Tag Archives: Diamond Blackfan Anemia

Causation 

Posted on by

Everyone, all of us, wants to know the cause.

Because, it stands to reason, that if we know the cause, we will know the cure.

And the prevention.

Homelessness is caused by laziness.  Bad luck.  Stupidity.  Drunkenness.  Karma.

Illness is caused by genetics.  Nutrition.  Stress.  Offending God (or the gods).  The health-stricken man or woman is getting his or her “just desserts” for being a workaholic or an asshole or a bitch… or for simply being weak.  (And thus, such people should be avoided.  Or at the very least, we should only talk to them once things have turned around for them.)

Good things happen because we are good people.  Blessed.  Hardworking.  Virtuous. Smart. God-loving.  God-fearing.  Strong.  Favored.  Chosen.  Lucky.

And maybe that’s believable, maybe, as long as you are born into a country where upwards mobility is possible and you find affluence and health and you manage to stay that way.  (And you wear blinders.)

But, sooner or later, the bubble has to pop.

You see, my friends, I know what I’m talking about.  I’m no stranger to bad luck.  (I’ve been abused.)  And really good luck, too.  (I was “the pretty one” born into an affluent, respected family.)

And then, more really, really, bad luck.

I’ve analyzed it and meditated on it, and thought about it six ways to Sunday.

And here’s what I think:

I think you can take all our self-serving beliefs (and self-limiting beliefs) about what causes good things to happen to certain people and why some people have terrible things happen to them…

…and shove them.

Because here’s the thing:  When you attribute good life events to hard work or to respecting God, when you imply that some people are blessed in some way, or are “chosen” or “favored,” then the very strong implication is that those who experience misfortune have “earned” it, too, or somehow lost God’s favor.

Now, I’m not saying things aren’t connected.  They are indeed.  Things are connected in complex, miraculous, beautiful ways that we can’t fathom.

And that’s the key:

That we can’t fathom.

When we start to try to pinpoint them, to fathom them, to draw conclusions and causation, we mess up.  We confuse ourselves.

We put ourselves on a false and unsteady pedestal.  If we fall, we’ll either have to hypocritically excuse ourselves, or we’ll suddenly have to consider that perhaps we aren’t, after all, God’s favorites.

When we draw simplistic causation, we alienate people.  We teach our children wrongly.

So stop it.  Stop saying stupid, self-aggrandizing things.

We can work our butts off, and we can be smart as a whip, and there’s no guarantee that things will work out.  That we’ll succeed.

And if that happens to you, it doesn’t mean that you’ve pissed off God, or that you deserve it.

It means that success didn’t happen.  Period.

(At least this time.  Keep trying or open yourself up to trying something new.)

Dropping our obsession with causation means that we stop torturing ourselves when things don’t turn out well.

And we stop patting ourselves on the back because we’re healthy, wealthy, or otherwise.

A couple weeks ago, I made a call to a woman who refers to herself as a “healers healer.”  Basically, she acknowledges that she does the work of helping to heal the healers, so that they can go back out and help other people.

She did a distance reading of me, and a spiritual healing, and yes, my fellow skeptic and scientific friends, she was psychic and legit and as real as you or I. She saw things she couldn’t have possibly seen or known, etc, etc.

I eventually told her of my daughter and I’s story. Like the other psychics and healers (including myself), whom I have consulted regarding my daughter and her apparent inability to make her own red blood cells, she said, “There’s nothing wrong with her.”

Nothing has been so mystifying.  After all, if nothing is indeed “wrong,” why is she slowly dying every month by not making her own blood?

The healer said other things too, like, “Of course, you know that the answer you’re looking for will not come from Western Medicine; it cannot cure her.”

She noted the cloud of sorrow around me, of the grief I carry. She helped me let some of it go.  I cried a lot.

I told her how I had realized a wound of some sort in the maternal family line.  How I had prayed, while pregnant, that my daughter would be freed from it.  But in doing so, it had not occurred to me that “breaking free” would mean that we would go so deeply into it.  I could not have imagined DBA.  I had thought it was an emotional, mental, energetic problem.

