If I made an objective list of things that have occurred in my life since adulthood, I don’t think that most people would say that, as an adult, I have been lucky.

As a child, yes, people would say I was rather fortunate.

But as an adult?

Have I had really different experiences?  Yes.

Have some of them been really cool?  Definitely.

But, by and large, they have been really tough.  Tough in the way few people would volunteer for, and even fewer would endure.  Earned in every imaginable way — and, if I were fair, I’m not sure I can say that the payoff was equal to the amount of pain.

(Here I am mostly talking about my West Point and military days.  It is not, actually, a “smart” idea to go to West Point.  It requires extraordinary dedication and a willingness to suffer, suffer, suffer for an ideal or belief for the future that you refuse to let go of, for years, while your friends mostly just play at adulting in their collegiate nests.  If your goal is to give yourself a comfortable, “happy” life, avoid West Point.)

Once, during my senior year at USMA, I was in New York in my cadet uniform for an official function.  A well-dressed New York socialite approached me, and brazenly attacked me for having been given a privileged, “free” education, while so many poor people can’t afford college.

I raised an eyebrow and replied, “Ma’am, people ‘pay’ for things in many ways.  I assure you: there has been nothing ‘free’ about it, nor will there be, over the next five years.”

Her mouth fluttered open a few times and she walked away.

When I think about the incident, I find it even more absurd since it happened post-911.  We were the first graduating class that would be sent to units going directly into war in many, many years.   What a stupid woman.

Even so, I can’t complain.  I am proud to have actually experienced what most people just sit around fireplaces and speculate on, getting drunk and opinionated about, without having any real, first-hand, experiential, or “root” to their knowledge.

I don’t have much patience for such types.

Truth is, even though those nine years took an extreme toll on my body and mind, I knew that I actually was privileged.  Because I knew what I was capable of, and I had found my breaking point, and balanced on it, again and again, only to discover that I could continue on, and do more and more, and that I wasn’t, actually, broken.

Very few people have any idea of their true strength, or even what it means to be strong.

Flash forward five years, and I have a child born with a blood disorder so rare that it is the equivalent of winning a super lottery.

Except the prize is a little different.  It is more like an un-lottery, a vacuum that sucks everything away, and makes everything much, much harder.  It’s a cruel vacuum, one that sucks a (usually) completely unsuspecting, unknowing couple’s joy and plans into a void that they will have to fight, tooth and nail, to retrieve scraps out of.

But again, I can’t complain.  Not really.

In Adahlia’s early years, I had a mom-friend who, while pregnant with her second baby, looked at me while we stood in her kitchen, and it suddenly dawned on her.  How much I had given my child to try to help her, not just physically but also emotionally and mentally, to wash away all the trauma of her hospitalizations and needle-sticks.

“Oh my gosh,” she said, “I just realized that you have never had the experience of putting her in a crib, coming downstairs and pouring yourself a glass of wine, and drinking it while listening to her cry it out.”

I’m not sure if it was my expression or her own conscience that corrected her.

“Not that that’s an experience, of course,” she quickly added.

“Oh, it’s an experience,” I affirmed.  But no, not one that I would value, I mentally added.

You see, people value different things.  People’s lives mean different things to them.

No, my life doesn’t mean suffering to me.  I certainly don’t consciously want to suffer.  I want the good things that most people want.

And no, I don’t think life is about suffering.

I do think that life meets you where you’re at.

And that your life experiences will challenge you to define your values.

No, there isn’t a sane woman alive who would trade her life and her child’s life for mine over the last five, six years (if you count the pregnancy, which was also harder than most.)

But I have absolutely zero regrets about how I’ve handled it.

I have priorities; I have values.  I have these values because I have come face to face with them and made a conscience decision about what is important in my life.

And no, my priorities don’t include drinking a glass of wine while my child cries herself to sleep alone.

I am better than that.  I have the tools and the ability to provide comfort, love, and a sense of security to a defenseless child when she is scared and doesn’t want to be alone at night.

I know who I am.  I know what I stand for.

It isn’t flippant or cruel or selfish or stupid or vapid.

It prioritizes the people I love over both temporary pleasures and even over more respectable dedications, like a career or bank accounts.

It pivots around a love so deep and profound that it surrenders sacrifice after sacrifice after sacrifice.

I know what goodness I am truly capable of.

And yes, that makes me one of the lucky ones.

 

Driving through the national park while the little one sleeps in the backseat.  We are not only camping tonight; we are camping with the cat for the second time this summer.

The cat is not pleased.

Snow drapes the mountainsides already, like making the mount and look like big women wearing heavy shawls.

Are they trying to tell us something about the coming winter?

I always feel happy driving into the mountains.  Of course, we can’t outrun what actually bothers me, what’s on my mind 24-7 it seems, but while driving, it seems like maybe I could.

There’s nowhere to go that can give me what I’m seeking.

Having a child with DBA is a strange state of stuckness – there are people who get out of the maze, but usually they can’t quite explain how, and so you’re left wandering it, rechecking paths you’ve checked 10 times before, looking for new ones, wondering if the risks of that path are worse the possibility you’d find an opening in the hedge, a way to escape, and to finally move forward.

It can be especially daunting when you know that many time, the new path  it just leads you into a new circular stuck lrpattern.

And yet people do get out.  Knowing that, how could I stop seeking an opening for us?

Adahlia just woke up.  

She doesn’t realize she’s in a maze.  It is the only thing she’s ever known.  

So let’s play in it, shall we?  We’ll find all the wonderful things we can… And I’ll keep my eye out for secret passages.

(I’ve heard of one I think I’m ready to try…)

There were other things I was going to say on my next post — I have a list of about 50 things.  Stories about how cute Adahlia is, little excerpts from our lives together.

Last week it was 4 weeks since her last transfusion, and her Hb was somehow 11.8.  It was all I could do not to write about it.  I felt we had been granted some sort of miracle.  But a week later, we retested and it was only 8.6.  It’s okay.  Of course, I’m sad about it.  But I am growing to accept it more, and handling it better.

Humans are actually really good at adjusting to things… for better or worse.

The reason I am posting now is because a 14 year old child with DBA died today.

There is a sense among the general population that this blood disorder “isn’t so bad.”  By general population, I mean the billions of people who don’t have it and don’t live in the same household of someone with it.  To give you a sense of perspective of just how rare of a group I belong to:  there are just 600+ people in the private Facebook DBA Support Group open to only DBA patients and the immediate family of DBA patients.  And its a world-wide support group of people of all nationalities.  Some don’t speak English very well, but we try our best to communicate support and advice.

When Adahlia was an infant, I actually had a well-intentioned but completely ignorant family member tell me:

“At least she doesn’t have Down’s Syndrome.  That would have really changed your life.”

People think that because she looks healthy (and that’s because I’ve worked so hard to keep her that way and invested every penny I’ve had and borrowed against both what I didn’t and still don’t have) that she’s fine.  But she’s not.

Having a child with DBA is like living next to a freeway and being told that once a day for 30 minutes, you have to leave your child unsupervised next to it while you sit in the kitchen with the curtains drawn.  She’ll probably be okay to play in the dirt while cars and semi-trucks race by at 70 miles per hour, right?  Of course, you also could get a knock on the door at any moment to tell you she’s not.  But don’t worry! Just go into the kitchen and make yourself a pot of tea until her time by the freeway is over.  Same time, same place tomorrow, right?

To cope, some of us DBA parents tell our kids things like:

“Some kids have to wear glasses.  Some kids can’t walk.  You have to get blood transfusions.  Everyone is different.”

But of course, there is actually a big difference between wearing glasses or receiving blood transfusions every 3 weeks because your body isn’t making its own blood and is constantly on the verge of shutting down.  While I can’t imagine how difficult it must be for a child unable to walk and run and jump, there is even a big difference between being unable to walk and being unable to… well… LIVE without regular intensive medical intervention that your body builds antibodies to and is actually toxic to it (ie, iron overload).

As a DBA parent, we love hearing news of children and adults who have gone into remission.  But it seems like we more often hear news of the opposite.

And let me tell you, hearing that another child has died, at 14, is a pretty big burst to the “it’s not that big of a deal” bubble.

Adahlia is 5.  So, we’d have 9 more yearstogether?   Some children die much earlier.  But we could get lucky, and she might die in her 20s?  But of course I’m being dramatic.  Some live much longer.  A DBA woman in her 40s just recently died.

