer me both solace and strength, allow myself fortification for whatever lies ahead, knowing whatever comes, these people will stay with me, believing in resurrection along with me.

Presence, joy, resurrection. The Lord is risen indeed. Alleluia! Alleluia!

gasping for light

It's been a pretty good year for the McDonough family. Elizabeth has enjoyed a level of success that she has not known since she was a toddler. Claire has recovered from a scary concussion and continues to be an outstanding teacher. I'm healthy and content. My family of origin thrives and likes each other. My job is one where my passion, joy, and need intersect, and we do good work.

Despite that, I don't rejoice. The world seems dark and scary, and I am not alone in feeling this. It's no coincidence that at this time of year we yearn for the solstice, which ushers in lengthening days. We rejoice in the coinciding of the full moon and Christmas, two great lights breaking into the darkness. We decorate our homes with twinkling lights and candles. The people who walk in darkness have always looked for a great light.

I can't not watch the news because I feel it's important to know what is happening in the world, but so much seems focused on the dark side. People shooting each other. Political snipping and fighting. Terrorists, both domestic and abroad, seem to rule. War. Racism. Hatred. None of this is new, but what does seem particularly strong is the level of hatred among some Americans for those different from us.

This has crystalized in the presidential candidacy of Donald Trump, who spews hatred, racism, and sexism under the guise of making America "great" again, like it's a contest we have to win, no matter the cost. He started out as a joke, a buffoon, a gift to Democrats. But the joke isn't funny anymore. It's not The Donald who's so scary, but the fact that there are so many people who plan to vote for  him. A Republican-leaning friend and I were talking about him at church the other day. "Who supports him?" he asked in disgust. "I don't know anyone that does. Who ARE these people?" Polls show that those who were fading into obscurity—white supremacists and angry white men in particular—feel revitalized and hopeful over a Trump presidency.

I can't not watch. Pretending this level of evil doesn't exist just allows it to continue. This isn't about politics; this is about human decency and compassion. I feel I must name it as evil, fight it, and even mock it, but it's exhausting. Residing in darkness turns us into something that hates the light, a thing with a shriveled soul, like Gollum. Plants that grow without light turn pasty white, and fish trapped in caves for eons evolve into blindness. This darkness is not healthy and it certainly doesn't engender compassion for those who need what we have too much of. Hate has been focused with a vengeance toward those who are refugees from unspeakable violence, who brave horrors we can only imagine in our nightmares in order to get to a place where many revile them.

I find myself feeling like a fish out of water, writhing and flopping and gasping, not for air, but for light.

This Advent and Christmas, just to survive, I determined to spend as much time as I could looking for light and regaining hope. It's there. It's found in unexpected places, and its sometimes gentle and sometimes brash glow illuminates and warms us if we'll let it. I am filled with admiration and hope by Brandon Stanton, who surely deserves the Nobel Peace Prize for his work; he began by photographing New Yorkers and telling their stories on his site, Humans of New York. He branched out into telling the stories of some of the Syrian refugees coming to the United States. In the process, we see them as more human and more like us, and they have been welcomed warmly with financial help as well as empathy and compassion.

The #Iwillprotectyou movement came about when veteran Kerri Peek responded to an American Muslim child's terror that she would be deported after hearing Trump's hateful rhetoric. Veterans and those in the armed forces stepped up to make it clear that Muslims are not the enemy and had nothing to fear from them. Light shone across the country, transmitted by Twitter and Facebook, and a child can once again sleep at night.

The Compassion Collective raised $1 million in three days, with no gift greater than $25. "Light won!" they posted. This money will go to strollers and slings for refugees walking long distances with babies. It provides floodlights to find drowning refugees trying to make it to shore, and blankets and heaters to help them make it through the winter in refugee camps. Glennon Doyle Melton, who describes herself as a recovering everything, has joined her nonprofit Together Rising with other writers to start a Love Revolution. "How do you find your purpose?" she asks. "What breaks your heart? There you go. There's your purpose."

