Photos by Chris Gordon.
Lauren Santora looked fine today. She does many days. That’s the thing with chronic illness: it’s not as much a story of acute calamities — Lauren has been hospitalized several times in her eight years — but the practicalities of everyday life. The Santoras and other families with chronically ill kids face a quiet struggle that outsiders often fail to grasp.
Some days she’s good. Some days she isn’t. Her parents have to monitor her condition constantly. Lauren has type 1 diabetes, an autoimmune condition in which autoantibodies attack the insulin-producing cells in the pancreas.
The toll of Lauren’s illness is not confined to herself. It also falls her mother, Dianna. It falls on her father, Joe. And it falls on her brother, Ryan, who also suffers from ADHD. Both siblings also have celiac disease, another autoimmune condition.
Lauren has been playing hockey since she was two-years-old. She presents herself as a articulate and joyful little girl. Every day, Lauren tries to lead a normal life. But with chronic illness, you never quite get there.
“You don’t have to stop your life just because you have it,” Dianna said.
Somewhere along the way, Lauren became a Caps fan. Living in Connecticut, everyone else in her family supports the Rangers.
“I don’t really know,” Lauren said when asked why she’s a Caps fan. “I just don’t like the Rangers.”
“That’s a good answer,” Alex Ovechkin, who was seated next to her in the Capitals locker room, chimed in.
Hockey is a lifeline for Lauren and her family, something to hold on to during gloomy days. Lauren’s dream was to meet Ovechkin, which was fulfilled via the nonprofit Kids Wish Network.
On Friday, Lauren and her family ate breakfast in a conference room at Kettler Capitals Iceplex, a meal prepared by the Capitals’ team chef. Ovi was Lauren’s waiter. Afterwards, Lauren went on a shopping spree in the team store. She then got her gear on, along with an EPIX mic, and took the ice at the conclusion of Washington’s practice.
With Michael Latta and Mike Green in goal, Lauren took one-timers from Ovi or drove to the net 2-on-0 with him. She snowed her mom with her skates three times, a moment Lauren was particularly proud of.
“You’re the new captain of the team,” Ovechkin told Lauren when they got back to the locker room.
“She’s a good hockey player,” he added.
Lauren’s condition is incurable. Today was just one day in her life. But it was a good one.
Sitting on the Capitals bench at end of the day, Lauren had one thought.
“That was really fun,” she said.
This is a touching story for me personally. Pediatric chronic illnesses sometimes seem unremarkable to people, but the toll it takes on the children and the family is immense. I talked to Lauren’s mother for a while. She’s a lovely woman who tries to mentor other parents in similar situations. Parents of chronically ill kids are heroes to me, Dianna and Joe Santora included. So are Cheryl and Michael Gordon. Like Lauren, I have an autoimmune condition. It cost me six years of school. There were many dark nights. For 12 years, my parents have been there for me, managing appointments, test results, and daily life. I’m starting to get better now, but I will not forget my family’s sacrifices. Eventually, Lauren will grow up to be an accomplished and happy woman. She won’t forget what her parents did for her. Neither will I.
Russian Machine Never Breaks is not associated with the Washington Capitals; Monumental Sports, the NHL, or its properties. Not even a little bit.
All original content on russianmachineneverbreaks.com is licensed under Creative Commons Attribution-NonCommercial-ShareAlike 3.0 Unported (CC BY-NC-SA 3.0)– unless otherwise stated or superseded by another license. You are free to share, copy, and remix this content so long as it is attributed, done for noncommercial purposes, and done so under a license similar to this one.