Detours: my daughter was diagnosed with cerebral palsy

Detours: my daughter was diagnosed with cerebral palsy

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My daughter was diagnosed with cerebral palsy: image of a woman relaxing on soft yellow leaves on the ground and smiling
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Detours: a short story about how I reacted after my young daughter was diagnosed with cerebral palsy


My anger about Jessica’s diagnosis, whether born of fear, pain, or grief, blinded me. I secretly despised the rest of the world, but that couldn’t explain why I lashed out at Jessica’s teacher, Miss Frankie. Maybe it was because she always assured me that we were in the best place possible. Still, that day, her platitudes annoyed me so much, I finally exploded.

I arrived to drop off Jessica and Sarah at the preschool program when I ran into Frankie in the parking lot. She waved us over.

“Cathy, how’ve you been? Girls, let’s take your mommy to the classroom. She and I need to catch up.”

Sarah and Jessica ran in and headed to the sand table. I stood by the door, stared at the colorful shag rug, and twisted the toe of my sneaker into the thick pile. I knew what Frankie would ask me.

“So, how was the visit to the neurologist?”

“I guess I didn’t tell you. The doctor diagnosed Jessica with cerebral palsy.”

Frankie gasped. “Cerebral palsy? But you were supposed to talk to me as soon as you heard. I told you I can help with Jessica.”

That’s what triggered it—the speech.

“Frankie, don’t you understand? It doesn’t matter how loving you are, how many degrees you hold, or how many years you’ve taught. Jessica needs a trained therapist, not some teacher with a master’s in special education.” Bits of saliva flew from my mouth as I yelled.

“What’s wrong with you?” Frankie’s eyes widened in horror as she wiped the spit off her arm. My outburst was so out of character, the shock on her face frightened me. “You need to calm down before either of us says something we’ll regret.”

My friend Marin marched up the steps and grabbed my hand. “Hey, Cathy, let’s take a walk. I’m a good listener.”

Fidgeting, a flush of warmth rose across my face. I turned to Frankie, apologized, then went outside. Marin and I watched through the window as Frankie sat cross-legged with her peasant skirt tucked between her knees. She called the children for the morning circle. Sarah, who adored Miss Frankie, sat beside her as the rest of the children gathered on the rug. Jessica stood aside as one last straggler hurried past her. She might as well have been invisible.

“You saw that, didn’t you? Jessica doesn’t play with the other kids. I don’t care how hard Frankie tries; this isn’t the right place for her. I haven’t found a program, and I’m frustrated beyond belief.”

Marin squeezed my shoulder. “I know it’s hard. I can see why you’re angry. Frankie thinks Jessica should hang around other two-year-olds, at least until you find another program. But hey, you know your child. You know what kind of environment she needs. You’ll find the right place, eventually.”

My voice rose as I erupted. “You know what’s hard? The frustration. The dead ends. Everywhere I turn, it feels like the universe conspires against me. This morning I grabbed a towel to dry the wet dishes next to the sink. Four plates slid off the counter like a set of dominoes—my favorite dishes. Strangely, the sight of those broken plates made me think of Jessica. I wanted to smash them into tiny pieces.”

Marin nodded sympathetically. “I’m sorry. So, did you have to throw them away?”

“No. I picked up the pieces, glued the plates together, and salvaged all but one. The cracks are barely visible. If I can fix dishes, why can’t I fix Jessica?”

Marin said something about how we all worry about our kids. How she worried about her daughter, Abby, until she turned two. But Abby didn’t have a twin. I couldn’t help comparing Jessica to Sarah, and my growing fear about her delays haunted me. There had to be something I could do. At that moment, I decided I wouldn’t rest until I found an answer.

We walked along the tree-lined path to the parking lot as Marin chatted. “Hey, I’ve meant to ask you about something. We have this sit-on train, and Abby’s gotten too big for it. Do you want it?”

I glanced at Marin. She squinted in the sun, her freckles bursting out in the summer heat. Grabbing her red hair and twisting it into a bun.

“Sarah told me about Abby’s train. If you’re giving it away, we’d love to have it. Do you think it will fit on my patio?”

Marin nodded and said her husband would be happy to bring it over and help set it up.


 

Read moreGrowing up with cerebral palsy

 


The following weekend, a fifteen-foot plastic track covered the patio floor. The battery-powered train had a red locomotive car, a control panel in the front seat, and a red caboose car that sported another plastic chair. As Chip and Marin’s husband finished the assembly, Marin hooked up the engine compartment battery. Sarah and Abby climbed on to ride.

“Sarah will want to have this too.” Marin handed me a black-and-white striped Thomas, the Tank conductor hat. Wary, Jessica watched through the glass doors until Sarah called to her. “Do you want to get on and ride with me? Abby said it’s your turn.”

Abby offered Jessica her seat, and to everyone’s surprise, Jessica climbed on. For the rest of the day, the three girls took turns on the train. Jessica focused, her tiny mouth slack, like a door with a loose hinge. The train jerked forward and glided along the track. Perched on the seat, Jessica kept her hands clasped around Sarah’s waist, wearing an expression of utter joy. My twins, as different as two sisters could be. I lifted my eyes to the heavens and sent a silent plea. Please let Jessica move forward.

