Wanna know how financially devastating it is to have a kiddo with DBA?

Well, I accidentally let our Medicaid expire on May 31st. I now have 4 bills totaling $6,417.05 from ONE day at the hospital, kindly requesting immediate payment, as they have generously extended a 35% discount due to lack of insurance.

Yup, that means the hospital bills $9,872.38 for one day of necessary, life-preserving care for my kid.

Of course, that’s not what we (or our insurance) is billed EVERY month. This month we also had the MRIs under sedation.

For each of the other 11 months out of the year, if we didn’t have Medicaid, we would only be billed $2,200.25 (and that’s with the 35% discount).

(Well, okay. More than that. That’s only the amount for the blood transfusion, and doesn’t include our other random necessary care, like hemoglobin finger-prick tests to determine if she needs the transfusion yet.)

I qualified for Medicaid one year after Adahlia’s first trip to the hospital. This happened after I had spent four years just racking up debt in grad school (getting a 4-year professional medical degree so I could help people) with no substantial income.

This is why everything I had saved from living very scrupulously in my 20s during my military service (upwards of $40k) was instantly wiped out within 2 years of her birth.

And why, even as I have been earning a little more every year, we parents of kids with DBA have to adjust to a new idea of what both our present and future look like. Because oh yes, as I earn more, I am expected to pay more and more of those expenses every month.

In other words, I actually gain nothing by working, except the satisfaction of contributing to society. Which is cool. I love to work. I work because I like to contribute to life. But unlike most people, when I work, I don’t get to watch my bank account grow, or feel “more secure,” or plan a remodel, or take a trip to a wonderful exotic location. I’m in more debt than… I don’t know what. And quite honestly, if she is never cured, I’m not sure how that’s ever going to change.

I’m not writing this post to complain. Some conservatives would argue that my child is a burden not just to me, but also to society, and should have been allowed to perish. Liberals would say that such ideas are an outrage, and we should have free, quality healthcare for her, so that our family doesn’t have to forfeit… well… quite so much.

Truth is, my little one is very intelligent, very creative, and likely will contribute a great deal to society. Will it be worth all the investment society is making in keeping her alive? I’m certainly not the person who can make that call. But I do know I’m lucky to have her at all. And it still blows my mind that we have a house to live in that she can call her home (it was truly the hand of the Divine — by all rights, we should be living in a Section 8 apartment).

Don’t worry — everything’s okay. I got the Medicaid reactivated last Friday, and I’ll be making calls all this week trying to get all these bills sorted out. And I’m sure it will.

I’m not complaining. I swear. And I certainly don’t want anything. Not pity. Not money. These are just the facts.

And I just find them a little mind-blowing. I just think its kind of crazy that I suddenly now owe over $6,000 to have my child be “topped up” with blood so she can live another month, and checked to make sure she won’t die a silent death from iron overload.

And every month, to keep her, if Medicaid went away or I started making MAD cash, it would cost me over $2,200. (Oh wait. These figures don’t include Exjade, her chelation medicine. I haven’t yet been billed for that. I think her Exjade would cost about $500/month without insurance.)

So altogether…let’s say I need to budget $3,000 each month for 11 months, and allow for one “mad month” of nearly $7-8k in medical expenses. Indefinitely. For her life.

How much would I have to earn in order to pay for her as well as clothes, food, shelter, transportation, a minimum school loan payment, and utilities? And… just for kicks… maybe some of the life perks that I used to save up for, like travel or investment? (In my 20s, I used to put $300-500 a month into investment funds.)  Anyone good at math?

If it weren’t for Medicaid (and for Joe putting the roof overhead and food on the plates) I would just be standing on the hospital sidewalk with a pale, limp child in my arms and a lost expression on my face, waiting for someone to do something out of the kindness of their hearts, or for her to die.

I just think its all just a little… amazing.

****

This post was originally published on Facebook.  However, I migrated it over to WordPress because I think its something the general public needs to be aware of.  Why?  Because many people are very opinionated about things like healthcare, and welfare, etc.  And I think that perhaps they are so opinionated because they don’t actually know — and by know, I mean live — a life that needs paid healthcare.

