A Day in Her Life

Around the clock

Years of seizures, at the frequency and force Brinlee lives with, have taken a toll on her brain. She has slowly regressed from the abilities of a five or six year old back to those of a one year old. Like a baby, she can no longer tell us what she wants or needs, so we spend our days reading her, guessing, and trying again until we get it right.

That means her whole day is in our hands. She's in a diaper. We feed her and help her drink. We dress her, bathe her, and shower her. Her eating, nutrition, health, hygiene, comfort, safety, and even her entertainment are all completely on us, and she cannot be left alone. Most of her seizures come at night, so Katrina and I take turns watching over her while she sleeps. Roughly every two weeks, a seizure comes during the day to keep us on our toes. We have learned to live in a permanent state of alert.

Her care can't be handed off casually. It takes someone who is truly in it every single day, who knows her ins and outs: the warning signs, the routines, the small things that keep her safe.

For years, that watch was ours alone. In the years since, we've opened up and have been fortunate to have a village around us, people who step in and help where they can. But there's a limit to what anyone can carry. Brinlee's care, in its most basic form, takes strength, flexibility, mobility, energy, patience and time. The help our village gives is impactful and deeply appreciated, but the weight is still heavy.

One of our villagers changed everything at just the right moment: an unrelated hardship brought Brinlee's grandmother, Vava, to live near us, and it was a lifeline at exactly the moment we needed one. Vava watched Brinlee every day for a long time, but after multiple back surgeries she can no longer help the way she once could, or the way Brinlee now needs. That is no reflection on her will, her heart, or her love for Brinlee; it is only the toll that time takes on us all. The two of us remain on watch, around the clock, trading sleep so the other can stand guard. And one day we'll be caring for Vava in the same way she cared for Brinlee.

Meet Alexi, her sister →