Thank God for Stubbornness

The worst Thanksgiving I ever spent was on the oncology floor of Seattle Children’s Hospital. You can bet I always win any “worst Thanksgiving ever” story contest with that opening line. It’s usually followed by uncomfortable silences as people check their shoe laces. As it should be.

On Thanksgiving 1997, we had thought we’d be home with our son recovering from the aftereffects of his next-to-the-last round of chemo. By the Monday before Thanksgiving, EJ’s fever had been down for a day, his blood counts were rising and his mucositis was almost gone. But when I got him out of bed to take him for a walk around the floor (a usual part of our routine on days when we were preparing to leave the hospital) he wouldn’t stand up. He wouldn’t bear weight on his legs and hardly seemed able to talk to me.

I was in the little refreshment area they had on the floor at that time, a space the size of a pantry where parents could nuke something, use a blanket warmer, find emesis basins and a few other necessities, and I needed to put EJ down so I could use my hands.

I tried to put him on the surf board. Some Children’s volunteer had designed small plywood shelves that could slide around the bottom of the IV poles so the kids could ride while mom or dad pulled the pole itself – accomplishing the seemingly impossible task of making IV infusions fun. EJ wouldn’t stand on the surf board. His knees didn’t support his weight and he slumped onto his bum, kind of halfway on the board, halfway off. I tried to reposition him and encourage him to grab on to the pole, but he wouldn’t. He was a rag doll.

I often wonder if he was having the stroke right then and there as I squeaked cheerfully, “come on baby, grab the pole.” A nurse finally stopped me by very kindly saying, “maybe we should take EJ back to bed.”

By Thanksgiving we knew it had been a stroke. I remember that week being a blur of trying to find one doctor who we knew who was still there during that holiday week. I remember my ex asking to speak to someone who had actually graduated medical school. I don’t know if it was that bad, but I do remember that Monday, Tuesday and much of Wednesday was spent just trying to find someone with the authority to order the appropriate diagnostic tests.

And finally, on Wednesday, after the MRI, my sister and sister-in-law took me on a walk, and we came back and there was my ex sobbing. They had told him while I was gone. It was a stroke. He couldn’t talk, he couldn’t walk, he couldn’t see.

The next day, the floor was filled with volunteers and family members trying to help us make the best of the holiday. Turkeys appeared on buffet tables. People offered us plates of food. We sat in EJ’s room and wondered if he would live.

Today, on a Wednesday before Thanksgiving 11 years later, I took that now 13 year old boy to an appointment with the school audiologist. It was a mess. EJ hates his hearing aids and bristles under everything that has to happen because of them – the appointments, the maintenance, the responsibility of keeping $6,000 worth of equipment dry and accounted for. He pushes back, he questions, he tries to wrangle his way out of it.

Today he argued that he didn't need two aids, that only one ear was "deaf." He wouldn't lower his head so the (fully grown adult woman) audiologist could reach his hear to check something. He threatened to burn them, then to roast them as part of the feast tomorrow. He leaned away when we wanted him to lean forward.

He was stubborn.

He's stubborn and he won't give up what he thinks is the right course. Of course that can be maddening. I mean, he needs his hearing aids! But I am so grateful for his stubbornness, that spirit inside him that has kept him moving forward, always fighting and struggling against the cards he's been dealt.

Thank you God, for making him stubborn!