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The Nights I Wonder About My Medically Complex Child's 'Complex' Emotions

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“Complex” is a word I’m very familiar with when it comes to my daughter. “Complex medical needs” is typically one of the first descriptors when it comes to her condition. Her body, down to her genetic makeup is complex — each organ just a bit different from the “norm,” resulting in issues with her brain, heart, kidneys and bladder. Each illness she tackles is off the beaten path… complex. So complex that I feel that I’ve spent the majority of the last five years of my life explaining her complexity. But one thing that I usually round out my complexity discussion with is, “But E is easy. She keeps it simple: ‘Puffin Rock,’ ‘Daniel Tiger,’ music and food. She is sunshine incarnate.” I can sum E herself up in three sentences.

But should I?

E has been having more night wakings, but she’s doesn’t cry or scream. She just lays in her bed, shifting around and “talking” to herself (it’s interesting how nonverbal communicators can “talk” so much). We typically check the monitor, laugh a bit, roll our eyes, and try to sleep while she entertains herself, as she usually finds sleep again. But lately, I have been laying awake listening to her, and for the first time in five years I was struck with something: what is going on in her brain?

Is she lonely? Did she have a good dream? A bad dream? Is she anxious? Is she thirsty? Is she excited about her day? Is she scared of the dark?

For the first time in five years… I allowed E herself to be complex.

A medically complex little girl with complex feelings.

Do you know how hard that is to face head on as her Mama? To think that her basic expressions of emotions (happy, sad, mad) are not all she feels? To think that she could be lonely, or anxious, or frustrated, or embarrassed, or jealous, or proud, or disgusted, or elated? To acknowledge that her loves of the world may expand past “Daniel Tiger” and food?

Reflectively, I can attach different experiences where I feel that she has shown complex emotions. But I cannot stay in that reflection, because I feel I do not know how to accept that she could feel as deeply as I do. I am a deeply emotional person. I am reflective, poignant, and emotionally complex. I go to counseling, I sing songs to work through my trauma, and I talk about my feelings constantly. I write and I process and I speak and I communicate and I think and I do the hard work on myself to help me through all of my very complex human emotions. I have a huge toolbox at my disposal to help me.

E does not have much of a toolbox. I do not know how she processes. I do not know how to help her. E’s life renders me helpless more often than not. I’m not sure I can handle another thing that I am helpless to help E.

So I lie awake and listen. Sometimes if she doesn’t settle, I will go and lie with her. I rub her back and snuggle her and whisper stories to her.

When we are going throughout our day and she becomes quiet and observant. I always make an attempt to reach out to her, a brush of her hair, touch of her cheek, holding her hand. All of this so that if she is melancholy or exhilarated or disappointed or elated, she at least knows she’s not alone as she faces the complexities of herself and the world.

I figure, that’s all every single human, with every single one of their complex human emotions needs: to know they’re not alone.

Originally published: May 11, 2020
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