There are some people with DBA who are alive beyond middle age.  There’s not many of them, and I’m not sure how old he was exactly, but the one I’m thinking of was a grandpa.  Actually now I’m thinking of two of them.  One of these guys told me a year or two ago that I have a wonderful mind and sense of humor because of joke I made in the DBA support group to lift some spirits.  Both of those guys are now dead, of course, but still.

DBA is a big deal.  It’s an F-N big deal people.

My prayers and love to the DBA families that have lost people this year.  They always handle it with such grace and thanksgiving for their loved one’s life.  Saying things such as, “I’m grateful that she had her childhood, even though it was difficult.”

This is a picture of Adahlia after her last transfusion, the one in which she got blood all over her princess dress.

And here is a picture of the path we all three   (Adahlia, her dad, and I) finished just a few hours ago for our backyard.  Adahila and I have been working on it all summer.

I know its hard to “get” something that is completely outside your realm of daily reality.  I’m not asking for pity nor anything else.  All I am asking for is for folks to just let me be who I need to be.

If I seem odd to you, untalkative, less jovial, less interested, or otherwise disappointing to you, remember my beautiful child plays unattended by a freeway everyday, and I’d love to change the situation and I’ve tried, but I can’t… so we’re just waiting, praying and holding our breath, to find out what will happen next.

Does yours?

“Mom.” she says.  A statement of fact.  We are at the Children’s Hospital and she is receiving a blood transfusion.   

Or more precisely, as understood amongst certain medical circles, she is receiving a red cell infusion.

I am sitting next to her on her bed.  I turn my head, and there is a stream of blood flowing down the surface of her left arm, not into her vein like it is supposed to be doing.  Her right fingertips are bloody.  Her rainbow “princess dress,” the dress she wore for her 5th birthday party just a few weeks ago, is smeared with blood.

I grab paper towels from the in-room dispenser.  “Hold this to your arm,” I instruct.  She hesitates, not wanting to touch her arm.  

“Mom.”  She says again.  “Its bleeding.”  

She’s only 5, after all.  

“Hold this to your ARM,” I command.  “I need to get the nurses.”  I grab and press her unwilling right hand down on the paper towels, pressing the mass of them to the leaking IV.

I slide open the glass door to our transfusion room.

“Blood is leaking out of our IV,” I say.   Our nurse jumps up from the nurses station and into our room.  Shuts off the transfusion pump.  And luckily, after examining it, we realize the problem is not the IV.  It is securely entering the skin, and there is no blood around the insertion site.  The blood is flowing out from a part of the tubing that was not twisted tightly enough shut, just near where the sticker holds the IV in place.

We don’t need to re-stick her.  The remaining hour of her infusion can go forward.  

Adahlia’s lips are a deeper pink than I’ve seen in years.  The blood vessels of her eyes are even red.

After wiping the trail of blood from Adahlia’s arm, the nurse leaves. 

I gather more wet paper towels and carefully clean the blood from the palm of her hand, from her fingernails.  

I am wiping someone else’s blood from my child’s hands.   How odd.

Whose blood is already dried underneath her fingernails?  A man’s?  A woman’s?  

Whose blood is now flowing through her body?  Whose red cells will spend the remainder of their days being pumped by her heart?  Picking up oxygen in her lungs, and carrying to her tissues?  Eventually to be cleared from her blood stream and dismantled by her spleen?

Everything about this is surreal.

I blot the blood from the rainbow panels and layers of her dress.  

I remember our friend’s “Dead Princess” Halloween party last year.  Little girls in party dresses smeared with blood.

Except this is real.  

Someone else’s blood.  A stranger’s blood smeared and speckled across the front of my child’s dress.  Turning wet paper towels pink.  Sticking to my hands in the unique way blood does.

Does that make it better or worse?  Am I more, or less, nauseated?

Sometimes, I don’t think I feel things quite properly anymore.   But perhaps, I never did.  I’ve always been good at the 3rd party observer way of handling unplesantries.  It’s quite useful, actually.

There are so many things I could say about what’s been going on the past few months, but I find it difficult to voice any of them.

The good, the bad… the hope, the progress, the setbacks.  

The next steps.  A big step, looming close.  Will we take it?  

I am not keen to speak any of it.  Even through my fingers.   

Instead, I will tell you another story.  

Another true story.

A few months ago, I decided to do something of a soul retrieval.  Please understand I am not a trained shaman of any sort.  I would never profess to be and have never performed — nor even received — what folks call a “soul retrieval.”   I just know that they exist, that certain healers offer them.  

But I decided, one night, lying next to her in the dark, that I would try to call in any parts of her that perhaps got lost while in the womb, or in a spiritual realm, or in another life… because well, I know what I don’t know, and I know that that’s a lot… and because, just in case, such were the reasons why she is not making her own blood, since, by all accounts and even modern scientific understandings, she should be able to.  She just…. isn’t.

In my mind, without speaking a word aloud, I began doing something.  In this something, I called for all of her to return to her, and to collect all of her across all space and time.

I went deeper and further and broader, calling for all of her to return.  

Meanwhile, laying next to me, she lay breathing softly, asleep.

Suddenly, she spoke aloud:

“Arms, Legs.  Hands, Feet.”  

Damn near scared the death out of me.  

In the past, she had certainly spoken aloud a few times in her sleep, but never intelligibly.  

These words were not only clear, but also surprisingly reflective of what I was doing.  She was assembling herself, just as I was calling for all of her to return unto herself.

I decided it was encouraging.   

So I continued to do what I was doing (which I fully admit I have not been very specific about).

Then, in her sleep, she turned her head towards me.  Moved nearer, as if about to confide in me.  All while asleep.  

“Stop,” she whispered.  

I stopped, waiting for her to say more.

“Don’t do it,” she continued, “He’ll find me.” 

***

Which of course, begs the questions:  Who is he?  And, is DBA some sort of spiritual witness protection program?  

Make of it what you will.

And for my part, I will try to make my next update a little less strange.

No promises, though.  It’s not really something I can control.  I am just telling the story of what happened.  And there is nothing about this situation that is not strange.

Be well.

There’s been a lot that’s happened and there’s a lot I could say.  And I will.  I promise.

But first, I needed to post this.  Because there’s a California hematologist who’s been giving white-coat curses to mothers of children newly diagnosed with DBA and he needs to be taken down a peg.  Because what he says is cruel and crushing and just plain wrong on so many levels.

My initial response was more colorful.

But this still gets the message across.

And I hope it finds its way across his desk.

One of the things that is so unnerving about DBA is that is unpredictable.

5-weeks between transfusions.  Then only 3.  Children that don’t respond to steriods suddenly responding.  And vice versa.  Iron appearing “suddenly” in organs that shouldn’t be overwhelmed yet, and then “suddenly” disappearing. Children with DBA across climate zones doing better around Christmastime; doing worse in the spring/summer, and then suddenly, it all switching up.

Or is it unpredictable?  Is it, perhaps, that we have yet to find the pattern?

Chinese medicine is all about patterns.  Connecting the dots between seemingly “random” symptoms is kind of the hallmark of what I do.  It is what I do best, and it is what I really enjoy doing.

But DBA is a puzzle fit to confound the most tenacious puzzle-master.

To let you in on my world a bit, let me give you my latest puzzle.  Like all DBA puzzles, it is a wait-and-see game.  It WILL resolve in time.  Positive or negative, we eventually find out if the child needs transfused, if the medication worked, and if things are currently “really bad,”  “really good,”  or somewhere in the middle.

It is the waiting that is the hardest.  Like much of life, it is the not knowing that is most difficult.  And this is why, when people come to me with their health puzzles, they feel so satisfied working with me.  I show them why it all makes sense.  I don’t take away any mystery or miracles, but I do help them complete their connect-the-dots.  It actually makes the miracle and mystery all the grander.

I only wish I could do it for my own daughter.

And perhaps you have some insight.  So here it is:

Adahlia is due for her t2* MRI.  Actually, she is overdue.  She was due to be scheduled for this examination back in September of 2016.  As of mid-October, she was overdue.  This is the radiological study that (imperfectly) measures the amount of iron that has built up in her heart and liver from so many blood transfusions.  (We do not have a natural way to rid ourselves of iron.  Because it is so valuable, our body stores whatever iron it cannot use immediately.  In someone who is chronically transfused, who receives a massive influx of iron monthly, this creates a problem.  Iron stored in the heart can lead to heart failure (ie, death) and so goes the story for the liver and other organs.  And so Adahlia takes a chelation medicine, which pulls it out of her organs for her.)

