Ramona Bell’s 18 year old son, Melvin, is severely autistic.
“He does not talk, he needs assistance nearly every minute of the day. He’s not aware of risks. He’s also a pica, so he eats things that are not supposed to be eaten.”
Ramona is a jewelry maker, an artist, a gold smith, who lives in Ballard with her family, but she had to give up her work to become a full time caregiver to her son.
“It’s, of course, huge love, it’s feeling trapped. I’m a person who loves to travel and do things and having to be in the house all the time is pretty much punishment for me.”
She gets up two to six times a night with her son, sometimes having to change his bed sheets twice a night. She’s exhausted and has forgotten what it’s like to socialize.
“I don’t want to be defined through my child. I want to be me and I want him to be him. But that’s hard. If you’re a caregiver, you are defined through your kid because this is your job. It was not my decision to become a caregiver.”
In 2009, Seattle poet and UW professor Heather McHugh was awarded the prestigious MacArthur Foundation “Genius Grant.”
“I’ve written since I was four years old. I’ve always written poems,” Heather told me.
It’s a $500,000 prize that Heather could use however she pleased. She chose to start a non-profit called Caregifted, giving all-expense-paid, week-long trips to caregivers who desperately need a break. Ramona spent a week in Victoria; her first solo trip in 15 years.
“It was such a nice thing to just brew my coffee in the morning and go back to bed and read for a few hours,” Ramona said. “Stick some face mask [on] my face and look terrible for half of the day. Or I would go for long walks and be by myself. It was the start of a healing process.”
Heather was inspired by her godson and his wife, who instantly became caregivers when their baby was born with Microcephaly.
“I saw what happened to their lives, overnight” Heather said. “He had to walk from this plum executive chef job, nor can she have a job because she’s going to therapy with this baby every day. They were walloped with a $13,000 annual insurance bill.”
Heather selected three beautiful lodges in the Napa Valley, Vancouver Island and an island off of Maine, and she accompanies the caregivers on a weeklong getaway.
“We try as best we can to match what it is people would dream of doing,” said Heather. “If they want to go to Nascar races, I’ll take them to Nascar races. If they want to go to museums, I’ll take them to museums. If they want to sleep all the time, they can do that. They don’t need to be hovered over. Some want conversation, some don’t. So they get to be caregivees, for a change.”
Heather says on day four, all of the caregivers start to feel inspired again, more like their old selves.
“It gave me that very, very important break to come back to myself,” said Ramona. “To find out about myself that I’m not only a functioning machine, that I’m actually a person, a woman, an artist. To feel like someone who is not only cleaning, which was the most part of my life.”
Melvin is now doing a short-term stay at Fircrest Residential Habilitation Center in Shoreline and Ramona is adjusting to sleeping through the night, and she’s making jewelry again. She misses her son, even though she knows that Fircrest is good for them both.
“For us, Melvin is a great teacher about life. Melvin has taught us that life is not only about being successful, it’s really about finding happiness. He’s absolutely a happy person. He’s laughing a lot. Out of the blue he has happiness attacks. He likes to be hugged and to cuddle. He’s a very, very cute person.”