Tracy Briggs, Published February 26 2012
February’s Beautiful Woman fights for the rights of the disabled
As 18-year-old Macy lays her head on the pillow, she looks up at the glow-in-the-dark stars on the ceiling and over at a luminescent moon tacked to the wall.
Above the headboard she sees the words “Sunshine Girl” written in black paint – a nickname because, as Tammy says, “Macy lights up every room she enters.”
While it’s Tammy who tries to re-create the universe in her daughter’s bedroom, it’s pretty clear Macy is Tammy’s universe.
Her devotion to Macy, who has cerebral palsy, and her commitment to fight for others with disabilities makes Tammy this month’s Beautiful Woman.
The first years
Tammy describes her pregnancy with Macy as normal. But during labor, Macy’s umbilical cord separated from the placenta. By the time she was born, Macy had been denied oxygen for 40 minutes causing severe brain damage.
Tammy says she didn’t even know if Macy would live.
Coming home from the hospital without her baby was hard, Tammy says. Macy had to stay in the neonatal intensive care unit for five weeks, and Tammy grieved the loss of what she had hoped for her child and just tried to get through the long days and nights.
“For the first five years, Macy just didn’t sleep, and she was throwing up a lot from reflux,” Tammy says.
She relied on prayers from friends and family to get through the early days. It was trying but she spent little time on “what ifs?”
“You don’t ask why, you just keep going,” Tammy says. “God knows why. He has a plan.”
And there were other struggles. When Macy reached sixth grade, Tammy and her husband decided to divorce. He has stayed in Macy’s life with visits every month, but most of the time it was just Tammy and Macy.
“All along, I believed in God’s will,” Tammy says. “I knew he wanted Macy and I to be a team.”
But it was difficult knowing how to take care of her “teammate.” Macy is unable to speak, and Tammy had to learn to read her expressions.
“The hardest part is when she’s hurting and she can’t tell me what’s wrong,” Tammy says. “I’d sometimes think, ‘Come on. Can’t you just give me this one thing?”
When Macy was young Tammy says she wanted to talk with other parents going through the same situation. But this was before the internet, so that wasn’t easy.
When Tammy mentioned her frustrations to a case worker, she was told that the state of North Dakota was looking for parents to come to Bismarck to talk about their experiences.
What soon developed was the North Dakota Parent to Parent program, a statewide network of parents supporting families of children with developmental delays, disabilities and special health needs. The program is run by Family Voices of North Dakota, which Tammy is now president.
For about 10 years, Tammy’s been a member of the Metro Area Mayors Committee that serves people with disabilities. She also serves on the North Dakota State Council on Developmental Disabilities.
Her goal is to make sure individuals with disabilities are treated fairly and that they live in a world of accessibility and acceptance.
Finding love again
By the time Macy reached junior high, Tammy was working full time at Job Service North Dakota in Fargo and immersed in volunteer work. Her life as a divorced, working mom was plenty full.
She never figured she’d get married again. But then she met Ross DeSautel through a mutual friend.
Ross had recently lost his wife to spinal cancer. Their friendship soon turned into more, and Tammy couldn’t believe what she was seeing. “He was hands on right away with Macy. I kept thinking, ‘Is this guy for real?’ ”
Ross says he slowly learned the ins and outs of taking care of Macy. Now it’s just part of his life, a life in which he can’t imagine not living with these two people. He says it was an easy decision to nominate his wife of four years for Beautiful Women.
“She’s beautiful and caring,” he says. “Not only does she mean everything to me, she means a lot to everybody else.”
Ross says he knows Tammy spreads herself thin with volunteer work, but he knows she thrives on it.
Next up is something Tammy calls “Macy Rae Day.” The celebration started last year on Macy’s 18th birthday. To celebrate, they stuffed gift bags for children in the hospital.
This year, they’ll be helping Sanford and The Ronald McDonald House.
Tammy’s eyes sparkle when she says “This year we’re doing a rock star theme!”
The 43-year-old doesn’t find anything she does extraordinary. Helping others doesn’t require a lot of planning or work, she says. Macy Rae Day came together in just days.
“It doesn’t need to be a big deal. My advice to people is just that when you have an idea … let it blossom.”
Tammy expects Macy to graduate from Fargo’s Davies High School in two years. After that, she says Macy could get a job. Macy, like anyone with a disability, just wants to be treated like everyone else, Tammy says.
“Being a part of the community, contributing to society, it’s not a privilege, it’s a right, and we need to remember that,” Tammy says.
Cerebral palsy is just one part of Macy, like her curly brown hair or her green eyes, Tammy says. Macy is a normal teenager who likes mani-pedis and spending time with friends. Macy even gives Tammy the classic teenage eyeroll once in a while.
“I don’t know, for some reason she doesn’t want to spend every waking moment with her old mom,” Tammy says with a laugh.
It’s been a tough road at times, but Tammy says she’s continually amazed by Macy, calling her “the strongest person I know.”
“She’s my daughter but she’s also my inspiration,” Tammy says. “I’ve learned so much patience through Macy. She is such a blessing. It all comes down to how you choose to look at your life. I think so many of us are surrounded by blessings, and we just don’t see them.”
As blessed as Tammy feels to be Macy’s mom, and as she continues to fight for others with disabilities, she can’t help but dream of the day when she will be in a different world with her Sunshine Girl.
“I think one day we’re going to have a big, ol’ conversation,” Tammy says. “I dream of dancing on the beach with her and of holding her hand. Someday. Someday.”
Tracy Briggs is the Digital Content Development Director for Forum Communications. She can be reached at firstname.lastname@example.org