Typically, iron is stored in (more-or-less of) the following sequence:  Liver. Pancreas.  Heart.  Pituitary.  But this is not always true.  Some DBA folks store it in other orders.  Adahlia, for example, seems to preferentially load iron into her heart.

Because of hospital costs and limitations of equipment and software (not all hospitals can “read” all organs), most DBA patients do not receive full studies of all organs.  The hospital takes a reading of the liver.  Or if lucky, the liver and heart.  Extrapolations are made about guess-timated levels of iron overload in the rest of the body.

This is obviously an imperfect system, since the children do not load into all organs the same across the board.  A pancreas could be bursting with iron and no one ever know until it shuts down and the child is suddenly diabetic, or worse.

I’ve been trying to schedule A’s t2* MRIs since August, and to no avail.

There are scheduling difficulties.

Adahlia needs her t2* exam conducted prior to blood transfusion, reportedly so that it is the clearest reading possible.  This means we cannot transfuse her a week prior (and certainly not the day or morning prior) to the exam.

We need her t2* and transfusion to be conducted on the same day. First, so as to minimize emotional trauma, and second to save her veins from unnecessary needle sticks (they are beginning to form scar tissue and may become unusable).  When conducted on the same day, Adahlia receives only one IV stick for both procedures– first the IV is used for the sedation necessary for the MRI, and second it is used for the donated blood.

These scheduling requirements mean that we need the earliest possible MRI appointment in the day.  First, because the MRI requires a couple hours and the transfusion requires a few hours and the hospital won’t start a blood transfusion after 2 pm.  And second, because the MRI requires sedation, and to be safe, the child cannot eat or drink ANYTHING (including water) for something like 6-8 hours prior to sedation.  Denying your child food and water is tough.  So most parents, like myself, try to schedule the “MRI Under Sedation” first thing in the morning, so as to minimize the child’s hunger and thirst.  This means we have a lot of competition for prized appointments.

The problem is that this combination of requirements allows us a window of approximately one week per month to schedule the necessary procedures. In January, we were all set-to-go, but Adahlia came down with a wicked chest and upper respiratory cold.  It is unsafe to put a child under sedation when she has a cough/mucus, and so, confounded by yet another requirement, the t2* MRI was cancelled and reschedule for — you guessed it, March.

But last month she burned through her blood at record pace.  So instead of going an easy four weeks between transfusion (transfused at the upper-end of Hb range), she barely made it 3 weeks (and had a shockingly-low Hb count).

To make it to her March MRI + transfusion, she needed her blood to last 4.5 weeks.

Not impossible in the past.  But…

She hasn’t been looking so good.

And there’s another requirement to the MRI Under Sedation:

It is reportedly unsafe to do if the Hb is under 6.0 due to the risk of heart failure / not waking up.  (Some hospitals actually say they won’t do it under 8.0.)

So last week, I called her hematology team and told them she wasn’t looking so good.  I said I doubted she’d make it to March 14th, and asked if they could check to see if anyone had cancelled their morning MRI this week, so we could bump it all up by week.

They were not pleased.  As if I was somehow foiling their plans, instead of making sure the plan could go through. They told me they’d call me back.

And quite honestly, I don’t think anyone even checked.  I heard nothing back from them.

(I can’t call Radiology myself.  Because Adahlia is a Cancer/Blood Disorders patient, all requests for appointments must be made by her Hematology Scheduler.  Trust me, I’ve tried to go around this system in the past — it would just be so much easier if I could arrange it myself, as I care more about getting her appointments set up correctly than any scheduler ever could.  But it didn’t work out well and it didn’t make me any friends.)

I’m not entirely sure why Adahlia’s hematology team is dropping the ball on this so hard.

It may be because her last t2* MRI was entirely cleared of cardiac iron and liver iron was down to a moderate range (back in October 2015).  Six months prior to that, her hematologist was conferencing across the country about her, as her cardiac iron was extremely high and they were worried about heart failure, as historically, the heart is the toughest organ to remove iron from.  They even managed to schedule a repeat ‘critical’ t2* MRI exactly six months later for her. But, at that second MRI, after intense chelation and some of my complementary Japanese moxabustion and Shonishin therapies, the iron was completely gone from her heart.  Her heart was functioning at a very high level.  Like the problem never existed.

Their reluctance to push for Adahlia may also be because a few months ago, I had a relatively illuminating argument with Adahlia’s lead hematolgist about steriod treatment.

A paragraph or so into his steroid pitch, A’s doc made the mistake of saying that ultimately, he just wanted A to have the “opportunity” to try steroids.  

As if insinuating that I was not doing the proper job of a mama.  That I was refusing her “opportunities” in life.  

Now, I had been expecting this conversation.  It is A’s doc’s job, after all, to make sure his patients follow current protocols, or at least that he is strongly recommending them.  I was sure his bosses, whoever they are, who track these rare DBA cases, were all over him about why we hadn’t put this particular child on steroids.  And I was sure that somewhere in her file, like the Seinfield skit, there was also mention of how troublesome I am as her mother.

Knowing he has a job to do and medical license to protect, I was willing to tolerate what I knew would be his every-3-months steroid pitch.  And I’m perfectly fine with having a cost-and-benefit, logical, and analytical discussion about steroids and whether or not we are ready to try them (I’ve explained my reasons to him.  And we arent’t “against” steroids.  But we haven’t been ready to try them.)  

To use this particular angle — to put such a coated and manipulative and salesmany spin on the disagreement — well, it was not acceptable to me.   I lost it.

“Opportunity?!?”  I retorted.  “The only reason you are looking at the little girl that you are looking at is because I REFUSED the so-called “opportunity” of steriods that was so strongly pushed at us when she was just 9 months old that her doctors stopped speaking to me.  Had I taken the “opportunity” you all medically recommended, you would NOT be seeing the developmentally normal little girl you now see before you.”

I paused, glaring, and he obliged me and looked at her.  And I watched his face change, as he and I both knew what we would have been seeing, what her chart would be reading, had she gone on steroids.  And what we’d be looking at it in just two more years — a 6 year old little girl going through puberty.  A 6-year-old the size of a 3-year-old.  

“And now, NOW you say that you’d never recommend steroids to a child that young, that the ‘guidance’ has changed, but it would have been too late for her, wouldn’t it have been?  It is MY JOB to sift through your medical recommendations — recommendations that I understand you HAVE to follow or you will lose your license — for things that actually make sense.  And it is only because of MY OWN medical training that I have any ability whatsoever to do so.  My intention is provide her the BEST POSSIBLE opportunities in life, and the way to do that, in my opinion, is to keep her as healthy as possible.  To NOT forever alter her future. My job is to minimize any LASTING and IRREVERSIBLE effects.  And so far, we have done that.”

He did not argue with me.  He knew I was right.  While he may not volunteer the information and connections between steroid use and diabetes and osteoporsis and precocious puberty and severe growth stunting and 8 year olds with joint degeneration when he “sells” steroids (his word, not mine), he knows the effects of them.  

And so he replied, “You have to understand,” he said, “my job is to sell the steroids.”

His posture changed and his energy grew somber and reflective.

“At night,” he admitted, “I think about the girls and boys who I have physically altered with steroids.  How I’ve destroyed their bodies and changed their futures.”  And then he looked up.  “But for some of these children, there was no choice.  They would have died without the steroids.”

I was astounded.  It is not everyday nor every medical professional who can admit that he or she “destroys” the bodies of children (again, his wording, not mine).

“But that is NOT her situation,” I growled.  “She HAS another option.  And it is not perfect.  And it is dangerous.  But if we are vigilant and lucky, it will not PERMANENTLY change her body. It will not destroy her own natural hormones and endocrine system, and irreversibly alter her chance at a ‘normal’ future.  If her situation changes, and we must use steroids to save her life, or if I feel there is a chance that the steroids might ‘jump-start’ her system, so that she needs them only temporarily, then we may try that.  But I will not let you leave her on them.  Even if they work.  And it will kill me to administer them to her.”

***

Back to the present — storytime over…

Whatever the reason, I’m not super thrilled either way about how Adahlia’s medical care has been over the last 6 moths.

