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Why Every Day Is National Siblings Day as I Care for My Sister With a Disability

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National Siblings Day. The posts start popping up all over Facebook and Instagram and I smile at each one, but I can’t help thinking that every day is National Siblings Day at my house.

Six years ago last month, my sister Wendy moved in with me and my family and she has lived with us ever since. Wendy is 47 years old, deaf and has intellectual delays. We knew that someday I’d be her legal guardian, but what that would look like and when it would happen were big unknowns. It was always on my mind, sometimes weighing heavily and other times just a faraway thought, something that would probably happen far in the future. Then our 73-year-old father had a heart attack with no warning and someday was now, immediately. No more time for faraway thoughts.

Wendy moved in. We had a long adjustment period. We did our best to help her understand what happened to our dad. We all (including our three kids) loved her with all our might and made her feel welcome and happy in her new home. We built a new house with room for her. I learned to understand her benefits, her day program, the resources available to her. I met with her doctors and, in some cases, found new ones. The list of things we had to learn about and navigate felt endless (and is still ongoing six years later because her needs are always evolving).

The relationships between siblings when one has a disability are definitely unique. I belong to an amazing group on Facebook just for people like me and the stories range from total acceptance and unconditional love to those who lived in fear of a violent sibling or felt invisible because of the needs of their sibling as they were growing up.

Growing up with Wendy was certainly full of both joys and challenges. I wanted my little sister, only two years younger than me, to play with me and do the things I liked to do. I wanted to be able to communicate with her. I grew up learning sign language and what seizures were and what it was like to have a sister you adored who was away at a special school a lot of the time. I’ve experienced her violent behavior during temper tantrums. I’ve sat with her, holding her hand on my throat, and tried to teach her to say words.

I’ve watched my parents start support groups and put on puppet shows at schools to teach kids about people with disabilities and fight tooth and nail to get her into the best programs to meet her needs. I’ve watched medication changes allow her to not have a seizure for over 30 years and other changes turn her into someone I barely recognized. I’ve attended her school dances and was her Girl Scout leader when I was in college. I’ve watched her teach my children about patience and compassion and finding humor and joy in the little moments.

Sibling connections are not just the ones you grow up with. About 10 times a day, Wendy calls my husband Steve her “brother,” and she adores him. Every morning before he takes his shower, he makes sure she’s awake and getting ready for her day program. He goofs around with her and makes her laugh. She runs to hug him when he gets home from work. This man who did not grow up with a sibling with a disability, or even around many people with disabilities, has fully embraced this sometimes wild life we live with Wendy, and he adores his “sister.”

Our days are full — of reminders and encouragement to “hurry up” and checking medications and scheduling appointments and supervising morning and bedtime routines and answering the same question 20 times in a row. But they are also full of silly inside jokes and belly laughs and hilarious notes from Wendy and endless hugs and high fives and, many times a day, being called her “favorite” (admittedly a title she gives to several people she loves). Some days we collapse into bed and wish for more strength the next day. Many days our sibling relationship feels a lot more like parent and child. But most of our days are just full of love.

This road of living with and caring for an adult sibling is not for everyone, and there’s no one “right way” to walk this path I’ve been on since the day Wendy was born. Sometimes I’m tired. Sometimes we need a break to recharge. Sometimes I worry about the future. But without question, I’m so glad Wendy is my sister every single day.

Originally published: April 10, 2019
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