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