Grace cried this evening.
It wasn’t tears brought on by lability. One grows used to those tears. Sometimes those tears seem almost like crocodile tears. I almost feel numb to that sort of emotional display because it seems to be brought on by a shift in brain chemistry. I know that Grace’s medications need to be adjusted. It almost feels like a surreality.
This was different. This was honest.
Grace didn’t cry often as a baby, and she rarely cried as a toddler. She cried when she woke up from her naps. That’s it. Her preschool teacher once told me that she didn’t think she could ever stand to see Grace cry. She has always been that sort of girl. Happy and somewhat quirky. Even as a toddler. In her own world. And whatever her world was like, there was no crying.
So, when she cries, it affects me. I don’t like to see anyone cry. I might cry if someone cries in front of me. When Grace cries? I suffer.
She wanted to help Eadaoin babysit tonight, and Eadaoin looked at me in silent desperation–a plea for help.
“Grace, I think it’s better if Eadaoin goes alone. You had a sleepover last night, and you said that you were really tired earlier today.”
“But I love taking care of little kids, Mom!”
Eadaoin looked conflicted. “Grace, it’s just that it’s going to be late, and it’s hard for me to babysit with other people with me sometimes.”
Grace didn’t understand. I looked at Eadaoin. I looked at Grace. I decided to tell her the truth.
“Grace, I think what she’s trying to say is that she feels responsible for you, too, when she’s babysitting, and she wants to focus on taking care of the children that she’s being paid to look after.”
“Yes!” Eadaoin said with relief.
Grace looked confused for a moment, and then her expression changed. She looked at me. She looked at Eadaoin. I saw tears well up in her eyes. She understood, and in her understanding of what was being implied I felt pain bloom in my chest because I knew that something painful was blooming in Grace’s chest, too.
She turned around and silently walked up the stairs, but I could hear her crying. I couldn’t let her go upstairs alone and cry by herself. I found her on the edge of her bed, tears streaming down her face. I had no idea what to do. I just wanted to take it all away.
What’s the right thing to do? What’s reality here? She can’t babysit. Just yesterday she told me that she didn’t recognize her dad. For a moment, she forgot who he was. She needs to take constant breaks in the day. She needs supervision. And yet, she is still a 13 year-old girl who couldn’t wait to babysit when she was nine. She loves children. She still wants what every other girl wants. She still talks about being married one day. She still has dreams.
I sat quietly on her floor. I asked her what she was feeling. She said, “I feel sad. I don’t like what’s happening to me…”
I cannot adequately express how painful this is to watch. I want to understand it. I want to know why this is allowed. There are no satisfactory answers, and I know that. Right now there are people in hospices watching their loved ones die of terminal illnesses. There are people with early-onset Alzheimer’s who are slowly losing their lives, and their families must witness it. There are cancers and diseases the world over, and there are no good answers as to why innocents suffer. They just do. It is the human condition.
It is brutal. It is the great equalizer. It won’t matter who you are, where you come from, or the size of your bank account. Suffering knows no bias. Everyone will experience it.
I spent time with Gracie in her room. I tried so hard to just listen this time. I wanted to validate her rather than be Supermom and fix everything. I can’t. I can’t fix everything, but I can be her witness. I can let her know that I’m here. I have no good answers, but my presence is an answer albeit a poor one sometimes.
I went downstairs to make bread, and, as I was measuring out the gluten-free flours, a scene from “Steel Magnolias” played in my mind. Sally Fields’ character was angry. She was standing in front of her daughter’s coffin, who had died due to her body’s rejection of a kidney. She was surrounded by her friends who were all crying and trying to comfort her. She stopped and suddenly shouted out that she wanted to know why. She just wanted to know why her daughter had to die. That’s how I felt.
Why did my daughter have to have schizophrenia? Why did she have to be regressing so quickly? Why did she have to experience so much suffering? And why did she have to be aware of it? She knows! And her self-awareness is causing her so much pain. WHY?!
And then I started crying. And I really hate to cry.
But then the rest of the scene continued to play as I cried, and there in my kitchen I watched Olympia Dukakis drag Shirley MacLaine forward to be punched in the face: “Knock her lights out! Take a whack at Weezer!”
And, I laughed. Such is life. It is truly bittersweet. Mine doesn’t stop. A friend commented today that she has never understood my life. We never get a break. It’s true. We don’t, but that is our life. I don’t know if there is purpose in that or not, but I suspect that we are the ones who determine that. I can add meaning to all this should I choose to.
I am grieved to my core that my daughter is in pain, but I have the privilege of sharing her journey with her. And, I will be with her to the end be that in body or spirit, however she chooses to let me. I will do whatever I can to honor and add to her dignity so that she always knows that she is beloved and worthwhile regardless of her momentary abilities.
And so, for tonight, I stop asking why. I turn to Christian theologian Stanley Hauerwas who once said, “What we owe a mentally or physically disabled child is not to ask why God permits this, but to ask ourselves what kind of community we must be so that this child can live as full a life as possible.”
That? I can do that.