Estimated read time: 5 min
THE SUN IS BRIGHT, on this clear March morning, but it’s too soon to tell, for Diana and her daughter, Lina, what kind of day it will be.
Lina, a pixie of a 4-year-old with big gray-blue eyes and a fluff of short brown hair, was diagnosed with CDKL5 deficiency disorder (CDD) when she was 3 months old.
On a good day, says Diana, Lina swallows her liquid breakfast easily; she doesn’t have seizures.
On good days she goes to school, or sits in the sun with her parents and her little brother Jacob, at their home in the Virginia hills.
“A good day,” says Diana, “seems full of possibility.”
But today Lina woke up with an upset stomach and has been unable to keep anything down. Diana, calm and focused, thinks out loud. Did Lina, who gets dehydrated easily, get enough breakfast? Does she have a virus, or is it something more serious?
“Bad days,” says Diana, “are like living on a boat in the middle of the ocean, in a storm. You can’t get ahold of anything; nothing is ever still.”
Tomorrow they are supposed to make a long-awaited trip to Richmond to be measured for an adapted
tricycle; if they cancel, the chance might not come again. Worse would be a
bad day: Lina in real distress for hours; Diana and her husband, Bryan, trying and failing to
give Lina what she needs when she is unable to tell them. “Not even watching her seize
is as bad as holding her through hours of screaming,” says Diana.
If good days could be anything, then bad days, says Diana, are all the same: “Like living on a boat in the middle of the ocean, in a storm. You can’t get ahold of anything; nothing is ever still.”
There were a lot of bad days early on, as Diana and her husband struggled to learn how to care for her and to envision their future. Diana speaks frankly about the notions she was raised with about people with disabilities. “When she was diagnosed and I was conceptualizing her as a person,” Diana says, “I didn’t feel that she was a full person, because I didn’t think that that’s what a full person is.”
And yet, over time, Diana began to be guided by something she hadn’t expected: an emerging sense of exactly who her daughter is.
“She just has this purity about her, this innocence and sweetness,” Diana says. “She’s calm and open and loving and patient, and she’s strong.”
“My goal,” she says, “is to give her the fullest life I can give her. To have her be happy. So I talk to her, I cuddle her, I kiss her.” It can be hard, says Diana. “She never looks at me…she doesn’t kiss me. She hugs but I’m never sure if it’s intentional. But I do it for her. Because it doesn’t matter if I get something back. I want her to feel loved.”
When Lina first started school in a general education
classroom, “she was happier than I had seen
her in months and months,” said Diana.
What has been good for Lina has also been good for the classroom: from pictures, Diana
saw that one little boy had gravitated to Lina immediately, “playing with her, hugging
her, kissing her.” By the end of the week, half the kids in
the class were bringing Lina their toys.
“My goal,” Diana says, “is to give her the fullest life I can give her. To have her be happy. So I talk to her, I cuddle her, I kiss her.”
The little boy, Diana learned, has a sister with special needs. “He had already learned about the fullness of her,” says Diana. Now Lina’s classmates have learned it too. “Now when they see other kids with disabilities, they will go toward, and not away.”
It is a small step but Diana sees how it could reverberate. “I want people to see families with different disorders, so they see that we’re just like everybody else,” she says.
“Then they could feel more open, and they could integrate kids like Lina into society in a more meaningful way.”
“I want her to have a typical life, even as she is an atypical child,” she says. And like every parent, she thinks about what will happen to her children when she is gone. “I would like Lina to live in a society that cares about her.”
On a good day, all of it feels possible. Good days give the family what Diana calls “future orientation,” where they are able to imagine the road ahead, even if they can’t quite see which way it leads.
“It’s the feeling of, let’s do everything,” she says. “We never have tomorrow, but we have right now.”
On a bad day, there is nothing to get ahold of besides hope, or faith—trusting that the world will give Lina what she needs despite the family’s fears that it won’t, the same way Diana talks to Lina when she doesn’t respond. The only thing to do is keep going.
On this cold March day, Lina is sick for most of the day, but the next day she is better, and the family drives to Richmond to get Lina fitted for her tricycle.
At home, Jacob rides his red tricycle in circles while Lina sits in hers, stretching her legs against the pedals as Diana guides her along the curve of the drive.
It is a good day, everyone feels it; through the
trees, you can see almost all the way to the horizon.