Catching up right here and now involves a whole lot of stuff like snot coming out of my kids, as well as raspy voices and big, splashy sneezes – the kind that explode right in your face, dousing you with all their germtastic glory.

Keeping Mack and Micah relatively snot-free isn’t that bad, but Moxie?! Oh man. Miss Independent gets down and throws tantrums if I try to wipe her nose for her. She’s got to do it by herself and that means she swipes her nose and rubs the stuff all around so her face becomes a mantle, if you will, of Cruste de Mucus.

I try to accept these things as badges of motherhood and be graceful and nurturing in the face of all this…drip but honestly? The stuff grosses me out and it’s a real struggle. I can’t even handle the snot sucker – Mikey is the sole manipulator of that tubular blessing.

So here we are and it’s Monday morning and it’s glorious outside. Mack’s nursing on me as I type over his head. Moxie is slumped down, crusted. Micah talks to everyone as he engages in his morning craftastic activity (I think he’s building a monster). I’m wondering what we can do that will engage everyone and yet not infect the outside world. I’m not sure if such a thing is even possible.

I want to write something really deep and meaningful for World Down Syndrome Day coming up – this Thursday (the 21st) but I’m not sure I have anything very deep and meaningful in me right now. I’m just trying to keep the snot at bay and not drink as much coffee as I want (- which is far, far more than a nursing mother should, I’ll tell you that!).

I’m also casting a lot of long, lingering looks at my painting that I’m working on. My One True Darling got it all set up for me and I find that’s all I want to do anymore: paint. And I’m reminded of the fact that I only continued blogging to the degree that I have because of the difficulty in painting (– with little kids running around, demanding time, with acrylics drying out quickly, with easels getting knocked over, and with concentration getting shattered). My heart really longs to paint though. I’m finding that even a few brush strokes applied here and there perks me up and sets my world much righter.

So here we are. The bookclub is polling a first book to read now – it might be fun for you to join. Here’s the embedded piece that goodreads encourages me to add!


I’m sorry, you guys. New poll. “Don’t Call Me Inspirational” costs over $60! The kindle version is $12 but I don’t think it’s fair to have only one affordable option (if someone doesn’t have a kindle, they would have to shell out a lot to participate…). Let’s hit the drawing board again. Thanks!

Moving Violations: War Zones, Wheelchairs, and Declarations of Independence
The Unheard: A Memoir of Deafness and Africa
The Question of David: A Disabled Mother’s Journey Through Adoption, Family, and Life
Loud Hands: Autistic People, Speaking
schuyler’s monster
Schuyler’s Monster: A Father’s Journey with His Wordless Daughter

Schuyler’s monster


It’s Monday morning. Micah’s now belting out “I’ve Been Working on the Railroad” in his gravelly, sick (and highly off key) little voice. It simultaneously breaks my heart and makes me smile.

Have a wonderful day.


Moxie and I had a little secret for what we were going to do today

We were going to be watching movies all day as judges for Superfest, the International Disability Film Festival.


I was squirming in anticipation.

So was Moxie. But maybe that’s because I was squirming so hard and she’s usually on me so she just squirms by extension.

Oh! I couldn’t wait, couldn’t wait, couldn’t wait, couldn’t wait, couldn’t wait, couldn’t wait! Through judging over the years, I’ve watched some of the finest of disability-related films. Like Happy Birthday, Thalidomide; Abnormally Funny People and Whole – A Trinity of Being.

And so, it goes without saying that when I called to say I couldn’t make it today because we are all SICK, I was all about crying. Too sad, so sad. My one annual chance to reconnect with the disability community, judge awesome movies – gone.

And now, typing this when I would’ve been getting close to wrapping up a great-as-usual session, I feel grateful that Moxie is so much better. And that my own drugs are working and I feel half-human again. Last night scared me.

Moxie, you see, had a little cough yesterday and I thought that was that. Then around 10 pm last night, she work up wailing. Crying uncontrollably, her tiny body on fire with fever. I freaked. I started crying myself, rocking her, trying to figure out what was wrong, how to calm her. We took her temperature (102), looked up what “they” said to do (wait – look for other warnings). I couldn’t help but think of all the mothers out there who go through something like more often than I. Where holding their flushed, hot, sobbing little ones to their chests is more normal than not.

Her little nostrils were flared, her lips downturned in an exact replica of the tragedy mask. Big, fat streams of tears rolled down her pink cheeks. She looked at me oh so miserably, so uncomprehendingly. Why? What is this, Mama? Ugh. It’s just the worst. Not knowing how to take away your baby’s pain. It’s heart-wrenching.

And so I sat there with Moxie on my lap for half the night. Too scared to do much until finally, all of my limbs numb, I carried her back to the bedroom. Lay down with her. Mikey, also sick, was on his own in the living room.

Moxie was holding on to me like the proverbial lifeline. Grasping my shirt in her little fists, she made sure I didn’t go anywhere. So I stayed right there, all night, watching her. When she got feverish again, then when she vomitted, I cleaned her up, nursed her back down. Finally, as I saw the sky softening outside and the first tendrils of morning light making their way through the trees, I fell asleep myself. With Moxie clutched to me still. Her leg flung over my waist, her arm oustretched on my chest. Her breath, milky and sweet.

When I woke up a few hours later, she was right as rain. And I was crawling around with whatever she had. Such an isiduous little germ-beast! Really!

Making us miss Superfest! But still. I am so grateful that my baby is better. Nights like that… I can do without.

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