Glimpses of hope: Muslim women protected Christian women on a bus in Kenya from terrorists. Pope Francis. Bloom County. Musicians. Augustine Literacy Project tutors, over 1000 of them now trained, teach low-income children to read. Foster parents. Artists. Teachers. Healers. Dr. Jim Withers roams the streets of Pittsburgh, bringing healthcare to the city's homeless population. Tomás Alvarez, a California social worker, reaches out to traumatized teens of color and provides hip-hop therapy, through his nonprofit Beats Rhymes and Life. Confederate flags came down. Same-sex marriage became legal. The US government is retiring all research chimps. Julie and Steve Bailey turned away from unspeakable evil when their mentally ill son was murdered, turning their broken hearts to the work of founding Josh's Hope, which provides light and job training to mentally ill young adults. It's there. What breaks your heart? That broken place is where the light can enter.

Let's join, we broken-hearted people, to usher in the light this time of darkness. Please use the comments to tell us of other groups and people who are light-bearers. Let's name THEM instead of those who stand on the side of hate and darkness.

The light shines in the darkness and the darkness did not overcome it.

Grateful

This Thanksgiving was the first in three years that the police weren't involved. This is a big deal for us. Elizabeth was home for two nights. I mostly enjoyed it, but I was still very tense and a little relieved when she went back tonight. I've gotten pretty good at the police thing, but normal is something I'm still learning.

Elizabeth has spent most of the last two years in the hospital, either UNC, Strategic Behavioral Health, or Central Regional. There was a brief stint when she was in an alternate family living home, but she wasn't ready to go and the foster parents were ill-prepared for her needs; unfortunately, funding issues made it imperative that she be discharged, even if she failed. Which she did, spectacularly. So back she went for another eight months.

I have liked most of her docs at Central Regional. The one during the last stay was a prize, as was the social worker and her psychologist. There is a drug of last resort and the doc felt it was time to try it. It's a high-risk, high-gain drug, dangerous enough that they had to convene a hospital board to approve it, and she has to have weekly blood draws. It's not ideal. But it sure has been a game changer.

She has been out four months, again in an alternate family living home, and there has been no act of aggression. Not one. She follows directions. She is making A's and B's in the occupational program at Wake County's Sanderson High. We are having trouble keeping her IEP accommodations because they have seen no misbehavior. They don't understand why I'm so adamant.

And she's not drugged out, either. The comment I get most about her is, "She's back." Or "There's someone behind the eyes again." Is she perfect? Not at all. But the problems are so different. They are more normal teen things, and we have to remember not to make everything pathological. When I take her back, she often goes to her room and cries. This freaked out her foster parents and me, until we remembered that homesick people do cry sometimes. In the past, she threw things or hit or pulled hair. We are readjusting our idea of normal Elizabeth behavior.

A lot of credit goes to the foster parents. They have three kids in their home, two of whom are nonverbal. Elizabeth loves helping with them. And she loves the fact that there are often four generations in the home, including what may be the world's cutest one-year-old. This is their full-time job. They don't yell. They are problem-solvers. And they tell her daily they love her.

While I'm being grateful, I have to say I'm thankful for where Claire is as well. She lives across the street from me with the boyfriend, whom I'm pretty crazy about, but don't tell him. We have a deal that we call before we drop by, and we've done well living so close. They hosted Thanksgiving dinner this year. It was a veritable feast, with both sets of parents, one grandparent, and all the siblings, good china, place cards, and silver.

Claire teaches for me as well. She swore she never wanted to be a teacher, that she wasn't a teacher. She was wrong. Autism is her thing and she is phenomenal. She is still recovering from a concussion a student gave her earlier in the year, but does well most days. I love working with her.

So there we were Thanksgiving, acting like a normal family. It's going to take some practice to get used to it, but I'm willing to put in the work.

So grateful.

milestones

Wright School graduation, 2009

One of my favorite things about Facebook is seeing pictures of your kids' milestones: first tooth lost, first day of school, birthdays, proms, driver's license, weddings. These are all touch points highlighting our commonality, our shared culture and community. We smile at others' pictures today, knowing we'll post ours tomorrow.

Except when we don't.

It's that time of year again, fancy hair and dresses, corsages, tuxedos, yesterday's gawky kid all dressed up for the prom. And mine is in the hospital. She's always in the hospital. As much as she would like to go to the prom, she can't. It's more than logistics; she doesn't have the social skills or the ability to keep herself safe in a complex social situation, not to mention a date.

