On Being Around

by Scott Lew

They like boobies
 and birthday cake
 tub time
 and Humpty Dumpty
Two years old
 and they’re already fans
 of Simon & Garfunkel
 Justin Beiber
 and cheesy Japanese TV monsters
They amaze me
 with words like
 and elephant
They’re interested
 in poop
 and privacy
 and always want to know
 what happened
 who’s there
 and why
They giggle
 from their toes
 like there’s no tomorrow
And cry
 from their hearts
 for more pizza

It’s impossible
 to describe the joy
 they give me
By just saying
Using me
 like a couch
 or jungle gym
Hearing their feet
pound the floor running
Or their voices
 call each other’s names
It’s reason enough
 for being

One night
 they found a stethoscope
 listened to my heart
 like little mad doctors
It was proof
 I was there



Filed under ALS, ALS Poetry, Lou Gehrig's Disease, PALS, Poetry, Scott Lew

7 responses to “On Being Around

  1. K Moreton

    Beautiful. Absolutely beautiful.
    Happy Holidays to U + A + R + R
    Much love…. Kevin

  2. Congratulations on your beautiful family. I hope you all have a Happy Hanukkah, celebrating miracles big and small. ~ Sarah

  3. Jane Hill

    Tears to my eyes – beautiful writing. 🙂

    Hey, as an aside (and forgive me in advance for almost certainly telling you what you already know, though just in case….), Jason Becker (kick ass muscian; ALS as well) communicates pretty damned effectively using no sound whatsoever (vent) by a very simple alphabet board his father holds up for him. It goes quickly.

    Your boys are beautiful and have no idea yet just how lucky they are to call you daddy.

  4. Kristine

    Brings tears to my eyes. So glad to hear they are doing well.

  5. Susan

    Beautiful and profound Scott. Your words and your kids. f–g remarkable really, all of them. It’s too late right now, but I’m gonna read this to Marzhan. She remembers meeting you a few years ago, very well. Just by being who you are, we cannot help but think more about who we are.

  6. Susie

    Scott you are such an amazing writer with a great heart. I enjoy listening to the sounds of family too. I hope to experience that some day. LOVE U.

  7. Stephen

    That’s a moving poem, good in the small ways as well as the big. You remind me of what’s important. We spoke some years ago — I’m a friend of a friend — when I was having symptoms of ALS. It’s good to read these and hear your voice again. Thank you for writing them.

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