Last month’s conversation with her team was a little stilted.  Adahlia’s heme team expressed “surprise” that she still hadn’t had her necessary yearly iron overload t2* exam.  And they were “upset” it was so overdue.  (And of course, it was their own / the hospital’s fault for not prioritizing it.  So I found their expressions of shock unimpressive.  If its so damn important, SCHEDULE IT, people!!  I should think that she’d get some sort of priority.)

So what’s my point?

My point… my point….

My point is that I’d rather not have Adahlia’s heart stop while under sedation.

And I’m a little upset that the hospital doesn’t even seem to care to find out if the procedure will be safe for her.  (They don’t test the Hb prior to sedation.)

And so I must —- again —- be the Tiger-Bear Mama.

My plan?

Well, her t2* is scheduled for Tuesday.  The day before, on Monday, I’m thinking of taking her to get her Hb checked via finger-poke at a closer hospital branch (we go to the Main Campus near Denver for transfusion).  I’ll call the main hospital that afternoon to get the results, and if its too low, I will cancel the MRI.

Until then, Adahlia will continue blade-running her hemaglobin.  She’s low, but I think she can make it to Tuesday.  It doesn’t make much sense to check her before Monday if they aren’t able to alter the plans to see her before then, anyway.

I just refuse to let them sedate her, and have our story end with:

“We are so sorry.  We tried everything….”

I just refuse to let that happen.  I’m not going to let the stupidity of medical protocol / medical error destroy my child.  She’s MY charge.  She’s my Light Being to Raise Up.  And I take that duty and honor seriously.

So, does everyone agree — Good plan?

Alright then.  On the count of three, let’s do this.

One-two-three:  TEAM!

Last night, I was able to attend the Functional Forum (Evolution of Medicine) filmed live in Boulder.

The subject was the Evolution of Psychiatry, and it was a fantastic forum.  The focus was the elusive connection between trauma (emotional wounds) and physical illness (physical ailment), particularly with autoimmunity.  The most riveting speakers were a pair of MDs from the Wholeness Center, who use Integrative Medicine techniques to heal psychiatric issues in a profoundly effective way.

And of course, this subject is fascinating to me because I am working on a book that ties together the physical and emotional/mental aspects of autoimmmunity, and provides an explanation for it.

Is trauma and “mystery” genetic illness connected?  Well, research says a resounding yes.  But since all that info is on the recorded live-stream presented by the aforementioned docs, I wont repeat it.  What I will say is something I have long known, and mourned (for my inability to shield her from it):  Adahlia’s DBA was triggered by my own stress (elevated cortisol) while she was in-utero.

Now as I said before, I’m not about blame. But I AM about personal responsibility.  You can’t forgive yourself unless after you accept that you had an impact. Goodness knows how I wept for how I couldn’t prevent what has happened to Adahlia, and all that she has gone through — despite being an educated medical professional who sought the best care while pregnant.  I did everything possible to mitigate my stresses, but they were numerous:  I was writing a Masters thesis, taking national board exams, and finishing my final (fourth) year of oriental medicine education.  I had significant family and relationship stress.  I was even in a car accident while pregnant (not my fault,  not that it matters).  And, I had suffered both Big-T and Little-t trauma of my own throughout my first 33 years of life.

But I think all that would have been mitigated – it all would have been okay and Adahlia would have been okay – if it weren’t for my right kidney going into acute kidney failure — leaving me bedridden in pain — at least four times during my final trimester.  Up until this point, Adahlia’s “pulse” within my pulse was strong and healthy.  After my kidney failed, her pulse disappeared within mine.  And, surely, it was traumatic for her to experience me being flooded with all the pain signals of a kidney in colic and dying.

But, except for to have her born prematurely, there was nothing I could do but manage my pain as best as possible.  Shoot — at the time, conventional medicine just thought I was having “back pain.”

It is upsetting, though, on one hand.  I tried so hard to give her the perfect gestation!  And yet, if it was not a car accident, it was a big fight with my mother and sister.  If it wasn’t a fight with my family, it was stress over boards.  And even when I was managing all that stress with acupuncture, chiropractic, herbs, qigong, meditation, and breathing — boom.  My kidney fails.

As a wise woman recently told me:  “Erika, you could not have prevented this.  You read this.”

Take that for what you will.

It doens’t negate, however, that my poor child started out life — before she even took her first breath!  –  fearful and nervous, feeling unsafe, flooded with cortisol and inflammatory markers that surely wrecked havoc on her own developing parasympathetic/sympathetic system.

It would mean that I would have some serious “undoing” work to do, to try to get her body to manage its cortisol better.  To purge it of opportunistic infections and pathogenic microbes that take hold in high-stress, high-cortisol environments.  To return her microbiome to normal with “good” bugs.   To help her realize she is safe.

Of course, her actual disorder does not help me in this regard.  Her monthly blood transfusions mean that she has been held down and poked with needles up to seven times in one hour.  She has been forced to drink nasty medicines multiple times a day.  These are memories deep within her.  Not helping her to feel safe.  Not helping her to know that she can relax, that she won’t be wounded.

This is why today, to this day, I am the fiercest mama tiger-bear you’ve ever met.   I am the spikiest, strongest shield that has ever surrounded a child.  And I am a true DBAdvocate.

But its still not enough.

About a week ago, Adahlia awoke whining and wailing.  Her voice tiny and pitiful, the most mournful cry.

“What happened?” I asked, pulling her close and kissing her.  “Did you have a bad dream?”

She sniffled.  “Yes,” she said.  “I dreamed I was a little baby, and I wanted to drink your mama milk so bad, and I tried, and tried, but I couldn’t get any mama milk.”

Friends, this wasn’t a dream.

It really happened.

Before we realized she was anemic and wasting away before our eyes, as a new mom who had never breastfed a child before, without an experienced mother of my own and feeling too awkward and alienated to ask my friends who had birthed and breastfed, I did not realize that Adahlia was too weak to eat.  I would wake to sheets soaked in milk from when she had latched on but was too weak to actually drink, and would let the milk spill out of her mouth and splash onto the bedclothes.  In two weeks, I nearly lost my entire supply, as she drank less and less.

Until finally, insistent that something was really and truly wrong, Adahlia was rushed to the hospital with a hemoglobin of 1.9, barely alive, on the verge of heart failure, and having dropped from the 50%ile to 30%ile.

My baby had nearly starved to death.

I look at the pictures now — and actually, that’s a lie.  We can’t look at her pictures from that time.  She’s so pale, and so thin, and so listless… it’s too upsetting.

So now its about clearing trauma.  Trauma in-utero, where it all began.  And Big-T trauma in her first weeks of life:  starvation and needles.

Yet there is hope.  We’ve done some work on this, but there is much more we can do.   And after talking with Janet last night, it may indeed be possible for some of the therapies used for adults — therapies that actually reprogram the number of cortisol receptors in the brain — to be used by a 4-year-old child.

It will be expensive.  (Sigh.  What hasn’t been.)  Not only can we not afford it, we can’t put anything more onto credit cards or go further into debt.  (The tricky thing about debt is that it needs paid back.).

But we will find a way someday, and soon, perhaps, if I work very very hard and the pieces come together.

Because as awesome as the last month’s blood reports were, Adahlia’s red blood cells plummeted this last month.  She needs a blood transfusion now, and its only been 3 weeks since her last one.  This is not typical — she usually goes at least 4 weeks between transfusions.  But its also not necessarily bad.  I think there is something we are clearing from her system, and it is taking a toll on her system to do it.  But that’s okay, I’m not giving up.

As I told her last night as I held her:

“I’m not giving up on you. I love you.  You’re safe.”

People love babies.  Baby humans, baby animals, baby plants.

The baby I love most of all these days?  Baby red blood cells.

I have news:  Adahlia is making baby red blood cells again.

Remember, back in July, she made her own but they were so few that they were not even in the normal reference range?

Well, now she is making them.  Her IRF (immature reticulocyte fraction) and Absolute Retic Count are both solidly in the middle of “normal” on their respective reference ranges.  These numbers mean that she is making her own red blood cells.

This is big.  This hasn’t happened on this scale since she was less than a year old, and we were living in Portland.

What’s different?  What’s happening?

Well, perhaps nothing.  But, perhaps something.   For the past 6 months, I’ve been combining therapies in a wiser way.  In the past, I’ve missed things.  I’ve not seen the whole picture as clearly as I am beginning to.  And I’m confirming some of the things I originally thought.

Also, my mindset has shifted.

In the past, I’ve been desperately trying to cure her.  To find “the missing piece” that would put the puzzle of her marrow dysfunction back together, and make it function correctly.