For many years, she kept pace with the milestones. First steps. First tooth lost. Learned to ride a bike. Check, check, and check. Dance recitals. Swimming lessons. Birthday parties. Sometimes she excelled and reached them before her friends. And then there were the ones that her friends didn't achieve: first hospitalization, first police call, first residential placement.

This hit me initially when her friends were being confirmed at church. I'm sure someone would have worked with her, but she couldn't truly participate in the class and it would by no means be an adult profession of faith. Driver's ed? That's a scary thought. Cell phone? There are so many bad decisions to be made with a phone, and she's made most of them. It's why we don't have a landline at our house and why I still sleep with my cell. Dates? She is presently unable to safely have that kind of relationship because she is such a target for predators. High school graduation? She's not been in school since November.

When I start getting morose about this, I try to remember that Claire didn't have many of them either.  There was no high school graduation because she was homeschooled and went to college a year early. There was no prom for the same reason. While she took driver's ed, she had no interest in getting her license until the summer of her 19th year. But hers were choices, and there are many other milestones she has made.

For Elizabeth too, there ARE milestones, they're just different. She's gone four days without biting or attacking a peer or staff. We put together a 300 piece puzzle in an hour, beating our record of 200 pieces. Her blood sugar has been in the normal range for the last three months. I've kept her alive and out of jail for another year.

Don't stop posting your pictures. I love seeing them. I'm trying to be more intentional about celebrating what there is to celebrate and accepting our life as it is. As hard as it is on me, it's so much harder on her. Part of my job as her mother is holding up her accomplishments as the amazing things they are.

We had a great visit today, all three of us. She noticed and complimented Claire's new hair color, notable because it means she's looking outward. We finished another puzzle. We laughed a lot. Four days without hurting anyone, you guys! I have no pictures to post—they won't let me take my phone in—but they still happened.

Whoo-hoo, I say. And I say it with joy and without a trace of irony. Milestones.

the sound of hearts breaking

Last night I trekked over to Garner to visit Elizabeth in her hospital, the one she's been in since December 3, the one I was sure would kick her out at the end of the month. They didn't and I've become a grudging supporter of the place. That's a tepid endorsement, but hospitals for the mentally ill don't come in best and great; not-too-bad and okay and not-as-bad-as-some are the highest compliments I give.

I was shown to the communal visiting room and waited as other children came, but not Elizabeth. After a few minutes, the visitor supervisor asked me to come with her. As we walked down the hall, I heard animal-like screaming in the distance. "Is that Elizabeth?" I asked. She nodded as she showed me in the small room.

Soon Mr. J came to meet with me to explain what was happening. He explained that Elizabeth had a new roommate, and this child's father had a terminal illness. Elizabeth started taunting the child, saying she hoped her father died. Not surprisingly, a fight broke out and she had to be restrained. I can see it so clearly: I suspect a favorite staff paid attention to this new child—even a friendly word would have sufficed—and Elizabeth tore into her.

As Mr. J started telling me this, I could see him struggling for control. He got out the part about the terminal illness and gulped. He stopped and tried again, but couldn't. He broke down sobbing. "I'm sorry," he said. "This is so unprofessional. I'm sorry." He took a deep breath and started again. "But that other child . . . I know it's Elizabeth's illness talking . . . I'm sorry I'm being so unprofessional." He looked down at the desk and took deep, shaking breaths as he futilely tried to regain composure. I finally reached out to take his hand and we sat, hands clasped, without talking. I thanked him for being more human than professional and told him not to put himself through trying to tell me about this.

I feel so conflicted at times like this. Yes, it's her illness speaking. There are giant holes inside her soul that need filling so badly that she will hurt in a vain attempt to fill them. She has no impulse control that could help keep inside the mean thoughts we all have at times. She thinks it, she says it. She has an uncanny sense of every person's weak points and thin places and goes unerringly for those when she wants to hurt.

I also feel judged, even when I'm not being judged. Sometimes my feelings are accurate; the director of a school she once attended indignantly told me about something mean Elizabeth had done. "I find that the apple generally doesn't fall far from the tree," she said accusingly. Wait, I thought. Surely she's not saying that I taught her that? My other kid doesn't do that! Last night I wanted to stand and shout, "You DO know she wasn't reared like that, don't you?" even though I felt no judgment from anyone but me. My heart breaks for the bullied child and I feel fury towards Elizabeth, anger it's not productive for her to see. And then my heart breaks for her as well.

