The Push and Pull of Advocacy

I turn my camera off after recording the coach going through the routine for the cheer competition and look back at Sienna.

She has melted to the ground and her eyes are puddling with tears. What had I missed?
I step towards her and ask her what’s wrong as the tears stream down her face. I try to get her to stand and do the routine with her peers, but her body is like a pile of bricks. She pulls me down to the ground with her. The other kids are staring at us. I scoop her up and she wraps her body around me and hides her tear stained face and fogged up glasses in my shoulder. I walk towards the bathroom.

I help her get seated on the potty and I crouch down to face her. Sienna is quiet and stoic with her emotions. Most people never even notice she’s upset. I’m not most people.

“Are you okay sweet girl? Listen, you have been sick and missed the last few practices. It’s okay that you don’t know the routine. Miss Amy (her physical therapist) is going to help you learn that. This is supposed to be fun.”

She looks up at me, her bottom lip extended in a fierce pout. I question myself. Is this why she’s upset? Is something else at play? I know she knows she’s being treated differently than her peers at school. She leaves earlier than everyone and is removed from the typical class often. It’s been quite the dissent from preschool last year where she was fully included in everything.

This is kindergarten. She is 6 years old now. Her emotions are more complex, layered, and mature. What must be going through her mind? Does she realize things are harder for her? This is a gut wrenching moment for us both. We are no longer in a place where her differences in development can be overlooked. We stand at the precipice of a canyon that has just begun to erode. The gap is widening and with each passing step, the gorge grows in depth. I know time will only push the other side further from our line of vision. We can’t pause or stop. We have to keep going.

I am utterly broken. Is there anything harder than watching your child struggle? I wanted her to participate in this, so she would have interactions with peers. Her favorite movie is Zombies and it includes a ton of dance and cheerleading. She imitates the moves and has fun. It’s that simple. Am I forcing this on her? And if I am, who am I doing it for…her or me? There is no guidebook to this. I can’t rely on her verbally telling me what she wants. I have to trust my mom gut wholeheartedly, and lately my gut has been unreliable.

This is the push and pull I speak about so often. There’s a voice inside me willing myself to push for her to be treated the same as everyone and to be given all the same opportunities as her peers. “Advocate for her place in this world! She is capable.” it says. Then there’s the pull, “But this is too hard for her. She can’t keep up and you are causing her anxiety by pushing.” Back and forth they go and the mental tug of war in my mind escalates. It leads to a special kind of exhaustion that bleeds into your cognition, your emotions, and your body. It’s an exhaustion that only other mothers can understand. Quiet moments are no longer sacred. The push and pull can invade your safe space at any given time.

And then, just like that, as we are washing our hands, the voices of her peers can be heard from the bathroom shouting a cheer she knows. It’s one she has learned and a giggle erupts from her and the pout has been replaced with a fierce smile.

“Should we go back and cheer with your friends?”, I say.

“Friends.”, she responds with a smile.

We walk out and the little girl she stands next to in line yells for her to come and wraps her arms around her in a warm embrace.

Sienna’s smile widens in spite of the canyon. Erosion may be an unstoppable force, but so is Sienna. The push returns to my mind and lets me know we are exactly where we should be. I let the peace in this moment soak in, because even though I know the pull can return at any moment, I know to hold onto the tranquility as long as I can.

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    1. Thank you so much for following our journey! I need to get a button on this page for your book.

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