And how foolish of me!  Of one who knows the connections between the physical, emotional, mental, and spiritual.  How foolish… I guess I had not ‘known’ the connection deeply enough, or I never would have asked for my child to be freed from it.  Especially because I know that to be free of anything, you must go into (or through) the challenge.  You must transform it, and thus yourself.  You don’t get to just identify it and bypass it.

And of course, this ultimately led to my supposition that I caused this problem for my child.  Through improper handling of stress, diet, or even just thinking that something was wrong at all.

At which point, she said to me:

“Erika, you did not cause this.  There is nothing you could have done.  Please hear me:  You did NOT cause this.  

You’re psychic.  You read this.”

You read this.

I have never once had anyone say those word to me.  It was immediately soothing to my tormented heart.

And I think back, now, to how so many things seemed to conspire against me in that pregnancy.  I was in a car accident in the 2nd month.  I worked in a detox center and was surrounded by people emitting toxins.  I moved in with a partner who was stressed about a job he felt “stuck” in.  I was finishing my 4th year of graduate school and a masters thesis and was taking board exams. A stressful family visit made me feel angry, sad, and isolated.

And that’s not all.

It seemed like no matter what I did, I couldn’t have a peaceful, uneventful pregnancy.  I chose novels to read at random, and they turned out to be about the holocaust, about sacrificing and abandoning one’s own children, about miscarriage, and about infanticide.

In the third trimester, my right kidney failed, repeatedly, flooding my body with pain neurotransmitters and stress hormones, and my right chi pulse, the one carrying the pulse of my child, dropped out with it.

Yet, the whole while, I tried to do the right thing.  I went swimming.  I stretched.  I meditated.  I did reiki and self-healing.  I did qi gong.  I laughed.  I played.  I finally found books that were safe (PG Wodehouse… an author of nothing but ridiculous British humor) and stuck to them, refusing to take chances on any other novels.  I obtained the minimum necessary board certification and gave up pursuit of additional certifications (much to the ridicule of my ego).  I stopped interacting with anyone who seemed to not understand me or stress me out.

I took fabulous semi-nude and naked pictures of myself and my belly/baby.  I received chiropractic care, acupuncture, and massage.  I made myself healthy meals.   The moment I sensed something was wrong, I sought the advice and herbs of a master Chinese herbalist for pregnancy.  I sat in the garden.  I sang songs.  I wrote a journal to my baby, and poems, and stories.  I went bravely into a completely natural childbirth.

There is nothing you could have done.  You read this.

Will I let myself believe that?  Will I let myself accept that?

Will I let myself off the hook for my daughter’s illness?

Will I believe that her embodiment of DBA, this illness, is somehow necessary? That the fates or Gods or whoever, had destined this for us, and that no matter how prepared I was, no matter how vast and varied the tools I knew and know to promote a healthy pregnancy, that my efforts would be foiled?

That my daughter chose this life, this challenge, like a warrior choosing to enter the fray?

That it is part of some sort of plan?

That I read this?

That I tried my best to change our fates, but I could not, for it was not the cup for me to take away?

I think so.

Yes.  I might.

I do.

And do I believe that because you have not been stricken down, that because you are affluent, or healthy, or have survived your “health scare,” or have otherwise have emerged triumphant in life, that you are the blessed, the hard-working, the favored, the righteous?

No. No, I do not.

But you are lucky, my friend.  Know it and be humble, generous, and kind.
For fortunes can change overnight.

And Life is Paradox.

Yes, we have power in our lives.  We can make choices.  And these choices do affect us, and the people we love.

But we are also part of something larger.  Something that we do not control. (If we did, we would all be wealthy and immortal, would we not?)

We are not THE creators of the universe.  We are co-creators.

We have enormous power and we are mere servants.

There is Free Will and there is Destiny.

It’s not one or the other.  Its both.

And trust me, I get it:  It’s a lot to wrap one’s head around.  It is, in fact, unfathomable.