More recently, I’ve acknowledged that she may not be cured.

And I’ve moved towards a mindset of just trying to make her as healthy as possible — which is no small task considering all the transfusions and chelation medicine.  Her body consistently runs in an abnormal, toxic state.

It seems like a small thing, but a shift in mentality can spell big changes in reality.  Instead of trying to “cure” something, I’m looking at perfecting her system the way it is.  So that even with all the toxicity and dysfunction due to a malfunction I can’t correct (the lack of red blood cell production), she’ll be as optimized as possible.  I came to this:  Maybe she’d never have a “normal” life.  But I could help her function and be as healthy as possible, minimize catastrophe, save organs and senses, and help her live at her highest level.

It is kind of a Systems Engineering thing.

And its also a very energetic thing.  With this shift in mindset, there is a difference in my sense of centeredness, of purpose, power, and peace.  Something has solidified.  Something has strengthened and brightened.  It is not something easily described.

Some things, then, we’ve been doing differently in the past 4 months:

1. She’s fully gluten-free again.  (Sounds crazy that I’d miss this, no?  Here’s the thing:  I hadn’t, really.  She was gluten-free from Jan ’16-July ’16, prior to her first (small) reticulocyte increase.  But then, after her birthday, when her diet blew up into a sugar bonanza, I somehow got it in my head that she had tested negative for gluten intolerance.  I’m not sure why.  In reality, I had simply never tested her.  Why not? Because last January, I had decided to treat her as if she had an intolerance.  Why? Because these tests are very expensive, and I needed to make some choices. I decided I needed to know more about intolerance of hundreds of random foods (such as herbs, eggs, nuts, fruits, and veges) than I needed to know an in-depth analysis of her reaction to the dozens of proteins and peptides that comprise wheat.  I could just make her gluten-free.  Worst case scenario would be that it was an extra precaution we didn’t need.  I could test her in a few years, if I (or she) ever wanted to know if she could eat gluten.  So, from July-September, Adahlia ate gluten as we took a break from our strict diet, and even as I introduced the Chinese herbal formula I had such huge hopes for.  It wasn’t until this Fall, when I tried to pull up her wheat-reactivity panels to take another look at them, that I realized they didn’t exist.  It wasn’t that she could eat wheat.  It was that I had never tested her.  Do I think that DBA is a simple gluten-sensitivity issue?  Hell no.  Do I think that dumping a bunch of gluten into the System helps an already-compromised System?  Certainly not.)
2. Sesame oil on her skin.  (Okay, don’t laugh.  I actually think this has made a huge difference.  And I’ve been doing it primarily because Adahlia has been requesting it.  I applied it one night on a whim after reflecting on its properties and using it for the last few months as a “swish” in my own mouth to prevent cavities. Adahlia hated it when I asked her, playfully, to try “the sesame swish!”  I figured she’d also hate it on her body, finding it too sticky.  But she loves it.  She asks for it every evening and after every bath.  I rub it gently into her stomach, chest, back, arms, and legs. I don’t rinse it off.  So, what’s going on?  Sesame oil helps detoxify the body as an anti-microbial, anti-viral, and anti-inflammatory.  Our skin is our largest organ.  And before you say, “Big deal, coconut oil does the same thing,” let me tell you that sesame oil has one huge leg-up on coconut oil:  In ancient Chinese medicine, sesame heals the deepest energetic layer, the ancestral organ network, which includes the bones and brain and which today translates as genetic level issues.  Sesame oil nourishes the yin and the essence.  Friends, very few things are listed as nourishers of our “essence.”  So, instead of applying lotion or coconut oil to Adahlia’s rougher skin areas (areas that are highly significant in Chinese medical diagnosis), I have been applying sesame oil.  Just today, as we drove to the hospital for transfusion, I remarked to Joe:  “Well, at least her legs are better.  Have you noticed? Her skin is much better.”   Do I think its a coincidence that her skin luster, moisture, and softness (yin) has remarkably improved as she’s begun making her own blood (yin) in Chinese medicine?  Do I think its coincidence that the areas that are typically rough follow along an exact acupuncture channel?  Do I think its coincidence that these specific areas of skin get rougher and drier as she gets lower in blood, and then mysteriously improve in texture after a blood transfusion?  On all counts:  No.  Mark my words, friends:  In 5 years, sesame oil will be “the new” coconut oil.)
3. Moxabustion.  (Adahlia has randomly started asking for moxabustion treatments.   This is something I did for her as a baby — perhaps, if I check my notes, back when she was regularly making her own red blood cells, but not making enough to avoid transfusion.  Why did I stop?  Because it wasn’t curing her (at least by itself).  Why did I start again?  Because it is no longer about curing her, but helping her body to heal and function as well as it can.  Instead of a curative therapy, I reintroduced it as a supportive therapy.  And again, that changes things.  Last year, we used moxa with great success to guide the exjade chelation medicine to her heart, and we got dangerous levels of iron out of it (built up from iron overload) in just 6 months.  However, moxabustion is not something the average person has the ability to do at home.  And so, I’m not going to delve into it here. But, I believe this also has been key.  Adahlia asks for moxa daily, and so for the last week or two, I’ve done it for her daily.  In fact, I just took a break from typing this to give her a moxa treatment.)
4. Diet and supplements.  (Bone broth, fresh vegetable juicing, and several supplements that she has tested low or deficient in.  I won’t list them all here.  I believe they are individual-specific.  There’s a whole diet here that is a step-wise plan for gut-healing.  And whenever you are talking about System health, you need to at least think about treating the gut.)
5. Leucine.  (Now, before everyone freaks out that leucine maybe is “the cure” after all, please note that we aren’t doing it to the level of the clinical trial.  Adahlia has only been taking approximately half the recommended amount for her body mass that they are doing in the clinical trial, and she has only been doing it for a little over a month.  According to researchers and others who have tried to use leucine to increase RBCs, it takes a good six months to get hemaglobin results.  Indeed, we did an at-home trial of the recommended dosage over a year ago, but we gave up after approximately 3 months, as I couldn’t get her to take it regularly (it tastes nasty and I ran out of ways to mask the flavor.)  She had zero increase in reticulocytes or RBCs during that 3-month time.  But, combined with everything else, is it helping now?  Quite possibly.  And, perhaps, at an encouragingly-less-intense dosage.)
6. Fever.  (I believe this is huge.  Now, its typically understood that having a viral illness causes a drop in red blood cells, or causes the person with DBA to “burn through” their donated cells more quickly.  And in fact, in past years, we’ve noticed this too.  But Adahlia has been sick for the past two months.  Her RBCs haven’t plummeted. If anything, she’s gone remarkably long between transfusions.  And these’s haven’t been weeks of mild illness.  She’s had nearly constant nasal drip, stuffiness, cough, occasional vomiting, and at least three days of fever (two consecutive of 104 degrees, with another day of fever a couple days later).  She’s missed several days of preschool.  In fact, Adahlia’s finally turned the corner just in the past week.  Why didn’t her RBCs plummet?  I think its partly because she has been doing Chinese medicine to support her spleen and liver and eliminate deep-seated pathogens.  And because honestly, I don’t think this has been a “normal” cold.  I think she’s flushing something out.  I think something deep within her is shifting.  And I believe I’ve mentioned in other posts that many children experience a remission after viral illness or taking anti-viral medications.)
7. Reiki and other therapies, both on her and self-performed. (Why treat myself?  Because Adahlia is still very much tied to me energetically.  In the interest of going to bed soon, let me just say that we’ve experienced some pretty wondrous things.  Why have I renewed Reiki?  Well, again, because I just want her to be healthy even if she is never cured.  Also, because she is overdue for her next cardiac and liver analysis of iron overload, and I don’t want her to lose her hearing and vision to the chelation medicine.  But primarily, because it has gotten so strong.  Something is going on with the Reiki — it is very powerful these days.)

So, do you believe I’ve given up on curing her?

If you do, you don’t know me very well!  In fact, Joe just announced that a package was literally just delivered a minute ago that I’m pretty excited about.  A Chinese herbal medicine from the Materia Medica that people have apparently forgotten, that my world-renown, school-founding mentor who speaks at least three languages said he had never even heard of, and told me he didn’t think I could find anywhere here in the states, and only possibly in China.  The ways it was described in the ancient texts made my jaw drop.  It seemed to fit her to a T.

Would this be the missing piece????