The mentally ill are most often not cute or appealing. In spite of that, there are good folks who take them on and care for mine when I can't. I have such gratitude for those who work with the mean ones, the smelly ones, those that wound and spit and bite, the ones only a mother can love. When we have a particularly unpleasant child at school, I tell my staff, "Remember his mama loves him. Let's start with that." Mr. J's tears give me more confidence in the place she is in. It's what I hope for in any placement—that there are staff with the capacity to care, ones whose humanity is more important than professionalism. It's the only way I can leave her there.

God bless the ones who work even while their hearts are breaking.


photo by Lindsay Williams

Holy Innocents

A couple of nights ago I dreamed I was entrusted with a beautiful two year old African American child to care for and love . . . and I lost her. I searched and searched, all the while berating myself for being so careless. You don't have to be Freud to figure THAT one out.

It's been a weird Christmas. We spent three and a half months trying to fit Elizabeth into treatment options that didn't quite fit. She did okay for a while but struggled with the living with another family and being sort of part of the family—she was in their Christmas card picture—but not quite. They asked for time off over Thanksgiving and she went to a respite home for the weekend. She crawled out the window and ran away, seeking shelter in a Japanese restaurant, whose staff called the police. Things deteriorated from there and soon she was back in the emergency room, then the hospital, a new one this time. 

Christmas day, Claire and I went over to visit. Five families shared a small room, observed by a nursing assistant in a Santa hat. We opened presents, passed around contraband food, and debated what the kids could keep and what would have to go home. Hang on, we kept telling her. Stay in control. That's your way out. But yesterday she got into a fight with another kid, whose parents pressed charges.

I drove over to talk to the officer. He was reasonable and immediately got it. "Why's she here?" he asked me. "For aggression," I responded. "Did the hospital know that?" he asked, puzzled. They did. "So why were they not monitoring her more closely?" I don't know. This is the third time charges have been brought against her, all in a hospital setting, all for exhibiting symptoms of her mental illness. He refused to arrest her, an act of mercy, a moment of grace, there within an insane system.

This hospital will most likely kick her out this week. They are a for-profit hospital and there is no money to be made off of Elizabeth. Realistically, I've given up hope for treatment now. My goal is to keep her alive and out of jail until . . . I don't know until what. Perhaps until I can create a place for her to be that can help her. I'm not sure people really talk about treatment for severely mentally ill people outside of hospitals right now. There are actually fewer treatment options than there were a few years ago. Since Sandy Hook, North Carolina has cut funds for mental health two years in a row. We've also refused Medicaid expansion, which could provide mental health access to thousands more. Once again legislators tried to close Wright School, the only ray of hope for NC children with mental illness. It's a bad time to be a child with mental illness in North Carolina. 

It's actually a tough time to be a child anywhere. This month Taliban militants in Pakistan massacred 132 children. In April of this year, 273 school girls were kidnapped from the Chibok Government Secondary School by Boko Haram Terrorists in Nigeria. #Bringbackourgirls we cried. But they didn't and we lost interest. Twelve year old Tamir Rice was shot and killed holding a toy gun. #Blacklivesmatter we cried. Others protested that #alllivesmatter, totally missing the point that, as George Orwell pointed out, that while all are equal, some are more equal than others. Far too many children are killed yearly by guns, often in schools that should be places of learning and safety, while second amendment advocates piously protest about any attempt to keep children safe from guns. Children languish in foster homes, waiting for forever homes, so many that the state of North Carolina maintains a catalog for you to browse.

When JRA moved into a new building in June, we were at 34 children. We accepted an upper limit of 60 kids to appease our neighbors, the ones who thought the sound of children playing would lower their property value. Sixty kids seemed like an unattainable goal. 2014 ends with 52 children at JRA, with five more entering in January. The kids that come to us in January are usually in bad shape with desperate parents. They've been battered by their school systems, systems filled with mostly good people who have seen their resources cut. They're still expected to work miracles with difficult kids and they aren't allowed to say they can't even when they know they can't. Good teachers are leaving in droves and special education classes often have teachers with little understanding of the kids they serve. And so parents sit in my office and cry as they watch their once cheerful kid deteriorate and beg to stay home from kindergarten.