And that’s the way it’s supposed to be.  Because it’s the way it is.

It’s part of the mystery, and part of the beauty.

And honestly, I’m not sure, but I think we might be lucky to be here at all.

The power of the sun and shonishin

Posted on by

There’s an interesting phenomenon in Colorado.  The sun is so powerful that it will melt snow and ice, and steam will rise from the roads, even when it is only 18 degrees out.

Except for when I’ve visited and lived in the tropics, where steam rises from the roads after a normal rainshower in 90 degree heat, I’ve never lived anywhere where steam rises from the roads midday.  And this happens in Colorado on an 18 degree winter’s day.   It is absolutely amazing to drive through, to watch.  I don’t really understand how its possible.

That is the power of the sun in Colorado.

Recently, as I mentioned briefly in other posts, I’ve begun doing shonishin with Adahlia on a more regular basis.  It is a form of acupressure, a Japanese tradition, developed and intended to treat infants and small children who would not be able to sit still for needling.

I must admit that when I was in acupuncture school, I thought it was a bit bogus.  A bit hocus-pocus.  How could a few feather-light swipes down an infant’s legs, arms, and torso with the equivalent of a flattened copper spoon do anything REAL to their health?

It all seemed a bit silly.  And the more the very simple techniques were stressed, the more classes or seminars I attended, the more far-fetched it seemed.  It all seemed a bit of wishful thinking.  A bit of acupuncture fanaticism.  A bit too good to be true.  (Which was disappointing… I had hoped to be impressed and inspired!)

When I first tried shonishin with Adahlia, when she was four and five and six months old, so very little and very sick, and I was desperate with grief and sorrow, it did not seem to work at all.

But now I know I was doing it wrong.

A treatment so simple, yet I was doing it wrong.

Because I was overdoing it.

A infant’s yang energy is concentrated, very powerful.  Their energy system is almost pure — no injuries or infections or blockages or traumas to cut off connections or impede flow, no emotional baggage preventing healing, and likely no spiritual baggage, unless you are subscribing to the past-life or karma camp.

Any doctor will tell you that an infant can spike a fever and come back down in a snap.  A cold can worsen to dangerous levels within hours and can resolve in a matter of another hours… and the same cold could put an adult in bed for days or weeks or months.

This is because the yang energy, birth energy, or vital energy, of an infant is so great.  It decreases as we age, making us less quick to heal, less quick to recover.  By the time we are in old age (unless we do yang cultivation exercises or tonify the yang properly through herbs), the fire is dim, and we get sick quicker and stay sicker for longer periods of time, and we get actually physically cold more easily.

This is why the older folks used to snowbird in Florida, and why they currently choose to retire in places like Arizona and Colorado.   It’s all subconscious — they don’t realize its an yang energy deficiency — but they do know they want to go to where the climate is warm, and preferably warm and dry, because it makes them feel healthier.

Because it DOES keep them healthier.  It helps keep their fires going.

Back to shonishin.

In all my classes and seminars and clubs, it wasn’t emphasized properly how important it is to do just a little treatment on a child the first time you treat them.  A few (2-3) swipes down yang channels only, to encourage energy to root downwards and begin cycling through the body.  No tapping.  No pattern-based treatment.  No moxa.  This principle grows more important the younger the child is, and the sicker the child is, because they are more sensitive the younger and sicker they are. But it should be generally applied to all children, because it is important to wait and see how the child reacts to the simplest, most minimal treatment, because you do not want to risk over-treating them.

Of course, I understand why, in seminars, the instructor typically overtreats the children.  They are looking to demonstrate something, and so they demonstrate multiple techniques.  It would be rather boring to simply repeat the same very few, very homogenous treatment strokes on child after child.  Yet, in reality, that is probably what should have been done.

Because now that I read my rather expensive shonishin text over and over, I read over and over the importance of doing very little on the first treatment, watching for reaction, and then very slowly adding an additional technique if it is determined that nothing (or not enough) is happening.  Tapping can be added on the second visit if no adverse reaction occurs after the first visit.  Pattern-based treatment can be added on the third.  Then, watch and see some more.   Because the child may continue to improve, go into healing crisis (a brief 24-hr period when they temporarily worsen before fully recovering or steadily improving) or show signs of over-treatment (when they worsen and don’t get better within 24 hours).

