My Daughter Has Cerebral Palsy—and I Refuse to Sugarcoat How Hard It Is

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Aimee Christian is the mother of Thora, 5, and Freyja, 3. Her blog,Teeny and the Bee, chronicles family life and parenting issues involving Freyja, who has cerebral palsy. She is candid about the difficulties of raising a child with special needs and explains here why she is unwilling to sugarcoat her experience.Right away, I knew something was different about my second daughter, Freyja. My first daughter, Thora hit all of her milestones on time—or early. Everyone told me that wouldn’t be the case with my second child, but I knew something wasn’t right. She slept so soundly and for so long that I’d have to rouse her to nurse. She started getting sores under her arms because they were hanging limp from lack of muscle tone and no air was getting into the area. My husband and I kept asking her doctors and all of our friends what could be wrong, and everyone dismissed our concerns. They saw this happy, giggling, smiling baby and just reminded us that all babies develop at their own pace. Her consistently cheerful personality was all anyone wanted to see.

Every specialist said, “Oh, she’s fine!” Or, “Eh, she’s just a little behind!” But when she was seven or eight months old, our pediatrician finally relented and suggested we start evaluations of her motor skills, reflexes, strength, flexibility, coordination, and more. They noted some neurological red flags and suggested an MRI, just to rule things out.

Freyja’s MRI was the second-worst day of my life. Trying to get a 14-month-old to lie still in a scary, whooshing metal tube is next to impossible. Doctors sedated her once and then had to do it again because she was still struggling. A week later brought the actual worst day of my life, as a cold neurologist blandly read the results off a piece of paper. Freyja’s brain had a number of malformations, particularly in the cerebellum and pons—or the brain stem. She was diagnosed with diplegic cerebral palsy.

I felt a momentary stab of something like vindication—my intuition had told me something was wrong—but that was quickly replaced by sadness and fear. Not to mention rage that our doctors had wasted a full year of her life when she could have been in treatment.

My husband and I looked at each other, and we were like, “This is going to suck.” I had some really ugly thoughts. Could I really love this child? But of course, I already did. It took me a long time to grasp that I can love her and hate her disability. She is the best thing that ever happened to me, and her disability is the worst. A diagnosis was a positive development because it allowed us to move forward with treatment. We had a course of action. We didn’t have the luxury of letting ourselves fall apart. The type A control freak in me said, “Okay. We have some work to do.”

“I felt a momentary stab of something like vindication—my intuition had told me something was wrong—but that was quickly replaced by sadness and fear.”

As we began to tell our friends, family, and coworkers about Freyja’s condition, people kept saying, “Wow, you’re so strong. I couldn’t handle that.” I never understand this response. What choice did I have? Our role as parents is to prepare both of our children for the world. That process of preparation will just differ for them.

PHOTOGRAPH COURTESY OF AIMEE CHRISTIAN

I’m not like some other mothers of special-needs children. I don’t believe that everything happens for a reason. I don’t believe that my daughter is an angel sent from heaven to teach my family and me humility. The truth is, my daughter isn’t differently abled. She’s disabled. Life will be challenging for her in ways I can’t even grasp yet. If I could take this struggle away from her, I would. But the reality is I can’t. I know life will be frustrating for her.

“Our role as parents is to prepare both of our children for the world. That process of preparation will just differ for them.”

At this point, Freyja can play with the other kids. She doesn’t need a full-time nurse, and in a few years, she will be attending kindergarten. She can take steps with the help of her bright purple walker. Her doctors say her prognosis is “cautiously optimistic,” and while that’s very nice, I hatenot knowing what her future will hold. Will Freyja finish high school? Go to college? Get a real job? Will she ever be able to live completely on her own or fall in love and have a family? She’s still only 3 years old, so we can plan a few months or years into the future at most. I don’t know if she’ll get to have a job or a spouse, but a friend pointed out that I can’t predict that for Thora, either. That’s pretty much how parenting works.

Of all the stresses of Freyja’s health—the twice-weekly physical therapy sessions, the monthly appointments with specialists, the bills that come along with those appointments, the research of every single building for handicapped access—one anxiety in particular hangs over my head: What is going to happen when I die? I worry about where she will live. I worry that she won’t have an advocate. I worry that my older daughter could be stuck in the role of caretaker forever. Thora automatically helps her sister already, opening her markers and fetching her dolls when they’re out of reach, but I don’t want her to feel stuck with this job. That wouldn’t be fair to her.

Thankfully, my freight train of concerns and anxieties halts when this amazing kid looks at me. I love her so much. She has such a wonderfully explosive personality. She routinely walks up to strangers and starts conversations, happily sharing her own name, age, birthday, and whatever is going on in her day—and then she asks for a hug. It is so fun seeing the world through her eyes. She makes me laugh every single day, sometimes every hour. She recently broke her arm and has a purple cast to match her purple walker. If people ask about it, she says, “I fell down and went BOOM!”

PHOTOGRAPH COURTESY OF AIMEE CHRISTIAN

I find myself worrying, “Is she happy? Will she have a happy life?” And then I realize—Oh wait, she’s completely happy. That’s what gives me the energy for the next day. It’s worth it. She’s just totally worth it.

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