There will be those who want to know where my outrage is for those babies who are aborted each year. I hate abortion; I want it to stop. But I do not understand the passion for the unborn when those same people care little for the born. I don't know how to stop abortion, especially when we make it so hard for poor parents and parents of those with special needs to care for their children. My motto is that of Mother Jones: Pray for the dead and fight like hell for the living. It's all I know how to do.

One song on my playlist year round is Trans-Siberian Orchestra's Carol of the Bells. I sang this carol in high school chorus, and I know how it should be sung, lightly and joyfully: "Gaily they ring, while people sing, songs of good cheer, Christmas is here!" But this rendition is filled with a rage that is jarring and harsh. I understand this rage. Merry Christmas dammit.

Within the Christian story of the birth of Jesus is a part we don't include in the Christmas pageants. Matthew tells the story of Herod killing all baby boys in the vicinity of Bethlehem, hoping to exterminate the newborn king. While this is not mentioned in any other historical document, some speculate that the death of several dozen babies was not a serious enough thing to even be mentioned. Murdered children stricken from history by their insignificance. Kind of like the mentally ill.

Today is the feast day of the murdered babies of Bethlehem. Perhaps we could honor their memories by making the world a little kinder and easier for the children here now. Perhaps we can think a bit less of power and comfort and hold not just our own children close, but also the children who have it the hardest. Perhaps you could be a foster parent or a mentor to a child without a stable home situation. Perhaps you could give money to my school or the Augustine Project, which teaches low income children to read. You could write a letter to your legislator, asking them to learn about Wright School and keep it in next year's budget. While you are at it, remind them that kids matter more than money. Spread the word and send money to Josh's Hope, which helps mentally ill young people transition to adulthood. Get involved with Moms Rising or Moms Demand Action for Gun Sense in America. There are so many organizations, created and run by people who know it's up to us.

I am, by nature, an optimistic person, even at my angriest. We are the hands that can make things happen. Let's get with it.

Elizabeth's Law

It's hard to believe it finally happened today. So much has gone wrong that her team has started calling it Elizabeth's law. She entered Central Regional Hospital Labor Day weekend, 2013, for what I assumed was a three to four week stay. She was finally discharged today, July 28, 2014.

The problem, I came to see, is that there wasn't an Elizabeth shaped hole, anywhere. She has multiple diagnoses, but what matters in the end is that she has a developmental disability and mental illness. You really aren't allowed to have both, but of course, we've never followed the rules in this family. When it came time to discharge her, way back in October, it became apparent there was no place for her to go to school. CHCCS doesn't have a program for the mentally ill and we were told we had to put a homebound provision in her IEP in case there were any problems in school. We all knew there would be problems at school. Homebound consists of two hours a week with a teacher. The rest of the time she's mine. Which means I couldn't work and besides, that's hardly an education. Try sending YOUR kid to school two hours a week and see how fast you get reported for truancy.

So we started looking around. We'd sit in a meeting while her Developmental Disability care coordinator, Mr. W, and her mental illness care coordinator, Ms. S, and her CRH social worker, Ms. P, talked options. I was there but I wasn't much help because I cried a lot. Mr. W would throw out what sounded like a good plan, but Ms. S had to shake her head no. "Her IQ's too low for that program." We'd sit in silence while they scrolled down on their laptops. "How about this one?" Ms. S would ask. Mr. W would shake HIS head. "They don't take kids with mental illness." Ms. P ventured a suggestion. They both shook their heads. "Cardinal Innovations won't contract with that place." After one particularly frustrating meeting, I said, "So what I'm hearing is she can't come home, she can't stay here, and she can't go anywhere else. Is that correct?" After a short silence, all three agreed: "That seems to be the case."

The good thing about Central Regional is that it's the one place in the state that can't kick her out. It's not meant for eleven month stays, but they'll do it if they have to. Our two psychiatrists were awesome, but what really mattered were her psychologist and her social worker. Dr. S graphed data, looking for patterns, causations, results. He also supervised her therapist intern who made great progress with Elizabeth. Her social worker spent countless hours talking to me, looking for untapped resources, and doing cute craft activities with Elizabeth. None of them ever treated me like I was stupid or a pain. No one ever talked down to me. It's an unusual feeling.

