May 23, 2023

Finding Shared Understanding: Care for the Caregiver Retreat 2023

A few weeks ago, I had the incredible opportunity to attend the Care for the Caregiver Retreat in Minnesota, put on by the More Than a Project and Finding Cooper’s Voice. It’s hard to put into words the sense of camaraderie and love I experienced during that time.

When my son was diagnosed with Autism Spectrum Disorder three and a half years ago, I withdrew into myself. Even before the diagnosis, our family had become isolated. Going out in public became a challenge as I couldn’t bear the judgmental stares and comments when my son struggled.

I became defensive and fiercely protective. I wanted to face his diagnosis head-on and do things our own way. Little did I know how lonely I would become.

While my friends and family tried their best to understand, I found myself constantly explaining and justifying our situation, which I grew to hate.

One day, I decided to take a chance and connect with other moms on the Finding Cooper’s Voice supporter page, Coops Troop. It was the year 2020, and Zoom became our meeting place.

I joined calls with people who truly understood – they understood my life and my son without me having to explain it all over again.

As I shared our journey, others nodded in understanding. There was no need for questioning or confusion. They simply got it.

Over the past two years, I have had the privilege of meeting many of these fellow caretakers in person during my trips to Minnesota. Any initial awkwardness of meeting someone for the first time faded away within minutes. We formed an immediate bond, and through these connections, I have found lifelong friends.

We sat together learned, laughed and cried as amazing speakers filled our souls. We ate together, sat together and danced one of the nights away. Memories I will forever cherish.

If you are feeling the crushing weight of loneliness, I strongly encourage you to seek out people who understand.

No one will ever fully comprehend the entirety of my life and journey, but there are individuals out there who grasp the fragments. They understand the struggles and loneliness that come with being a caregiver.

Below is a little something I wrote on the plane ride home:

She is The Caregiver

She may be a mother, a daughter, a grandmother, a sister or a friend.

She is the driver, the nurse, the shopper, the worrier,

She gives all she can, takes only consequences, never glory.

She is the caretaker, whether by choice or by fate,

She treads on, forgetting herself, making another’s life whole as it can be.

She’s not alone, but has no time to feel a part of something,

Those like her don’t have the time, they don’t get the chance to belong.

They sacrifice without thought, with only love in their hearts,

Standing in the back, watching and waiting, playing their part.

When isolation, worry, and fear become too much to bear,

They may cry out for help, to a world that doesn’t seem to care.

Some call them martyrs, attention seekers, and more,

But if only they knew what these caretakers go through, what those others ignore.

They have seen every hour of the night, over and over again,

Yesterday has regrets, today is survival, and tomorrow is feared.

They are always aware, seeing every stare, others’ judgments and disdain,

The ones making countless decisions, all critiqued, every step is in vain.

They deserve a moment to breathe, to be free from the burden they carry,

They deserve to live. To thrive. To be.

Don’t forget them, for they are the caretakers, the unsung heroes of life,

Without them, the world would be lost.

They are the caregivers.

To join Coop’s Troops and attend future events like this one, click here.

Jaime Ramos

Jaime Ramos, is a wife and mom from Colorado. She's married to her best friend, Isaac, and they have two kids. Her oldest is seven and autistic. She mainly writes about her a-typical parenting journey. Jaime is a blogger at Jaime Ramos Writes and co-host on the Talk Like a Mother: Parenting Autism Podcast. She wants to spread the word that spreading love and awareness is key to acceptance.