Personally, I have no opinions on healthcare.  I don’t have the luxury of being able to sit back, un-involved, having a theoretical opinion of what people do or do not deserve.  I don’t claim to be so smart as to be able to say what should be.  I just know what we need.

So, personally, I’m just glad that what is, is.  I’m just grateful that Adahlia and I live in the precise time and place that we do, and because of that one amazing, simple fact (that is certainly not something I arranged, and belongs only to the goodness of God), we have Medicaid, and a roof, and other essentials, and we are making it work.

Well, we are here at the hospital again, just a mere 3.5 weeks since the last transfusion.  Adahlia has her IV in place and we are waiting for blood to arrive, so we headed down to radiology to watch fish swim.  This hospital has a couple really nice fish tanks – the one in radiology has a saltwater tank with several fish straight out of Finding Nemo, and the one near cardiology has several larger fish… I think they are freshwater.

It says something about your life when you know which departments to go to in the hospital to find fish and pass time.

Adahlia had one of the worst IV placements in a long time.  Not through any error of the nurse administering the IV, but because we first allowed a phlebotomist to do a finger prick test to ensure she needed blood.

The phlebotomist was one we knew from the northern children’s hospital location.  It was a pleasant surprise to see her… Even though it only serves to illustrate how often we frequent these facilities.  She performed the finger poke without incident, and results came back as I expected: 7.2 Hb.  

Which of course, requires transfusion.

But Adahlia was under the impression that by doing the finger poke she was getting out of the IV.  (Because usually we get a finger poke to check her Hb when I suspect transfusion won’t really be necessary.  The northern campus location is 30 minutes closer than the main campus, so we go there for a quick Hb finger poke check, which makes a difference when you’re doing this every few weeks and you’re trying to preserve your kiddo’s veins.) 

The nurses wanted to be sure she needed a transfusion before placing an IV, and when I asked Adahlia, she said a finger poke was ok.  I had thought I communicated properly, but in retrospect,  Adahlia clearly did not quite grasp that the one procedure might lead to the other – she thought it was an either/or situation.

So as the nurse started setting out the tourniquet, she suddenly  threw up quite a fuss, screaming that she she didn’t want them both on the same day, and of course the nurses are busy, and I didn’t feel right asking them to come back later, so we quickly did it anyway.  

The IV itself was flawless.  After, I tried everything to calm her, but she was clearly wounded by having a procedure done against her will, when normally she agrees bravely to transfusion.  “I didn’t want both in the same day,” she sobbed. I offered to take her to see the fish, and she replied, “they might make me happy,” only to start wailing again.

I continued to hold her and explained how if we didn’t do it today, we’d have to come back tomorrow, and she’d miss school, and Friday is dance class with Miss Rachael.  She seemed to internalize the wisdom of this and then broke down in tears again, and it was only until I started crying too and told her that I was sad, also, by how it went, that she dried her tears and agreed she was ready to go see the fish, because we both would like them.
The biggest takeaway here is how important it is to honor a child’s will and sense of self ownership in medical procedures.  Adahlia has always faced her transfusions and finger pokes bravely… But then, I always consult with her about it,  explain why I think it’s necessary or best, and give her time to digest it.  Then, when I ask if she is ready, she almost always says yes, and doesn’t cry until the actually IV, if at all.   This allows her to feel respected, that she has some measure of choice, instead of simply being violated.

You might think this is obvious.  But many of us are too busy and wrapped up in what “must happen” to take the time to explain things to our kids.  Or, just as bad, we fear their reaction and aren’t equipped ourselves emotionally and creatively to handle their refusal and fear, so we spring “bad” things on them as a surprise.

Is it any wonder so many kids grow up distrustful and resentful of authority?  Of their own parents?

Remember, kids live in a world of wonder, where they get lost in the magic of a bug or, as with Adahlia yesterday, the “beauty” of a store. (Adahlia complimented the owner of the bulk foods store, “what a beautiful store you have!” quite a few times.  It was sweet.)

Kids need time to adjust to transitions as simple as getting in the car and going someplace else, and much moreso when they must get vaccinations or endure other unpleasantries.

