Sharmba Varner begins her workday at 4:30 a.m. and, for this mom of four, including two children with special needs, life rarely pauses for one minute until her early evening bedtime.
That’s fine with Sharmba. Even though having a daughter on the autism spectrum and a son with Down syndrome means days filled with extra challenges and concerns (not to mention medical and therapy appointments), Sharmba also packs those days full of typical childhood pleasures like dance and basketball practices, horseback riding lessons and backyard play. She is all for celebrating milestones – even if they come later than what’s expected.
Sharmba has worked in the power billing department at First Energy for 15 years and was busy parenting daughters – Haleijah, now 20, and Halanah, now 15, when the big twists and turns rocked her life.
Mhani was born in 2013 and concerns about speech and sensory issues were evident before her second birthday. She began speech therapy and underwent genetic testing. A chromosomal variation led to an autism diagnosis in January 2019, along with the diagnoses of ADHD and a learning disability.
It was a difficult diagnosis to have confirmed and even now, four years later, Sharmba is still adapting family life to help Mhani with her sensitivities, such as her fear of the sound of running water and flushing toilets.
“We also have to be very careful about the shows she watches because she can easily get fixated on a topic,” said Sharmba. “We are working to help her understand that not all phrases of speech should be taken literally. That’s just the way her mind works.”
But that’s just one aspect of Mhani. The inquisitive 10 year old loves art, writes creative stories and hopes to one day be a singer, actress or fashion designer.
Life took a second major U-turn during her pregnancy with Raynell Jr. (RJ). When she learned of his Down syndrome (Trisomy 21) diagnosis at 12 weeks into her pregnancy, Sharmba struggled with the news.
“When I got the diagnosis, I just fell apart,” she said. “But then Haleijah really helped me through the moment. She had just done a school report on Trisomy 21 and said, ‘Look at these photos. Look at these happy kids.’ For whatever reason, I was thinking that he would now never be the basketball player son I already had in my mind. And then Haleijah said, ‘Mom, maybe he’s meant to be an artist or a musician. I am so happy to have a baby brother.’”
More stress was yet to come. RJ failed his stress test at 37 weeks and had no amniotic fluid protecting him. He was delivered by emergency C-section and spent his first 6 weeks at Akron Children’s. He has had surgeries to help his hearing, vision and feeding. Speech, occupational and physical therapy became routine.
Liker her older daughters, Sharmba counts on partner, Raynell Sims Sr., for support. But his job as long-distance truck driver keeps him away from home often.
That means day-to-day care of two young children with special needs falls primarily to Sharmba.
Given the roller coaster ride of the past few years, Sharmba puts a priority on self-care.
“I am an advocate for counseling,” she said. “I see a counselor every other week, and I have a life coach.”
She also tries to carve out 45 minutes each day for a favorite hobby- crocheting.
Sharmba says it’s okay to feel sad when first getting a life-alternating diagnosis for a child.
“It’s okay to grieve, worry and cry,” she said. “Get all of those emotions out and don’t beat yourself up about it. We all need to better trust in ourselves as parents.”
But, she said, in time acceptance will come and “you will begin to appreciate your babies for the perfect humans they are.”
Sharmba will go the extra mile to research the best schools for her kids, to make sure doctor’s and therapist’s recommendations are followed at home and to give her children with special needs the same opportunities as her oldest daughters.
“Sharmba is full of love, pride and optimism for her amazing children and her family,” said Dr. Jessica Foster, director of Developmental-Behavioral Pediatrics at Akron Children’s. “She has always been an advocate, tirelessly seeking out resources, asking questions, speaking up, and making sure her children have every opportunity available to support them as they grow and thrive. Her honesty about her emotions and her desire to share her experiences as a mother of children with special health care needs is truly inspiring!”
As positive as she is, Sharmba admits to still having her moments.
Recently, for example, she noticed how much more other children RJ’s age – he’ll be 5 in July – were doing to care for themselves.
“It’s not easy watching your child struggle,” she said. “Having a son who’s almost 5 but developmentally comparable to a 1 year old is not easy. It can be exhausting at times. It can be overwhelming at times. But I do believe God chose me for a reason. I think He knew I would be up to the task.”