Family gather round unbelievable woman’
It was a moving ceremony for Marilyn Dickinson.
Five of her grandchildren were baptised together, at her St David’s home last month.
It was her children’s idea to make the occasion particularly special. Mrs Dickinson was diagnosed with ALS two years ago and is now unable to speak or walk.
She eats through a feeding tube and talks using an iPad; any real movement is courtesy of an electric wheelchair.
It helps her keep up with her six grandchildren — Brooklyn, Isla, Jack, Mila, Adrian, and John
“It was like herding cats,” said Mrs Dickinson’s daughter, Laura Myers, of the at-home service. Her son Adrian was one of those christened on March 13.
“My mum is very religious. She has always gone to church. The baptism, for her, is really important.”
Mrs Dickinson said the best part about it was watching her grandchildren interact.
“It was very special,” typed the former physiotherapist who celebrated her 65th birthday this month. Her family hadn’t been sure she’d reach the milestone. People with ALS aren’t expected to live past two years of the diagnosis.
“Making her a part of anything special is important,” Mrs Myers said. “We try to include her in everything — birthdays are always spent at the house. When you’re stuck at home, you feel like people are going to leave you out of a lot of what’s happening in their lives.”
The entire family took part in last year’s online trend, the Ice Bucket challenge.
“The awareness the ice bucket challenge brought was huge. It was just at the right time,” Mrs Myers said. The incidence of ALS is two per 100,000 people; funding for research is limited. Mrs Myers confessed she had to look up the illness once she learnt her mother had it.
“That’s when it became devastating. There is no cure. Most are gone within two years,” she said. Mrs Dickinson has what is known as Bulbar ALS. Her eyesight is poor; a breathing apparatus helps to clear the carbon dioxide from her lungs.
Her iPad speech has kept her grandchildren entertained since she lost her voice at the beginning of last summer.
“They’ll use her talking device and put in random letters. Sometimes it will come out as a word and they’ll all laugh hysterically,” Mrs Myers said.
Mrs Dickinson said she frequently finds herself full of words that are impossible to summarise. “I was the talker,” she typed. “Now I tell them to talk and tell me stories.”
She said the transition from talker to listener has been “very hard”. “By the time I type the topic has changed,” she said.
Her daughter maintains that she still gives great advice, even without words.
“Emotionally, it’s absolutely miserable, but we have to be strong because she is,” said John Dickinson, her husband of almost 40 years. “No complaints. Unbelievable woman. When I ask her how she’s doing, she’s always ‘just fine’.”
Mrs Dickinson was a Feldenkrais practitioner and Pilates instructor but quit sports medicine to focus on breast cancer rehabilitation after she helped her daughter, Jennifer Fullerton, through her breast cancer.
“She’s an incredibly independent person,” Mrs Myers said. “Everything that she’s always been is a caregiver to everyone else. She helped my older sister thorough breast cancer and lived with her through her chemo and radiation.
“She helped me. I had a bilateral mastectomy because I have the breast cancer gene. [She’s] possibly the strongest lady you will ever meet. Most people would have given up at this point. I have yet to hear her complain — ever. She very rarely breaks down about anything.
“When they gave this diagnosis, it was such a blow personally, because I thought back to what if something ever happened to me. She’s the first person I call, that I lean on. She’s possibly the most amazing mom. I’ve always thought that around Mother’s Day that if a story was to be written about an incredible mom, it would be her because she is so incredible.
“I don’t think she’s ever asked for anything in return. She’s always there, but she never ever expected you to repay her. She’s so giving.”
Mrs Dickinson added: “I just put one foot in front of the other — so to speak. My children, they’ve all been so supportive.”
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