How My Son With Autism Handled My Mother’s Passing From Cancer
It was a long and ugly war, one with many battles. For seven years my mother went through a series of bouts with cancer, each leaving her a little less independent, a little weaker in body, but never in spirit.
The uterine cancer she got 11 years before kept at bay before it reappeared four years later, claiming one of her kidneys. The year after, a small lump in her breast required a lumpectomy and after some radiation, she was back on track, for a while at least.
Complications came a couple of years later in the form of intestinal blockages. During a hospital stay, they also found a small mass in the pelvic region. The uterine cancer was back and began to ravage her body, first taking part of her bowel, requiring a colostomy. She would live the rest of her days with an ostomy bag on her abdomen to collect her waste. It was tough for her to accept, but with time she mastered handling it and was back on track.
For the first time, chemo was her only option.
But it wasn’t enough. While the growths reduced, those that stayed weren’t going. In fact they had strengthened to stage 4. The whole time, despite her weakness and frailty, she thought she had a chance.
Her name, Milagros, means miracles in Spanish — something she’d brag to anyone within earshot. She had been spared from death since her difficult birth. One of the nurses, impressed by mom’s survival, suggested to my grandmother she name her after the miraculous event.
Despite that claim to fame she had a tough go at life. A single mom, she raised me and my sister on her own until she remarried and had my youngest sister. That second marriage was not easier, but she was always proud of her kids. This, she said, was her proudest accomplishment.
And then came my son and with that, a new name for my mom: Grandma Bubbles. During a phone call with my mom my son, then a toddler, tried to tell her he was watching a show with bubbles in it, but it merged into Grandma Bubbles. She loved it and to earn her new name, she made sure to stock up on bubble wands. She also had a knack for keeping plush toys that she would give names to and make funny voices for. There was often a show for my son, who was an eager audience.
Sunday visits became our ritual, where we stopped by, ate lunch and chatted. My son would whip out toys from the box she kept and got her out of her slump, if only for a moment. With time it was tiring for her to even sit in a seat for too long. She’d still chat him up but got tired quickly and he would need to be quiet during most of our visits.
I thought my son’s ADHD would make the new conditions too restraining for him, but each week he’d ask, “We’re going to Grandma Bubbles on Sunday, right?”
During those visits he would come in quietly, greet her with a kiss and a hug, and pat her near the ostomy bag, so “She could feel better.” He would sit quietly in the living room near by, popping in to check on her until it was time to go home. Each time he’d say, “Don’t worry, you’ll be better when spring comes.”
It was spring when she was admitted to the oncology ward.
The ward didn’t allow younger kids, but by Easter, Mom went to hospice. Mom now had three bags: the ostomy, the nephrostomy (to save her only kidney) and a tube to drain food from her digestive tract. The intestinal blockages had taken over the upper bowel, making it impossible to eat solids or too much liquids without them getting trapped between the growths.
I tried to figure out how to explain to him that she wasn’t getting much better. Through the years my mother had asked me if I had prepared him about loss and death. I had, but hoped he wouldn’t have to bear witness at 8 years old.
For now, he seemed happy he was allowed to see her at the hospice, where he could have his Sunday visits again. Each weekend he’d notice more tubes, some to make the pain go away and soon came those to help her breathe.
“Poor Grandma Bubbles,” he’d say. I explained she could still hear him. She would open her eyes and mutter sometimes and he’d tell her not to worry, she just needed to rest.
The week she became completely unresponsive, he was set to go, but I warned that there would be a big difference in Grandma Bubbles. She didn’t move much but she was still alive for now. He said he was scared. I told him it was a tough visit and perfectly OK if he didn’t want to go. I figured he would stay home, but he thought for a moment then said, “I want to go, mommy. It’s Sunday.”
When we entered her room, a nurse was tending to her. He greeted the nurse and walked up to my mom’s bedside. The nurse and I exchanged a nervous glance. He reached over to mom’s hand, bowed his head and kissed it, like a prince in a fairy tale.
“Grandma Bubbles, I’m here.” He told her he loved her and rested his head on her chest. The nurse left, trying to hold it together. I swallowed as much air as I could stuff into my chest.
She passed away the next day.
Like many kids on the autism spectrum, my son doesn’t take too well to unexpected changes to his routine. The Sunday visits to grandma’s house were a big part of his life. He understood that things were changing and had been so empathetic in a situation that was the toughest of my life.
I thought about the wake. It had been scheduled for Sunday. My husband and I went back and forth. We had asked a lot of him during my mom’s illness and decline. He had shown maturity in the face of a situation that would daunt many, grown up or 8 years old. I didn’t want him to see my mom in a coffin, but it didn’t feel right keeping this from him. So, again, I asked him.
I explained what he would expect to see. He asked if she would ever talk or move again, where she’d go next and a bunch of deep questions I may never find the answer to, and I was honest about the fact. I started telling him he didn’t have to go but before I could finish he said, “It’s Sunday, mommy.”
At the funeral home, he passed by everyone as they tried to greet him and made a beeline for the front, where my mom laid. She didn’t look in pain anymore. She looked like she was resting.
My mom was a casual dresser, but on this day she wore a soft blue dress embellished with delicate butterflies, one of her favorite themes. “Wow,” he said, resting his hand on her arm and marveling at her dress. “You look cute.”
As I wondered if he truly understood, he tells her, “I’m going to miss you so much,” and plants a kiss on her arm.
On this day he may have learned about loss and death, but I learned about the strength of my son’s character, and his poise and grace in the face of it.
On this day I remembered how often mom said your kids are your greatest accomplishment, and took comfort that my son proved his Grandma Bubbles right.
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