First of all, I decided James should attend the wake. Previously, I would have kept a child, especially an autistic child, away from such an event. But this woman was lovely to us, and especially, to James. How could we honor her? Then I remembered the viewing of my husband's Godfather, where his fellow police officers entered, saluted their comrade, wished the bereaved well, and exited. It was all about respect. James could do that - and he did. First, at the casket, he shook his head when I explained the body was Aunt Connie. He walked to an easel where photographs were displayed and pointed at a recent image and nodded. What could I say? The boy was right. Then we went up to her husband. As he bent down to greet my son, James reached up and gently cupped the devastated man's face in his hand. He held it for several moments as well as his great uncle's gaze. It was a lovely, lovely gesture that was greatly appreciated. James may have not understood but he could see intense sadness and great pain, and then he desired to comfort. How could I have denied my son and myself of this incredible experience?
That is where spending too much time in my head got dangerous. Well, not really, I never said a word aloud to anyone but my husband - and now here - but I silently fumed when I heard relatives call the wake/viewing "barbaric." Similarly, it was insinuated by some that the day-long hospital visitations by my mom and dad in-law were overbearing and unnecessary, (even though their sister was coherent until almost the very end). Even a few stated they did not go to hospitals. Then one night, my dear sweet husband innocently said something to the affect that laying in a hospital bed wasn't a high quality of life. Unfortunately, that's when I cracked. Everyone is missing a key point here: DYING - regardless of quality - is a part of life. We increasingly shove it in a corner, sanitize it, compartmentalize it, so we don't have to see sickness, aging, deformity, or pain. Somehow it is the person's fault: they are old, they smoked, they didn't "take care of themselves." The caring of someone who is not going to get better, someone who is going to die, has some how become unworthy. I find this terrifying. Who the heck has the ability qualify life?
As a friend slowly succumbed to terminal cancer, we had amazing conversations about death and dying. Once, to her protests, I flew up to the hospital because she was alone and the person who shared her room had passed away AND was left lying in the next bed for hours. This was a person she had conversed with for days. She more feared how her dead body would be treated than death itself. I am incredibly awed by this experience. It opened up areas of conversation that were previously taboo between us. As speech became increasingly exhausting, we would read the same books and communicate our opinions in writing. She was young, beautiful and died of lung cancer when she never smoked a day in her life. I am so glad I "intruded" on her that day.
I realize I feel so strongly because James is autistic. I gave up my so-called life when I became his caregiver and advocate. No more office in Times Square or rides in chauffeured Lincoln Town cars. No more heels and designer dresses and expensive salons. No more apartment in Chelsea and celebrity acquaintances. Of course, I miss all that stuff on occasion, but not for long. What James has provided in return - besides hugs and kisses - is far, far greater. I would have missed so much without him. He has given me deep insight, compassion, empathy, and joy. He has taught me how to read people and situations intuitively. Simply, he has opened my heart. Most of all, James and his father have made me realize the importance of living and somehow enjoying life every day. Once his dad told me that happiness is a choice. I get it.