And then in January, we found an option that worked for everyone. An agency called Caring Hands had alternative family living homes, a place she can stay until she is 21. And the home they identified was the one thing we hadn't tried: an extroverted African-American couple with a one year old grandchild living with them. Elizabeth is at her best around small children. We met them and we all fell in love with them. The only hold-up was that they were not yet licensed, but that should only take a month or so, everyone assumed.

Elizabeth's law. Four months later, they were still working on repairs to their very nice house, sneaky problems within the septic tank and well. Although it was costing the state $1200 a day for Elizabeth's hospital care, no one could front the family the money it took to do the repairs. They finally raised it, only to spend it on someone who did substandard work, causing them to once again fail the inspection.

The corollary to Elizabeth's law is that when things go wrong, someone amazing will step forward. In this case it was the contractor working on my school, who went to the home and supervised the work so that it was done correctly, without being paid for it. And this time it was. The fire and sanitation inspection was scheduled for a week out, then another permit, and then to the state for approval.

All that would have been fine, except if she were not out of the hospital by July 30, she lost the funding that made this possible, no exceptions. We all knew that date was there, but it seemed so far away. And then it wasn't any longer. No one was willing to leave it to the 30th, because Elizabeth's law meant that there would be an earthquake or something like that that would prevent her from leaving. So her discharge date was set for July 28.

I should have been very stressed, but I wasn't. My care coordinators and the Caring Hands people were stressed enough for all of us. Adding to the stress was the fact that the NC legislature has access to her medical files and get regular reports on what was happening with her from no less than the CEO of Cardinal Innovations (like the Blue Cross of Medicaid). No one wanted to be the one that messed this up, plus, they all had come to truly care about her. When it because apparent that the first home wasn't going to be licensed in time, Caring Hands identified a backup plan, with an interim foster home until the other was licensed.

Transitions are not Elizabeth's strong suit, and she couldn't see past the time she was with the second home. She wanted to be with the first one and totally shut down when we met the C's, the interim family. They are an older African-American couple with grandchildren and another child already in their home. When we met, Elizabeth wouldn't even look at them. Desperately trying to make conversation, I asked Mr. C if they were Duke people or Carolina people. He laughed and admitted to liking UNC. Elizabeth mumbled, "Holden," a family friend and familiar UNC name. Mr. C looked at her for a moment and then began to talk about what a fine person Holden Thorp was, how Holden had played piano at his brother's retirement party the last year. Elizabeth's head slowly raised, and although she still wasn't happy about the temporary placement, at least we had ascertained that our people knew each other, an important consideration for a southerner.

I had her for a pass on Saturday. We met Claire for lunch and in the middle of the meal Holden called her to tell her how much he liked this family. This meant she was willing to go, as long as we promised her she'd be with the L's soon. She was scared to go to church with them, probably because she was afraid people would think she was like their other child, who had autism and was in a wheelchair. We went thrift store shopping for baby clothes for her doll, which was allowed to go back to the hospital with her this last time. We had tearful times; she wanted to make sure I was still her mom and Claire was still her sister, and that she'd come home someday. I said yes to all three and only one was a lie.

The truth is, she can't live at home with me. Her anxiety is too high and she becomes violent when she does not feel safe. There have been too many injuries, too many police calls, too many long waits in the ER. Central Regional is the only hospital in the state that will still take her and when they don't have open beds, we're up a creek. This foster home has advanced training in all her needs. They are constantly on the go, something she craves. She can be part of a very large extended family, all the same color as she is, and that's important to her. Mr. L has 14 siblings and every single one of them graduated from college. They value the things I do and asked if they could take her to Moral Mondays. Mrs. L is a hairdresser, a real bonus. She has her own room and the house has a security system which helps her anxiety.

The school situation is up in the air. For the summer she'll go to a day treatment program. We'll figure out the school year when it's closer. It pains me to say this, but I'm glad she'll be 16 this year so she can legally quit. There is just no school for her; she cannot function socially with kids her own age. Put her around toddlers and she does just fine. I tried her at JRA; I can help everyone else's kid but I can't teach my own. The most I can hope for is a kind of karma, that the care and help I give to other kids will come back to her through someone else.