… Some things never change.  🙂

It’s been awhile since I’ve posted — over 2 months.  There’s been good reason for it, though.  The past few months have been full of ups and downs and tension, tension, tension.  Any DBA parent can give a sad, knowing nod to the tension.

My hopes for the new Chinese herbal therapy were not met in the first month (after my last post).  Reticulocytes still zero, nothing remarkable at all.  No reason to hope.

And so, I was in a weird place for the following month.  I wouldn’t say I had given up, and I wouldn’t say I had come to acceptance, and it wasn’t quite apathy either.  But I had come to a place where I was shifting away from wishing she could be healthy, and realizing that she just wasn’t.  And she never would be.  That she would simply live her days on the brink of death, dodging one complication, and then another, until one day she didn’t, or couldn’t, and that was her lot, as well as our lot as a family.

We’d never get our lives or hopes and dreams back.  Time to adjust to a new reality.  And that’s okay.

Of course, then, on her next transfusion, our doctoral fellow rushed in, eyes shining, saying she didn’t know if it would last, but Adahlia’s labs showed a high number of nucleated red blood cells (juvenile red blood cells that could have only come from her own marrow), and that we’d have to see if the trend continues, but it was a step in a positive direction.

Why didn’t I post about it?

Well, because honestly, I was kind of annoyed.  Of course, after managing to walk myself slowly into a place of acceptance, a place where maybe I could be happy in a place of less possibility, because I could finally stop being sad to see my graven child standing next to all the rosy-cheeked ones, because she was never meant to be one, and would never be one, I would be offered this bait, this hope, this chance that maybe, maybe all the medical procedures and dangers were done.  That maybe the future was bright for us, too.

Joe said he was actually kind of proud of me for reacting the way I did.  I think I just nodded solemnly, pulled up half of a smile, and said, “okay.”

Sure, I was happy.  Who wouldn’t be?  But perhaps, if you can imagine yourself in my shoes, you could also imagine how I just didn’t want to hear about any more hope.

And I wish I could say that fate gave me a “take that you naysayer!” and she didn’t need a transfusion the following month, but she did.  Of course, she did.  Where did those nucleated RBCs go?  Oh, they were probably broken by her liver and down and are contributing to the buildup of unseen gallstones that are common in disorders where red blood cell production is faulty, to the point that it eventually requires removal of the gallbladder in the child.

Not to be Eeyore, but there is just so little to be enthusiastic about in DBA.  It is a damn struggle to remain positive, present, and real.  The bottom line is that red blood cells are vital to health.  Not making your own, and filling the body with ones that aren’t yours (or taking steroids to force your own production) is an extremely toxic situation that forces coping mechanisms throughout the entire body.  It is a broken system.  It needs rectified on a fundamental level or else… well, you just can’t expect anything good.  You can only compensate for so long.

Are you still reading?  Bless you.

For your solidarity, I will reward you with something joyful.  Next time, I’ll share part of the conversation I shared with Adahlia’s hematologist, and share a fun drawing Adahlia made for me on her “gallerina” wall.  (She combines the word “gallery” and “ballerina,” I think.)

But for now, I give you:  Baby Catrina.

You see, Adahlia won a pageant.  It wasn’t your typical pageant, and I certainly didn’t send her to into knowingly.

What title did she win?  “Miss Catrina.”  What was the event?  The Day of the Dead.

Adahlia and I like the Day of the Dead, and although we aren’t of Hispanic or Latino heritage, we enjoy celebrating it.  Like many folks, we are a bit fascinated with death.  We like Tim Burton’s “The Corpse Bride” and “The Book of the Dead” and when she’s older, I’ll show her “The Nightmare Before Christmas” and she’ll probably like it, too. In fact, we enjoyed celebrating El Dia de la Muerte so much that we decided to go to our town’s annual festival, which happens to the largest Day of the Dead celebration in the State of Colorado, and ranks among the 10 largest in the nation.

On the morning of the festival, Adahlia declared that she wanted to go as a “dead princess and corpse bride.”  (She wore 3 different Halloween costumes this year — she was a bat, a wolf, and dead-princess-corpse-bride.)   She had sported the dead princess portion of the costume to her friend’s “zombie princess” party — wearing a Cinderella dress I just happened to find in her size at the thrift shop literally two streets from our house and literally on the afternoon of the party.  Randomly, the costume had also contained a circular portion of tulle with flowers stitched into it that clearly did NOT come with the manufactured costume.  Was it supposed to be a skirt? Or… a veil?

It happened to fit Adahlia’s little skull perfectly, and so with a little bit of facepaint and her magic shoes, we were off.  (Her magic shoes are little brown slippers that I bought on consignment in Portland but were too big.  I set them out for her one day, realizing she might fit them, without saying anything to her, and promptly forgot about it.  She discovered them, exclaiming “I have always wanted these shoes!  And they came to me by magic!”  And now they are her favorites.  She wears them everywhere, and tells everyone that they are her “magical shoes that appeared by magic.”  (Sadly, the magic shoes are getting a little too snug, and we will have to manifest another pair soon.)

Adahlia and I met our friends the Day of the Dead celebration and the girls got their faces painted and we admired some of the altars.  Our friends left, but Adahlia and I remained.  We made paper flowers, watched dancers and musicians… and an elderly man, face half-painted like a skull himself, leaned over to ask me, “Does she want to be in the Miss Catrina contest?”

At my hesitation, he added, “It is only for little girls, and there’s only a few signed up.”

I glanced at the sheet and saw perhaps four or five names, with ages 7, 10, 8…

“Adahlia,” I asked, leaning down to her.  She was transfixed by the traditional dancers.  “Do you want to be in a contest for Miss Catrina?”

Adahlia looked up at me.  She nodded slowly, as if unsure what I was asking.

We had met La Catrina earlier — the elegant skeleton lady, well-dressed and fashionable.  At first, she had been scared of her.  But eventually, she went up to her, received a piece of candy from her, and was forever smitten.  But I realized in her mind that the title of “miss” went to teachers and other authority figures.   “Do you want to be in a competition to be Baby Catrina to La Catrina?” I rephrased.

“Yes!” she said, grabbing my hand and looking around.  “Where is she?” she asked.

I reached over to the clipboard and signed Adahlia up.  “We’ll see her In a little bit,” I said.

Before the contest, I re-touched Adahlia’s Day of the Dead make-up and re-affixed her veil.  As the event coordinator called for contestants, I led Adahlia to the stage.  “Just stand right on the stage and hold onto your flowers, just like the Corpse Bride,” I said, smiling.  “I’ll be right down here.”  I wasn’t sure if she’d be scared up there — the auditorium was completely full.  But the very front row was empty, so I scooted myself in, hoping that as long as Adahlia saw me right there, just a reach and a stretch away, she wouldn’t freak out.

On the stage next to her stood four or five other contestants.  Adahlia was the youngest by at least 3 years.  She didn’t seem scared, but she also wasn’t mugging.  In fact, she kept turning around to look at the pair of La Catrina standing at the back of the stage, who were waiting to crown the winner.

In the aisle, a blond woman with a 10-year-old daughter in the contest exhorted her to smile and taking flash photography.  Her daughter was your prototype Anglo-American with blue eyes and blond hair.  She wore a traditional dress in the colors of the Mexican flag, and had her face half-painted like a skull.  She was all Mexico-pride — except I was certain she was not Hispanic or Latino.  I received the impression that her parents had gone on an expensive Mexican vacation, and perhaps even owned a vacation home in Mexico.

I had felt a little awkward before, a little like an intruder in someone else’s holiday.  Neither of us were blond, but we were not Hispanic either.  What right did we have to be at this celebration?  Much less win a contest in it?  I did not want Barbie-Mexico to win, but to be honest, I realized I did not want Adahlia to win either.  It should be the little Hispanic girl who is dressed in traditional Day of the Dead attire and clearly put a lot of pride into her outfit, I thought.  But it was too late to pull Adahlia from the pageant.

And was it wrong for her to be there?

Winner was chosen by applause.  I quickly realized that although all the girls got a loud share of applause, none of the other girls had a chance.  How could they compete against a pint-sized corpse bride who clearly idolized her elder Las Catrinas, and was so disconnected from falsity and show that she shyly smiled only a few times at her mother, and otherwise held her paper flowers firmly in front her, staring solemnly back out at the auditorium of the living?

