brushfire"This, yes, this, it was always like this." -Stanley Koehler
REFLECTIONS OF AN EMPTY NESTER
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“Time stands still / Beauty in all she is” — Christina Perri, “A Thousand Years” It’s not my love story. I am neither of the players nor is it my stage. I came into their lives as a journalist to tell the tale of two teenagers for whom the stars aligned one night. The headline of my article was: “Dancing with Dylan: One enchanted evening.” They were 17, attending their homecoming dance. Dylan shopped for a suit with his dad, Dave. Lindsey's mom, Michelle, bought her a red dress and matching high-tops — the only shoes she wouldn't kick off. Dylan showed up at Lindsey's house with a dozen long-stemmed red roses. She wore a wrist corsage and he a matching boutonniere. They posed for pictures and enjoyed pizza by candlelight. Later, alone in the gym, they danced to Christina Perri's “A Thousand Years” under the ceiling stars. These weren't “typical” teens enjoying a high school dance, nor would the night have been possible without parents and school staff working together to clear physical and sensory barriers, creating a magical experience for a girl and boy who met in their autism spectrum disorder classroom and created a completely non-verbal connection. Three years after I wrote this article, my newspaper would publish an obituary and five months after that a feature story about a grieving mother, whom I interviewed in the home she shared with her mother. Michelle showed me pictures, a video, and Lindsey’s bedroom — a pink and white sanctuary for the raven-haired, diminutive 4’9” girl who, in 20 years, never spoke a word. Napping on a slice of sunshine on the floor was Ollie, the therapy dog bereft of purpose. Images that pierce my mind from the photo book — a gift from Dylan's parents — Michelle shared with me that morning: Dylan in a black tuxedo and bowtie and Lindsey in a ruffly dress, sparkly shoes and a wrist corsage, seated on a bench before their senior prom; a close-up of the two of them napping, faces nearly touching, a never-fading smile on Dylan’s; Dylan holding Lindsey’s face and kissing her cheek; colorful letter-shaped balloons above a casket that spell out “SASSY.” In one of her mother’s favorite photos, Lindsey is seated on a red exercise ball and Dylan is next to her on a metal chair. He’s looking at the camera but her eyes are closed, her face turned to kiss his cheek. It’s a rare moment when she is caught kissing him rather than the other way around. “She was so comfortable around him,” Michelle said. “She was much more comfortable around him than I’d seen her around any other person.” In the photo, Lindsey is wearing jeans ripped at the knees and silver high-top sneakers. A silver barrette offsets her dark hair. The aqua hair ties in her pigtails match her T-shirt. Doing her hair and makeup and buying her outfits was “my only way of having some control over our lives,” Michelle said. “Because you don’t have any. You can’t control what’s happening to your child and it’s such a horrible feeling. So I think to myself, well, I know I can make her look cute.” And then there was the video with the rushing, rhythmic roar of the BiPAP machine, Michelle’s voice in the background. “Do you love her, Dylan? Tell her you love her.” Dylan is next to Lindsey’s hospital bed, caressing, as always, her cheek. Michelle described “a mourning of normalcy” when the diagnosis comes. “You think about all the things they’re not going to be able to do,” she said. “You just can’t help yourself. You think about how they’re never going to fall in love. They’re never going to go to a dance. They’re never going to date. So many things. “So to have Dylan and Lindsey meet and form this amazing connection; it was not only for them something beautiful, but as parents, for us to see, it gave us something that we thought we’d never be able to witness in their lives.” Lindsey and Dylan are the players and it is their play, but neither can tell it. That is where I enter from behind the scenes, to contribute a verse. *** She was a princess wearing a jean skirt with a bedazzled T-shirt and glitter eyeshadow, frozen in her castle. He was a prince locked in his own world, bright in ways he couldn't articulate, verbal but a "one-word kind of kid," according to his mother, Amy. His name is Dylan, hers, Lindsey. Students at their high school dubbed them with their own celebrity portmanteau: DyLinds. They met in class. He noticed her first. He saw she was tired during her physical therapy session, so he brought her wheelchair to her. The physical therapist, recognizing an instant connection between them, began engaging Dylan in Lindsey’s therapy sessions. Lindsey was prone to falling due to poor muscle tone — another burden of her diagnosis, Chromosome 15q duplication syndrome, along with motor delays and epilepsy — but he motivated her to walk farther, faster, as long as she was walking to him. Lindsey was often late for class, sometimes never arriving at all but landing in the hospital instead. Their teacher, Jill, tells the story of one morning early in their relationship before she realized the bond forming between them. The students were sitting in their usual circle, each with a stuffed toy. Lindsey came