Just a few minutes ago, right before dinner, Adahlia turned towards me and said “ouie, ouie.”  I looked where she was pointing – a small area of irritation was on her skin, just below her right kidney on her lower back. 

“Did you get hurt?” I asked.

She said yes.  A few minutes prior, she had been rough-housing with her dad.  I assumed it a carpet burn.

But she didn’t want to let it go.  

“Ouchie, ouchie,” she repeated.  I looked again and the skin was redder, rougher, more irritated.  I asked if she wanted medicine and applied some calendula cream. She winced as I gently rubbed it on.

“It’s that bad?”  I exchanged a look of mixed amusement and concern with her dad.

This level of pain over a scrape wasn’t like her.  She had suffered much worse and barely flinched, got up, and continued playing.

She kept lifting up her shirt.  I reached over but she wouldn’t let me touch her back.  She jumped down from her chair at the table and I took off her shirt.  

“Is that better?” I asked.

She ran away from me. “Ouie, Mama,” she repeated.  She bit her arm.

To distract herself from the pain?

And so I could no longer deny it.  No longer pretend we are a normal family with a normal child who got a little scrape.  For the fifth or sixth time, I stood up from the table, a longing glance at my untouched dinner, and went over to her to check her back. 

And I knew.  My belly dropped.  I almost vomited.  I fought hysteria.

“It’s spreading, it’s bigger,” I said, my voice emotionless. I wanted to scream but didn’t.  “And it’s on her other side now, too, below her other kidney. There wasn’t anything there before.”

I picked up my phone.  I posted to the DBA Family group to see if any one had similar experience to get an idea of prognosis.  I called the on-call number at the hospital and left a message for the operator to page the doctor. But I already knew.

It’s the Exjade.

It’s not the first time this has happened.  It happened 4-5 months  ago, after increasing her dosage to get the iron out of her liver and heart.  But those were smaller welts, on her arms and abdomen and neck, and though they spread once all over her body, they went away on her own. 

These welts were large and too near her kidneys for comfort. (I know that doesn’t matter from a western perspective but from a Chinese medical one, it does.) And she had never had pain before.  Itching, yes. Not pain.

15 minutes later, the pain appeared to leave as mysteriously as it came.  She sat at the table and started eating ravenously, moreso than normal.  

The doc and I conferenced. I informed her that Adahlia was doing better, eating and no longer in pain, and I could tell the doc was beginning to dismiss the issue.  She suggested we do some Benadryl.   “Ok, we can try that…” I replied. “Are you… familiar with Exjade and its possible complications?” 

And things got a little awkward.

But luckily she took it well, and after a brief pause, she answered “ye…es…” with a bit of hesitation in her voice.  She conferred with me a bit more, and I could tell she was paying more attention, to the point where she offered to call again in 2 hours to check to see if things  remained improved, and suggested that I call her back if things took a turn for the worse.

Because Exjade rashes are serious complications and can result in death.

We are supposed to run the Boulder Panicking Poultry Kids 1-miler tomorrow.  A Thanksgiving Trot of some sort is a tradition of ours, the one sporting/racing event we do every year.  We’re not exactly competitive about it. It’s just for fun.  And Adahlia’s always enjoyed the spectacle.

She seems to be doing well now.  Rash still red, and she still won’t let me touch her back, but she’s sleeping.  Just a brief scare.  No reason that tomorrow we can’t pretend to have a healthy little girl again.

I read some Bhuddist quotes today:

“He who lusts after people has woes; he who lusts after no one has no woes.”  

Would I describe my love for my daughter, my desire for her life and wellness, a lust?  Well, yes.

And…

“Hope and fear cannot change the seasons.”

I have hoped for her recovery.  I have feared for her death.  The  transfusion cycle continues.

And…

“If a problem is fixable, there is no need to worry. If the problem isn’t fixable, then there is no benefit in worrying whatsoever.” 

A quote I need to somehow tattoo into my consciousness, as I administer various treatments and rack my brain for some elusive missing link.  

(Sorry about not attributing the quotes properly, but as they are all from elevated Bhuddists, they should be above ego trappings and probably don’t care.  And I am ready to be done with this post and give the little one a bath.)

Besides, you get my point.

Just when I think I’ve got this down, that I’ve become accepting of her condition and loving of our journey, hard as its been, that I’m yet another impossible step closer to Zen, and grateful for this incredible challenge to my own becoming, awakening, and enlightenment, she breaks out in rash and I have to stop myself from running screaming, sobbing, into the winter night.

But I also read something today about terrorists, and how they supposedly love death more than the rest of the world loves life.

And I know one thing:  This carnival ride is crazy.  And the belly-drop parts have always made me sick.  But I wouldn’t trade it.  I wouldn’t forgo this experience of the whirling lights – the tastes, the sights, the sounds, the touch of this carnival, both glorious and nauseating – for anything.  I’m ever so grateful for this chance to be here.  To know Adahlia.  And to explore this carnival with her dad, and see if we will lose all our tokens, or win a stuffed bear.  Either way, when it’s over, I hope we will laugh.

Because I love life.