A Letter of Thanks to the Helpers Who Support My Daughter With a Disability
It’s 7 p.m. and my 4-year-old daughter, Eva, is crying because she is having trouble getting her “Hakuna Matata” shirt off for her bath. I sit on the floor next to her and gently encourage her to keep trying. Eva has only one functioning arm. She bangs her feet on the carpet and starts leaning forward again to try to pull the shirt with her right hand over her head. Almost there…
I see Sammy smiling at me from her stuffed animal pile in her room. I realize my shoulders were hunching up from the tension I was holding. I exhale and unclench my hands.
Sammy is a very plush, giant monkey wearing a lime green vest with a zipper and big, plastic buttons over his two front pockets. He has a star pattern on the bottom of his feet and a long furry tail.
A grandmother I will never meet bought the monkey, measured him and handmade his clothing.
Then, she wrapped him like a birthday present and donated him and some other similarly costumed monkeys to the children’s hospital where my daughter receives occupational therapy for her disability.
“This monkey can help Eva learn to dress herself one day,” our therapist, Megan, told us as she handed us the gift. Eva was only a year old at the time. As her parents, we weren’t ready to think about how she might be different than other healthy children, even though she had started to miss some developmental milestones.
Eva got stuck during her delivery and the maneuvers used to free her, paralyzed her left arm permanently. So, in addition to adjusting to life with a newborn, we had biweekly physical and occupational therapy visits and a whole host of worries and questions about Eva’s future. We also didn’t know anyone with Eva’s condition and there wasn’t much helpful information on the internet. We felt very alone.
This open-hearted lady and her thoughtful gift caught us at our lowest, and her memory has since pushed me to focus forward on Eva’s recovery. Sammy was made with the intention that Eva will learn to dress herself one day, and I must believe in that intention to see it happen. But, sometimes, I’ll admit to feeling a little more helpless than hopeful.
Fred Rogers, a pioneer in children’s television who created “Mister Rogers’ Neighborhood,” once said that his mother would console him when bad things happened by telling him to “look for the helpers — you will always find helpers when terrible things are happening.”
I see you, grandma, working all afternoon at your sewing machine to bring a smile to a child’s face.
I see you, occupational and physical therapists, being patient and kind when Eva has a tantrum — which feels like every session. I know she isn’t the first kid in your day to not want to listen or to overturn that unassuming basket of toys, and yet, you find a way to engage her and make her smile.
I see you, teacher, who ensures my child with a disability always is included in activities, even if you have to hoist all 40 pounds of her up so she can do the climbing wall like the other kids.
I see you, doctor, standing at the operating table for hours upon hours with no break for food on my apple-cheeked and sassy six-month-old. You know that you are responsible for our baby, our whole world and you take such careful care of her.
I see you, friends and family, crying with us on hard days and celebrating in our joys — and bringing all the cheese dip.
I see you, lawmakers and law defenders, fighting for justice, sometimes against the tide, so that we can do what’s right for our most vulnerable citizens.
I see you all, helpers.
And I am deeply thankful.
You all are with me tonight when I need to be reminded that I am not cornered by our challenges…I have you in my corner.
Eva, though, doesn’t need any of us.
Her shirt collar gets stuck on top of her eyes. Her tears stop and she starts to giggle.
“Mommy! Look at my new hat!” She is smiling with her shirt half over her face.
Then, she pulls, and grunts and pulls some more. She’s gotten free of the shirt. And to the bath we go. Later, as I tuck her into sleep, she snuggles up with Sammy. His shirt is still on, and that’s OK. Maybe we will get it off tomorrow.
Photo submitted by contributor.