After all, think about it:  they pretty much follow an adult around all day, being pulled in this direction and that, and rarely does the parent tell them what it’s all about or why they are going where they are going.

We wouldn’t expect a spouse or lover to go along with our daily to-do lists without an explanation, why do we expect it of our intelligent kids?  Don’t you appreciate knowing what you’ll be expected to do tomorrow, instead of having someone redirect you every time you pick up your book or sit down at your computer?

Today was a perfect illustration of how preparing (or not preparing) your child for a painful or unpleasant procedure can make all the difference in his/her perception of trauma.  And today, sadly for both of us, was a traumatic day that could have been avoided if Id been more aware of my daughter’s comprehension of the situation.

Of course, readers of this blog will wonder why Adahlia went only 3+ weeks between transfusion.

The answer is that she had a very nasty GI viral infection for about 7 days after her last transfusion.  It is typical for the spleen to chew up transfused RBCs  in addition to the other cleansing work it’s doing in the blood during such acute infections.

Hopefully, after this transfusion, she won’t get sick, and we will get a better idea of how she is doing in terms of DBA.  And hopefully, we won’t have to come back for at least 4-5 weeks, or maybe even 6.  

But with this disorder, who knows?

We might as well just draw on our faces with markers, and dance to the imaginary animal parade (which is what Adahlia and I did last night).  

Nothing is guaranteed… Everything is possible.

And when phlebotomy gets you down, find a fish and feel better.

Love to you and yours.

Driving Adahlia to her preschool this morning… (we typically walk or she rides her bike, and it would’ve been fabulous cool-but-sunny winter weather for that but we’ve been sleeping in and class had already started… not that anyone really cares because there’s not exactly an intense curriculum, but still…)

… she gazes out the windows, first one side, then another.  We’re moving pretty fast.  

“Is it almost nighttime?” She asks.

“No, see the sun there? It’s coming up.  We are headed east.  When we see the sun this way we know it’s morning time.  When it’s close to nighttime it’ll be behind us – that way – and then we know it’s almost night.”

“The sun is going higher and higher?” She asks.

“Yes, it goes all the way over our heads, and makes the day warmer.”

Adahlia is pensive. I take a quick right turn.  We have to go around a big park.

“This place might be crazy!” Adahlia says.  I glance in the rear view and she is looking out the windows, her head on a swivel, taking in trees, buildings, people, buses, and cars. “This place might be Huge!”

I laugh, passing a bus loading up passengers.  “It is pretty crazy! You mean Earth?”

“This place might be HUGE!” Adahlia repeats, raising her arms above her head in a sweeping arm gesture. I make another rolling stop for the next right turn – we’re almost there.

“It is huge, baby,” I affirm.  “There’s so much to see here.”

Blinkers left then right, I slow and arc onto Terry Street.  Our car’s momentum carries up the preschool driveway.  

“I want to live in all these houses,” Adahlia announces.

I open the door, unbuckle her, and help her out of the car.  She looks at the row of craftsman houses, some of which are homes and others have been converted to businesses, like her preschool.

“I want to live in all these houses,” she repeats.

I giggle.  “I know, I enthuse, “there’s so much to experience!”  

I reflect for an instant on this little mirror by my side.  When I was little, not much older than her, I thought it unfair that we had to pick a future.  I wanted to be so many things. I did not want to have to choose, to be locked into anything.  I wanted to experience many careers and lives.  
When I break my reverie, I acknowledge the face value of her words.  “We will live in many houses, love… when we don’t have to do so many blood transfusions, we will travel lots and lots and live in many, many houses.”
Adahlia holds my hand as we walk up the front steps.  “All these houses,” she repeats.

And this time, I allow myself to bask in the depths of the message.

I want to live in all these houses.

We start out unafraid of death, unattached to our particular lives, ready and eager in a state of wonder to live.  To experience. No experience is necessarily better than the others. They are all different, all valuable. All wonderous.  All adventure.

Then, at some point, we identify with the body we live in and the stories it experiences.  At this point, we do one of two (or a combination of) things:  We reject the current body, becoming ashamed or unhappy in it because it has become a storehouse of trauma, or we become too attached to the current body (and life) and lose perspective on the validity and beauty of living and seeing from a different set of eyes.

