Kerri Chevrier has two young daughters with very different needs. Six-year-old Ryleigh was born premature with hydrocephalus and additional health challenges, while five-year-old Olivia was born healthy. The girls are inseparable and support each other, which is very important now that Kerri is a single mother.
Kerri is a Family Advocacy Manager in Indigenous Child Welfare for a First Nation community in the Sudbury area. Three years ago, her husband, Johnny, who was a plumber, died suddenly in a motorcycle accident.
“Its a balancing act and some days I lean more in one direction than the other, but I had to find what works for me and my kids. I’m fortunate to have a good group of supportive friends and my family help so much.”
Ryleigh spent the first few months of her life at The Hospital for Sick Children (SickKids) in Toronto, following her shunt surgery. She thrived for the first four years until she developed an infection around her shunt tubing. The shunt was replaced once the infection cleared, but on the way home, Ryleigh had a full grand mal seizure.
Ryleigh was taken by ambulance to a hospital in Barrie and SickKids hospital was consulted. She continued to have seizures that summer. Thankfully, Ryleigh has been seizure-free for nearly two years. However, she was diagnosed with ADHD in senior kindergarten and continues to take medication for migraines, epilepsy and the ADHD. She walks with an ankle foot orthotic on her left foot, receives annual Botox injections in her left leg, arm and hand.
According to Kerri, Ryleigh is a happy, curious and loving little girl. She loves imaginative play and her dolls. She is very active, participating in swimming, outdoor play, camp, dance-ballet and hip hop. Over the summer she played soccer, and, in the winter, she did special Olympics skating. She does track and field day for children with disabilities in her school each year and does well in the track races.
She is caring, loves to help others and being a leader. She is also affectionate and is a people-person, although she does not always pick up on social cues. She is learning at the same level as her peers and is advanced in speech and language and has a good memory.
Ryleigh is in grade one French immersion and is doing very well. Like her father, she is good with numbers and math. She has additional in-class support with an educational assistant (EA) primarily for her physical needs such as physiotherapy and occupational therapy. She struggles with some emotional regulation and reading social cues, because of her brain injury.
Kerri says the sisters get along but fight like all siblings tend to do. “They are close in age, so they have a playmate for life, but of course, two different little personalities come with its own challenges. Ryleigh tends to be my emotional, sensitive one but not a cuddler. Olivia is a huge cuddler, but also a tough sassy creative one. Olivia is very protective of her sister. She can also tell you what Ryleigh has in terms of disabilities and will advocate for her no matter what.”
Kerri sometimes worries that Olivia’s needs are unintentionally pushed aside if Ryleigh is struggling. Olivia stays with family when Ryleigh goes to appointments or the hospital for an emergency.
“I can’t bring her with us, as it’s too hard and unpredictable.” Kerri explains what’s happening in an age-appropriate way. Olivia knows Ryleigh has disabilities and knows that means doctors’ appointments, treatments and hospitalizations.
“I try to include her as much as I can, and I talk often about how being different is good in its own ways. I have some great books that we read together to help both girls understand. We also look at pictures all the time and I don’t hide Ryleigh’s tubes or bandages.
“Olivia is very patient with Ryleigh. I think they teach other to be patient and are empathetic without even realizing it. Olivia is an amazing little sister and always encourages Ryleigh to try. Ryleigh teaches Olivia that being different is a good thing. Ryleigh will always do something if Olivia can do it.”
Looking ahead, Kerri worries about Ryleigh’s future, but she wants both girls to prosper and do what they love. “Ryleigh has talked about being a nurse and I will be behind her for every step. I am also realistic in knowing that Ryleigh may have to live with me longer than Olivia. I just want both of my girls to be the best versions of themselves, live their best lives and be happy in whatever they do.”
Kerri has learned that raising a child with disabilities has its challenges. It is very important to have an understanding employer, supportive family and friends. Kerri trusts her own motherly instincts when it comes to Ryleigh. She also must remember that Olivia could have medical emergencies too, and not compare the girls.
Kerri and the girls are connected to other SickKids families. Kerri finds support through many online social groups for hydrocephalus, cerebral palsy, and children with disabilities. She connects with other mothers of children with disabilities, who are in the same play groups. She is also involved with Special Olympics.
Kerri and her late husband Johnny started a motorcycle fundraiser for SickKids in 2019 to show their appreciation to the hospital for saving Ryleigh’s life and providing excellent care. After Johnny died, the annual fundraiser became known as Ryleigh’s Ride in memory of Johnny. To learn more visit: https://fundraise.sickkidsfoundation.com/ryleighsride Ryleigh and Olivia attend the fundraiser with their mother every year and enjoy sitting on the motorcycles. Each year they become more involved as their understanding grows.
Kerri offers the following advice for parents of children with disabilities: “Take the help, ask for help and rely on those who help without judgement. I didn’t start this journey thinking I would be doing it alone, and its hard. Raising kids is hard. Raising kids alone is hard.
“Raising a child with disabilities while juggling everything else is HARD! I have also had to be honest with employers. Ryleigh has extra appointments and I may have extra sick days, but I will work hard and ensure my job is done.”
“I sometimes remind myself that my parents raised me, and my daughters are in great hands with their grandparents. My sisters also make great babysitters. If it wasn’t for my family, I know things would be so much harder.”
