Parenting a Medically Complex Child with Complex Feelings
BY GUEST BLOGGER, BRITTANY GUMMERE
“Complex” is a word I’m very familiar with when it comes to my five-year-old daughter. She lives with Phelan-McDermid Syndrome and a 7q Duplication, and “complex medical needs” is typically one her first descriptors. Her body, down to her genetic makeup, is complex. Each organ just a bit different from the norm. Each illness off the beaten path… Complex.
So complex that I feel like 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 she is easy. She keeps it simple - Puffin Rock, Daniel Tiger, music, and good. She is sunshine incarnate.”
I can sum her up in three sentences. But…should I?
My daughter has been having more night wakings lately, but she doesn’t cry or scream… She just lies in her bed, shifting around and “talking” to herself. We typically check the monitor, laugh a bit, roll our eyes, and try to sleep while she entertains herself. But lately, I have been laying awake listening to her. And for the first time in five years, I’ve been struck with something: what is going on in her brain?
Is she lonely? Did she have a good 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 have allowed her 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?
Reflectively, I can attach different experiences where I feel that she has shown complex emotions. But I don’t stay in that reflection - because I do not know how to accept that she could feel as deeply as I do.
I go to counseling, I sing songs to beat out 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 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.
My daughter does not have a toolbox. She has no language. She has no voice. I do not know how she processes. I do not know how to help her. Her life renders me helpless more often than not… I’m not sure I can handle another aspect where I am helpless to help her.
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 watchful - I always make an attempt to reach out to her. A brush of her hair, touching her cheek, holding her hand.
All of this so that if she is melancholy or exhilarated… 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 our complex human emotions needs: to know we’re not alone.