We become lost in one story, the story of this one lifetime, and lose sight of the possibility, grandeur, and truth of the others, especially when woven all together.

I want to live in all these houses.

Yes, yes I do.

I want to live in all these houses.

So says the Spirit of the Body.

I have a problem.

I have a very scientific brain.

So it still astounds me that my daughter asks for Shonishin. That it immediately calms her. That it changes something in her.

It is nothing more than tapping, stroking, and what we call “magic” (light pressing of certain acupuncture points) with one of two copper tools.

Yet, it changes something in her.

And she asks for it.  Demands it even.

I oblige.  And as I stroke her skin, I wonder:

What is happening?

Yes, I know the theory.  The theories.  Yes, I have been witness to and felt energy movements.  Yes, I know it changes heart rates and respiration and hormones and chemicals and cells.  Yes, I know it’s real.  

Yes, these things still astound me.

I grew up Catholic after all.  Upper middle class. Suburban.  Educated at a prestigious military engineering academy, for Pete’s sake.  Drove an old Mercedes in high school and bought a used, silver Celica in college.  Designed scientific research projects and tested digital interfaces with military applications.

And so I touch one tool to one point, and then bend her leg and touch it to another, and when I stop to dress her because she’s fallen asleep (much like when an adult falls into the “acu zone”) and she wakes and begins to cry and complain, I tap gently along her hairline and temporal lobe with my fingertips this time, not tools, and she’s out again.

What is happening?

Good question indeed. 

What is happening right now, this rise in integrative and functional medicine? This surge in consciousness?  This coming together of warring and opposing viewpoints?

East meets West.

When cold air meets hot air.

Body meets Spirit.

What is happening, indeed, when two beings vie for the same niche? The same body? When the line between self and other begins to blur?  When it is called love in one breath, and self-destruction in the other?

When autoimmune disease is connected to viral invaders and leaky guts and dysbiosis and mutated genetics and brain chemical imbalance?

I have a problem.

Several, actually, but another is that I have a rather poor sense of loyalty.

It’s true. I’ve never been loyal. Fond, yes.  Self-sacrificing, definitely.  But I’m not loyal.  

I’m too pragmatic for loyal.  I am an observer.  Always have been.  And any observer knows that there is much too much to see to ever align oneself with any one or any thing.

I see too much.  But this isn’t to say that I judge harshly.  Or that I’d ever sell anyone out.  (But I might.)  It’s to say that I withhold judgement.  That I understand motivations.  Or to say that I see all of you, including your dirty, selfish, mean parts, and if I choose to be around you anyway, it’s because I like you anyway.  Not because I’m blind.  Not because I’m in your camp.  Not because I’ve drank your Kool-Aid or believe your hype or self-promotion.  I just still like you.   Or I happen to be here with you.  Or there’s no where else I happen to be.

This is a good trait for those who value honesty. For the rest of the world, it makes me rather undesirable.

What I mean by this is that I’ve never been particularly driven to be loyal to someone simply because of who they are: teacher, parent, mentor, sibling, or friend. 

It also means I’m not disloyal either. 

I guess it means I’m not super attached.  I like you. Your opinion is interesting.  I like that person, too.  His opposing opinion is interesting, too.

Can I be hurt?  Sure. Deeply.  By those who I thought cared for me but show by their actions that they don’t or didn’t.  

But I’m not talking loyalty like the steadfast allegiances of love.  I’m talking loyalty like the blind allegiances of clans.

So what do I follow?  What am I loyal to? 

I’m not sure.  Some might call it God.  Or intuition.  Or a feeling.  Or my gut.  But it’s all of those things and none of those things.

Someone says something and it either sounds like truth to me or it doesn’t.  

For lack of a better term, it’s an energy.

That’s what I listen to.  

(Which brings up another problem, because that’s not very scientific.

Or is it?

Depends, perhaps, on your definition.)

East meets West.

One body, how to unify a mind?

So much of the world is blah blah blah, and we could be talking about God and it’s nothing or we could be talking about shoes and it’s divine transmission… It has nothing to do with what’s being said.

It has everything to do with what is being said.

(Yes. I realize I used the same words.)

