Parenting, no matter the circumstances, is undeniably difficult yet unbelievably rewarding. The responsibility of keeping a tiny, vulnerable human healthy and happy can be overwhelming. But what’s more overwhelming is the fierce love you feel for your child and the constant worry that follows.
Now imagine your little one getting diagnosed with a chronic physical, developmental, behavioral or emotional condition. For Delores Banks Clayton and Kenton Clayton, this was a very real and raw moment.
Journey, their daughter, is a sweet and fearless eight-year-old girl who loves music, singing and exploring. She also happens to have Chromosome 15q duplication, which is a rare chromosome abnormality that causes developmental delays, hypotonia and in Journey’s case, epilepsy and severe autism.
“When she was a baby, it wasn’t obvious. I thought she was just a late bloomer,” says Delores. “But then she didn’t sit up until she was eight months old. She wouldn’t make eye contact, and she wasn’t interested in things other babies were interested in. She didn’t walk until 18 months. So, you could say my intuition kicked in and I knew something was wrong. That’s when we went in for genetic testing and received her diagnosis.”
Today, Journey needs supervision 24 hours a day, and help with daily activities like brushing her teeth. With only about 15-20 words in her vocabulary, her ability to communicate is limited. Every day presents a new set of challenges to overcome, but luckily Delores and Kenton are no strangers to the caregiver role. Delores has been a practicing nurse for more than 10 years, and Kenton had a stint as a hospice CNA. They’re familiar with the healthcare system, and subsequently the lack of community resources and support services for parents that have kids with disabilities and special needs.
“We take good care of her,” says Delores. “I’m a health nut. I pay close attention to what goes in her body. We only eat organic and take our vitamins. It’s no surprise that she hardly ever gets sick, and when she does it’s usually only for a day or so. But when she was recently diagnosed with the flu, that was different.”
When Journey started showing signs of flu-like symptoms, Delores took her to their pediatrician. She was sent home and told to keep Journey hydrated and comfortable. But after a few days Journey wasn’t eating or drinking, and her fever spiked. Delores knew she was severely dehydrated and needed IV fluids.
“We called the pediatrician, but they were booked. The nearest urgent care and hospital is still a 45-minute drive in Atlanta traffic. And I wasn’t sure if she would be admitted at an emergency room. Regardless, we’d be sitting in the waiting room for hours with the bright lights, loud noises and germs. That environment can be a nightmare for kids like Journey.”
After a quick Google search for the nearest urgent care, DispatchHealth — an on-demand healthcare delivery service — popped up.
“When I called, they explained that a nurse practitioner or physician assistant, along with a medical technician, would come to our home to treat her and give her IV fluids. I felt immediate relief.”
DispatchHealth understands that people with acute or chronic illnesses, intellectual disabilities, forms of dementia, physical disabilities, and other medical conditions often face major challenges when trying to manage a trip to a distant and crowded medical facility. They believe that people of all ages and in all conditions deserve the opportunity to benefit from the convenience of prompt medical attention, which is why they proudly deliver medical services to the home or place of need.
“They were gentle with Journey and we felt so comfortable. Parents with special needs really do know best. We know our kids so well, and DispatchHealth respected that. They were very professional while assessing her.”
While Journey is on the mend, Delores and Kenton are on a mission to shed light on the reality of life as caregivers and advocate for similar families.
“We need more services like DispatchHealth, especially on the south side of Atlanta. Not everyone has access to transportation to get to an urgent care or emergency room, and there aren’t any bus systems nearby.”
When asked what advice they would give parents of children that have just received a diagnosis for developmental delays, medical conditions, psychiatric conditions or congenital conditions, Kenton paused before sharing an honest and thoughtful response.
“It’s normal to feel isolated, lonely and exhausted. But isolation can be dangerous. It can hurt your relationships. There will be good days and bad days. Go easy on yourself. Feel every feeling. Be upset. Be mad. But then remember that you were given the gift of your child for a reason. And most importantly, know that you are not alone. Find support groups to confide in. Once you find your people, your advocates, your village…all the challenges and struggles will seem just a little bit easier.”
To learn more about the types of people that DispatchHealth serves, visit dispatchhealth.com/people-we-serve.
To request care in Atlanta, click here.