Poor Adahlia.  When she was so little, I was over-treating her every day.  I must have been blowing her circuits, making her feel worse, and possibly exhausting her more.

Of course, overtreatment is a natural tendency of concerned parents.  It is an expected hazard that must be mitigated when it comes to teaching parents how to treat their children using basic shonishin techniques.  Additionally, in our society, we often think more=better, and this tendency is hard to curb in a concerned parent.  Yet, it is definitely NOT true when it comes to acupuncture, herbs, and energy medicine, especially applied to children.

At any rate, I share this with you because of the success I’ve had with using shonishin, both with Adahlia and with other little ones that have crossed my path recently.  It is absolutely encouraging.  Simply wonderful.  Firsthand, I’ve seen that shonishin seems to help everything from a tendency to catch cold to behavior and ADHD problems.  It does this because it encourages proper energy flow throughout the body.  And children are so adaptable, so healthy at their root, and so vital, that the slightest redirection sends them like a bent shoot redirected gently toward the sun – it quickly grows straight and strong.

What does this mean for Adahlia?

Well, she is scheduled for transfusion on Tuesday.  It will be five weeks since her last transfusion.  And I have never, EVER, seen her this healthy and happy so near to transfusion date.

She is actually eating very, very heartily.  (This NEVER happens.  As regular readers will note, I’ve often lamented how she will stop eating about a week before transfusion is needed).

She is in a great mood, playful, and mentally acute.  She is not clingy, irritable, or quick to cry when she doesn’t get her way.  (This also NEVER happens.  Adahlia pre-transfusion and post-transfusion are typically like two totally different people.  It’s very hard on us.)

She actually can stay awake all day, instead of needing a 3 hour nap midday.  (This also never happens; it is one of my tell-tale signs that she needs transfused.)

She is full of energy, bouncing and climbing and running all over playground equipment and playing energetically.  (This is actually pretty typical… last time we transfused her, her Hb was 6.5 and you would have never guessed it for how active she was.)

She is affectionate towards her father.   (This, unfortunately, is another of our tell-tale signs.  Typically, when Adahlia’s Hb would drop into the 7s, she would not want her dad to hold her, or kiss her, help her, or play with her.  It would always be sad to witness.  This past weekend, she has absolutely been in love with her father, playing and cuddling with him.  She even let him take her away from me for a few hours to go to a playground just the two of them.  He is thrilled of course, and soaking up all the affection she’ll share.)

Her skin tone is better.  This is a very acupuncturist-specific observation.  I’ve observed that Adahlias chest, back, legs, and arms, would get increasingly dry as she got lower in blood.  Her GB channel on her torso would be the first and most notably dry channel above her waist, almost scratchy.  Of course, this makes sense, as she is becoming increasingly yin-deficient as she has less blood.  Currently, though she is nearly five weeks out from her last transfusion, Adahlias upper body skin tone is normal, soft and lustrous, and only her legs are dry.  Even so, her legs are not quite as dry as they typically have been, and it is responsive (the skin tone improves) to shonishin.

Now, she did get sleepy today around midday, and she told me so, but she didn’t nap.  She is certainly pale.  But, she is doing much better than she’s ever done before, both on a behavorial/emotional level and a physical level, as far as appetite and sleep are concerned.

It is wonderful.

I have been doing Reiki treatments with her the past two days, and I believe that those treatments are also helping now more than they did in the past, but I won’t go into all that now.  It is enough to say that she is taking the energy now, and often, in the past, she would refuse it.

I’m not sure what any of this means yet, and if she does not get “cured” but simply lives a fuller, healthier, happier life with transfusions, where she simply feels and lives better despite her anemia, I would be thrilled.  I would accept that.  Because when she is healthier and happier, we are all living a healthier and happier life.

