The House of Small Smiles

The small smiles started a few years ago when I was on the commode. I can’t be alone even there because I am totally immobile and limp, so even in the specialized commode chair, I flop right over. Plus, I am completely nonverbal, so I can’t call for help if necessary. Add to all that I need someone to clean me, and I clearly require a “bathroom partner.”

Evan is looking at me with a furrowed brow and I know the thought running on loop through his mind because it always, always runs through mine – how did we get here?

I know he also worries about my mental state in these situations since I can’t communicate without my tobii (eye gaze computer), which we can’t bring into the bathroom. I give him a small smile to let him know I am OK. His forehead smoothes, and he bends down to kiss the tip of my nose. When he rises, he gives me a small smile of his own as if to say, “This is OK. We’re OK.”

Slowly, the small smiles spread to when Evan massages my legs each night before bed to prevent blood clots. Evan smiles first this time because he knows I always feel guilty he has to do this when he’s exhausted from taking care of me all day. His smile says, “This is OK. We’re OK.”

Over the years, the small smiles become genuine. We are just happy to be together, even if I am on the commode or Evan is exhausted. And yes, sometimes we’re lonely, scared, and overwhelmed, but sometimes, well…

We’re OK.

* I can’t post comments or reply to them, but I can read them and I love them. Keep writing!

If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a contribution through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

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