Because it’s not the style. The style might be fun or amusing or angering or whatever.  But it doesn’t matter.  The substance does.

And I’m not talking about morals or a platform or about preaching.  The substance I’m talking about can’t be pinned down.   

These days, I’m amazed at what’s being said.  

About the herbs my daughter tests positive for.  About this journey we are on.  

I say all this because I’m not loyal to my Chinese herbalist teacher.  I do not blindly follow him.  I test his theories.  In fact, we test them together.  I see that his theories hold.  They are confirmed.  

No, I am not loyal to my teacher.  I see him work.  And what I have seen has caused me to deeply respect him.  I am grateful to him and to existence (God) for placing me in his path.  I would, in return, help him if I could, the way he is helping me to learn, to see.

Because if there is anything important to an observer, it is being able to see.  

I am the watcher.  I’m not in control.  I have little money, little experience, and little sway.   

I do my best.  I come forward.  I administer what I know.  I listen to what comes my way.  I discern, not judge.  It passes through me like a sieve.  I depend on no dogma, no doctrine.  I keep what may be useful.  I keep only what “rings” true.  

I wait and see.  And what I see is amazing.

My problem just may be the solution.

My problem never existed, after all.

Blessings.

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.

The phone didn’t ring or vibrate, but I walked over to where it sat on the kitchen ledge, anyway.  My partner rolled into the climax of his post-work-week story, unaware of the 6th sense that had drawn me away.  I glanced down and stopped breathing.  It was 5:21 on a Friday, and “Colorado Children’s Hospital” was scrolling in illuminated text across my phone’s darkened screen.  It could only be Adahlia’s hematologist.

I hesitated.  It might be better not to know.

I snatched the phone up before the call went to voicemail.

“Hello, this is Erika,” I said, leaving my partner and the kitchen without a word or gesture.  I stepped briskly towards the front porch.

“Hi, Erika, this is Dr. N.”

“Hi, yes, good to hear from you.”  Was it?   “Are you calling about the MRI results?” I continued.

“Yeah, I’m glad I got ahold of you.  I just got back from radiology and discussing the MRI.  I wanted to catch you before the weekend.”

“Oh, okay,” I said.  He was discussing the results?  My casual tone belied my anxiety.  I pulled the phone away from my ear to make sure the volume was up.  I could hear Adahlia shrieking as she wrestled her dad.  The screen door shut behind me.  It was just me and the news.

“Well, there’s some good news, and news that we can’t really trust right now, so I just want to warn you about that.  We need to have it re-analyzed.”

“Okay,” I agreed, my heart pounding. I poured my attention into the phone as intently as as trapeze artist stares towards his partner’s outstretched arms.  Would his words catch me?

“The good news is that the liver’s looking good.  If you remember – I’m sure you remember – her liver iron overload was measured at 9.x.  And the lower the number, the better for the liver; the heart is the opposite.”

“Right, yes.”  The good news is the liver?  Oh no….

“Well, the liver imaging came out really clearly, so there’s no doubt about the new number, and its 6.x.  So that’s really good, and that’s something we can point to and say, ‘Alright, chelation is working.’  I think it’s really positive; its a really strong trend downwards.”

No! The heart’s not better?!  Focus.  Focus on the liver.

“A drop of 3 points in 6, 8 months is on par with what we might expect on this dose of chelation? Or is it better than average?”

“It’s good.  It’s on the high end of what we could have hoped for.  We’re definitely on track getting the iron out of the liver.”

I exhale.  “That’s great,”  I say.  And I mean it.

“It is good.  I’m really happy with it.  It’s a great decrease, especially for an oral chelator.”

Because the intravenous chelator works better.

I take a breath.  “Well, that’s great to hear.  Especially since the pictures were so clear, so we can be confident in it.”

“I agree,” he says.

He takes a breath.  I don’t.

“So, the heart.  As I said before, I’m not as confident in the results on the heart, because the pictures were a little blurred again.  Last time, they gave us this really low number for the heart, and then, because it was blurred, they said it maybe wasn’t quite so serious as they first said.  So we went from considering it a RED situation, to well, a little less red.”

“Right, it was 4 milliseconds.”

