Thursday, June 19, 2008


So, it's weird.

Thomas had a really difficult day yesterday; lots of breakthrough meds, general grumpiness, and sitting on laps. Did some of his strange, loopy motions that seem to be med-related, but which could be tumor-related.

Then, today, he was totally hyper and didn't take a nap; ran around like a champ all day doing cool kid things like learning how to make splashes "jump" in the water by squeezing your fist, and playing "frog."

Trying to keep up with the arc of emotions and needs at our house is a full time job. I don't have the strength for it. We try not to take too much stock, not to look at the big picture. It's too big.

When Scott's mom stayed with us recently, she remarked on how hard it is to see all the space cancer takes up in our lives until she visits for a 24-hour cycle. I can see how this is the case - people ask me why we're so tired, and my mouth falters. The answer is something like,

"Well, Thomas got an extra med dose early in the day, so he took a really long nap, so he went to bed late, but we got up to give him meds at 3 am. Then he had a coughing spell at 4:30, and we have to monitor that, because the meds can make him thirsty, or he might have stopped being able to swallow and could die. Also, he has this weird sleeping schedule, so he sleeps pretty lightly, so he took until about 5 to go back to sleep..."

There are more reasons, but I am too tired to explain them. Just trust me, it's weird.

Read more!


At 7:15 PM, Blogger Carol said...

My baby didn't sleep much either. I agree, it's hard. No one will ever know how difficult or how "weird" this is for you. And whether it's the little picture or the big picture, it's grueling. God bless and try to rest.

At 11:42 PM, Blogger kate5kiwis said...

oh yay
glad today was such a Cool Kid Day.
kisses X

At 8:15 AM, Anonymous Anonymous said...

oy. i can only imagine how weird it really is. miss you guys.

At 10:25 AM, Blogger Lynn said...

People ask you why you are tired??? Um, are they that clueless, or just extremely heartless?

You have my permission (not that you really need it) to smack the next person who asks you why you are so tired.

Even if you don't, have it in the back of your mind that you could have slapped them silly, and maybe that will help you answer such an inane question.

Take joy in the happy moments. The splash/frog thing is such a typical toddler moment.



Post a Comment

<< Home