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4 years ago, I wrote a post called The Choice to Suffer.

walkwithmeIn it, I was talking about how caring for an elderly man in the advanced stages of Alzheimer’s helped me to heal. I was about as wounded as a soul can get when I met him, and he taught me how to hold hands from a trusting space again.

In that same post, I talk about my thoughts on Moxie, and I quote myself here:

  I like to think that she’s a maverick spirit that wanted to enter this world and experience it from a different perspective. I like to think that she’s pushing me to understand unconditional love. This little girl will never fit into a box; any box. The very nature of Down syndrome means that you don’t know what is going to happen. I need to love her as she is. In this very moment. With the future as it unfolds, however that may be.

Time lends clarity like nothing else can.

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4 years later and re-reading this particular post, I find that two pieces have crystallized for me:

One, the truth that by being still inside myself and allowing an energy to flow, I was ostensibly “helping” an old man in the final months of his life, but I was really gaining everything that I spiritually needed at the time, from him.

An old man who had a disease that robbed him of his words, his recognition of his wife and children, who needed help to eat and toilet – this man helped me move back to a space in which I was capable of opening up to people again.

And two, the truth that my child is a maverick spirit that I can learn from.

My child is like Ed, the old man that was dying of Alzheimer’s. Like most children (typically developing or not), she is ready and able to teach me everything that I need, spiritually speaking. When I am still inside and look into her eyes, I can see that, I can hear that:

Walk with me

It’s about turning around to be with her. To match my stride to hers. It’s not about my throwing a rope to Moxie and saying, “here! I’ll pull you to where I am!” – it’s not about trying to change Moxie so that she becomes less like a person with Down syndrome and more like a person without.

It’s not about suppressing her gifts or expressions of herself. It’s not about therapy and therapizing this maverick spirit; it’s about walking with her. It’s about looking at her. Listening to her, really listening to her, listening to her from a place where there may be no words, just as I listened to Ed so many years ago, just as Ed taught me so much when he had no words left.

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  1. This post made me cry. This is how I feel about my hearing impaired girls. Thank you for sharing and choosing to express such amazing sentiment publically. all the best

    1. thank you, too.
      it makes me tear up thinking that you feel that way about your daughters, especially because I am the same as them. xoxox

    2. I am looking for a closed caption phonep

      1. closed captioning phone? Have you tried Hamilton CapTel? There is also the Purple Voice Relay…

  2. What a beatiful little angel you have! You too are a beautiful soul and great spirit! I can’t wait to meet you and yours! I am Kaden, Hunter and Makenzies mom, Dottie. We hope to see you back in the valley soon! Take care, much Love.

  3. I’m really not sure how you put all this together SO nicely. Your thoughts are deep and wide and your photos are artsy and amazing. How do you capture the time to do all this plus raise those lovely children, and navigate your way through foreign lands?

    I’m sure your husband gives you a lot of support, but really you only sleep a couple of hours at night and owl-it, right?

    1. Oh, Josie!! *big hug*
      I do most of my writing/photo editing while we drive. On the Lost Coast though, I wake up before the kids (usually around 4 or 5am) and write/edit. Before I had kids, I painted, but I can’t do that easily with the kids, so I just do what I can to keep it balanced in my heart/mind.
      Love to you all

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