Christmas surprise uplifts teen
Tree lighting, canceled due to COVID, revived for ill Hackett student
The crowd of people waited in the dark around an unlit Christmas tree as the limo carrying Aqilah Jackson and her 14-yearold daughter, Maliha, neared.
They were there to surprise Maliha, a girl who rides horses gracefully and has mastered her own lemon-pepper chicken
recipe. A girl who makes YouTube videos for other children who, like her, live with kidney disease and may, like her, be in end-stage renal failure. She tells them about her low-sodium chicken, because, as they know, those with kidney disease are discouraged from eating salty foods. And she leaves them with the same sign-off every video:
“Don’t forget to live your best life.”
The Christmas tree lighting at Hackett Middle School had been one of the few events Maliha could always attend in years prior because the ceremony was a brief outing, never too physically strenuous for her.
And even this year, regardless of her weakening health, regardless of the pandemic, she’d held out hope that the ceremony wouldn’t be canceled, until it was.
But on Thursday night, after a letter from Aqilah to Hackett Middle School asking if it was feasible to, as her daughter put it, “light up Albany” since the school couldn’t light up the tree, the school figured it was indeed possible. Especially for a girl like Maliha.
So school officials and residents organized a ceremony for Maliha, both to realize her holiday wish and to celebrate the eve of her 15th birthday. At around 6:20, Aqilah stepped out of the limo with her smiling, surprised daughter.
Aqilah, 62, is technically Maliha’s grandmother. After Maliha was born, her biological mother asked Aqilah if she could take care of her, and Aqilah did — especially after Maliha began developing health problems.
At age 4, it was nephrotic syndrome, a chronic kidney disorder.
Then at 7 years old, Maliha was diagnosed with focal segmental glomerulosclerosis, a disease that meant scar tissue had developed on the parts of her kidney that filter waste from blood. Two years ago, her gallbladder had to be removed, and then she was put on hemodialysis. In February, Maliha will check with her doctor to see if she qualifies for a kidney transplant.
“This has been a lot on her,” Aqilah said in a phone interview before the event. “She’s a beautiful child.”
She sees that beauty at night when Maliha prepares for another eight to 10 hours of dialysis and reaches for her phone to message back viewers of her channel who share their own struggles.
“I wish I could take credit, but she’s always been like that,” Aqilah said. “She’s an old soul.”
Aqilah said Maliha was deeply affected by the Black Lives Matter protests from the summer.
In a video titled, “Talking about the protest,” Maliha says she felt like her “heart was pounded” when she saw the video of a police officer kneeling on George Floyd’s neck.
One of their favorite ways to unwind, Aqilah said, is watching movies. A favorite of theirs: “Black Panther.”
News of actor Chadwick Boseman’s death was painful to hear, Aqilah said. After discovering that Boseman had cancer, Maliha felt more resolute about not letting her health completely dictate her life. Friends at school knew Maliha couldn’t ride the elevator or go to gym class, but never why. She never told them about her health and never made anything about her — even her idea for the Christmas tree lighting. She simply felt bad for kids who were in her shoes and looked forward to the event.
Now, as she saw the tree flicker on with yellow bulbs and a bright, white star on top, she looked around and heard a chorus of people sing her Happy Birthday, waving their glow sticks for the girl who, as Aqilah puts it, “is a light.”
Maliha, who wore a mask, clapped her hands as her mother drew her closer, and they both looked on at the holiday festivity.
Aqilah said the whole ceremony was joyous. She felt proud of her daughter.
And Aqilah figured this would become one of her cherished memories, just like the time Maliha convinced her to be interviewed for a video.
It is titled “Interviewing my Mom,” and the two are sitting on a red couch with stuffed animals in the background.
“I have my questions here on my ipad,” Maliha says. “Are you ready Mama?”
“I’m ready,” Aqilah says. “So my first question for you is: How do you feel about my condition?”
And Aqilah told her how she wished Maliha didn’t have it, but they’ve learned how to deal with it every day.
Maliha asked another question. Then she paused and glanced up from her ipad.
“Number three,” Maliha says. “What made you keep me with my condition?”
Aqilah looked squarely at her daughter.
“I love you,” she says. “Period. Unconditionally.”
“OK,” Maliha whispers with a big smile. “Last question … did you know that you’re the best mom ever?”
Aqilah shut her glossy eyes. “No, I’m not the best mom ever,” she says, choking on her words. “But I try.”
“You are to me,” Maliha says. “I love you, Mommy.”