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Living Thanksgiving

Questions about our girls’ disabilities often lead into conversations about the abilities of those asking

Following last month's column, I am thankful to share that Janneke’s first four weeks with her new school, Beacon Christian, have gone well. She has embraced the change in her own way, feet shaking out their morning happy dance in her wheelchair on our walk to school and new sounds coming from her lips, no doubt influenced by the classroom chatter of her typically developing peers.

The children at school continue to stare at her with curiosity, and there are many questions. Why is she so wet (with drool)? How tall is she? Does she get thirsty? How come her legs and arms don’t work like mine?

Gratitude or relief?
The questions about our girls’ disabilities often lead into conversations about the abilities of those asking. I’m cautious with this direction. I don’t want to inspire a spirit of gratitude that becomes selfish relief: Seeing you in your wheelchair makes me thankful (phew) that my legs work.

Recently, I read a devotion on gratitude, and the writer challenged the readers to be grateful for what they didn’t have, such as a deadly disease or illness. The intention was sincere in reminding the readers to be thankful in the moment, but something didn’t seem quite right.

I’ve been thinking about the thankful-it’s-you-and-not-me sentiment; it’s been expressed to me before. Though it seems rather harsh, I suspect many of us have whispered this in our hearts. We hear of Hurricane Florence, and we give thanks we don’t live in the Carolinas. We hear of forest fire devastation in British Columbia, and we give thanks we don’t live in Prince George. 

In the first few years of learning to care for our daughters Rachel and Janneke with all their medically complex issues, I was thankful our girls didn’t need tracheostomy tubes in their necks and windpipes, requiring oxygen support. I was thankful we didn’t have cardiac issues. As I observed and interacted with families in the hospital and at the children’s treatment centre, I would silently count my blessings that I wasn’t so bad off. 

An empty thanks
The 1984 charity song “Do They Know It’s Christmas” (written for famine relief in Ethiopia) comes to mind, when U2’s Bono sings, “Tonight thank God it’s them instead of you.” I wonder if this way of being thankful eventually leads us to an us-and-them mentality, creating what we hope is an invisible wall of separation between us and tragedy. This way of giving thanks left me feeling empty and strangely guilty, and sometimes, as in the case of a family camping trip gone awry when Janneke was airlifted to McMaster Hospital, those problems others were having suddenly became mine. 

I don’t mean to suggest that you can’t be thankful that terrible things aren’t happening to you. But it is important to consider what we do with that spirit of thankfulness. Does it propel us do more, or does it nudge us away from the need, keeping us away from them? 

In helping kids understand Rachel and Janneke, I do wish for children to be thankful for their own legs and arms that work, for mouths that swallow and voices that sing. I also wish for them to see how their working bodies can come alongside kids like Rachel and Janneke to work together. We’ve seen this with the Grade 4 exercise of Rachel’s Voice when classmates were given the weekly responsibility to write Rachel’s perspective and give a report to the class at the end of the week. 

Living in thanksgiving
Learning to identify with the need creates a sense of thanksgiving for everyone involved. Our family can be thankful for the helping hands, feet and voices, and the girls’ classmates can be thankful for the reminders of what might otherwise be taken for granted. Rather than isolating others because of a problem, we come closer, sharing our humanity. 

Thanksgiving is an action, the act of giving thanks. It isn’t merely a sentiment or an expression; it’s a robust noun, weaving experience and memory in community – and ultimately surrendering all we are and are not, what we have and what we don’t have to our Creator God. Happy Thanksgiving. 

Author

  • The Pot family story includes a life of caregiving for daughters Rachel and Janneke.

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