It's hard to admit that I am not a success at parenting her. This is not a plea for reassurance, but a simple statement of fact. For one thing, it takes more than one parent to rear this child; I'm thinking five might be just right. Also, she is torn with loving me so much and wanting a different kind of family. The best parenting I can offer right now is to love her unconditionally and let her go. There was a time I thought love could conquer anything, but I was wrong. She has spent three weekends at the L's and it went well. She felt safe and connected. I am still her legal guardian and I am still her mom. She'll come home sometime and we'll still see her. We are just making the family bigger.

She just called me to tell me goodnight. The C's had taken her to their church revival, so she was able to get the scariest part behind her. Mrs. C said she really got into the music, and Elizabeth said it was fun. They had ribs for dinner and their one year old grandchild was staying with them too. Bedtimes are always hard, but it she can get past that, we should be okay. Day treatment starts tomorrow, but not until 1:30.

And I'm okay. Sorta.

a really long Facebook status

When you wish you could pick up the phone and talk to someone but most of your friends have no clue what you are talking about and a few know all too well because they live it too. And then you realize you have nothing to say and no words to say it in and so you don't call anyone but go home and get out of the car into the polar vortex air, wondering why there is ice on your face and you feel so drained.

When you try to concentrate in a meeting about your child's future but she is screaming your name so loudly the whole two hours a few rooms away that you can't hold it together. And when people in the meeting don't look at you anymore because they've tried so hard and it hasn't helped and they feel inadequate and a little angry. And when everyone at the meeting realizes she is not going anywhere anytime soon because she has been in an acute state for five months now and besides there is absolutely nowhere to send her, nowhere, not here, not someplace else in North Carolina, not out of state, except this state hospital, because no place that wants to make money is going to take her. And when the Medicaid care coordinator has nothing to offer but his prayers even though he's really not allowed to say that but does anyhow because he's a nice guy.

When the doctor you loved, the one that spent hours talking to you, asking questions and thinking about options, that doctor gets transferred to another unit and you get a new doctor who is a nice guy but he talks at you not to you and never asks one question except will you give your consent to this new medication. And you're not allowed in the unit and they rotate nurses and so you've never seen her room and you don't know any of the nursing staff that work with your kid and the only thing you know is that she cries for them when she's with you on a pass from the hospital.

When you see her holding a friend's three-year-old in church, looking like a normal fifteen year old, and you have a moment of feeling like everyone else. And then she almost breaks the psych ward window and you remember other people's kids don't do this. And they don't have door jambs torn out of the wall and they can have company who don't already know their story.

When you hold your baby's hand and see initials carved into her arm, marring the smooth brown skin you've always loved. And when her hair is wild and unkempt and she can't sit still long enough for anyone to do it and there's no point in it anyhow because it will get messed up during the next restraint but you still remember the soft powdery scent of it when she burrowed into you as a baby. And when she says mean things to you and to other people that you know aren't in her but yet they are because she says them. And you find it hard to believe that this is the same kid who is a rock star to the little kids in church and who buys them presents with her own money just because she loves them so much, who has such depths of kindness and compassion inside her and you wonder where that goes during these times.

When you read the news about a teenager shot by the police because "they didn't have time for this" and you realize that you've called the police to your house dozens of times and this is how your child's story could end too and that there are people who think this would be the best solution because she is too expensive and too hard and there's nowhere for her to be, to exist, much less get better. And you hold like a talisman the picture of her swimming with dolphins that was taken two weeks before this hospitalization and know that is her just as much if not more than the girl the meeting is about. And knowing that doesn't help.

When you are so grateful to have a job you love to go to each day, and you hope you can save some other mama's baby because you sure as hell can't save your own. And when you sit holding a child together after he just hit you because, even though he's really smart, 9 take away 2 is just more than he can handle, but you keep showing him and suddenly he gets it and shouts, "It's 7! It's 7!" and you know that a thousand or maybe ten thousand more moments like that might allow him to not spend years in a state mental hospital and so you do it again and again because it's where redemption lies and you hope maybe someone else will do it for your kid.