And, there is still reason to hope she will be fully cured.  For there are case studies in which children with serious symptoms such as inability to eat and walk, or hear, or with fatal heart defects (either related to infection or genetic condition), suddenly and gradually begin to improve over a period of months and years.  The body, even of a young child, does not often heal in a blink from serious, life-threatening and systemic conditions.  It takes time. Knowing this, I have seen enough improvement in Adahlia — so MUCH improvement from her normal pre-transfusion state — that I know that something is shifting within her on a deep level.  How it will manifest I cannot be certain.  All I know is that she is living better.

I’ve been prepping Adahlia for her upcoming transfusion, as I always do, but this time there’s a twist:  the MRI under general anesthesia.   It is necessary to check for iron deposits in her organs from the frequent transfusions.  While she is on iron chelation medication, there is no way to know if its working unless an MRI is performed to check for deposits.  There is no other way to know, for certain, how much iron is being stored in her organs — ferretin is an nonspecific marker of inflammation and not a reliable measurement of iron overload.  If her body is in an iron overload state, her organs will go into failure and she will die very suddenly.  Its very serious and an unfortunately common cause of death in DBA, and therefore we’ll be doing these MRIs on a regular basis for as long as she’s receiving transfusions.  While the MRI not an invasive procedure, young children must be sedated for it — they would simply not lie still in such a loud machine.

So this time, prepping for Tuesday, our conversation went something like this:

“Do you think you need a blood transfusion soon?  We are going to the hospital in two days for blood.”

“Yes,” She sighs and nods solemnly.  “Hurts…” she says, pointing to her inner elbow,  “have to have IV.  Adahlia cries.  Adahlia says ‘let me out!’ let me out!'”

“I know,” I say, pausing.  “And it makes me very sad, too.  But you have to have the IV.  The nurses are trying to help.”

“Yes,” she nods.  “Help Adahda feel better.”

“This time will be different.  This time, when you get the IV, it won’t hurt.”

She perks up, looks at me quizzically.

“They are going to put a little mask on your nose like this,” I say, cupping my nose with my palm vertical, so that my fingertips are between my eyes, “and you are going to breathe, “heeee-hooooo, heee-hoooo”  I say, rolling my eyes side to side in an exaggerated manner, to make myself look silly.  She giggles.  “And then you will fall asleep,” I say, dropping my head to my shoulder with my hands folded under it, my eyes closed, “and then they will take pictures of your heart, and pancreas, and liver,” I say, pointing to each organ on her body – middle of her ribs, and then her squishy baby right side, and left side as I name each organ, “and then they will put the IV in while you are sleeping so you won’t even feel it!  And then you will wake up!”  I throw my hands in the air in classic all-done pose.

She is enthused.  She practices with me, putting her hand over her mouth and breathing, and pretending to go to sleep, while I say ‘now they take pictures of your heart and liver and pancreas’ and she shouts:  “And my heart!”  and I smile, and say, “and they put the IV in while you’re sleeping so you don’t even feel it and then we are all done!!”

We’ve done it several times now.   The biggest hurdle, I’m afraid, will be the fact that she won’t be able to eat or drink anything all morning until 830 am, when they sedate her.  That might make her go a little crazy, but I’ll explain it to her tomorrow that she can’t eat the next morning until they do the mask and pictures, and hopefully she’ll be okay with it.

It also might, actually, freak her out a little when they put a mask on her, which is why I’m trying to prep her for it.

But right now its a game, and she’s excited about not having any hurts this time.

And I am too.   It is such a gift to give her a transfusion without an IV needle stick.  And since she’s doing so well, I’m not nearly as concerned about sedating her as I was a week and two weeks ago, when she was doing much worse than she is now.

And our grass and gardens continue to grow, our flowers pushing up, up, up, reaching towards the powerful sun.

 

 

 

Undaunted, we progress

Posted on by

At this point, readers are aware that a lowered hemoglobin makes for an uncomfortable, unhappy baby, which makes for increased demands on stretched parents. For the past few days, Adahlia has showed increased distress, so we knew her hemoglobin was slipping.

