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.