My Uncle Ted died today. Complications from COVID 19. Terrible, horrible complications that left the family exhausted and guilt wracked, making decisions and advocating for him. And in the end, they removed him from the machines, saying if he somehow lived, which they weren’t expecting, he’d never walk again, he’d never feed himself again, he’d never recover.
Yes, he had a pre-existing condition from before birth. He had Down’s syndrome. I never think of it as something he “had” because it wasn’t something he “had”, it was something he WAS.
He was 15 years older than I, but also he was like a child in a lot of ways, so I grew up respecting him as an elder but also asking if I could play pac man on the Atari in his room.
I spent a lot of Sunday’s with my grandparents and since Uncle Ted lived with them, also a lot of time with Ted. UNCLE Ted, I mean. He took his Uncle role very seriously and he would correct me if I called him Ted.
“That’s UNCLE Ted to you,” he’d say.
He vehemently hated being called, “Uncle Teddy Bear” and would also correct me, but in a much crabbier tone of voice.
I was too young to get away with it, but my mom, his older sister, called him “Uncle Teddy Beaaaaaar!” in a singsong voice, and gifted him with many teddy bears over the years, including 50 teddy bears for his 50th birthday.
In my early thirties, when I interviewed for a weekend job at a group home for developmentally disabled women, I was a shoe in when I mentioned Uncle Ted.
Because those of us who love someone who is Down’s know that when you love someone who is is Down’s, you love them with your whole heart. You can’t even help it.
When the media attacked Sarah Palin for posting a picture of her crying son, who is Down’s, comparing Democrats to crying children, my family shook their heads. There is no way someone who loves someone who is Down’s would use a picture intending to degrade or insult people who are Down’s.
“No one knows unless they live with it,” my Uncle Robert, Uncle Ted’s older brother commented, and it’s true.
Once at a school baseball game there was a young man who is Down’s there with his mom. His sibling was on the field. The boy was wearing headphones and pacing around, and every so often he would sing along with the song in his ears.
“HEY,” his mom said, getting his attention and shushing him.
“Well if it’s your jam, it’s your jam,” my sister Megan said to the mom, laughing.
“I just love that crazy maniac,” the mom said.
“We know,” we said.
For most people, I’ve learned, up close, a developmentally challenged person is scary. Unknown, unpredictable.
(All humans can be unpredictable, by the way)
Once, on a day trip to an apple orchard, one of my residents dared to look at an infant in a stroller, from a couple of feet away. The mom put her arm out protectively to block the resident, and then moved the stroller so she was between it and the resident.
“It’s ok,” I told the mom, leading the resident away.
And although the resident was easily moved onto the next adventure, I found myself feeling angry. People who are Down’s are, hands down, the sweetest people I’ve ever known in my life. One look at their faces, though, and other people, the ones who don’t know, put them in the “scary and different” category.
Gram was a fierce protector and advocate for her son. She was instrumental in the start of a special education school program in her community, for children who are Down’s, that still lives on today.
If you were mean to her son, or slighted him, or excluded him, you had to reckon with her.
And you better be there on his birthday, too.
One of the things that was so hard for Grandpa when Gram’s brain started giving out was the indifference she showed towards Uncle Ted. She forgot her role, and even who he was, and it was hard for everyone to see him talk to her, he, who was the sunshine of her life, and her not give him what he expected. We knew he didn’t understand.
When Gram died, her sister sent our family a letter, because she wasn’t able to travel. In the letter she wrote about Gram and her special relationship with Uncle Ted. About how the doctor told Gram that she should consider putting him in an institution.
Gram said, “No, he’s mine, I want him and I’m going to keep him.”
I wasn’t around back then but I remember her telling me that her next son, “sat in the cradle until he was two because he saw me chasing Ted around”.
I can’t help but think now how happy she would be to have him with her again. I hope that’s where he is.
Uncle Ted has been a statistic his whole entire life, and now he joins the ranks of thousands who lost their lives to COVID. And just like everyone else who’s lost a loved one during the pandemic, I’d like him to be remembered for more than that.
He made us laugh. He made us better people. He had a life, and a purpose and a lot of people who were crazy about him. He bagged groceries at the local grocery store and rode his bike all over town to visit students from his class. People in the community knew who he was, and helped him be successful.
When he went out to get a haircut or buy a cheeseburger, he always paid with a twenty dollar bill because he couldn’t count money, and really good people carefully looked out to make sure nobody ripped him off.
I’ll never forget my Uncle Robert bursting in our front door after dark one night,
“Ted’s been been hit by a car,” he said.
My parents had a sitter and were out the door headed to the hospital within minutes. Uncle Ted got a broken leg out of that deal, and didn’t ride his bike as much after that.
He had friends. He had parents and siblings and nieces and nephews. He was the usher at my sister’s wedding, and a lot of weddings of people who loved him.
His sunshine began to fade a little once Gram was gone, and his last years were harder for him than any others.
He stayed a child while everyone else grew up. And he spent a lot of time alone when he was sickest, because of COVID. It’s the worst part of it. The alone.
There is one less ray of sunshine today, as we say goodbye to The One and Only Uncle Ted.