Its Adahlia’s umpteenth blood transfusion.  She’s 2 years and (almost) 10 months old.  We are watching Frozen in our transfusion room.  We’re in quarantine because she’s been sick.

It’s been 4 weeks since her last transfusion, when she had a Hb of 6.5 after 5 weeks.  In those 5 weeks, I did daily shonishin treatments on her.  My focus was the liver, in consideration of the hormonal aspects of DBA and the liver’s role in hormone production as well as its role as considered in the chinese medicine perspective.  For the first time in years, her liver enzymes were actually normal, not elevated.  I interpret this to mean that the liver was being supported, and not stressed as it normally is by the disorder, the transfusions, and the chelator drug.

I continued treating her for two weeks, then abruptly stopped.  This happened for two reasons:  first, she started refusing treatment instead of requesting it, and second, because I’ve been so busy treating myself, trying to support my kidney function.

She’s been sick since we returned from Portland.  I assume it’s because she caught something on the plane, though I’m sure the vaccine she got a couple days later didn’t help her immune system fight the infection.  (I put her on a delayed vaccine schedule so her already overloaded system wouldn’t have too many extra burdens, and with the intention of minimizing her systemic inflammation as much as possible before introducing a bunch more inflammation causing agents.  She is behind her peers by several vaccines, but she’ll get them eventually.)

Timing is everything.  Everything has a season.  The best course of action, when you aren’t sure of what must be done, is to wait and watch.  This is the art of Wu Wei – the art of doing nothing.  If you practice doing nothing but listening for when it is time to act, when it is time to act, it will be clear.  This instinct can sharpen such that you will almost seem psychic.  This is the art of gong fu.  But really, you’re just being very, very observant.

It had been time for Adahlia to have an MRI awhile ago, but the docs were reluctant because she would have to be sedated. 

She hasn’t done well this past month.  Besides being sick, she’s been sleeping a lot.  Much more than normal.  And I noticed that she was showing signs of deficiency in fire, or the heart.  

She was transfused at only 8.9 Hb today at 4 weeks.  This is good – she could have easily gone another week. But, with my surgery in two days, we wanted her to be feeling well. 

It turns out that her ferretin (a marker of inflammation that many hematologists mistakenly use for iron overload) has dropped further, to only 557.  This is great, but it doesn’t mean she doesn’t have iron overload.

Because her MRI came back with very different news.  Her liver is actually doing ok – the hematologist considered the level of iron overload to be mild to moderate.  Her heart, however, he was concerned about.  He considered the report on it to be a yellow flag.  It wasn’t an emergency, but he thought we should consider  steroids with the intent of reducing transfusions, and/or increasing her iron chelator dosage, and/or adding another chelator.  He said it warranted watching closely. Upon my inquiry, he said that meant repeating the test in a year.

Personally, when we are talking about heart failure and death, I do not believe that qualifies as a close watch. I asked what a red flag would be.  He said that as long as the Echo was normal, and the heart wasn’t compromised in its functionality, then he wasn’t too awfully worried.  But then I asked if the Echo was normal and he admitted that he couldn’t remember what it said, but that he’d probably have remembered if it was emergent.

In the medicine I practice, we do not wait until the structure or function is compromised.  We do something to prevent the physical loss.  So you can see that I wasn’t especially enchanted with his answer.

Especially when I learned that they did not do an analysis of her pancreas, even though I specifically asked them and reminded them, because it can be severely damaged by iron even when the others aren’t, and instead looked at me in surprise, saying they’d never heard of checking the pancreas for damage.

Especially when this morning, when I asked the nurse to run the labs by me, as I do every time before they draw blood, in order to make sure nothing slips through the cracks, she responded with “type and screen.”  Thats it.  No CBC.  No retic.  No ferritin.  No CMP.  Of course, I had to artfully disagree with her so that she wouldn’t feel foolish, so that hospital wouldn’t look like its left hand didn’t know what its right hand was doing.

