Today, I take a moment not to curse and mourn my daughter’s bizzare blood disorder called DBA.  Today, I take a moment to be thankful for it, and for the fact that my daughter has required blood transfusions since infancy to stay alive.

Here’s why:

1) Everything is more precious.  You know the saying, you don’t know what you have ’til it’s gone?  Well, we are human.  We take things (and people) for granted. Even children.

DBA means that there’s absolutely nothing guaranteed about tomorrow.  Every couple weeks, I get an unmistakable reminder of that fact.  One minute we will be sitting down to a routine ol’ family dinner, and the next, I’m calling the emergency on-call line at the Children’s Hospital Center for Cancer and Blood Disorders… a name which inspires terror into the most stalwart parent’s heart.  (You know, I think it should be renamed.  I vote: the Children’s Hospital Center of Ultimate Love and Support.)  With so many complications to DBA, I am acutely aware of the precariousness of my child’s presence in my life.

So I can’t help it. Every time we go to the creek, I snap a picture of our adventure, because a little voice in my head will suddenly pipe up that it might be our last.  Every time she wants to dance, I dance, at least a little.  When she asks me to sing, I sing, even if strangers are walking by.  And darn it if I don’t have a huge, under-bed Tupperware full of nearly every scribbling (even on napkins and menus), dabbling of paint (on ceramic, canvas, and paper) and toilet-paper-roll dragon we’ve ever created.  I just can’t throw the damn things out. And truth is, I need to upsize or get another container soon.

2) I’m a better mom than I ever would have been.  Now don’t get me wrong: I probably would have been a pretty great mom anyway.  But, if being a better mom means being more patient, present, and nurturing, then I have DBA to thank.

Patience: I am more patient with my DBA daughter than I ever imagined possible for me.  I am kinder. More compassionate.  More understanding.  More supportive.  Gentler in my reprimands.  Calmer when she throws a tantrum and gentler when she finds her way out of it.  Now, I’m not perfect.  But I’m capable of vastly greater patience than anything I could have imagined.

Nurturing: During Adahlia’s first 18 months, I was a breastfeeding champion.  I worked my poor breasts until aching exhaustion (sometimes forcing myself to wake up to pump twice a night) to restore my milk supply after it nearly dried up because she was too weak to nurse, and I was too sick to make much milk.  In the end, I managed to breastfeed her for over three years, making me something of an expert on restoring and increasing milk supply.  I still co-sleep with her, because, of course, it makes sense that a vulnerable child is terrified to sleep on her own. (I know plenty of adults who are terrified to go to sleep on their own and wake up spooked of the dark. So why do we expect children to sleep alone?)

Presence: I have spent more time with my daughter than I ever would have if she’d been healthy.  If she’d not had DBA, I would’ve gone back to finish my doctorate 2.5 months after her birth and opened a clinic, which would have been great, but which would have also translated to more time distracted by (and focused on) things other than her, and the simple enjoyment of our time together.  I don’t regret a second of my time spent with my daughter.  I can finish my doctorate and start a clinic anytime in the next five years.  I cannot spend time with my daughter as an infant ever again.

And it’s more than physical presence: when I’m with my daughter, I make a concerted effort to be mentally, intellectually, emotionally, and spiritually present, not just physically there.  I don’t talk on the phone a lot or go on lots of playdates where I spend more time talking to the other mom than playing with her.  I try to ignore my emails and texts and messages and the Internet and Twitter and Facebook and yes, even this webpage.  

I engage with her.  I try to get her involved with cooking or organizing or whatever my chores are for the day.  I read and play.  I do my best to explain things from multiple perspectives or admit that “life is strange and I don’t know,” instead of giving a brisk and easy answer, as if I’m some sort of authority on this baffling planet, like: “because I said so.” Because of DBA, I have had to explain very tough things, like why I keep taking her to the hospital to let people hurt her, so I know (hope) someday I’ll talk with her openly about sex and drugs, the allure of danger, the illusion of safety, and what it really means to be safe and secure and free in this world.  

