Persevering Strength: Kelly Casparius talks motherhood despite cerebral palsy

Apr 23 • EXTRA! EXTRA!, Feature, FEATURE SIDEBARNo Comments on Persevering Strength: Kelly Casparius talks motherhood despite cerebral palsy

It’s hard enough being a mother with a fully abled body. The constant motion of getting up and down throughout the night to feed the little one or change diapers presents its fair share of emotional and physical challenges. But imagine being a mother with limited capabilities. Can a woman even fathom not being able to pull her child from a crib, pick her up to cradle her when she cries, or chase her in the park while she flits around from slide to swings?

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FAMILY TIME: Charlie and Kelly Casparius celebrating their their daughter Cailyn’s first birthday in 2013. Courtesy photo


Kelly Casparius knew she would be facing another world of issues when she decided to become a parent.

Born with cerebral palsy, she spent a great deal of her life in various physical and occupational therapies from age 18 months until 12. “It started out four days a week and then progressively went down to once every other week by the time I was discharged,” she tells. “Then it was a maintenance thing after that.” She even had corrective surgeries on her ankles at age 16.

Doctors aren’t sure if the cerebral palsy was caused from Kelly not breathing for two minutes when she was born, or if it was because of the numerous complications her mother endured while pregnant. Though mentally on point, Kelly’s fine motor skills always will need honing. Despite these obstacles, she makes it clear she is built  to push forward thanks to a family full of support and encouragement.

“My parents are very much of the attitude that the world is not going to adapt to you, so you have to adapt to it,” Kelly says. “We have steps in our house, not many, but I had to figure out how to get around them. I had to learn to use my crutches to maneuver things. Their whole idea was that at some point, when there isn’t a ramp, I will have to figure out what to do.”

Through a great deal of youth, Kelly switched between using her crutches and a wheelchair to get from point A to point B. Though she wasn’t oblivious to her restrictions, she never felt mistreated because of them. In fact, she says oftentimes kids at her school would argue over who could help her next, since she was let out of classes early to ensure on-time arrival to the subsequent class. She sought out independence and allowed any hindrances she faced to be the impetus for greater inner strength.

“I was the first person in our immediate family to move away to college,” Kelly says. At ECU she lived on her own, armed with a power chair to help her get across the hilly campus, so she could learn without feeling exhausted from rushing around on crutches. She got a degree in counseling and led as normal a life as any college student. She dated and even had her own car outfitted with a hand control that allowed her safe transportation, as to make up for slow reflexes with her feet. Upon graduation, she began working in her hometown of Fayetteville and found passion in children’s therapy. During that time her boss had encouraged her to help a 7-year-old boy who was facing many behavioral issues.

“I was terrified,” she remembers. “I thought, ‘What if he comes in and starts throwing stuff, or running around and I can’t catch him?’ From the moment he came in, it was a different dynamic. My boss said something—though I didn’t see it at the time—how I was more on his level. Because I wasn’t an adult towering over him, I could look at him eye to eye, and it broke down his defenses.”

Around that time Kelly began dating a math teacher, Charlie, who lived in Laurinburg, NC, by way of Maine. They met on Match.com, and though Charlie had never met anyone with cerebral palsy, he didn’t let Kelly’s physical condition overshadow how comforted and loved he felt around her from day one. Their courtship lasted six months before they were engaged; a year and a half after meeting, they married. And within a year after that, they began discussing a family.

“I told Charlie I knew everything worked well biologically,” Kelly remembers, “but as far as the physical constraints, I told him I wasn’t sure if it was a possibility for me to have children. With my muscle tightness, I didn’t know how pregnancy was going to take a toll on my body. So, I just prayed. And if I couldn’t physically handle it, I knew we would look into adoption.”

After receiving clearance from her OBGYN, the husband and wife made a go at it. Within a few months, they received the news they would soon become parents. The worst of Kelly’s pregnancy came in the severe ligament pain she endured, especially from being in the wheelchair and carrying her daughter so low. Yet, after the C-section and Cailyn’s delivery, all pain vanished. She had a healthy baby girl, and the real work of manipulating daily life to see to the child’s needs became the focus.

“I couldn’t change her diaper, because I couldn’t get on the floor or reach the changing table,” Kelly says. “I actually used our dining room table and put a towel down, because it was something I could roll under. But even that was hard for me. I didn’t want to lose my grip on her and bang her head on the table or something, but we figured it out.”

Charlie proved to be extremely hands-on, often bringing Cailyn to Kelly throughout the night for feedings. He would change her diapers, bathe her and dress her. Roles were reversed, as Kelly worked at her private counseling business full time and returned after five weeks of marternity leave. Charlie was a stay-at-home dad to Cailyn.

“I still can’t fix her hair,” Kelly quips. “Her daddy’s really good at it, though. I can’t get her in and out of the car seat because of the height and distance between me and the car seat.”

Kelly also can’t get out of her wheelchair to run around the park. She can’t take her daughter ice-skating or collect seashells on the beach. In essence, she’s restrained from doing many everyday activities mother and children do.

“I think that’s the hardest part,” Charlie says, “Kelly not being able to do simple things. And, emotionally, I know that’s hard, because as a mother you want to do everything. I would have to say that’s been the worst part for Kelly.”

However, this family has paved their own path to normalcy. Cailyn has climbed in her mom’s lap to secure a hug and a kiss since she was 9 months. She also shows extreme patience for a 2-year-old, often waiting with a smile for her mommy to get situated before taking help out of the high chair. Cailyn even pushes her mom into her bedroom to play dolls, and learned how to walk by steadying herself with a bar on the back of Kelly’s wheelchair.

“Charlie has told me since day one, it’s not the changing of diapers or clothes that Cailyn will remember,” Kelly says. “It’s the ‘spins’ we do in the wheelchair in our living room, and reading books together, and teaching her to tie her shoes—that’s what she’ll remember. That took a long time for me to get over, but I am getting to that point. I am seeing that she loves me, too, which is something I worried about with Daddy being her main caretaker.”

The mother-daughter bond became even more apparant upon hearing Cailyn’s first word: “mama.” And it’s quite appropriate that her second was “wheel.”

Though chasing soccer balls on a field may not make Kelly the proverbial soccer mom, she hopes to at least be able to drive to a game. Since Kelly and Charlie married, they traded in her hand-controlled vehicle to upgrade to a larger family car. May is Mobility Awareness Month, and Kelly has been nominated as a local hero, who “encourages people with disabilities to embody the spirit of Life Moving Forward,” according to  the National Mobility Equipment Dealers Association (www.mobilityawarenessmonth.com). Kelly can win a Toyota van modified specifically for people with disabilities if she garners enough votes; as of press, she had 6,000.

The addition of these wheels to her family means more freedom not just for Kelly but for Charlie, too. He will no longer have to drive her to and from work, to coffee or dinner dates with friends, or take her and Cailyn to the movies. More importantly, those future mother-daughter shopping dates will become more of a reality—part of the everyday memories Kelly’s looking forward to encountering.

“I want that independence back,” she says.”That’s what I want to achieve again with Cailyn, to show her we can push through obstacles, no matter what.”

 

DETAILS:

Mobility Awareness Month: Vote for a Local Hero

Voting for Kelly Casparius is open through May 9
www.mobilityawarenessmonth.com/entrant/kelly-casparius-wilmington-nc/

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