Special world filled with love
Carson Copher lives in a small world filled with an abundance of love and care.
Nearly 4 years old, Carson has vision, hearing and health issues that require him to receive special medical care to meet his needs. Parents Christian and Kayla Copher and sister Cambri, 18 months, comprise Carson’s immediate family. Carson has had medical needs since birth.
“Unfortunately we don’t have a diagnosis or a prognosis,” Kayla wrote via email. “We know which chromosomes are affected; however, there is no other documented case of his abnormalities. We basically just take every situation and try and work with it the best we can.
“We try and live in the moment the best we can – and we know that it could end at any time.”
Despite the uncertainty, Kayla nurtures her family with resolve.
“For Carson I want him to feel happiness and love every single day,” the Callahan mom wrote. “I want his happy little world to stay happy. That is my goal for him every day. Cambri is a little more tricky – my goal for her is to also keep her happy little world happy, but I also have to teach her how to live in an unfair world where her brother has special needs. I have to make her aware of his needs without burdening her with them. I let her do everything she wants to help take care of her brother, but she doesn’t have to do anything.”
Carson is included in family activities whenever possible.
“We incorporate Carson into reading time and movie nights and everything that we can,” Kayla wrote. “But we also have just Cambri time. It is her time to get away from Carson. Just like Christian and I need breaks, I think she does too. Whether it be at the zoo, or just to get ice cream, we make it a point to get her away from Carson so she can be one-on-one with us.”
Christian doesn’t hesitate when it comes to caring for his son as he and Kayla move forward, not knowing what lies ahead for Carson.
“The most challenging part of being a special needs parent is moving past the ‘let’s fix it,’ phase,” he wrote. “As a man especially, when I encounter a problem my first thought is, ‘How can I fix it?’ Having a child with special needs definitely changes that outlook because there are some things (like in Carson’s case) that can’t be fixed.”
Kayla writes a blog, “You Are My Sunshine” which details aspects of Carson’s medical journey as well as her struggles or successes as a mom. The critical care nurse works at Wolfson Children’s Hospital. She and her husband team up to enlarge Carson’s world when he’s unable to explore.
When Carson was hospitalized during Easter, she modified his hospital crib into an oversized Easter basket filled with plastic grass. The bed was large enough to accommodate Carson and Cambri.
Still, the young mom doesn’t always feel equal to the tasks she faces on a daily basis.
“Balancing my duties to my children and my husband is my biggest struggle,” she notes. “Carson relies on someone else for literally everything. Providing for Carson’s needs is one of my main priorities every day. However, my relationship with my husband comes first. We are a team. Every decision that is made in our household is made together. Our marriage is the foundation that our parenting is built from. He keeps me in check and I do the same for him. As special needs parents we grieve and celebrate together every single day. That’s not a relationship that I could ever have with anyone else.”
Kayla also doesn’t buy into the myth that all of life’s duties can become balanced.
“My biggest struggle with balancing everything is myself,” she wrote. “I’m my own worst critic. I feel guilty one day for not taking Cambri to do something because Carson can’t go. Other days I feel guilty for taking Cambri to do something that Carson can’t do. Sometimes I feel guilty for going to work instead of spending every precious day with Carson that I can. And then at times, I feel guilty for always feeling guilty. The truth is there is no such thing as a balance. We are always teetering on a balance beam – and really I just do what I can to keep myself from falling off that day.”
Nevertheless, she and her family deal with the stressors of Carson’s care.
“I have learned that the stress associated with special needs parenting is different than other types of stress,” Kayla wrote. “It’s not something that you can dwell on. As special needs parents we are constantly living in stress and that’s OK. We plan our lives around the unknowns related to Carson’s health. That’s stressful, but it’s part of the job.
“When we get bad news or find ourselves in a less than favorable situation, we take that stress and we put it away or get mad or cry or do whatever we have to do in that moment to deal with it and we move on. We welcome the next chapter of our story with all that it entails and we move forward. Dwelling on the stressors of special needs parenting only hinders my ability to parent.”
Despite his condition, Carson exhibits typical behaviors that most parents will recognize.
“Let’s just be honest. Carson is the boss of the family,” Kayla wrote. “He controls the TV, the thermostat and oftentimes the plans for the day. He is very sweet and will give you the absolute biggest grin. Don’t let him fool you though, he’ll give you the stink eye and scream at you if you change his channel.”
Christian expressed his love for his little boy.
“Even though Carson may have disabilities, he is still able to light up a room with his smile,” he wrote. “It’s little moments like that, that will make you proud to be a parent – regardless of what handicaps your life.”
Kayla encourages parents of children with special needs to never give up.
“I would tell other special needs couples that your situation never gets easier,” she wrote. “Oftentimes parents secretly wish they could change their special needs child – though everyone thinks it’s terrible to say out loud. The truth is, though, your child isn’t the one that needs to change. It’s you – and you will. You will learn and grow and become an expert on all things your child and you will be amazing at it.
“Just don’t forget to put that same effort into your marriage. Special needs parents have a nauseating divorce rate. Step one in avoiding that is to be aware that you are in a situation that is going to require a lot of open communication – to prevent bitterness and – quite frankly, insanity.”
Follow the Copher family blog at https://you-are-my-sunshine.com.