DBA demanded that I re-arrange my priorities.  It forced my high-achieving, ambitious, and fear-of-failure self to stop being high-powered and slow the heck down, despite the fact that our economy pretty much requires two breadwinners for all except the wealthiest couples.  (That’s something that needs changed.  Women should be economically free to raise their own babies if they want to, not be forced to hand them to a stranger for their most formative and vulnerable years.)

If it weren’t for DBA, being a mother would have meant that I’d become a one-woman balancing act.   I’m sure I would have done a good job, and it wouldn’t have destroyed my daughter.  But, because of DBA, being a mother means I am all about my daughter.  Period.  I wouldn’t have done it myself.  DBA forced me to do it.  For that, I’m eternally grateful.

3) DBA is challenging me to grow stronger than I’ve ever been.

Now, I’m not there yet. I’m still working on regaining strength, especially physical and energetic strength.  But soon, I’m going to be stronger than I’ve ever been, and I owe a lot of thanks to DBA.

DBA has helped me get in touch with what it means to be a Mama Bear.  To stand up for myself and my daughter.  To get what we really need, instead of what other people think we need.  It is not actually something I was conditioned to do well.

Not that my little bear isn’t tough.  In many ways, she can handle herself.  But, like a mama bear, if folks dare to step between us, or threaten her in any way (physical, emotional, or psychospiritual), they are confronted with the likes of which they’ve only dreamed out… and then woken up with pee-pee on their sheets.

Truth is, I am ruthless when it comes to my daughter.  And I don’t feel bad about it.  In fact, I usually laugh about it.

4) Because of DBA, my relationship with my partner (her father) has been pushed, cracked, shaken, sledge-hammered, shredded, and otherwise thrown into the fire.  What has been forged is true.  The process has taught me more about self-love, love for other, partnership, and co-evolution than I could have ever imagined.  This can’t be measured.  It is invaluable.  And it can’t be obtained if you don’t go through the crucible. Again, I’m eternally grateful.

5) DBA has forced me to internalize the important things, the things I believe we come to this planet to learn.

Things like what it means to live in peace and acceptance of yourself and the other, without letting the other destroy you, or feeling like you need to destroy yourself.

That I am creating my own legacy of love, and that with fearless dedication to honesty, kindness, and hard work, I can break free of ancestral patterns, and make my legacy of love grander than anything I knew or can imagine.

That unaware, I have no say in how I spend my energy.  It is spent according to the drives and pulls of my conditioning, unconscious beliefs, programming, emotions, et cetera.  Aware, I have more choice over how to spend my energy and time.  I’d rather spend it in the present moment, in love and creation, with my child who may not be here tomorrow, than in bitterness, resentment, gossip, drama, and worry.

That people come and go.  I come and go.  Understanding changes enemies to friends, and the lack of it changes friends to enemies.  Separation isn’t bad.  It’s healthy.  It’s a season, like winter.  It can be survived.

And that someday, I will be physically separated from my daughter, the little spirit who has taught me and awed me with so much.  And yet, since separation is never the end of the story, and all things are circular, I know I will meet her again.

I will try to make our inevitable separation be a long, long, time from now.  But if it happens sooner than I’d like, because of cursed DBA, I’ll have DBA to thank for the fact that it was so incredibly sweet.

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.

It’s the day before our billionth transfusion and I am warming my back to the Colorado sun, sitting on a creek bank of river rock and fallen leaves, as Adahlia tosses stones into the water with a kerchunk or ploip, depending upon the size of the stone and the depth of the water.

I don’t really know if she needs a transfusion.  She didn’t want a finger prick test.  It’s been four weeks since her last transfusion.  In a choice between the sterile forced heat propelled from a hospital furnace or the living forced warmth of sunlight blasted miles across space, I hesitated only a second before exchanging hospital for creek.

