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.