Accessibility · Adaptive Parenting (an adventure itself) · Conversations with Kids · Family life · Mom is Doing Her Best

Christopher and Dana Reeve Blog, October 2, 2017: The Nitty, Gritty, Sometimes Ugly Truth

When I started writing for the Reeve Foundation a little over a year ago, I rarely heard feedback from readers beyond “sharing” or “liking” on social media. However, lately, I’ve been receiving mail, not exactly fan mail, but more like the ‘Dear Abby of Paralysis and Marriage.’Only, I don’t exactly feel like any kind of “domestic expert” like Abby Van Buren; nor do I have any kind of medical background like the Dr. Phils of the world. But I do feel compelled to write back, and so I do, and then these conversations evolve into snapshots of other people’s lives. They are complete strangers writing intimate and vulnerable, “I need your help/can you help me” kinds of letters. But in this old fashioned-yet-never-out-of-style practice of write and respond, we learn about one another and the stranger part disappears.

Mostly, the writers are women, whose husbands have been paralyzed after they were married and had children, and in many ways are still grieving the loss of the non-paralyzed person they vowed to love forever– and they do and they will, but it’s just hard. They want help. They need help. They wonder how my writing feels so happy. And so what I’m here to tell you today is that it’s not always happy. But I feel like part of being a storyteller is paying attention to family in such a way that helps to highlight the significant moments in those common days of life. Years ago, I started writing down what our kids say in relationship to their dad’s disability, believing that one day it might just fill the pages of a book which remains unwritten.

At the risk of sounding whiny in light of the horrendous flooding and damage caused by Hurricanes Harvey, Irma, and now Jose and Maria, our relatively accessible life at home is very inaccessible at the moment. A faulty washing machine destroyed a good portion of our hardwood floor, the wood bulging at the seams making both wheelchair passage and foot travel treacherous. We moved the kitchen table, along with new washer and dryer once they were delivered, into our living room which is not very big. My wheelchairing husband has a goat path to pass through reminding me about 75 times a day of the importance of accessible housing when one of us is trapped and can’t pass to the other side without me losing my patience. For those people feeling trapped by flood waters and loss and aren’t sure when swimming against the current eases up, our hearts and prayers are with you. So, no, everything is not perfect in our world of paralysis and marriage, even if we laugh a lot. Our stair lift doesn’t work and hasn’t for a few years; when our children run away from their dad upstairs to hide, he is forced to transfer and bump himself up the stairs one at a time if I’m not home to physically escort them down to him. So for every sweet story I share about one of our kids, just remember there are probably 50 which have resulted in one of us needing a major time out. This is what I tell people in my response letters– the nitty, gritty sometimes ugly truth about life, which is why I prefer to write about the good stuff, those magical moments we can hold onto when everything else feels impossible.

Hi Heather,

I read your story about your daughter and the daddy slingshot today and wanted to reach out to ask if you had any resources available for spouses. What did you do when your husband became injured? My husband suffered a bad fall on a mountain bike two years ago and is a paraplegic. At the time, our kids were 2 and 4. It’s not easy and I find it so hard to not complain about anything because I don’t think I have the right to complain about how hard life is now. How did you get over this? Or did you? Thanks for reading this and sharing your thoughts.


Tired and depressed in San Antonio

So many people could have written this very letter; of course, I recommend the mentor program through the Reeve Foundation, but mostly I tell people the truth. There are hard days and there are good days. We hope the good outnumber the bad, and when they don’t, we find our dearest friends and family to lean on until the floodwaters clear a bit. Thank you for writing– and thank you to our people who have been on the listening end when I’ve Dear Abby’d myself to tears.

Heather Krill is a writer- wife- teacher-mom who lives in the White Mountains of NH with her husband, Geoff, a paraplegic and professional skier, and their two children, Carver and Greta who are 7 and 6. Please check out her novel True North, website, and @heatherkrill1 on Twitter.

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