Sophia Burke was surrounded by birthday gifts on her 18th birthday, a remarkable milestone in her life, yet none of them were for her.
The gift bags in the back of her mother’s vehicle, modified to accommodate Sophia’s wheelchair, were for 18 other recipients, most of them surprised by the gesture.
“You’re one of the few who knew we were coming,” said Sophia’s mother, Mimi Burke, in the driveway of my home Wednesday morning. “We’re hoping to surprise everyone today.”
As a birthday gift to herself, Sophia asked her parents if they could personally deliver gifts and birthday cakes to 18 friends, in addition to the Crown Point police and fire departments who’ve assisted her many times in her life. All she asked in return is for them to sing her “Happy Birthday” and video record it.
“She’s been giggling to herself every time we talk about it,” her mom told me.
A flier in each gift bag states, “COVID-19 is scary. Rett Syndrome is too. But together, we can get through both!”
Sophia was diagnosed as a toddler with Rett syndrome, “an awful neurological disorder that messes up everything I try to do – and it mainly affects GIRLS,” states a business card-like handout she offers to strangers. “I cannot talk, use my hands or move around very well, but I can hear you. I understand. I am smart.”
Sophia can still communicate, usually by saying “yes” through looking into her mother’s eyes, and “no” by looking away. Sometimes she does so through an eye-gaze communication device called Tobii. She controls it with her eyes, picking out different words and phrases to share her thoughts.
Her new Tobii allows her to select her own audio voice. She chose a British accent. This is how she indicated to her family that she wanted a yellow and pink birthday cake. And how she insisted on a gift-wrapped roll of toilet paper in everyone’s gift bag.
“Sophia has a silly, sometimes evil, sense of humor,” Burke said. “She’s been giggling to herself every time we talk about it.”
The gift bags they prepared for recipients included a home-baked birthday cake, a T-shirt raising awareness for Rett syndrome, cute stickers, and a cake mix with frosting. A note inside states, “We hope you love your cake as much as we loved making it.”
“We are believers that cake makes everything better,” Burke told me.
For previous birthdays, Sophia has crossed off bucket list wishes and traditional celebrations. When she turned 15, Sophia enjoyed her quinceanera rite of passage at St. Mary Catholic Church in her city. At the reception that night she took selfies with most of the 160 guests.
“Sophia, I think you’re flirting with those officers,” one teenage girl joked to her.
Several uniformed police officers lined up in front of Sophia’s wheelchair. The first officer picked up Sophia in his arms and cradled her during a slow dance. One after another, each police officer cradled Sophia to dance with her for a few tender moments.
It was a sweet night.
“This year, all I can think of is survival,” Burke old me before Sophia’s 18th birthday.
“The coronavirus has complicated everything with Sophia’s health. I’m just praying we all make it to the other side of this. We can’t really celebrate with any kind of party, surrounded by the ones she loves, so we had to figure out something new she could enjoy,” she said.
On Wednesday, along with Sophia’s father, Mike, and her 16-year-old brother, Calan, the family drove across Northwest Indiana to deliver their “not your birthday” gift bags. Their plan was to secretly drop off the presents on friends’ porches.
“Sort of like ding-dong ditching,” Burke joked.
A few recipients caught them as they walked back to their van. Confusion ensued at first. There were some laughs. And a few happy tears. But no hugs, to obey social distancing mandates.
“We’re huge huggers,” Burke said. “It was kind of tough.”
Sophia slept through the first half of their special deliveries after suffering a few seizures early in the morning. Seizures are part of her daily life. She has endured too many surgeries to count, with some years spending more time at the hospital than at home. Turning 18 felt like a miracle to the family, considering all Sophia has been through since she was a girl.
“She woke up in a good mood today,” her mother told me. “We want to share her joy.”
They shared her joy with the Crown Point police department, where a few officers came outside to sing Sophia “Happy Birthday.” And with the city’s fire department, which received a sheet-sized birthday cake and other goodies.
“Lots of giggles and all the feels,” Burke said.
On Wednesday night, after my family recorded a “Happy Birthday” video for Sophia, her mother sent me a message.
“Thank you for being a part of our chaos today. I hope it made you all smile, a brief distraction to all the overwhelming things going on in our world. Surprising 18 friends seemed like a good way to make people smile. And right now, people need to smile.”