It’s a very demanding time. But, actually, like anyone who has had a sick loved one, there are options in how to deal with it. Some might (understandably) lose their temper in what is an extraordinary exercise in loving patience. Some might delegate the care-giving duties to someone else, so as to accomplish other tasks. But there’s another way to approach these times, which we’ve tried to do since the day of her birth: embrace them.

These times, difficult for everyone, can be a time of renewed closeness and creativity. New games, new distractions, extra cuddling, more singing, more field trips, more snuggling, more randomness, more connection. Its a great exercise in presence, as well as a wonderful reminder of the lesson of Jon Muth’s children’s book, The Three Questions, an adaptation of a tale by Leo Tolstoy, in which the main character learns: “Remember then that there is only one important time, and that time is now. The most important one is always the one you are with. And the most important thing is to do good for the one who is standing at your side.”

Last month, I did not handle her decline and transfusion well. I felt like I couldn’t help it. I was extremely depressed that the therapies I was dedicating myself to weren’t working. I felt miserable every time I looked at her sallow complexion and felt in my gut how sick she was. I felt like a mother animal that can recognize when her baby is not viable, and Nature instructs her to abandon it. But of course, I couldn’t and wouldn’t want to do that. She and I have been in this together, our health failing together, riding the beauty of our days and nights together, determinedly hanging in there together, since the beginning.

Unlike animal mothers, who have no hope of helping their young, we have therapies that can postpone a natural death almost indefinitely, in some cases. Grateful as I am to know her, given the depth of my love for her, and knowing all I have and will gladly devote to her, I am so thankful that biomedicine exists, that we have these technologies and transfusions. The idea of taking her to the hospital and not taking her back home, a home full of baby paraphernalia, drops my stomach into a sickening abyss. Yet, because of the blessings of technology, I also have the curse of watching her slip towards death, month after month, ever since she was born, like a sad, personal hell version of that movie Groundhog’s Day. I have thought that, in a way, perhaps it is easier to lose the person you love once and for all, and mourn them like crazy, and then do the tough work of healing from the loss. Yet, of course, I don’t want that. To lose her would wrench us apart and to pieces, and leave me like a stripped, hollowed tree. These dark thoughts, as well as the impotence I felt, as the herbal therapies didn’t seem to be working, were unshakable. Last month, in particular, it drove me into an empty depression.

Of course, it wasn’t always doom and gloom. Even on the worst days, there were moments of joy. But if you’ve ever sat with someone you love as they slipped away (of any age or relation, parenthood does not have a claim on love), you know what I am talking about. There are highs and lows in any relationship, and last month, the days leading up to and around her transfusion left me very low.

After her transfusion, though, I was able to clear my mind a bit and realize a few things:

  1. Adahlia needs her mom at such times
  2. If I am feeling sorry for myself or caught up in my own drama, I cannot be the center, the solid rock, that she needs. Nor am I the playful friend she needs.
  3. It may be easy for me to “shuck off” prideful ownership of Adahlia (ie, the way some parents view their beautiful or successful children as a reflection of themselves), but it is much harder for me to not become attached to her in her decline. I’ve often said that a child’s story is his or her own story, and that the parent doesn’t really have a right to make it a drama for themselves. Adahlia’s beauty is her own beauty. Her intelligence and kindnesses and successes are also her own. None if this I have ever wanted to claim. But, there have been times I have been very depressed about her illness. I have “assumed” her pain as my own, becoming very distraught. Yet, she’s the one near-to-death. Where’s my mettle?

Why do we become so dramatically attached to our children? Contrary to popular belief, its actually not natural — not in the animal kingdom. And in the human kingdom, it can quickly, unconsciously, become a tool for the mother to manipulate or guilt her own child into behaving in certain ways, even restricting the child from becoming what is his or her destiny. It is not helpful for the mother, either. It distracts the mother from remaining focused on her own life, as well as from actually BEING a good mother (she’s too caught up in how she feels about things to respond appropriately to her child’s needs.) In its extreme form, the mother becomes the child, and the child takes on the role of the mother, telling mommy “its okay,” and that she/he loves her, etc. etc. You see, it is absolutely VITAL for a woman to be confident in herself and to not see her child as “her” child in order to remain a rock of support, in order to actually see the child as a separate person and to help them to be themselves instead of something which pleases or reflects highly upon the mother. (You can insert father for mother anywhere you like.)

