On Monday, Jack bit Hannah, his ABA therapist, on the face.
It was horrific. He has a jaw like a vice, and can clamp down on innocent, unsuspecting flesh like a lightning strike. Poor Hannah was brave and forgiving, but tears poured from her eyes. I know how she feels. Jack can hurt you so quickly and painfully that you’re crying before you can think a thought. I disinfected her face and applied triple antibiotic balm to the bite marks, before sending her home early.
I spent Monday night shaking with rage. I was so angry at Jack for abusing the people closest to him—the people who are trying to help him.
His ear is infected again, in case you were wondering. When Jack is sick, he is a monster. This winter, he has been sick every other week. I give him every possible med and consideration. But our already fragile daily existence washes away in a deluge with every illness. He breaks the house and hurts people.
When I stopped shaking in anger, I wept with fear. I was afraid that if Jack keeps up this abuse, no one will help or care for him in the future. I don’t know how I will care for him if he lashes out like this. I felt afraid of our waning options.
I lay on my bed, tears streaming, praying for peace amid my desolation. I was wracked with sorrow.
I breathed slowly and deeply, visualizing the beach at Turtle Bay on the north shore of Oahu. I remembered our first morning there, three years ago—just Jeff and me. We woke early and walked to the beach in the hours when only jet-lagged tourists are awake. This morning it was just us. The beach was vacant. We had come from years of disability-related hardship where small people screamed in our faces about everything, night and day, a life of literal poo, stench, and weariness.
And now we stepped onto this empty, magic beach.
The waves rolled in with a force greater than the vicissitudes of autism and developmental delay. They pounded the beach. Jeff stood, his feet on the wet sand beside the breaking surf, and said, “I can’t believe we are here.”
That morning when the beach belonged to just us—it’s where I go when I am the saddest. I return there in my mind, looking for the lightness of being I felt there. When Jeff and I explored the shore that early morning, I was alive and saturated with gratitude. There was an entire big world outside of the repetitive, painful life of care-giving that I lived. I got to taste it, dip my feet in it. It was a balm.
This week, though, when I envisioned myself on the beach, it haunted me. The waves rolled in relentlessly. The sound of the surf infused me with longing. Instead of feeling peace, I was wounded by my distance from the beauty of that place. I was not on that beach. I was solidly stuck here, run through with sorrow.
Some hurt is inescapable.
I walked on the beach in my mind, but Jack was still with me.
I had this thought: Get a tube in Jack’s right ear. It’s something we have considered, but were putting off until we could schedule his dental work at the same time. The sticking point has been the dental clinic at the children’s hospital, because they are a nightmare when it comes to scheduling OR time. And so the whole winter has been peppered with entire weeks of illness-related behavioral issues.
Last weekend, I saw an article in my news feed, written by a young widow, a mother of two small boys. Something pricked me as I scrolled past it, and I felt I should read it. This woman wrote about the grief and upheaval in her life after her husband’s death in an accident when they were both in their twenties.
Two things remained with me after reading her words.
- She said at times she would pray for comfort, and all her pain would leave. For about 24 hours, she would feel absolutely no pain, when before it had been consuming. With time, it would slowly creep back, but there were those periods of respite when she felt Jesus was shouldering her sorrow.
- On one occasion, she visited her husband’s grave and prayed, asking God why it had to happen. Why did he have to die? The answer she got was that her husband had completed his work on the earth. His part was done. She had to accept it. That was the answer, even if it felt incomplete.
I feel that God put this essay in my path, and underlined it with a giant heavenly highlighter so I would read it during this awful time when Jack has been suspended from school and coping with pain and biting his therapist. I am certain that God wanted to tell me that the way our family’s life is unfolding isn’t up to us. It isn’t a reflection of our failures. It isn’t a punishment. It is part of a bigger design, a greater plan.
Like the waves beating the North Shore, there is a stronger force at play behind life on earth than humans making choices and doing our best to live life, imperfectly. God knows how messed up my week has been. He is Jack’s Heavenly Father. He is mine.
I went to campus to teach my classes Tuesday morning, and I prayed, “I need thee every hour, for real. I need you completely. Please help me keep going today.” I walked into school feeling fragile. I stopped in a quiet hallway and called the ENT to schedule ear surgery. Dentistry will have to wait.
I taught my classes, and when I left the university to go to Charlie’s IEP meeting, I realized that the desolation was gone. I felt no sadness. I felt happy that the sun was shining, the sky was blue, and the mountains had snowy tops. I felt light and hopeful.
Charlie’s IEP was the best, easiest IEP I’ve ever attended. His teacher is phenomenal. The support and progress that he is experiencing at school are unmatched.
And then Truman pooped in the potty, an event a mere five and a half years in the making. I couldn’t believe it. It’s surreal to me that we may have finally done it. The tragic messy bowel movement years may finally be over. For fifteen and a half years we have never NOT had major toileting traumas with multiple kids.
But it’s practically springtime and a new day, and I think we have at long last turned a corner.
This, too, is part of God’s big plan for us.