“Right.  So potentially really serious.  So, I don’t want you to get too excited, because maybe this isn’t quite as good as they are reporting.”

Wait… excited?  Good?  

My inbreath catches and comes in tiny spurts, like a little songbird’s heartbeat.

“They’re saying that its a normal heart.  And that’s just not believable.”

I might fly away.  I step quickly down the front porch steps, as if pulled by a rope, as if to seek better reception.  But I had heard him just fine.

“Normal?”  If word selection is a game of pick-up-sticks, an echo is all I can come up with.

“Right, basically, they are saying that there’s no iron it.  Which you and I know, given her last images, is just not very likely.”

I surge joyfully upwards.  Like a hot-air balloon, I need something concrete to tether me.  “As in, the report came back above 20 milliseconds?”

“Yes.”

I want to scream and cry and jump and laugh.  But I force my smile together and draw my mind through my emotions like a laser, like the West-Point-trained military officer I used to be.  I demand answers from my people.

“Are they aware how bad it was before? Have they seen the prior images? Have they compared them?”

“That is why I went down there.  I just got back from talking to them and showing them the last report.  They are going to re-analyze the images and re-run the calculations.  There is blurriness to the pictures, and I’m just not comfortable with these results.  The situation in her heart is most likely improved, but, not to be the negative guy, I just don’t believe that its normal.  Its just not believable.”

Because the heart is the hardest organ to get the iron back out of.

A moment of silence passes between us.  I am walking down the sidewalk, headed towards the busy avenue.  I stop.

“So.” I say, choosing my words carefully. “What you’re saying is:  The worst case scenario is that things are better.”

He laughs.  And it is an amazing laugh.  How often does a pediatric hematologist laugh this sort of laugh with a child’s parent, a laugh without sadness or edge to it?  “Yes,” he laughs, “the worst case scenario is that things are better.”

My eyes tear.

It is the first truly good news, the first real positive trend, the first actual news of improving health, with real numbers and real time behind it, that we have heard in – literally – 3 years.

“Well, that’s great news,” I say, and my voice has a smile in it.

“Yes, it is.  Even if her heart’s not all better, I think we can all be really happy with how far things have come.”

I consider all the moxa I burned over the summer on her body, when it was too hot for her to sleep with a shirt on in our wonderful, non-airconditioned, cabin-like house.  The points I had chosen for her heart.  The mystical points just medial to her scapula, indicated for restoration of “vital organs,” ancient points discovered by ancient monks, points that I poured over in my texts and spoke to Joe about in the heat of summer evenings.  I consider the moxa I had recently applied to these same points through her pajama top, now that it was cooler, using the Tiger Warmer tool.

I consider how I have finally reconnected with my Reiki Master lineage, whom I had lost touch with ever since my own Master died, and how I had appealed to them to send healing energy on my daughter’s behalf, to help her body get the iron out of her heart, to help it make it’s own blood.

No, I didn’t think moxa and prayer was fully responsible for getting the iron out.  But I did think it was possible for the moxa to direct the energy of her body to her heart, and draw the chelation medicine towards her heart, and help her body focus on clearing and healing it.

“Well,” I say, pivoting and turning back towards our house, “I know its not really believable to you, but it just might be possible.  I’ve been doing some very focused work on her heart from the chinese medicine perspective.”

And there are lot of people praying for her and sending her light energy.

“I know you have.  And this speaks to how much you’ve done, and to patient compliance with the oral chelation, so I think its something you can be proud of.”

It’s so nice of him to say these things.

Except we’ve been compliant with the oral chelation since we started it, since she was 18 months old, and her iron overload only got worse.  So it’s not about patient compliance.  Perhaps, you mean, the importance of proper dosage.  Perhaps the initial dosage was too low.  Perhaps, as some suspect, too low of a dose actually leads to increased iron deposition, instead of iron chelation.

I’ve made it back to the front porch.  Adahlia is standing there, picking leaves off of the vine that winds through the railing, and her dad is looking at me with interest.

“Well, I want to keep her on the oral chelator at this dose.  Until the liver is also clear, until we see that her organs are completely clear, I want to keep her on this dose,” I say.

