August 10 2025
(Photo by Thomas Grams on Unsplash)
The house was empty when I left for my college class. The silence a welcome reminder that I get respite for a few days. I used to feel guilty about relishing time away from my adult disabled daughter. She doesn’t need as much help as she did at a younger age. But I remain unable to fully relax, to concentrate when she’s around.
Most people my age only case manage their own life, maybe their pet’s life, too. I case manage two people’s lives. I make phone calls on her behalf, set appointments, manage her money, help her grocery shop, help her clean and organize, drive her to appointments, and I take care of small maintenance issues. I am her personal nurse. I’m her handyman, I unclog the toilet, unclog the shower drain, put together new furnishings, and open containers she cannot. Just today I installed a new shower head for her, and in the past, a new toilet seat.
I am her companion. She has no local friends. All of her friends are through The Chromosome 18 Registry & Research Society. She’s met them throughout the years as we have attended the family conference every year since 2009. She and her friends communicate throughout the year using messaging and social media. But, locally, I am the one she turns to for entertainment, to complain, to be silly with, and, sometimes, to annoy.
I used to be ashamed to share with others that the sound of her voice has the power to make me jump. When she begins to speak, I dread what she’s about to say. Now listen. I love this child of mine. We’ve been together for nearly 24 years, and counting. But that’s also why my muscles instinctively become tense when she enters the room. Doubly so when so speaks.
On the flip side, she’s a lot of fun to be around. She knows facts and details about topics I don’t. She’s into the sky, clouds, and flowers as much as I am. She enjoys talking photos of these beautiful features of nature, just like me. She is a pro at spotting shadows made by our household items. She spots them on the ceiling, in the corners, on surfaces. She loves tracking the weather, and keeping me informed of upcoming storms, heat waves, and cold fronts.
Things could change, but as it stands she and I will be roommates until I exhale my last breath. Who knows what the future holds? That may not be the case. She’s currently unhealthy and has been since about 2021 or 2022. During that time and now, she has a pretty shitty quality of life. In between my own periodic health issues, I have been working with doctors and specialists to determine a diagnosis; which will lead to knowing how to treat her. I’m hopeful that we are finally getting close to answers.
When I arrive home after classes, the house will be silent. I will relax into the luxury of knowing that I temporarily live alone. It will remain quiet. I will not have to do anything for anyone. I’m free. For a few days anyway.
This writing grew from a simple paragraph written in my creative writing class during 2025 Spring Semester. I then turned it into a poem to share at Monday Night Poetry.
Emptiness
I scan the living room
The house is empty
Spreading my arms wide
I fall into the emptiness
Allowing it to swallow me
I fall deeper into the empty embrace
Until we are one
The silence
a welcome reminder
It’s just me
I am alone
I’m one of those people
Who loves silence
A Silence that
serenades
soothes
And settles
The silence soaks
Into my skin
Settling into my nerves
The silence
Becomes the balm
soothing tight muscles
I used to feel guilty about savoring
time away from my disabled daughter
I remain unable to fully relax
to concentrate when she’s around
the sound of her voice
has the power to make me jump
Like the school child who doesn’t
Want to be called on
When she begins to speak
I don’t want to raise my hand to answer
But I’m the only one in the classroom
See, it goes like this:
There’s the trying to decipher what she’s even saying
She may be complaining, complaining, complaining
And There’s the trying to decipher what she’s even saying
She may be asking for my help, interrupting my flow
And There’s the trying to decipher what she’s even saying
She may be wanting to share something fun or useful
Things could change
but as it stands
she and I are forever attached
An umbilical cord someone forgot to cut
Forever roommates
until I exhale my last breath
Who knows what the future holds?
That may not be the case.
Yet, this is a reality for myself
and many like me
Being a parent to a person with a disability
Joyful, love-filled, enlightening
Mysterious, eerie, uncanny
Sad, maddening, exhausting ….
Camilla Downs, age 28.
She was flying to Holland
But didn’t make it
There was a detour
Through the …. twilight zone
the house is silent
I relax into the luxury of knowing
I temporarily live alone
it will remain quiet
I will not have to do anything for anyone
I will allow the emptiness
To render me unconscious
I will allow the emptiness
To erase responsibilities
From the discourse of my brain
I am free
I am free
I am free
For a few days anyway
2025, Camilla Downs
I love and adore this child of mine. I am not complaining, I am sharing. Writing about my experience is therapeutic, it’s how I sing the song of my life. I hope you find meaning in the melody of my sharing.
I kindly ask that if you feel sympathy after reading my writing, please keep that to yourself. There’s nothing I despise more than folks coming away from my writings sharing sympathy with me about my life. I do not feel sorry for myself (occasionally we all do, don’t we?). I love my life. It is not my intention to invite sympathy from others with my writings. My intention is to educate, inspire, and to empower critical thinking skills. Most importantly, I write for myself, above all else.
I take care of my mental health by regularly seeing a therapist. I write. I go for walks, and I take nature photographs.
Lillian has a rare genetic condition called 18p-; which means she is missing the short arm of chromosome number 18 (each chromosome has a short arm and a long arm). This happens in about 1 in 55,000 births. She also has Level 2 Autism and a speech impediment.
When Lillian’s younger sibling left for college, I decided to return to college. I already had a 2 year paralegal degree. I’ve returned to obtain a degree in creative writing and social justice. I’ll graduate in spring of 2026 and plan to apply to the MFA program. Most likely in creative non-fiction.
(Team TLC (me, Lillian, and Thomas) with my mom and step-dad – April 2025)
To learn more about Chromosome 18 disabilities: https://www.chromosome18.org/