in — and Dylan’s bear went flying. He immediately rushed to Lindsey’s side. “We were in the middle of English instruction,” Jill said. “All of a sudden he looked up, got bright-eyed, stood up real quick, took the stuffed animal he was holding and chucked it across the room. He ran over to embrace her and give her a kiss on the cheek.” He would rush to her side again and again — for visits at her house, snuggles on the couch, milestone moments, including his graduation party and her combined 18th birthday and pre-prom gala — and through multiple hospitalizations, to touch her cheek, to kiss her face. To say his final goodbyes while the BiPAP machine pushed a 70-mph wind into her lungs, keeping her alive. “He loved how soft her cheeks were,” said Michelle, who kept fresh roses by her daughter’s urn in her bedroom. The petals reminded her of Lindsey’s cheeks. The room was a shrine to her daughter who at 20 — the age she died — was no longer a teenager, but always a child, who gave her mother sassiness with a look but never spoke a word. Often she was unreachable in her castle tower. Some tried, receiving little response. But her mother knew her little girl was in there. “I knew she was listening. She was always listening. Someone would come and say hi to her and she would totally ignore them as if they weren’t there. … But then when that person would walk away she would give a look, like: Oh, I fooled them.” With Dylan, she made eye contact. With Dylan, she didn't have to jab him with her elbow or pinch him on the arm to let him know she was mad or hurting. He knew without any words ever exchanged between them. “One day he walked in,” Michelle recalled. “She was having a bad day and she was poking at her left eye. … That was always a signal for a bad headache and actually part of her diagnosis was frequent migraines. Dylan walked in and right away walked over to her and put his hand over her eye, immediately, without me mentioning a headache or anything. He knew.” Dylan also was the only one to whom she openly showed affection. Even Michelle only received the occasional loving gesture. “When she gave that affection, it was the greatest gift I could ever get,” Michelle said. “When she smiled, I just melted.” Michelle often referred to Dylan as Prince Charming because he would rescue her with kisses, with joint naps, with movie dates at her house and that one enchanted evening when they danced together alone under the stars in the school gym. “They were like soulmates,” said Michelle. “I don’t know if that really exists, but it was a totally non-verbal connection. They were like magnets drawn together.” Michelle and Amy formed their own bond over the years, referring to each other as in-laws. They talked about the “little slice of normal” their children brought to their families. They learned to set realistic goals and celebrate small victories. They spoke wistfully about planning a commitment ceremony for their two children. Michelle even bought an ivory dress for Lindsey. Lindsey wore that dress in her casket, a white camellia in her hair. In the last photo taken of the two of them together, Dylan is bending down to bestow one final kiss. In the movie version of their love story, the star-crossed pair would have met in another century, joined together briefly in the present and destined to meet again after the film fades to black. In the fairytale version, one kiss and the princess would awaken.
6 Comments
Mary Anne Stiverson
7/11/2019 07:31:22 am
Thank you very much for this heart warming post. Over the years our family would see Lindsey with her mom and dad at family events. Her dad is my husbands nephew. Loved when Michelle would post pictures of Prince Charming and Linds. No words were needed. You could see their special love on their faces.
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Mary Anne Brush
7/17/2019 02:20:59 pm
Thank you for your comment! I am so glad you enjoyed it. It was a privilege sharing their story.
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Betty Carpenter
7/11/2019 02:58:45 pm
Thank you so much for this magical sequence of Linsey and Dylan! I have been following them for a long time. My heart breaks now for Gramma. I was heartbroken to hear of Michelle’s passing. Her heart was too hurt to go on without her Linds😥beautiful tribute to them💜
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Mary Anne Brush
7/17/2019 02:21:45 pm
Thank you for your comment. I too am so sad for their loss.
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Karen Llaneza
7/16/2019 03:44:25 am
so beautifully written.......it captures the bittersweetness in what appeared to be moments of normality for Lindsey and Dylan. I cry every time I read this, and relive each moment as I read on....thank you for your beautiful words. I remain always Gma xoxo
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Mary Anne Brush
7/17/2019 03:52:35 am
I was very honored Michelle opened up to me and let me into the world Lindsey and Dylan created together. I'm glad it brought back some of those good moments for you. I know how much you miss them and wish you strength during this difficult time. My best to you— Mary Anne
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Mary Anne BrushJournalist, fiction writer, wife and mother |