Caregiver Advocacy: Advocating for Ourselves

November 30, 2021

A square with the words

There’s something about motherhood that changed me. My heart would never be the same — because for the first time, I felt the magic of unconditional love.

My firstborn was a boy and then I had a baby girl. Isn’t it fascinating that we don’t consider the magic of the body when children are developing as they should and hitting all of their milestones?

For example, my son started crawling and I never questioned it.I simply cheered to myself that he had hit the first of many milestones...crawl, cruise, walk.

At no time did I realize that crawl plays such an important step in the development of a child — it helps strengthen the muscles in the hands, which then allows a child to develop a pincer grip and pick things up; and it activates the brain so that the right side and left side are coordinated.

This all happened naturally and I was none the wiser. 

That was, until I had my second child. My daughter would require more of me as she had global development delay (fine motor, gross motor and speech delays).

From the beginning, I’ve spoken on my daughter’s behalf at all of the therapy sessions and medical appointments. Looking back, I realize that I was able, slowly, to learn how to advocate for my daughter, Summer, in ways that I was unable to advocate for myself.

Over time, Summer's voice helped me to find my own voice.

With this new-found voice, I started to advocate for myself. What a muscle to discover and build.

This little voice started as a small whisper, and it asked questions like, “are you happy?” I didn’t like the answer that I had to that question, so I ignored the small whisper. I mean, my goodness, I was a caregiver — was I really supposed to be happy?

That concept at the time seemed outrageous given that I was still living in denial of all emotions and the reality that my mother-daughter relationship would be very different than how I imagined it. I was living in denial as I felt paralyzed with fear - fear for the present and fear for the future. How would my non-verbal baby girl fare in this world?

Fear is simply an illusion. Life was going to continue whether or not I had fear. My daughter would progress at her own pace whether or not I had fear. Living a life without fear certainly seemed more enticing and helped me to sleep better at night.

I was able to move away from feelings of fear by starting to focus on how I wanted to feel. I wanted to feel joy again - even if it was only for a moment. That’s how my path to finding daily moments of joy started. Turning towards the light so that the darkness isn’t so all-consuming.

I define self-care as any activity that brings us joy. Learning to put ourselves first is the foundation for self-care.I believe that self-care is one way in which we can advocate for ourselves.

As a self-care advocate and coach, I see that there are many parallels to advocating for our loved ones:

  • Setting boundaries
  • Speaking our truth
  • Keeping it simple

I invite all family caregivers to find that muscle that allows us to start advocating for ourselves. It may feel awkward at first, but stick with it and you’ll be pleasantly surprised by the benefits of self-care.





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