My Mother’s Keeper

For me, the term “home” has never been a time or place. It’s never been hidden beneath the wooden stilts that faithfully support the foundation of my childhood home. It’s not confined within my fondest memories or preserved inside of the fascinating adventures that surround the depths of my deepest dreams.

Home is a place that – over time – I’ve made for myself inside of the people I love the most.

Like a dove who toils day and night, gathering twigs and feathers to form a nest for her fragile eggs, I gradually laid the foundation of my sanctuaries within those who made me feel safe. I am flawed, however, and the eggs that I bore were so delicate that they would rupture under the slightest amount of pressure that established its intrusion in the form of neglect.

One day, I awoke with a heavy feeling in my stomach. I was in my own bed, in my own house, fully aware that my sister was sleeping beside me, that my mother was in the next room. But within the blink of an eye, my unease had its name: Homesick.

My childhood was short-lived, and I was thrown into adulthood much too early in life. Although others always seemed to label me as “mature,” I’ve always felt like a scared, small child.

There were days, many years ago, that I would wrap my tiny fingers around my mother’s sturdy hand, trusting her with my whole heart and soul. She was my first nest, and when I felt afraid and alone, I would nuzzle my head into her chest so that I could hear her heartbeat and try to make it match up with mine.

Her imperfections that weighed heavy on my heart never altered my need for her love. Though she unknowingly shattered every last one of my eggs, my nest remained secure. She was my first home, and I left much too soon.

Since then, I have always been homesick.

I turned 16 and they began calling me a woman.

I turned 18 with nests full of broken eggs, and they began calling me sad.

I turned 21. I tested positive for Huntington’s Disease because my mother refused to. They started shaking their heads and calling me a pity.

I turned 22. I was putting myself through school, working full-time, and paying my own bills. They all pointed their fingers and claimed that I was “lagging,” and “behind.” I should have graduated already. I shouldn’t still have two years of school in front of me.

Now, I am 24. I’m still in school. I’m in mountains of debt. I take a considerate amount of pills to manage my mental illnesses. They stare at my chewed-up lips and the blood around my nails, the scars that run up and down my arms, and the beads of sweat that trickle down my forehead despite the cold, still claiming that medication is just a make-believe medical manipulation. They say that I am weak because of my dependence. They call me deprived.

Twenty-four years old. I’ve always had to hold my own. The importance of other people’s perception has always been one of the core values that I was raised on. For years, my narcissism easily allowed me to put the needs of my family on the backburner so that I could feel good about how society perceived me. I am embarrassed to admit I was ashamed of my family. No, not of my family…of what Huntington’s Disease was turning their lives into.

So I got a new car. A nice apartment. I took expensive classes at a university.

For years, I kept my distance. I was full of disassociation. Distance. Disdain.

But I was never home, and I was always homesick. And my home was fading away while I was busy investing my worth within hollow material.

“No more,” I whispered to myself. No more. NO. MORE.

Huntington’s Disease has always been a sort of taboo within our household. No one liked to acknowledge it, and my mom always insisted that she was “fine.”

And for a while, I decided that I would rather have a mother who was blissfully ignorant to her own fatal illness than a mother who accepted her fate – full of sorrow and despair.

But my eyes have recently been forced open to face a sharp reality: The state of someone’s mind – or what they choose to believe – does not hinder the fact that HD will still cause them to disintegrate, both mentally and physically.

So I came home. I ran home, shedding away layers and layers of lies I’d been telling myself so that I could never be held responsible for my swelled-up pride.

I swung open the door to our little home, and the look I saw behind my mama’s eyes forced me to come alive.

I recognized the look right away. It was the same look I used to give my mom when I was a child: I wanted something, I whined for it, clawing at my mom’s sleeves in desperation. But I didn’t know what I wanted. I just knew that my mama could make me feel better.

She ran into my old bedroom, sobbing uncontrollably. She kept yelling, “I just want my brain to feel normal! I just want my mind to feel right!

Different members of our family shuffled in and out of the room, trying to fulfill a heart that was in need of something that it didn’t know. It didn’t know because it was gone.

That’s how this disease works. It eats away at your mind. It causes you to forget.

In that moment, I knew that I had to make room for my mama to build her nest inside of me. I was the only one who was able to fully empathize…because the same disease that was stealing my mama’s happiness was alive in my mind, too.

I made a bed for her on the floor, and she sat under propped-up pillows as I read from a new fairytale book she had given me for Christmas. Her eyes widened with drying tears as nostalgia came rushing into the room with each word I read. We laughed at the silly stories, and I caressed her face that lay on my chest. I wondered if she was trying to make her heartbeat match up with mine.

We lay on the floor for the rest of the afternoon, picking out movies that were sure to make us laugh. She grasped my hand the entire time, and I noticed that my palm had grown larger than hers.

Suddenly, a new, familiar look began emerging behind sparkling, green eyes.

Mama was building her nest.

Yesterday, I was a daughter; a student; an independent, young woman.

Today, I am a creation of much more importance.

I am My Mother’s Keeper.

A Scene From Our Little Safe Haven


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