There are times in my life, almost like chapters, that are defined by a very specific word or theme. I think for now, the operative word is loss.
Those of you who know my family know that life with our girl has never been easy. In fact, we learned by the hardest that the things she lived through as an infant and toddler so completely changed the structures of her brain, that managing her behavior when she spins out of control takes the most drastic approach possible. Three years ago, under the supervision and direction of an amazing therapist, we finally faced into the need to build an isolation space, basically a padded cell, that became our daughter’s time out space when she spun out of control.
This step required us to put a lot in place. We took a course called TCM that taught us how to “transport” her to the isolation space when she is out of control, hell-bent on causing maximum damage. The techniques we learned are intended to reduce the danger of causing her injury and to protect ourselves as much as possible. Isolation is such a drastic intervention that it requires us to be in daily contact with her behavior therapist and carefully document every incident that leads to time out. Awful as it was to put in place, it gave us 4 years with our daughter, something no one believed was possible.
We are at another juncture now. Our daughter, the light of our life, is big enough and strong enough (and her parents have aged enough!) that breaking into those times when she loses control has become almost impossible. Getting her to time out is simply too dangerous for us all. We are also dealing with very normal teen age issues that are so much harder with a woman-child like LM. After a series of incidents, we had an appointment with our behavior specialist last week and have agreed that time out/isolation is no longer a viable option. The implications of this decision are enormous. It is an acknowledgment that our home is not safe for any of us, though things are under control almost all the time.
Now, the first line of response is neurochemical—and after 15 minutes with her psychiatrist (whom we like a lot) I walked out with 3 new medications to try. It’s all trial and error, this business of psychopharmacology, and as he said, “anything more than she’s taking now means we have to start worrying about side-effects”. I haven’t even been able to make myself do the Internet research on all this stuff yet—I allow myself some time at each step to do a Scarlett O’Hara. I have no regret about the medications our girl has been on because they have opened spaces in the chaos of her mind for better decision making and stronger impulse control. But the line is so thin and we know so little about all this. How can anyone bear to watch these powerful drugs start erasing the person entrusted to our care?
At the same time, her psychiatrist, and the behavior therapist, and folks who know our situation well, are very clear. It is time to start working on “new placement”. It is time to accept that we do our daughter no good if we are not able to be safe in our own home by keeping her with us. None of the alternatives are real good. None of this moves fast. But still. A couple of nights ago, I went into her room just as she was falling asleep. One of the small but significant marks of progress for this little light of ours, is that finally, after 11 years living with us, she is able to sleep without any lights on. In the dark, I leaned down to kiss her. She put out her arm and wrapped it around my neck so I stood with my cheek on hers. She whispered in her sleepiest voice that she wished I could stay and keep her company. I felt like Emily in the third act of Our Town looking in on my life, excruciatingly aware of the gift of that small slice of time. The wonder of being her mother simply doesn’t dim.
Every Sunday when I am the celebrant at the Eucharist, I start the final blessing with a reminder that we have been lent to each other for a very short time, urging the community to make speed to love and to make haste to forgive. I think all these years I have been saying that as much to my own self as to everyone else. I forget that I have had her on loan. Today what keeps bubbling inside me insists “This is too soon. We haven’t had enough time. I am not ready. I’ve already lost a lot this year.” All of that threatens to spill over and drown me. But I don’t drown. Each wave of pain carries me out to dark places but then it brings me back to the shore, to something strong and solid and here, always ready to receive me. I don’t get answers to my questions, there are no magic fixes or easy outs. But the silence is companionable and gentle and unafraid and I am able to get back up.
Paul Tillich, the theologian who first gave words to my hope and my faith when I was a young student in Virginia, is the one I go back to now. He talks about God as “the ground of our being”—this phrase has been used and abused, sometimes beyond recognition. But it gets at my certainty: all that I am, including what I am losing, is grounded in God’s love and goodness. The other Paul, the one I am always arguing with, says it even better. “For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God which is in Christ Jesus” (KJV, Romans 8:38-39). That love grounds me. It grounds my daughter. It grounds the future as it unfolds.