Adahlia won, was given a sash and a crown, and we spent the remainder of the day making good on her reign. At the moment of her little coronation, I decided that would not slink away with her title, in the typical Ugly American style of dashing off to the next conquest or event or happening.  Although I doubt anyone really noticed or perhaps even cared, we stayed until the event was over, decorating a candy skull and dancing to Mariachi music.  Adahlia gave me her crown to hold and danced in circles on the lawn with the other children, her red Miss Catrina sash blowing in the wind.

And though I was still painfully aware that I only painfully understood bits of Spanish (despite many years of studying it), I was so grateful to be there.  It was a wonderful celebration.  It was a celebration powered by and infused with Love.

As the hours passed, Adahlia kept an ever-watchful eye on her beloved La Catrina.  Finally, Adahlia insisted that I go tell her something.  So, I walked over to La Catrina (again … by this point, we had taken many pictures with her) with Adahlia hiding behind my skirt.

“Excuse me,” I said, “Adahlia wanted me to tell you that she loves you.”

(In the photo above, Adahlia’s beloved La Catrina is the one is the rust-colored dress, though both ladies seemed to be carrying the title for the event.)

That night, as I gave Adahlia a bath and washed her Dia de la Muerte face paint off, I thought of the contest.  I thought of little Barbie Mexico, and how she had burst into tears after she didn’t win.  How it wasn’t her fault that she was blond and privileged.  Perhaps she loved Mexico.  Perhaps, she was even born in Mexico.  I thought of the other girls, the Hispanic girls, and how they had taken their losses so gracefully.  And how I still couldn’t shake my white guilt.  How I still couldn’t help but feel that the winner of the contest should have been Hispanic.

Or was that a part of the problem?  When would we simply look with eyes of love?

I thought of differences in cultures.  And I thought of my own life… how golden it had seemed to be, how charmed, how privileged, how lucky.  I thought of how winning had come so easily… for so long, anyway.

I thought of how much loss I had willingly entered into, ever since I decided to West Point and dared to take a chance on real life, to leave my sheltered bubble for a life that might make a real difference, that might contribute to something noble and good.  How all the shiny surface paint had been scrubbed off, and was still being scrubbed off.

“Adahlia,” I said, “did you know that one of the other girls in the contest cried because she did not get to be Baby Catrina?

“She did?”  she asked.

“Yes,” I replied.  “And its okay that she was sad, but do you think you would have cried?”

“No,” she replied, matter-of-factly.

I don’t think so either.  But if you had, I could have easily lied to you, and told you that she won Girl Catrina, and you still won Baby Catrina.  You wouldn’t have known. 

But I wouldn’t have done that.

I took another breath.  This was tricky territory, and I wanted to navigate it rightly.

“You know, it doesn’t matter who wins competitions.  It doesn’t really matter that you won.”

“It doesn’t?” she echoed, making her Ariel mermaid dive underwater.

“No, it only matters that you do your best, and have fun.  Did you have fun?”

“Yes,” she replied.

“Good,” I said, scooping her naked body up.  “It doesn’t matter that you win, only that you do your best.”

“And have fun,” she added.

“Yes, that’s right!” I replied with a nose kiss.

“Oh, mama, you’re so cute, you’re so cute!!” she sang, flinging her arms around me.

People win and lose for many reasons.  Some of them are easy to predict — Like a toddler winning a pageant.  Others, we might never understand.

Later, after I finished brushing her hair, Adahlia began to cry.

“I miss La Catrina!” she sobbed.  “When will I see her again?”

“Oh baby,” I said, “you’ll see her next year.”

“Does she miss me?”

“Yes,” I smiled, pulling her in for a hug.

“Will she remember me?”

“Of course,” I replied.  I lifted her her up and walked through the doorway to take her to bed.

“She will?”  Adahlia sniffed.

“Yes,” I told her.  “You are her baby, now, too.  Now, you belong to both of us.”

And in truth, she belongs to neither of us.  For our children are not our children…

As I lay in bed, reflecting on the day, I thought how many mixed emotions I held about what had happened.  Joy, to be sure — Adahlia had made a great Miss Catrina, dancing and playing, an inspiration of what it means to be fearless and welcoming and playful about death.  As we walked around the celebration, with Adahlia wearing her crown of orange and yellow flowers, carrying her ghoulish scepter and wearing her red sash, many people walked up to us, saying to her, “I clapped so hard for you!  I cheered for you!”  Adahlia didn’t really understand it, but she understood that something had happened, and that it was special.

And yet, there was also something a little disturbing about it, a little eerie.

You see, there were only four or five other girls on stage.  It was probably safe to say that Adahlia has spent more time in the hospital than any of the other contestants.  She was probably the only little girl up there that had nearly died.  I mean, shoot, her hemaglobin was only 1.9 when we first took her to the hospital.  You don’t get much closer to death than that.  And she may not look it, and its easy to forget on a daily basis, but the truth is that she lives one foot in the grave.  Her blood is not her own.  She still lives closer to death than La Catrina herself ever did.

We are not Hispanic.  But what does race really matter?

Adahlia and I often talk about how lucky we are.  It is important to me to cultivate gratitude, to find the silver linings and luck and beauty and laughter, even when things are falling to pieces and storms are brewing and by all mathematics and reason, we really should be miserable.  And when my child gets a hot chocolate with whipped cream and sprinkles and a slice of gluten-free banana bread, when she screams giddily with excitement and exclaims, “I am so LUCKY!  Mama, I am so lucky, aren’t I?”  I pet her head and kiss her, grateful to have a child who feels lucky, even though she drew the extremely rare card of being born with DBA… which, by any standard, is pretty damn unlucky.

La Muerte comes for us all.  And who does Death hold closer to her breast than the child with DBA?  Who has more right to the title of Miss Catrina than the child who, by all of Darwin’s laws, should have perished within her first weeks of life?  Who, but the child who receives her life anew one month at a time?

Two mothers.  One in each world.

Baby Catrina.  Miss Muerte.

Here to remind us that something fantastic exists beyond life.

To remind us how lucky we still are.

And how beautiful.

Alright Sports-Fans, Buckle-Up.

Because this is a gonna be a blast.

A blast of information that will take you like a roller coaster through some very big changes, some drops, some twists, and ultimately, to a really high-high hope.

And maybe, just maybe, we’ll find ourselves at the top, and we’ll cut loose the straps, and find ourselves flying.

It’s the Great Hope anyway.   And I’m here to tell you about it.

I’ve noticed that sometimes my posts don’t get posted to Facebook.  And I’ve noticed, also, that email versions of these posts are publishing from the name of a friend of mine, instead of my own, if you are subscribed to receive emails of my RSS feed.  Its odd.  I don’t get it.  Have I been hacked?  Who knows?  Honestly, this whole technology thing is only barely under control.  It’s like we’ve created a giant pit bull, like the size of a horse, and we’ve got a tiny little leash on him, a collar that’s more stylish than practical, and then he spies a human friend he desperately wants to lick and cuddle, and his tail is going crazy so we are ducking from it, and now suddenly he’s chasing a squirrel, and then he sees a ball fly overhead so he’s leaping, and we are barely holding on, and now he’s rolling in the grass, and now he’s stopped and is sniffing and so we think the worst is behind us until he takes a big poop… and we really don’t want to pick it up and carry it around with us.

Anyway.  Technology is not the Great Hope.  We are.  Because we are some pretty fierce, determined, crazy, inventive, observant, and thoughtful creatures capable of synthesizing extraordinary amounts of information and experience.

It’s true.

Let me get back on track.

Pit bulls and poop aside, I have some SERIOUS hope for Adahlia right now.  Yes, I know my pervious post was pretty melancholic and depressing.  BUT — I found out a few things I could not have foreseen.

First, and quite happily, I must announce:  She is NOT making antibodies to donated blood.  Repeat:  she is NOT making antibodies to donated blood!

I am so thrilled.  It is such a relief for us. We are SO relieved.

Honestly, its a baffling scenario.   I asked the nurses about it this past week, at her last transfusion.  They brought me the results of her Antibody Screen:  NEG.  She had zero antibodies against blood.

I had been expecting a much different response.

Confused, I asked them, “What about the last two times, when the blood had to be special ordered and shipped in from another facility, and we were here until 7 pm at night? And the time before that, when it didn’t take quite so long, but still took 2 hours longer than normal?”

“Well, it’s possible to make antibodies against blood and then have those antibodies go away.”