She picks up a stick and dips it into the water, taps the surface a few times.  It’s her fishing pole, she informs me.  Then she wanders a bit down the creek from me.  After a few moments, I look over to see that she has taken off a shoe and a sock is walking back towards me, leaves crunching under her remaining shoe.  I’m betting her foot fell in.

But no.  When she hands it to me, the sock is dry.  She is just bringing her stuff to me to hold because she wants to puts her foot in the water.  I take off the other sock and shoe, roll up her jeans to just below her knees, and she hobbles carefully to the edge of the water.

I am glad to be hearing the sound of it.

We saw a little snake last time we were here.  He dove desperately into the creek and swam like mad for the other side.  It’s a good day for snakes, warm like it is, but we haven’t scared one yet.

I brought a piece of pumpkin bread we made together yesterday and now she is eating it.  Licking the aluminum foil.

Probably shouldn’t let her do that. But eh.  

It’s a rare peaceful moment prior to a transfusion.  Opposite of what one might think, she’s usually bat-shit crazy right about now, hours away from it, and anemic.  Last night, she was super hyper and difficult right up until she passed out. There was no dietary or obvious reason for it.  

But she’s always been like that.  She’s doesn’t get sleepy and complacent when she’s severely anemic.  She gets firey and manic.  When she was a baby, she would just start screaming and wouldn’t stop for hours (unless someone other than her dad and I was present.  She got quiet then).

No, it doesn’t make sense from a western biological or linear perspective.  But from a Chinese medicine or circular perspective it does make sense.  Yin (blood) is necessary to root or hold the spirit (yang).  It’s the container.  Without adequate container, her spirit is an untethered fire and acts as such, flitting and flaring.  

And from a psychological perspective, it makes sense too. When anemic, she feels rotten and she wants us to do something about it, but doesn’t know what.  She doesn’t feel safe around non-family, so she pulls inward.  But she feels safe when it’s just us, so she screams and refuses to listen and even bites and pinches, letting us know something is wrong.  But there is nothing we can give her, nothing we can do to help.

I brought some books and tea with us, too.  Tomorrow will be sad and painful and demanding.  Today there is incredible tension, like the night before an anticipated army attack, or the day before a board exam.  At this point, you’re either prepared or you’re not.  You don’t know how you’ll perform.  When the grenades and flares start flying, you’re just going to have to put your rifle to your cheek and scan for targets.

Last transfusion, I didn’t perform to my expectation.  I started tearing up as I sang Adahlia Twinkle Twinkle Little Star, as the anesthesiologist put her to sleep for her MRI.  

But, I’ve decided to cut myself some slack due to poor tactical planning.  I should have never attempted to sing that song.  I should’ve chosen something different.  For example, last March, for Adahlia’s first MRI, I had sung The Wheels on the Bus.  That  was tough, but I managed to smile through the entire song, not bursting into tears until after she passed out.  

But it’s impossible not to cry if you’re singing TTLS to your kiddo as he or she is put under.  It might seem an appropriate selection, but it’s just terrible.  If you do it anyway, and your goal is to help your child feel that everything is ok because you’re ok while she is being administered gas, you are setting yourself up for failure.

Maybe tuck that away somewhere.

I’m used to this by now, but I still don’t like it.  Even professional concert pianists and ball players get nerves before the show, the game.

And I have no idea what level of challenge I will face tomorrow.  Will she need one poke for the IV?  Will she cry and scream and resist?  How about my talk with her primary hematologist?  It is always like chess.

Like many professional performers, I don’t particularly want to talk to anyone right now.  But I do want to sit by a creek with my back to the sun. To let the water rush past with its wisdom while I soak up the sun’s strength.   

This too will pass, these emotions will pass, this stress will pass, the creek says.  Let me wash and tumble this all away.

Here, the sun says, take my warmth.  Absorb it and be strong. 

And I’m struck by an amusing and serious truth with many layers of meaning:

If it weren’t for Nature, I’d be dead by now.

My daughter wants us to go down the stream to where the water runs over rocks, creating rapids.

“Let’s go to the deep, deep part, the deep, deep part,” she says.

Indeed.