Lurching forward

We were at the breakfast table this morning when Peter emerged from his room dressed for school, but with a pained look on his face.  He said that his chest hurt every time he breathed.  Sometimes in the morning he'll claim that he feels sick because he'd rather stay home and play video games.  This time it was obvious he didn't feel well.  We gave him a couple of puffs of albuterol and sent him back to bed.  While I was downtown at class (my paralegal program started in late January), Carl took Peter to the pediatrician.  I was afraid that his mild cold might have turned into pneumonia.  The pediatrician said that Peter's chest was clear and his oxygen saturation was good, so there was nothing immediate to worry about.  That was a relief.  We got a refill on the albuterol.  Gosh, we must have used gallons of that stuff when Peter was tiny.  Round the clock nebulizer treatments for at least 3 years.

One of Leo's friends came over tonight, someone who hadn't seen Peter in a few weeks.  She noticed his weight loss right away.  It really seems to have happened quickly.  Leo remarked that Peter seems to be going to bed earlier and earlier these days, and actually sleeping.  He's right -- it used to be that Peter would head for bed around 8:00 and then watch movies on his DVD player until 11 or 12.  Now he's sound asleep by 8:30 every night.  Leo and Annie have been quite stricken since last night when we all realized that Peter had changed.  It was so easy for all of us to imagine that things would go on like this forever, living with a boy who is terminally ill but not sick. 

The pediatrician said he couldn't tell us anything about anemia and weight loss, because he just doesn't see cases like Peter's as part of his ordinary pediatrics practice.  I checked some articles on the web and learned that unexplained weight loss is definitely a symptom of severe anemia.  Had we not gotten the unexpected blood test results in October, this might have been Peter's presenting symptom.  And we probably would have welcomed it, thinking "Wow, Peter is finally slimming down!  Doesn't he look great?"

Peter has been going through a "love you forever" spell since we got back from India.  Some of you moms and dads out there probably remember the story by that name.  It's incredibly touching.  A mother holds and rocks her baby boy while he sleeps, even when he's a grown up man.  While she rocks him, she sings,

I'll love you forever
I'll like you for always
As long as I'm living
My baby you'll be

Almost every day Peter will come up to me and say, "Mommy ... ?  I'll love you forever!"  Sometimes I can be a bit distracted and I'll say, "I'll love you forever too, baby."  Then he'll say, "Noooo, Mom, I'll love you FOREVER, Mom ..."  and that's my cue to finish the verse.  At the end of the story, when the grown man has begun to neglect his grey-haired mom because he's all caught up in his busy life, he suddenly realizes that that she has grown old and frail.  So he comes to her house and sneaks into HER bedroom while she's sleeping, and rocks her in the old rocking chair, saying,

I'll love you forever
I'll like you for always
As long as I'm living
My mommy you'll be

That's the way it's supposed to be.  That's the way it's supposed to be.

But this is just the beginning ... and I swear in the style of Scarlett O'Hara that with God as my witness, this boy will NOT look into my eyes and see fear or grief.