Mother: Marcia (68)
Daughter: Alena (21)
Briarcliff Manor, NY
“Life is Short”
It was not birth, but fate that brought Alena into Marcia’s life. Marcia had almost given up her dream of starting a family when she was given a chance to adopt a plucky three-year-old from Siberia. Before finalizing the adoption, Marcia was given one important bit of information; Alena was afflicted with Maroteaux-Lamy Syndrome (MPS), an incurable disease that would claim her life within five years. The news did not deter Marcia at all - she was all in, and the feeling was mutual. Marcia and Alena had found each other and there was no going back.
Upon returning to their home in Westchester County, NY, Marcia’s mama-bear instincts set in. She was going to protect her little girl no matter what it took. She found a treatment that would keep Alena alive, but Alena would have to undergo a five-hour treatment every week for the rest of her life. Alena was the first person in the country to receive the life-saving enzyme missing in her body. Because of Alena’s physical disability and small 4’3” stature, her childhood was marked by bullying and isolation. As a result, Marcia became her default best friend and biggest supporter.
Now that Alena is 21, Marcia and Alena are at a crossroads. Marcia wants to protect her daughter and do everything for her but she also realizes that is not realistic. She’s conflicted on how to let go. Alena needs the tools to become independent and manage her disability on her own. But Alena doesn’t want to leave the nest. She is putting off milestones in her life that would separate her from her mother because she loves the life they have together and doesn’t want anything to change.
Over the years, Marcia has helped build Alena’s confidence by encouraging her love of music and singing. Alena attends a big MPS conference every year and this year they have asked her to perform one of her original songs! However, Alena has developed a polyp that could prevent her from ever singing again. She is undergoing laser surgery as a last ditch effort. Will the surgery be a success?
The surgery is scheduled for November and the MPS Conference is 12/19
License to Drive
Marcia wants to get Alena a car for her upcoming graduation. Alena is dragging her feet because having her own car would mean she wouldn’t spend as much time in the car with her mother who drives her everywhere. Also - driving is a much bigger ordeal for someone with a disability, and Alena is not a confident driver.
Marcia’s fiancée, John worries that she is putting off their wedding because of her relationship with Alena., Alena isn’t the biggest fan of John, either and would not be disappointed if her mother’s wedding never happened. Alena is territorial of mom and wants to keep her for herself.
The Birth Family
Alena has expressed interest in finding her birth family in Siberia. Marcia does not want to discourage her daughter, but she worries about the pandora’s box of issues that it may bring up. Also - Marcia has a big secret. She knows that Alena had a sibling that died of MPS and she believes that her family gave Alena up because they didn’t want to care for her. She desperately wants to protect her daughter’s heart at all costs!
The Pit Bull
Marcia can no longer micromanage every detail of Alena’s medical care because Alena is an adult. However, she doesn’t think Alena is ready to handle things on her own. Marcia doesn’t think that Alena has the “pit bull” mentality it takes to fight the insurance companies. Will Marcia help Alena handle her medical issues on her own, or will she continue to use it as a way to keep her daughter close?
Finding Mr. Not So Big
Alena has never really had a boyfriend, and she is dying to meet someone. She is finding that dating with a disability is hard. Plus, Alena has set some very high standards. Alena doesn’t want someone too big that will physically overtake her, but she’s also attracted to average sized men. How will Marcia help her daughter find someone?
Running around the coffee table - Initially devised as a strategy Marcia used to keep Alena active as a child, every morning Marcia chases Alena around the coffee table.
Kissing her medicine - When Alena was a child, Marcia would throw a big celebration every time she completed a treatment. Marcia would have a cake, balloons, and presents. Now that Alena is an adult, she has scaled down but the duo still pays tribute to the medicine that saved Alena’s life by kissing it and thanking God before her weekly treatments.
Outfit selection - Even when Alena is not home with her mother, she can’t get dressed without having her mother’s approval every morning.
Driving together - Alena doesn’t have a car, so her mother takes her everywhere. Marcia knows that it is their way of spending more time together and she suspects that Alena is dragging her feet about getting her own car to keep this ritual going.
Role Playing - Marcia developed a strategy to help her daughter cope with the stressors of life, whenever Alena was going through a difficult time Marcia and Alena would role play the situation so that Alena could practice how to handle anything that came her way.