Connor R. McRae’s life ended much too soon, but his legacy — and the love from his family — will never die.
Leaping for Literacy!, a 5K Family Fun Run/Walk will be held on Saturday, June 20 at Bellevue College (formerly Bellevue Community College), 3000 Landerholm Circle SE.
The event will honor McRae, a 16-year-old Redmond resident who passed away on Jan. 8. One hundred percent of proceeds will benefit the Connor R. McRae Scholarship Fund at the Hearing, Speech and Deafness Center (HSDC) in Seattle. HSDC provides critical early learning services for children who are deaf, deaf-blind or hard-of-hearing.
CONNOR’S JOURNEY
Connor was born 30 weeks premature, weighing only two pounds and had a very traumatic birth, with no oxygen for seven minutes, said his mother Cherylyn McRae.
He suffered spinal cord and brain injuries which caused paralysis, seizures and developmental delays. When Connor was eight months old, the McRaes learned that his hearing and vision were also impaired.
Nothing had prepared Cherylyn or her husband, Russ, for the challenges ahead.
“He was my first baby. I thought I would go back to work … but as soon as we saw him, I knew I would have to retire,” said Cherylyn. Fortunately, “I had a project manager background and that became my project, caring for Connor,” she explained.
As a young child, Connor developed serious respiratory problems and at age four, had a severe reaction to seizure medication which led to pancreatitis. He became increasingly fragile and required round-the-clock nursing care. The family hired daytime caregivers “and I was the night nurse,” said Cherylyn.
Yet against the odds, Connor attended special education classes at Frost Elementary School in Kirkland, Kamiakin Junior High in Kirkland and Eastlake High School in Sammamish. And the McRae family, also including 13-year old Megan and 8-year-old Trevor, lived their lives to the fullest, making sure that Connor took part in the fun.
“We took him to Disneyland, to San Diego, to the beach,” said Cherylyn.
On a trip to Disneyland when he was 10, Connor got pneumonia. One of his medications caused a relapse of pancreatitis. The condition stabilized, then returned last year and Connor had to be fed intravenously.
For 16 years, the McRaes bounced between Seattle Children’s Hospital and University of Washington Hospital, dealing with one medical crisis after another. The seizures returned and Connor had a bad one on Christmas Eve 2008 and another two weeks later. This time, he did not survive.
REMEMBERING THE JOY
While telling Connor’s story, Cherylyn asked, “Don’t feel sorry for us. More than anything he gave us joy.”
She reminisced, “He would light up your world with his smiles. When I just washed his face or brushed his teeth, he would have this big smile, like, ‘Thanks, Mama,’” she said. “He loved people, doctors and all.”
The connection with HSDC came about because, “I knew he wasn’t going to talk and had a disability. We got American Sign Language training so we could communicate. Though he couldn’t sign, he could smile or turn his head to indicate he understood.”
She said Connor was blessed with wonderful aides and teachers in his schools, although “they’d never had a kid like him before.” Classmates who could walk and talk were fascinated by him and his adaptive equipment. They still talk about him, said Cherylyn.
The theme of the 5K Fun Run/Walk, “Leaping for Literacy!” was inspired by Connor’s love of the color green and his delight when he saw pictures of frogs. At The Bear Creek School in Redmond, where Connor’s siblings are students, a teacher had a picture of a frog with the acronym, “FROG: Forever Rely on God.”
That seemed like a perfect tie-in for an event to commemorate Connor’s life and help other kids understand philanthropy, said Cherylyn.
Also, “he loved the outdoors, loved movement, was intrigued by looking up at the trees.” Although Connor won’t be physically present at the Fun Run/Walk, she believes he’ll be there in spirit.
A longtime volunteer for HSDC, Cherylyn has stayed on as a contractor to help other special needs families. It fills some of the emptiness she’s felt since Connor’s passing.
“Before, every day, I would solve a problem with insurance, or a school or a hospital,” she said. “My phone doesn’t ring anymore. My task is to keep his legacy alive, give back to others. It’s not just about Connor. I want it to be better for other kids, too.”
To view a slide show about Connor’s life and videos from a celebration service, visit http://www.vimeo.com/album/99241.
ABOUT HSDC
Hearing, Speech and Deafness Center (HSDC) is located in the Artz Communication Center at 1625 19th Ave. in Seattle. The center features a full range of speech-language and audiology programs for people of all ages. The center also serves children with communication delays due to autism and related disorders. For information, visit www.hsdc.org, e-mail speech@hsdc.org or call (206) 323-5770.
