Megan DeJarnett is a wife, mother, children’s book author and motivational speaker who was born with Spinal Muscular Atrophy. She was recently crowned Ms. Wheelchair Tennessee 2020 where her platform is revolved around exposing our younger generation to the concept of inclusion to get rid of social barriers that people with disabilities may face.
Megan sat down with AbleThrive for an interview to chat about her perspective of being a parent with a disability.
Move From Arizona To Tennessee
Megan’s family consists of her husband Jake and their two boys, Bronx and Shai. The couple is from Arizona but moved to Tennessee because Jake is a professional musician. Megan states the move from state to state was interesting because her boys were only two and three at the time, and all of her and Jake’s family lived in Arizona. However, the couple figured everything out as a family.
“We took a big leap and just did it. We moved out here (to Tennessee).”
Figuring Everything Out As A Family
Like most moms, Megan describes having her first baby as interesting because she had to learn how to care for him in her own way. “Because of my disability, I can’t change diapers or go in the kitchen and make a bottle. We had to figure out ways how I can hold him and prop a bottle to feed him. It was more about finding ways to be creative,” she says.
Megan may have difficulties with doing physical tasks for her sons, but she still has a significant role in their upbringing by using her voice to advocate for them and teach them right from wrong.
“We love just doing everyday life together.”
The DeJarnett family loves going to Disney World (in fact they have a trip planned for next month.) “(My boys) are simple. They love going to the park and going swimming at our pool. They love to turn music on and dance around the house,” says Megan.
Having A Son With Disability
Megan’s oldest son Bronx was diagnosed with cerebral palsy. Being a person with a disability, Megan states she has two different perspectives to having a child who has a disability. “I’m coming at (having a child with a disability) from two standpoints. I’m coming at it as just a mom, and that’s hard. Then, I’m coming at it as someone who's lived with a disability their whole life as well,” she says.
“In a lot of ways, because our disabilities are different, it’s just new.”
However, because Cerebral Palsy and Spinal Muscular Dystrophy are different, Megan states in a lot of ways she is just like any other mom who gets the diagnosis that their child has a disability.
She says the fact that she and Bronx both have disabilities makes her family special because it teaches her youngest son, Shai, about inclusion. “His mom’s in a chair, but he doesn’t even notice the difference,” says Megan as she continues to discuss how Shai has an older brother who doesn’t walk and he accepts him as is.
“We’re trying to teach him everyone is different. But, we are special and that we are a family.”
Advice For Fellow Parents With Disabilities
Megan states one of the questions she gets asked a lot is “What advice would you give to fellow parents with disabilities?” She states, “First, I want to encourage them to not give up on their dreams. For us, I think it had to do with being okay with whatever the answer was from the doctor.” Megan gives the example of if the doctor had told her it was not safe for her to carry a baby to term, she and her husband could have made the choice to adopt.
“Laying down your options and being okay with the way things have to happen.”
Megan’s next piece of advice is to use what your strengths are. “If you’re really good at communicating, be a voice, and help your partner that way. Raise your children with a strong voice,” she says.
Thanks to Megan for sharing her story with us!
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