My Caregivers Are My Second Family

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by Brianna Albers |

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balance, normal, resisting, intersectional disability advocacy, self image

I feel like it’s been forever since I last wrote one of these things. It may be because between the holidays, the start of a new month, year, and decade, and school (which is frankly turning out to be the semester from hell), I feel a little bit like Niles Crane, setting couches on fire and fainting at the sight of blood.

All this to say: Hey, hi, hello! How’s 2020 treating you so far? Have you stuck to your New Year’s resolutions? I can say as someone who has very nearly graduated with her M.A. in community care that most people haven’t, so it’s fine if you’ve given up on resolutions or, like me, have resolved to be kinder to yourself when it comes to failing them.

I had all sorts of column ideas going into 2020. I could write about finishing Accutane (so far, so good), or completing the first draft of my book (hallelujah, praise the Lord), or the holidays (perfectly uneventful). But Halsey Blocher’s latest column got me thinking about caregivers and the intricate little families we form.

A week ago, my caregiver, Danielle, stopped by. She gave birth to a beautiful baby girl, Ada, on Jan. 1 and has been on maternity leave. Her eldest daughter, Elena, has been dying to show me “her baby,” and we finally managed to lock down a date and time.

During their visit, Elena was the ideal big sister. Whenever Ada started to cry, Elena would shush her, stroke her brow, or say, “It’s OK, sweetheart.” But she was also the girl I know and love. Once she felt that we’d appropriately admired her little sister, she dragged me to my room so we could play. At one point, without provocation, she put her hand on my knee and said, “I know you missed me.”

In a provincial twist of events, my very first caregiver, Katelyn, has returned to work. Around the time Danielle was prepping for maternity leave, Katelyn texted me and asked if we had hours available. I said, “Yes,” with many, many exclamation points because Katelyn is part of the Albers family. She has been for years. We supported her decision to go to grad school, but we missed her every stinking day.

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Katelyn and Brianna, circa 2015. (Courtesy of Brianna Albers)

Having her back, even if it’s only for a little while, is like going back in time. Katelyn was here during the bad years. The depression years. The “I know things happened in 2015 but I cannot remember them for the life of me” years. Things have changed for the better, but in certain ways, it’s like no time has passed. We talk so much we lose track of time. Dad and Katelyn trade barbs in the kitchen. I wear the same clothes over and over again. The only difference is that instead of complaining about boys or parents or whatever annoyed us back then, we discuss mental health.

Coincidentally, both of us ended up in the counseling field. Terms such as “prevalence” and “borderline personality disorder” and “acceptance and commitment therapy” pepper our conversations nowadays. God even knows what we talked about in 2015. Presidential elections?

Danielle held Ada in her arms. Elena sat on my footrest, elbows propped on my knees, and Katelyn looked on. Even my mom was present — she had MLK Day off work. I was surrounded by women I love. And I felt, keenly, a sense of belonging, like I do every time I’m with someone important to me.

Next Friday, I’ll stand next to Katelyn as she marries the love of her life. Sometime next month, I’ll take Elena to Build-A-Bear as a belated Christmas present. Later this year, when I attend the Cure SMA Conference in Orlando, Florida, I’ll keep an eye out for gifts, not because I support Disney’s corporate takeover, but because I have so many little girls to shop for now — Elena and Ada and Katelyn’s daughter, Ellie.

These women fill my life with love. My days are composed of laughter and, depending on how awake I am in the morning, well-timed silence. Elena holds my hand. Danielle brushes the hair out of my eyes, keeps my blanket from dragging across the floor. Katelyn keeps my dad in check (no one else will), and Ellie looks up at me with her blue eyes and chubby cheeks.

They are my family, just like my mom and dad, the family cat, our dog loping through the snow in our backyard. It’s no surprise that people mistake Katelyn and me for sisters.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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