“That doesn’t really make any sense.  Isn’t whole point of antibodies (against viruses or anything) is that it is the body’s memory.  They don’t go away for what we vaccinate for, but do go away when it comes to blood?”

They agreed with me that it didn’t make sense, but said it does happen.

“Let’s check,” they said.

So they went and pulled Adahlia’s antibody reports for the last three months.  They brought them to me:  All Negative.

According to her medical chart, Adahila has zero antibodies against blood.  She never did.  The nurses are stumped.  They don’t know what happened during the last two transfusions, why it took so long for her blood to arrive, why I was told that they had to order “safer” blood from an outside facility, who it was who told me she was making antibodies, or why the antibody results haven’t been posting to my view in her myChart account since January (they are there now).

 

To hear that she is not making antibodies is the only possible good news that I could have received from the hospital on the subject.  It’s wonderful.

I have no idea if it was a miscommunication or a true miracle.  But Adahlia is still in the precarious clear.  Thank you, thank you, thank you, God!

Second:  Adahlia’s ferretin (a measure of iron overload) is only 276.  I feel like I should bold that or make it bigger somehow.  276!!  (There.  That’ll have to do.)

This is huge.  Like, the aforementioned horse-sized pit-bull huge.  I’m not sure if I know any other DBA people over the age of 2 with ferretin measures below 300.  (Feel free to comment if you do!)   She has dropped down from over 1600 to 276.  !!!  !!!

Now, ferretin is an imperfect measure.  As I’ve said earlier, it could also mean that her body simply is not fighting as many sub-clinical infections as before.  (Which is good news and something we’ve been working towards.)   It could mean she has less general, systemic inflammation.  (Also good news, as systemic inflammation = bodily destruction & death.)  I don’t know if it means her organs have barely any iron in them, but we are really hopeful that is the case.  And if its not — its still great news.

Third:  Adahlia is on a Chinese herbal formula that makes me squiggle with excitement.  It’s a blood-building formula that specifically targets the spleen and liver in Chinese medicine theory.   It is our GREAT HOPE.   I have been waiting for this formula for years.

Now, that might be confusing to you.  “Why wait?  Why not just use what you think will work?”

The answer, friends, is Therapeutic Order, or the idea that you cannot give something to someone before their body is ready for it.  In other words:  you’ve got to clear out the infections, the pathogens, and any underlying problems, and then you’ve got to restore integrity to the body (the gut) and functionality to the digestive and absorptive processes, before you can go about tonifying or strengthening anything.  You’ve got to do what the body needs; you can’t just jump ahead.  There are all sorts of reasons for this — my favorites are the ancient ones — but this isn’t the place to go into it.

The point is:  Adahlia first tried this formula in late June, around her 4th birthday.  She took it for about a week and then started complaining of really bad belly pain immediately after taking it.  Then, she started vomiting after taking it.

I reviewed her formula — there was nothing in it that should have made her sick.  And her gut wasn’t hurting her after eating any other foods, and we’d done such work to heal it.  I contacted my mentor, and he likewise reviewed her formula, reporting back to me that he was baffled.  I agreed to give her a half-dose to see what would happen.

She vomited.

So we stopped the formula.  Poor Boo — it just wasn’t worth it.  Both my mentor and I figured something must have gone wrong… it just didn’t make any sense.  So I told him we’d put it on hold til we could fly out again to see him and test the formula again.

Soon thereafter, Adahlia got a transfusion.  But what I didn’t get was the heads up that she was making RBCs!  For the first time since January, she had baby red blood cells, or reticulocytes in her bloodstream.  It was double the amount of those she had made in January.  It was still not enough to mean she was making her own blood — it was not even considered a “normal” amount of them.  But they were there.  I hadn’t realized because I had not even thought to check. I was so used to the report being “unable to detect — below instrument linearity” that I was simply unaware.

So, for over a month, she did not take any herbal formula. We went back to see my mentor, and we retested the formula.  With relief, but confusion, we found her body responsive to the formula, as well as favorably responsive to the individual herbs.  So why the belly pain and vomiting?  Was it just her body’s reaction to doing something it had never done?  Was she reacting to the idea of truly “coming into” this world, by making her own blood?

We found that her body wanted an increase of Bai Shao, White Peony, which is effective for reducing abdominal cramps.  So he wrote out a prescription for us to add an increased amount of Bai Shao to the existing formula.  Also, we’d add more Gan Cao (licorice), to smooth out the formula and help it be slower-released.  And my mentor almost stopped there.

“What about a down-bearing herb?” I asked.  “We need something to make the formula go down, to keep her energy down, so that it doesn’t rise back up.”

He thought about it a moment.  He tried a couple herbs.  She strongly wanted one, an herb I personally think tastes great, but is a bit spicy.  He was concerned she might not like it.  So he offered me this plan:

• Add the gan cao and bai shao in appropriate dosage
• If that doesn’t work, and the abdominal pain persists, add an extra amount of bai shao  (provided to me in a separate baggy)
• If that doesn’t work, add in the bai dou kou, the down-going herb (also provided in a separate baggy)

Good plan, I thought.

So we tried it.  Adahlia first took the formula with the added gan cao and bai shao.  She said it tasted icky.  But we made a game of it, and she took it.  She did not have belly pain. She did not vomit.  Success!!  And that was the lunch dose.

Later that night, I gave her the evening dose.  She had no pain, and we sat down to watch a movie together.  Suddenly, she announced, “I have to puke!” and we ran to the bathroom.  She retched out an amazing amount of food and liquid.   But when I asked her, ashe claimed to have no pain.  She just suddenly needed to puke.

The Bai Shao was working.  The abdominal pain was gone.  But still, the formula came back up.  And we needed this formula in her.  While I cannot express to you how perfect this formula is for building one’s own ability to make blood and balance hormones (simply because you don’t have all the years of background in Chinese medicine education and I don’t have the time… its no fault of your own), you must believe me.  It is perfect.

So, I skipped the second baggie of Bai Shao and added the Bai Dou Kou (which is cardamom, for the curious).   I also gave her only half the dosage of the total formula, just because I feared that if she puked again, she’d refuse to try it again.   And then I waited.

And it stayed down.

And its stayed down since then.

Now, I know what you are all thinking.  How can spices and food-grade substances be medically therapeutic?

1. Because they are high-quality or high-grade
2. Because they are being used in a carefully balanced and designed formula in conjunction with other medical herbs, some of which are not food-grade
3. Because we are using specific dosages
4. Because food is medicine
5. Because very wise, ancient sages have recorded how to use these herbs effectively and we are benefiting from their experience, mistakes, and successes
6. Because everything has a frequency or vibration or energy and that’s what we are manipulating with both the individual herbs and the larger chinese herbal formula
7. Because we’ve been conditioned to think that only pharmaceuticals are strong enough or capable of medically helping us, and that’s simply false.

I was so relieved to discover that she is now able to keep the formula down!  I contacted my mentor to let him know of the success, and now we wait and see.

Over the next week, I plan to increase her dosage of herbal formula 0.5 grams from 1.5 grams to 2 grams, 3 times per day.  The week after, I will try to increase it up to the full 3 grams, 3 times per day.

How has she been acting?  Well, she’s only been taking it two days, but I can report that she has been a little moodier than normal.  She’s been irritable and aggressive, not unlike the children who go on a steroid trial in the hopes of going into remission.  Its not quite that extreme, but it is noticeable to the observant parent.  She has also been wanting to sleep more, and yet, seems a bit high strung.  She has certainly been eating more.

I am contemplating letting her off the hook a bit on our specialized diet, so that she can get all the carbs and energy she needs to make her own blood, if that is indeed what she is doing.  Last night, for example, she wanted to eat a banana and it was nearly 9 pm.  That is not normal for her.  I let her have it, and she ate half.

This formula is our GREAT HOPE.  We’ve cleared the sub-clinical infections, and, I think, her body is ready to agree to stay here.  She doesn’t need to abandon her ship anymore.  We’ve designed a formula that should, by all accounts, do some amazing and much needed work in her body.   Her spleen and liver are supported.  She should be able to digest now.

She should be able to transform food into blood.

We shall see.

Prayers, love, light, and friendship, are always welcome.  Thank you for joining us on this journey!!  I pray, pray, pray, that this is our breakthrough… this is our moment.

But even if its not, I don’t see myself giving up.  We’ll adapt.  We will try new herbs.  We will tweak what we are doing to meet new information and try a new direction.

Because its possible.

And giving up has never really been my thing.

Lov,e.