“I agree,”  Dr. N. says.   “I don’t want to make any treatment decisions – including any decisions about steroids – until we get better results back on the heart.”

Ah, I think.  But I made an agreement with myself, and with Joe, just a couple nights ago on this very porch, before we knew the results of the MRI. When Joe had asked me, hypothetically, what we would do when we learned the results.

I had announced: “If her heart is the same or worse, we will do a steroid trial.  No question about it.  We have to.  And if her heart is clear, we won’t.  We will keep transfusing.”

He had shaken his head.  “But,” he had scoffed, striking a stick against the railing, “that won’t be the case.  It’ll come back saying something in the middle.”  Something requiring a tougher decision.

“I know; you’re right.” I had sighed, looking out at the empty street.  A few yellow leaves blew by.  Nothing has been clear or easy for us.  Why should this be?  “We will just have to make that decision when we get the news.”

And as Adahlia likes to say:  And now, here we are.

Dr. N. doesn’t know it yet, and he won’t be happy about it, because he wants to try the steroids.  But as long as her results for her heart remain negative for iron overload, we aren’t going to do a steroid trial.  Her recent MRI shows an unbelievable result.  It is so unbelievable I take it as a pretty clear sign from Spirit that we should keep on our trajectory, that we should keep doing everything we can to find a cure from a natural and oriental medicine perspective. Steroids are still not right for us, at least not right now.

After all, if the moxa worked for the heart (and I really believe the moxa is primarily responsible for helping the iron chelate it), it can work to heal the bone marrow.  The trick will be, as it has always been with acupuncture, to find the points that will work.

After hanging up the phone with Dr. N., thanking him for calling us so late on a Friday afternoon, I relay the news to Joe.  He sits very still in the motionless rocking chair while I speak.

When I am done, he doesn’t laugh.  He doesn’t even laugh when I relay the bit about the worst case being that things are better.  It’s been too much of a roller coaster.  He can’t laugh.  He knows that Monday he may find out he should be crying instead.

And truth is, I can’t really laugh either.  Not lightly.  Not freely.

I can smile, though.  And break into spontaneous dance.

So I do.

the day before she turns three.

And I wonder where the time has gone.

I already miss the baby I held.

And I mourn the fact that so much of our time was held in tears and fear and screams and stress and worry; medical procedures and IV pokes, herbal and pharmaceutical medicines, dissolved and ineffectively masked in juices and milk and ice creams and pleas to “please, please take this medicine, we don’t have a choice, this is the way things are, I am trying to help you.”

New baby joy? Ours got snuffed, scattered and drowned, became an ember, a kernel, that we blew on and coaxed and refused to let die despite the fact that everything we had hoped for had shattered into fools gold, and this little coal glows like a little lantern in our most private hearts, where no one can see, because no one else in our lives has been ravaged by this gale, and very few spend any real time  in the rain.

I lived several years in Portland.  I loved it.  I respect the rain.

She received a transfusion again just two days ago.  The ayervedic medicine I had given her did not increase her red blood cells, as her reticulocyttes were still effectively zero, although it may be too early to pronounce a verdict, for natural medicine tends to move more slowly than pharmaceutical.

Last night, I told her she had to toughen up, that we had to toughen up.  Days before her birthday, when she didn’t want the medicine, I told her that resisting and crying only makes it harder on both of us. That these medicines are our reality,  simply the way life is for us, and it was only going to get worse if these medicines didn’t work. 

There was little threat in my voice.  I felt like a sketch board artist, illuminating a story that no one wants to read, that everyone wants to believe is a fairytale.

You see, I had decided to give her a different herb, the one I found that is similar to hydrocortisone, which is one of the steroids used to treat DBA.  She had been crying, not wanting to take it, as it was foul smelling and tasting, even when mixed with milk and honey, which is how doctors in India manage to get those children to drink it.
Why haven’t I been using this herb? Two reasons: one, it’s high in iron.  This is not a small consideration, considering that her specialists are worried about the iron levels in her heart… And so am I.

Second, she did not test that she needed it when I took her to see the herbalist I trust most, who tests the herbs directly for her individual therapeutic value or negative response, using a machine that measures electronic and energetic response.  

