Lani Holmberg: And Holland Has Tulips examines a family's strength during a challenging time (PHOTOS).

What It’s Like to Have Down Syndrome—and Care for a Sister With Disabilities

What It’s Like to Have Down Syndrome—and Care for a Sister With Disabilities

Behold
The Photo Blog
April 23 2015 12:42 PM

What It’s Like to Have Down Syndrome—and Care for a Sister With Disabilities

group
Alyssa (standing) lives at home with her mother, Lois, and sister, Carly (seated). The three of them moved into the house when Alyssa’s parents separated.

Lani Holmberg

Growing up, Lani Holmberg rarely interacted with a boy in her town who had Down Syndrome, and, when she did, the uncertainty of how to communicate with him proved to be too strong of a barrier. This experience stayed with Holmberg into adulthood. She was interested in challenging her own discomfort and was reminded by her aunt that she has a distant cousin, Alyssa, who has Down Syndrome. She contacted Alyssa’s family and ended up spending six months documenting their lives for the multimedia series “And Holland Has Tulips.”

Alyssa lives with her mother, Lois, and one of her two sisters, Carly. From the beginning of the project, Holmberg followed the rituals of the people living in the house: daily chores, Alyssa’s work at Kmart, and social events. Although Holmberg writes on her website that she isn’t a fan of routine, witnessing it helped her to better understand Alyssa.

“Photography is my way of seeking wisdom,” she said. “I meet all of these people and get insight into how to approach life and what lessons they’ve learned and I incorporate that into my own life. The camera is an excuse to open myself up and keep improving and opening up my mind.”

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While the initial focus was to portray Alyssa as just another member of her family, the project changed slightly when Carly began to lose neurological ability. Although Carly’s condition is still undiagnosed, Lois needed to continue to work in order to keep everyone under the same roof. As a result, Alyssa became one of Carly’s primary caregivers.

“I wanted them to get to know Alyssa as a person,” Holmberg said. “You start by thinking she’s the person with Down Syndrome and then you realize in her family she has a caring role. … I wanted that part to come in later to surprise people and to get them to reflect on what they thought she would be capable of. … I suppose that reflects my journey with her too and knowing only a little about her and getting to know her strengths; I wanted the audience to go through that too.”

morning
The predictability of Alyssa’s schedule may feel suffocating for some, but there is a comfort in it for her. Every day the alarm goes off at the same time.

Lani Holmberg

iron
When Alyssa first started helping with the ironing, she had the temperature so low the clothes remained wrinkled. These days she’s more confident with the hot iron.

Lani Holmberg

blowdry
Alyssa dries Carly’s hair with the hair dryer after breakfast. She’s gentle but firm with Carly, insisting she chew her food and that she try to communicate.

Lani Holmberg

cinema
Alyssa lets out a sob while watching If I Stay in the cinema.

Lani Holmberg

By using photography and video, Holmberg was able to show not only the amount of physical help Alyssa provided but also the emotional help. When it came time to edit the work, the initial idea was to group the project into distinct categories: resilience, struggle, joy, etc. Instead, Holbrook focused more on a linear model, not only because she has a Web usability background and wanted to keep the readers interested, but also because it provided a link to show exactly how “normal” the familial responsibilities were.

Once the project was finished, Holmberg was nervous to show the family her work.

pair
Left: Alyssa washes the dishes once Carly is sleeping so there is less for her mother to do when she gets home. Right: A one-eyed Geelong Football Club supporter, Alyssa spends cold Friday nights at the games each winter. She has a permanent seat at the ground where she yells at the players, identifying them by name and handsomeness.

Lani Holmberg

lois
On Fridays, Lois is home with Carly while Alyssa goes to work at the local hairdresser.

Lani Holmberg

“They hadn’t seen my thoughts, and there is some honest stuff there, and I read it through to them and stopped to explain it. … It was a very emotional day with a lot of tears. I also had a couple of difficult conversations with Alyssa, telling her to her face I had underestimated her and that she had surprised me. I was blown away by her ability to say ‘I understand what you’re saying and I do understand people see Down Syndrome differently, but I’m a real person with real feelings.’ ”

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“I still get emotional talking about it. For them to be happy with it was very important to me and I saw it as a collaboration rather than doing it on my own.”

sister
Alyssa slowly moves Carly into bed. Because of Carly’s stiffness, Alyssa has to rock her slowly from one foot to the other until she is close enough to lower her into bed.

Lani Holmberg

kmart
Alyssa sits on the bus to work. She’s a fitting room assistant at Kmart. On the way to work I told Alyssa about a date I went on. The long wait for a follow-up text message suggested there wouldn’t be a second. I guess I wanted to laugh with her about it. “At least you go on dates,” she replied.

Lani Holmberg

hands
Alyssa is a very tactile person, always reaching her hand to touch as she speaks. When she speaks to Carly she leans right in close and looks her in the eye, speaking slowly and calmly.

Lani Holmberg

church
Alyssa finds a quiet moment during play group to soak up the morning sun streaming through the church window. Every Monday morning she volunteers with the play group. She loves children and hopes to have a family of her own one day.

Lani Holmberg

Previously on Behold:

David Rosenberg is the editor of Slate’s Behold blog. He has worked as a photo editor for 15 years and is a tennis junkie. Follow him on Twitter.