Sometimes I’m bewildered. It’s a challenge to stay in a positive head space during the summer because everyone is home. Grace is here, and she’s usually pacing the house, roaming, hovering, staring. She needs constant shepherding. She does not self-direct easily. Her body is growing, but her mind doesn’t seem to grow with her. This is the hardest part for me to observe, and she is aware. Sometimes she cries. She knows that something isn’t right. This is why summer is hard. There is too much time. Time to reflect. Time to notice. Time to wonder just what is wrong. Time to play with friends who seem to be surpassing her in every way.
I want to be the Goblin King and whisk her away to another land where time stands still. She will stay as she is. She won’t deteriorate any further. She won’t know what it is to watch more friends leave her behind. She won’t know stigma. She will keep her dreams of marriage and children in her hands like delicate soap bubbles and let them float around her on the breeze of her hope and imagination. She won’t suffer. She won’t fear imaginary creatures that only she can see. She won’t be blunted and delayed by harsh medications and loss of white matter.
She would always be her. As she is. As she was.
Sometimes it is hard to live in the moment. It is hard to see her as she is now because I remember her as she was, and they are no longer congruent. This is a hard reality for me. There is no getting around this. Grief is the passageway. I’ve written about grief before, but I suspect that grief is a lifestyle when one is caring for a child with a neurodegenerative disease. A part of me wants to turn my eyes away and say, “This can’t be. This isn’t permanent. She will bounce back. This will remit.”
It won’t. It will progress.
This is very hard to accept. I don’t like it. It is painful for me to accept this reality even though it’s in my face daily. Why? Because I fight. I fight everything. I will probably die fighting something, and this is why the DBT skills group that I’m taking with Eadaoin has been so excellent. One of the core concepts of DBT is radical acceptance. Radical acceptance is a very hard concept for me to practice because it feels too much like giving up, and I simply don’t do that. Never give up. Never surrender. This is my mantra. It is how I have survived some extreme environments in my life.
There comes a time, however, when we must accept certain realities.
You cannot change anything about how you got here. You are here. Grace is here. No matter how hard you fight, she will still have schizophrenia. You can fight it, or you can accept it.
I don’t know why writing that out undoes me, but it does. I feel completely helpless. This is one of the hardest parts of practicing mindfulness. A friend joked with me in passing that mindfulness was for pussies. On the surface, it does look like that. It certainly sounds like a benign word and a relatively kind practice. One conjures images of candles and Buddhist monks. It is anything but that. Mindfulness is ruthless. Sitting with yourself. Being present to your feelings however uncomfortable, painful, or overwhelming they are is extraordinarily difficult. Choosing to completely and wholly accept the things in your life that you cannot change requires you to engage your entire will and character. Practicing being present forsaking maladaptive daydreaming and poor coping strategies in favor of better ones can feel almost tortuous particularly when your present life feels like a nightmare at times. Mindfulness is like that sharp, bitter, little pill that I have to swallow because, honestly, there are times I’d rather be anywhere but here. It is extremely hard to care for a child with mental illness, an autistic child, and another child with a probable mood disorder. It is extremely intense, and it requires intense focus and determination not to mention an endless well of patience.
I can do this most of the time, but there are days when even the best of us requires a break.
This is why mindfulness is so important. If we are present to ourselves, we’ll know our own rhythms and recognize what we need before something awful happens like this (click link). Mindfulness promotes personal responsibility and prevents us from acting like martyrs and victims of our circumstances. That is the last thing I want to perpetuate. I may become bewildered. I may feel overwhelmed. I may feel grief. There are days that I might even want to run away to my own personal island where I am served by two cabana boys named Hector and Jorge and ride a horse named John. What I really want, however, is to create an environment in home, life, and heart that is big enough to answer this call:
“What we owe a mentally or physically disabled [person] is not ask why God permits this, but to ask ourselves what kind of community we must be so that this person can live as full a life as possible.” Howard S. Kushner, The Book of Job: When Bad Things Happened to a Good Person
And so we engage in our own process, whatever that looks like, so that we can rise to the challenge of being a source of goodness, kindness, and compassion to those around us who need it always remembering that we ourselves need it, too.