Dr. Brownstein phoned a week later. Her voice rose in excitement as she said, “Mrs. Shields? I have good news. I spoke to your insurance company. They agreed to cover Jessica’s occupational and physical therapy. This would include pool-therapy sessions. Jessica can attend three days per week, beginning on Monday. It’s not exactly what you wanted, but it’s what I can offer for now. The next step is getting Jessica into the early intervention program when she turns three.”

I twisted my fingers around the phone cord. What I had hoped for was improbable; immediate placement in the full-time program, but this would have to do.

Three mornings a week, I dropped Sarah and Alia at their schools and drove across town to Pavilion. The half-hour occupational therapy sessions followed a half-hour session in the pool.

“We’re here for swimming therapy. Are you?” On the opposite side of the bench, the young mother lifted her son’s shirt over his head and tied the drawstring on his blue bathing suit.

“Yes, is this your first time?” I finished pulling the bathing suit straps over Jessica’s shoulders.

She lifted her son onto her hip and extended a hand. “No, we’ve been here for a few months. I’m Melanie.”

Her little boy had a moon-shaped face. Melanie glanced at him, smoothed her son’s blonde hair with her palm, and kissed his head. “This is Nolan. He has Down syndrome.”

We left the changing room with our children on our hips.

“How old is Nolan?”

“He’s just turned two. He hasn’t learned to walk yet. That’s why I have to carry him.”

Melanie heaved and swung her heavy child to her other hip. His fingers pulled the top of her suit and exposed her breast. She unhooked his grip, shook her head, and laughed. “He knows what he’s doing. He likes to test me.”

“Jessica walked late, but I carry her if I’m in a hurry. She’s still kind of wobbly.”

Melanie murmured, “I wish I had more time to work with him. I have a full-time job, but my boss gives me time off. At least I’m able to bring Nolan to therapy, but it’s hard because it’s just the two of us. Nolan’s father left a few days after we found out the baby had Down’s. He said he couldn’t handle it. We haven’t seen or heard from him in two years.”

From the other side of the pool deck, the physical therapist waved to us. “Come on in, ladies. I’m Brody.”

Melanie and I stepped in and glided down the steps into the shallow end. The water felt as warm as a bathtub. I longed to hear more of Melanie’s story, but Brody started the session.

A woman climbed into the pool, apologizing for being late. She carried her child into the water.

“Cherie, Momma’s got you,” she crooned as she lowered the girl into the water. Cherie moaned like an animal, her limbs gnarled, her hands curled inward.

I bit my lip and cringed. What if I were that mother? Maybe things weren’t so bad. Both Chip and I held on to the belief that with therapy, Jessica would get better.

“Everyone ready?” Brody swam closer. “Today, we’ll teach the kids how to float on their backs. Moms, I want you to hold your child under the arms and have them lie down in the water.”

Jessica thrashed and fought me as I tried to dip her back. Brody swam over.

“May I?” With outstretched arms, he reached for Jessica, held her face to face, then quietly spoke. “I will hold you under your arms and let your legs float in the water. Pretend you’re a jellyfish.”

Step by step, Brody continued until Jessica’s arms and legs floated on the surface, balanced like a kite suspended in the wind.

I pressed my hand against my chest. “I can’t believe you got her to do that.”

A few feet away, Melanie trailed Nolan through the water. “Come on, Buddy, you can do it. Just stay on your back.”

I thought about how Nolan’s father left and would learn in the years to come; this wasn’t an uncommon occurrence, but that day, all I could think about was why this husband left.

“Chip, why didn’t you leave me?”

He pulled off his sweaty t-shirt and plopped on the floor. “What are you talking about? How about hi, honey, how’d your run go?”

I crossed my arms and watched his face. “You’re right. Let me try again. How was your run?”

“Okay.” Chip pressed his face against his leg and reached for his ankle. The wet t-shirt muffled his words.

“I need to ask you something. Why didn’t you ever leave?”

He lifted his right arm towards his left foot. “Leave? Leave where?”

“Today at Pavilion, I met a woman whose husband left her when they learned their baby had Down syndrome.”

Chip stopped mid-stretch and gave a brief nod. “Uh-huh.”

“After she told me her story, I wondered what made her husband leave? Why didn’t you leave me?”

Chip looked up with an impish grin. “I did, but I got lost.”

It took me a second to comprehend and tried not to crack a smile. “Chip, you didn’t answer my question.”

“What? Was that a trick question? I saw you trying not to laugh. How many times have I said if my life was a puzzle, you’d be the last piece that makes it complete?”

“Stop. I want you to answer me.”

He wrinkled his brow. “So it wasn’t a trick question?”

I folded my arms across my chest. “No, it wasn’t.”

“You know I would never leave you. I’ve never considered such a thing. We’re a family, and families stick together. What other people do has nothing to do with us. I’m getting in the shower.”

He grazed my neck with his fingers as he passed me. “Come on, it isn’t that complicated. We love each other. I don’t quit. You won’t either. You’re going to do everything in your power to help Jessica.”

I hoped he was right. Sometimes when I imagined myself floating into space, it was Chip who kept me anchored.

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Article by
Catherine Shields

Catherine Shields is a retired educator with an M.S. Ed in Exceptional Education. Her background includes extensive experience networking with families of persons with disabilities.

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"Come on, it isn’t that complicated. We love each other. I don’t quit. You won’t either."

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