Thursday, April 03, 2008


It’s hard to say how Thomas is doing these days. It’s a wild roller coaster, but the ups aren’t as high as they used to be.

We’ve had occasion to learn how kids’ metabolisms process drugs more quickly than adults, as Thomas’s morphine dose has increased exponentially in the last few weeks. We thought things were getting really bad again last week, but it was just another case of pneumonia. And then, no, just allergies. Pardon me while I go vomit.

When he’s dosed up on morphine, he’ll play with us. But most of the time, Thomas doesn’t feel so hot, and he wants us to play his new game, and he is so not playing around:

Rules for the new game, Watching Over:

1)To initiate the game, Thomas will take your hand and lead you to the place where he is coloring or watching TV or playing with trucks

2) You may or may not be allowed to stand. Thomas will indicate his preference through hand motions.

3) Your job is to keep the desired pose – seated or standing – and watch Thomas doing what he’s doing.

4) You may not do what Thomas is doing. If he is coloring, you may not color. If he is eating whole grain fruity cheerios, you may not mindlessly nibble along.

5) You may not attempt to read on the sly. If Thomas discovers that you are concealing your disinterest in Bob the Builder by keeping the newspaper just out of sight for snatched moments of adult thought, said paper will be confiscated and shredded

6) Failure to comply with the rules will result in an all-out fit that will lead to Thomas having a headache

Scott was gone visiting his sister this weekend and, can I be honest, by Saturday night, I kind of hated Thomas. His new fussiness, my inability to decide how to discipline a kid who has only become grumpy since his pain increased ten-fold, and the interrupted sleep of night meds just frothed over into an intense grumpiness on my part.

We were chilling out before the bedtime routine started that night, and he came over to steal my newspaper. My first instinct was to yell, “Mo-om! Thomas is stealing my paper again!”

But . . . I am the mom. So I hauled him off to bath and bed a half hour early. I poured a glass of wine and finished up last Sunday’s paper. I liked him well enough before too long. I’d call it a draw.

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At 3:28 PM, Blogger GoSuze! said...

So cute! Such human feelings! Something along the line of "I love you more than life itself, but you're on my last nerve!"

From a fan in Plano.

At 11:40 AM, Blogger Andi said...

After getting pregnant after a decade of infertility/loss I naively thought, when my son arrived, that it would be a bed of roses all the time. That I would always have sweet thoughts and that I would always have warm fuzzies. And that even though I KNEW he would test my patience, I'd never lose mine.


Am I clueless or what?! LOL!

All of that to say that I LOVE your honesty about your feelings and how being a mom to a sick child is hard. It's the stuff people want to hear, but for some reason we all feel scared to ask about.

We continue lifting you up...

At 1:41 PM, Blogger Jana said...

yes. You are the mom. A really really good mom, I think. Praying for all of you.

At 3:13 PM, Blogger Lynn said...

Since Scott had some off time, are you going to get some too? It sounds like a day away (and several margaritas) might help a bit.

It's surprising sometimes how we still want "mom" to take care of the yucky stuff, then to realize that we are the mom. Some days moms just want a break from being's normal.
Take care of yourself!

At 2:59 AM, Blogger Ctelblog said...

Ay. Hard work. Hang in there girl. Thomas still sounds sweet. I remember asking the boy "Can daddy have some coffee before we play? Please!" And receiving a solemn "no" followed by holding my hand to make sure.

At 10:38 PM, Blogger Mel said...

I liked playing, "Hey, watch me play basketball."
Sorry we also had to play, "Hey lady, please control you giggantor child."

At 4:28 PM, Anonymous Anonymous said...

I hope you are doing well. I know that you have hit a patch in the road and everything seems to be so unrreal. We are here for you though and look forward to your postings so we can support you in the good and the bad.

Always here for you-

At 12:05 AM, Blogger kate5kiwis said...

thank you so much for your delightful words at my blog today. i confess i kinda lost you guys for a while, but have now put you in my bloglines so i can catch up more often.

i am bawling and giggling simultaneously as i read your thoughts about your life, thomas' life, the beautiful things, the hard things; and i am thankful that our paths have crossed.

you girl, have big love.
big, big love.
and trust.
and hope.
and a beautiful young boy.
thank you for sharing so candidly: i am blown away by your faith, at your ability to find joy amongst the daily rollercoaster.
much love
kate X

At 6:35 PM, Blogger Thomas, as told to Sarah said...

aw, kate loves us. now we are fabulous!

...and no worries, to everyone who has commented/asked. I am the World's Least Likely To Become a Martyr, so yes, I've had tons of breaks and it was a rare and bizarre set of circumstances that left me without back-up that weekend.


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