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Every Day is Precious: Routine is a prison if it separates us from love
By ROB PAYNE
For Williamson A.M.
My morning consists of doing things as quietly as possible to keep from waking my wife, Marcy.
It is ''my time'' to do whatever reading and writing I get to do that day: e-mails, cards and letters, the Bible. I also use this time to post a daily update on Marcy's Web site and search the Web for any new developments that might be worth trying. Because she is sleeping and wakes only occasionally for suctioning and repositioning, I can better focus on things other than Marcy's immediate comfort. So I like to extend the morning time for as long as I can.
That's not easy to do with two children getting ready for school in the morning plus three dogs, two cats, and a bird who thinks morning is the best time of the day. Add to that the fact that Marcy's hospital bed is right in the middle of the family room the busiest room of the house.
The bed is there by design; it keeps Marcy involved in what's going on. Did I say involved? Truth is, she still runs the house. Even though the only muscle below her neck that she can dependably move is in her right thumb, she literally keeps us under that thumb. That's what she uses to control her speech synthesizer and tell us what needs to be done, where clean socks are, and that she loves us.
The other morning something happened that made me want to change our daily routine. Our 10-year-old daughter Darcy was wearing a new spring outfit that a friend had given her. She was standing in front of her Mom as I was standing behind Marcy and couldn't see Marcy's face. Darcy was waving to Marcy. I saw her and started to stop her. I wanted Marcy to sleep because once she wakes, she is usually awake for the day. I still had things I thought I needed to do that day.
Darcy wanted Marcy's approval of her outfit. She wanted one of Marcy's precious smiles recognizing the flower she had in her hair. She wanted Mommy to tell her how pretty she is.
I didn't stop her, but she must have known that I didn't want her to wake Mommy. She mouthed, ''She's not awake.'' She waved to Mommy again this time goodbye and went out to catch the bus.
Somehow that moment made me think of all the things Darcy is missing by having a mother that has to stay in bed all the time. It made me cry. I went to the Bible for comfort and was led to Matthew 5:38-41. You know, the part of the Sermon on the Mount that talks about turning the other cheek, giving your cloak when someone asks for your tunic, and going two miles for someone who wants you to go one mile.
When Marcy needs me whenever anyone interrupts what I think is important at the time I should not think of it as an intrusion. It is not someone breaking into my fortress, it is someone breaking me out of my prison, punching a hole in the walls I build that perpetuate the illusion that I am separate from other people.
Then I thought of all the things we have gained by being in our current situation: the love we are learning and living. My tears changed from self-pity and despair to thankfulness and hope.
If you know a family in need, do something that you think may be an intrusion help them break out of their prison. You may get a little break yourself.
Every Day Is Precious is a column to remind us to treat everyone we see today as if it could be the last time we see them. It is written by Rob Payne, whose wife, Marcy, was diagnosed with ALS (Lou Gehrig's disease) in August 2000. Now 41 years old, she has gone from winning 5 and 10K races to being quadriplegic and on a ventilator at home. For a collection of these columns in book form, more ways to help others, more about Marcy, or to receive e-mail updates on her condition, visit www.EveryDayIsPrecious.com. Readers may contribute to her care by sending donations to Every Day Is Precious, 2051 Harvington Drive, Franklin, TN 37069.
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