The Dance

February 13, 2020

The Dance

As a parent of a child with special needs, caregiver is a term/label/hat that I wear every day.

The distinction that I’m making is that I am in fact helping Summer do daily tasks - which her neurotypical peers can do on their own. For example, I help her brush her teeth, give her baths, wash her hair, cut her nails and change her.

Some days I want to be Nicole and a Mom. I don’t always feel like being a caregiver. I simply want to be Summer’s Mom, and thus the dance begins.

I love Summer and want what’s best for her. But the bigger question is how am I measuring what’s best for Summer? Am I letting society dictate or am I listening to what I actually need?

Where is the line in the sand that lets me know when I’m being Summer’s Mom or her caregiver? I had never really thought about this until recently. I was having a conversation with another caregiver and sharing some new soothing activities that I had implemented to redirect Summer when she was upset.

I was proud that I had finally learned to control my reaction, manage my emotions and hold Summer and hug her while she released all of the negative energy and moved into calmness.

Right after I had shared this, my friend - and fellow caregiver - asked whether I could do that as Summer’s Mom and not as her caregiver.

What!? Wow - I had never even considered that! I had always blurred the lines between being Summer’s Mom and her caregiver. Sadly, I feel like her caregiver more often than her Mom.

When she’s having a tantrum, and I hold her and hug her to help calm her down, I’m in caregiver mode.

What would it look like if I held her as her Mom to comfort her? It's such a thin line. It’s such a delicate dance.

At the beginning, I wanted so badly to only be her Mom……but she needed me, and continues to need me to be so much more.

Her caregiver, her advocate, her voice…..

It’s now 2020 and I’m 46 years old. I now find myself making life decisions which require me to take off my caregiver hat. I’m learning that I am still first and foremost Nicole - a women with hopes and dreams.

How does one learn this dance? There are so many hats which I wear.

When I have spent the last 10 years making most life decisions using my caregiver hat, it feels unnatural to focus on my own wants and needs.

This caregiver is feeling tired. And I recognize the need to start putting myself first. I know that my life as a caregiver is a marathon and therefore, I must train for the long game.

I’m giving myself permission to make decisions that are best for me. I know that when I’m content, I’ll be the best mother, caregiver and version of myself.

Can you relate?





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