You know, that.

the last Caroline bowl

I first met Caroline when she was a junior tutor in my high school Title I reading class. She was lovely and sweet, but not a student who stayed with me after I left the job. We reconnected several years later when I dated her stepbrother. One summer when I was headed to France to try to master the language, she called and asked if she could tag along. We both enrolled at the University of Grenoble and became fast friends. We spent that summer in our little Grenoble flat, eating avocados and flan, and fruit de mer pizza at restaurants.

She was a soul mate friend, the type you find far too seldom, the kind that can finish your sentence or hear the thought behind the words that don't match. It didn't matter that I was twelve years older. We each believed the other was wonderful and could do anything. We published a newsletter for tutors together, learning to use a computer for the first time. She supported me when I decided to have Claire, going with me to doctors' appointments. She was our first visitor in the hospital, and Claire bears her middle name. I encouraged her when she wanted to open her own restaurant. She took my side when her brother and I broke up. I approved when she spent her whole paycheck on an expensive piece of art. She could fix anything, cook anything, wear anything. She and I and our friend Liz would meet at Breadmen's over French toast and tea, talking for hours. The three of us were in a book group together, one that focused on books written by women and which always included chocolate and wine. She insisted on choosing the wine because she knew I'd drink anything. When I was overwhelmed with housework, I'd channel Caroline and somehow knew where to begin, something I still do to this day.

She married, and she and her husband moved to San Antonio so he could go to dental school. I took the girls on a road trip to visit, a plan everyone thought was crazy except her. She took us to eat real Mexican food and taught five-year-old Claire how to make cream cheese icing. When A. finished school, they moved to Asheville. I was thrilled; Asheville was close.

They hadn't been there long when I got a late-night phone call. "A. doesn't know I'm calling," she whispered. "I don't want to worry him. But something's wrong with me." She was scheduled to see a specialist that week, based on some tests that weren't quite right. "And you're worried about your poor motherless children, aren't you?" I said. "Yes!" she said. "I'm more worried about them than I am for myself."

She called me after the visit with the specialist. "His face was gray," she said. "He had trouble telling me. And A. Oh, Linda, I could hardly bear it for him." 

I started going up once or twice a month. The treatment was brutal. I arranged a mail rota with mutual friends, hoping she'd get something fun every day. One friend sent drawings from his child. Another sent yarn so she could knit. I sent favorite mysteries and postcards of Paris. We'd talked about going again as old ladies, and I was going to hold her to it. 

She vacillated between stoic realism and passionate hope. I saw my role as supporting her in whichever mood she was in. "Of course you're going to beat this," I'd say on Monday. By Wednesday we were talking about wills or funeral plans. It was on a hopeful day that I thought up the pottery hook. "Every time I visit, I'm going to buy a piece of pottery. First bowls, then plates, then mugs. You have to stick around long enough for me to feed twelve." The rules were that they didn't have to match, just be local and blue.

There is no shortage of potters in western North Carolina, and on every visit I found one on my way home and added to my collection of bowls. The girls and I began referring to them as the Caroline bowls. Two bowls, then four . . . soup and cereal and salad and mac and cheese, always in the Caroline bowls, beautiful blue, unique works of art. So much of our time together was centered around food, and it seemed right to hold her close in this way.

The next visit was in the hospital. I held her hand and listened to her shallow, pain-filled breaths, staying by her side so her mother and husband could run errands, fill prescriptions, and arrange to take her home. I watched the IV dripping into her skeletal arm, now the only way she could eat.

After I left, I stopped in Black Mountain for dinner and a bowl. I found a side-street pottery shop, and although it was pouring rain, I WAS going to buy my damn bowl. I picked up one that seemed to match the weather, and as the woman wrapped it to take home, she casually asked if it were a gift. "No," I said. She must have heard something in my voice because she stopped and looked at me with concern. The kindness was more than I could bear and I broke down sobbing. She came around the counter and hugged me, both of us crying, as I poured out my story and my pain. Thunder rolled and lightning flashed and rain beat against the window, until finally the pain was diluted and I was able to speak again. I took my package and drove home, stopping at McDonalds on the way. 

She died the day after her fortieth birthday, as I was sitting with two good friends, drinking wine and reminiscing. When I got home that night, my answering machine light was blinking. I put the girls to bed before I checked it because I knew what it would say. I listened to her sister-in-law's voice, and although I wasn't really hungry, I got the last Caroline bowl out and sat down to eat some soup.

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.