I sit in the darkened movie theater, quietly sobbing. My husband and two younger sons sit to my right, chortling at The Lego Movie. As much as I try to lose myself in the antics of Emmet and Wyldstyle, my heart is broken, and I can’t concentrate. I look around at the theater packed with people and feel completely alone.
Anyone glancing at me as we leave the theater would see a slightly disheveled 40-something mom with puffy red eyes holding hands with her husband and her 6-year-old, as her 8-year-old bounds ahead to the car, both children delighted by an evening out.
From all outward appearances, we look like a completely normal family.
Nobody knows that not long ago, my husband and I sat at the bedside of our 11-year-old son, Ethan, and watched him breathe his last breath.
Ethan was an invisible member of society for most of his life.
He suffered a brain injury at birth, and was left with cerebral palsy, epilepsy, cortical blindness and the developmental equivalency of a 6-month-old. After a series of near-fatal respiratory infections as a kindergartner, he was homebound for over six years — too medically fragile to attend a school for special-needs kids, church or even the grocery store. His world consisted of his bedroom, adorned with art projects made with his special education teachers and therapists, the occasional walk around the neighborhood with his nurses, or visits to the doctor’s office.
My husband and I tried to keep life as normal as possible for Ethan’s little brothers.
As a partial family, we attended church, ran errands, and participated in school activities, while Ethan remained in the care of his nurses at home. Happy and well-adjusted, our boys matter-of-factly responded to teachers and friends who asked.
“Yeah, I have a brother in a wheelchair. He doesn’t walk or talk.”
Only a few close friends and a smattering of church leaders had ever been to our home and seen our son in his hospital bed, his room filled with medical equipment, and a nurse by his side. Only a few brave souls dared to venture into our world, filled with medical specialists, therapists and the constant threat of illness.
“I’m sorry, I can’t make it,” I said once to the member of our church activities committee who asked if I’ll be at the upcoming family campout.
“Oh, why can’t you come?” she wondered, assuming that I had to work or had some other obligation.
“Well, my oldest son’s nurse leaves at 7:00 p.m., and I’ll need to be home with him through the night.” Silence followed. “Oh, I didn’t realize you had another son … ”
I took a deep breath and adopted a bright tone of voice as I rushed through my standard speech.
“Oh, don't worry! Ethan is very severely disabled and we really can’t take him to large social gatherings. He gets sick really easily, so any germs people carry can make him sick and send him to the hospital. We’re really lucky to have some great nurses who can take care of him during the day so that we can do as much as we do.”
“Oh … I’m so sorry to hear that,” she stammered, not knowing what to say.
It’s difficult to know what to say.
Growing up, I knew a young man with cerebral palsy. He was healthier than Ethan and his mother helped him to be “mainstreamed” as much as possible, attending high school and singing in church. I’m ashamed to admit that I was painfully uncomfortable around him and avoided interacting with him.
I know that the woman standing in front of me would feel similarly uncomfortable, standing by Ethan’s bedside, hearing his Chewbacca-like noises, seeing me or the nurses suctioning secretions from his mouth, and noticing his thin limbs, contorted by spasticity.
I tried to put the woman at ease. “He’s doing fine right now — we just have to be extra careful with him.”
I charged ahead, filling in the uncomfortable silence. “Ethan’s very happy and is a big flirt. I’d love to have you come by sometime and meet him.”
“Sure, that would be great. Maybe we can bring the kids someday,” she replied uncomfortably and hurried away down the hall.
I knew she would’t drop by, and I couldn’t blame her.
I understand that, in addition to the threat of illness, there are other reasons why our home has had few visitors.
But at Ethan’s wake, it was standing-room-only in my house.
The counters were overflowing with food and treats, and my children streaked through the house, grabbing cookies and cupcakes as they headed to their bedroom with their friends. Friends, family and loved ones poured out onto the patio and pool deck. I heard conversation and music coming from the other room as I sat on a chair in the living room, staring dazedly at friends from my triathlon club .
“Thank you for being here,” I repeated over and over. “It’s so good to see you. Would you like to see Ethan’s room?”
The room was warm, and the fragrance of the stargazer lilies among the dozens of flower arrangements was overpowering, making me feel a little dizzy. Ethan's beloved dog sat on his empty bed, as people trailed in and out of his room, still filled with medical equipment, remarking on the art projects on the walls, paintings adorned with glitter and feathers and bearing the marks of his fingerprints.
I wish more of these loved ones could have known Ethan.
He lived a quiet, largely unseen life that I hope was filled with love, light and the soft licks of our dog, Zeus. He departed this life just as quietly, with his parents at his side, holding his hands and kissing his cheeks, watching his chest rise and fall until it was time to go.