Its extraordinarily difficult to do, because we are some darn vain, self-absorbed creatures.

It made me remember an amazing teaching, one that I believe in as heartily now as I did before I was pregnant, when I had no intention of becoming pregnant. It is a poem that many future and current parents could use a reminder of:

“Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.” ~ Kahlil Gibran

***

Needless to say, this past month has been much better for me. I just needed to realize how far I’d fallen from all I know to be true. Adahlia’s situation has been like the fire, the crucible, through which all my beliefs have become tested. It is great. I owe her a large debt for helping me to make my intellectual understandings become a part of my deeper being, and my way of life. To walk the talk, so to speak. To know it in one’s bones.

So now, you might be wondering, exactly how Adahlia is doing.

Adahlia has been taking her Chinese herbs almost like clockwork (we have missed a dose here or there) three times a day for the past month. She has taken them willingly, even eagerly, which has been a big relief. She was also so lucky as to spend five days in the Hawaiian sun right before her birthday (the story of how this came to be may be told later.) She got lots of natural VitD from the sun and she went almost daily into the healing salt waters of the pacific ocean. For the past month, we really haven’t done much of any other therapy, except Reiki. In the past week, when I have noticed her skin is rough or otherwise lacking sheen and vitality, I have done shonishin infant massage. But really, this past month, up until the last week, her skin has been outstanding. Lustrous, and not dry, like it had been in the previous months.

She has been in great spirits. She has been practicing standing and has been repeating words after me (“behr” for bear, “iraf” for giraffe, “itty” for kitty, and of course, “ma” “da” “jah” and “bebe”). She waves to people all the time. She claps her hands and clicks her tongue and plays games.

In other words, there were reasons to believe she was doing better. There were also reasons to believe she wasn’t doing super (paleness, loss of balance, sudden weakness…)

As it turns out, Adahlia’s hemoglobin was 8.5 yesterday. This means she will go another week, and we are looking at another 5-week transfusion window. This is only the second time she has gone 5 weeks (the other time was back in April.) The doctors recommend transfusion at 8 and below. (A healthy child’s hemoglobin is typically between 10-12.)

Its very interesting. The formula she is has been on is, again, the one aimed at removing hidden pathogens, called gu, from the body (certain pathogens, like viruses, can inhibit RBC production and even change DNA.) Doctors don’t think that she has a pathogen because she does not exhibit established symptoms, but this, if it is what I am speaking of, is something much subtler than what biomedicine or western medicine typically encounters. It is something that would require multiple books, or lectures and discussions, to explain, because it shakes up the ways we view and understand the world. This isnt the place.

The point is that between April and now, we had switched her formula, perhaps prematurely, from the a gu-removing formula to a tonifying formula. Also, the herbal supplier we were using were perhaps a supplier of inferior quality herbs. (We were doing it because it was cheaper.) But the supplier of higher quality herbs has graciously lowered its price to meet that of its potentially inferior counterpart, and so she has been having the benefit of the best herbs. (Why might it make a difference? That’s another subject altogether and this post is already much too long.)

The bottom line is that I still have hope that we are discovering a natural, herbal, remedy to an extraordinarily rare and devastating condition. The theoretical implications are enormous, as well as the potential benefit to other people suffering similar blood disorders or who have what is understood, at present, to be a condition due to genetic mutation.

Adahlia’s story is her own. The heartbreak and joy of it reflects God and all of mankind. As we insisted we were pregnant, she is not mine, and if she is not mine, she certainly is not anyone else’s either. She belongs unto herself and to God. As her guardians, tested to our depths, we raise up this knowledge we’ve gained. We are not giving up.