She did test highly positive for needing a different ayervedic herb, one that is also a steroid, but with more phyto-estrogens and less testosterone.  So, I have been giving her that herb, which does not have high iron, and she does not mind.

And which did not increase her red blood cells. 

I will not say it did nothing — it is likely doing something very important in a hormonal layer that we can’t see, but it may not be strong enough to kick-start her bone marrow production.  She may need real steroids for that.  My hope is that if we do need to try steroids, that the herbs and herbal formulas that we have been giving her have laid a better foundation, so that the steroids would be a like a jump-start, and then we could wean and taper off them and her body could run on its own, perhaps still powered along a healthy path and supported by herbal therapy.

Her hematologist, believe it or not, is not only fully aware of my intentions, but now supports them, hoping also, that this might be the case for her.  I managed to turn some sort of light on for him two transfusions ago; I could see that I was no longer the crazy natural medicine acupuncturist, that he suddenly saw the reason and merit in my efforts and plan, and though he volunteered that it made him uncomfortable to work outside of protocols, I could see that I’d earned his respect.

That’s me: earning the respect of hematologists and other medical specialists, one at a time.  

It’s not something I necessarily care to do, because I don’t actually give a damn what people think, but it’s become a necessary part of navigating this river.

At any rate.  

My current plan, then, is to give natural medicine another couple months to see what she her body can do on its own.  In September, Adahlia will need to be sedated under general anesthesia for another MRI of her heart.  At that time, if she isn’t making red cells, we are going to try steroids.  

Sometimes, like in active or serious infection, antibiotics trump natural medicine.  The same is true for surgery: sometimes, natural medicine can fix the problem and make invasive surgery unnecessary, and other times, the best choice truly is to go under the knife.

At this point, Adahlias care looks like it is becoming more integrative than I’d like.   I am nervous that her chelation medicine isn’t working well enough, and that we will need to do nightly needle sticks into her belly and she will have to sleep hooked up to a pump in order to get the iron out of her heart.  If the MRI says that her heart has worsened, then I know we will have to do it.

If she is still needing transfusions, and her reticulocytes aren’t increasing at that point, then we are going to try steroids, and hopefully, if they work, it’ll give her body a break from the transfusions and influx of iron.

My intention, though, is to get her off of steroids as soon as possible.  I’m glad we haven’t tried steroids up til this point.  As you can see, she is an apparently healthy little girl, growing normally.  A short-term use of steroids, even if it’s a year (or God-forbid two) shouldn’t hurt her in the long-term.  It’s the years of steroids that destroy the endocrine system — that can cause adrenal failure, diabetes, osteoporosis, reproductive failure, and  even lead to things like needing all of ones teeth removed, because they are too porous, and needing dentures or, if one is lucky, implants.

So this is my birthday hope for her for this coming year:  that her heart stays strong and doesn’t show signs of structural or functional damage, that the chelation medicine draws the iron out of it, that this last-ditch effort at herbal therapy will be powerful enough to start RBC production without adding more iron to her heart, and that if it isn’t, and we must try steroids, that she has an immediate positive response and is able to be quickly tapered off them within a year, and is able to remain transfusion and steroid independent through the continued strengthening of her system with natural medicine.

I’ve got my fingers crossed, and hopefully now I’ll get some sleep.  I’ve  got rainbow cake batter to make, iced green with purple dahlia flowers and a yellow sun, and pink and yellow decorations to hang.

She was very specific as to her decorations and cake.

Happy Birthday, Baby.

I love you.

The above pictures were taken on June 30th at the hospital – her doctor and nurses entered her room singing Happy Birthday, bearing a cake and her first (and only) Barbie doll.

The nurses decorated the cake specifically for her.  I asked her, “what’s your favorite color today?” And she said “blue.”  

She had just finished with the transfusion when they arrived. She had been crying — she hates having the IV tape removed.  But she loves the Happy Birthday song.  She sings it (sometimes several times a day) to her imaginary friends and toy animals, and has me sing it when we have tea parties with cake, both real and imaginary.  I ask “whose birthday is it?” and she lets me know, and we sing.

The song and cake were transformative.  

Just like her blood transfusions.

Just like this journey.