I cease to wonder at it.  It’s just a bit tired, the whole routine.  It is like living in a fishtank.

Speaking of tanks, Joe bought me the best pre-surgery present anyone could ever give: a float.  

Floating is sensory deprivation in a small, shallow, dark, enclosed tank, partially filled with extremely concentrated salt water.  It is so salty that you become buoyant, like a sea otter.  And, like a sea otter, you float on your back.  But there are no tasty clams, no gulls calling.  It is completely dark.  Completely silent.  It is like a floating sarcophagus.

Psychologists recommend it as a healing practice.  Creatives use it to connect to inspiration.

If you’ve ever had a nightmare, and thus know the power of your own mind, it’s a bit terrifying, especially if you have any claustrophobia or hydrophobia.

I had floated once before, before Adahlia was born, but this time was much more intense, probably because these last few years have been so tough.  I actually had a series of three small panic attacks, one right after Id managed to calm myself down from the last, where I was convinced that there wasn’t enough air in the closed tank, that I wouldn’t be able to lift the heavy door to get back out, that Id suffocate in the tank and drown.  My heart palpitated and fluttered and pounded and thudded; I felt as though I might vomit or faint.

But I managed to stay in the dark water, and slowly, using releasing mantras, I began to unwind the tension held in my body and mind and began to relax.  It took a very long time.  When I ‘woke up’ to realize I was no longer holding tension or fear, I began affirmations.  (Whenever you release something, it is important to follow it with affirmations related to what you’ve released.)  By the end of the 90 minutes, I was floating peacefully and joyfully in the dark, smiling and reconnected to a self that I have not embodied so fully in years.  I felt powerfully loved by myself, and deeply grateful for my body and life.  The beauty of this opportunity was reopened to me, and I felt amazed and honored to exist in it, with so many powerful others who contribute to it.  It was so healing that I cried as I drove home, not because I was sad, but because I was so purely happy.

And then, last night, I had a strange segment in a dream during which a wild looking shaman woman recognized and greeted little Adahlia with excitement and respect.  She said to me, “She does not come here often!” meaning that Adahlia was a spirit in the higher realm that does not often deign to take human form.

I said, “She has a rare blood disorder….” hoping to get the shaman to help me with clues to treatment.

“Of course she does!” She snapped.  She meant that Adahlia did not necessarily belong on earth for a long time.

And so, when all this happened today, perhaps you can see why I was not actually upset.  

The truth is that the shaman with red fire in her blue eyes is right.

Earth is only a temporary home.  

We can learn a lot here – mostly, if we are wise, about ourselves.

And we have no real knowledge of the purpose of anything.

Today, I wasn’t surprised to learn that Adahlia is halfway on her way to heart failure.  That she shouldn’t have this much iron in her heart yet – that it shouldn’t have gotten this bad so quickly; that’s she’s a bit too young; that it doesn’t really make any sense given the rest of the picture.

We can do a lot to be healthy, to love and care for and support those we love, and between all the different medicines we have much to support us, but we control nothing.

Far from disconcerting, I find that fact incredibly peaceful.  

Of course, it doesn’t mean I am giving up on Adahlia any more than I’m giving up on myself.  It means that my observations were correct, and that her heart is struggling, and I should try to help it.  

And so I have.  And will.

And yet.

Add all the religions and spiritualities and spiritual experiences of the world together, and we have only glimpsed fragments of what exists beyond the physical.

(It might be a beautiful mosaic.)

The best we can do is move with the seasons.

To love ourselves and each other through the seasons.

To release our fear and tension and worry and discover deeper levels of what it means to be empty.

And to fill that void with light, and energy, and love.

Until we shine with it.

And fly away home.

I must’ve started a post in my head a dozen times in the last few weeks, but I’m finally getting around to actually writing it.  Adahlia is napping now – which is rare – and though I’m tired too, I want to seize the opportunity to update everyone.

Adahlia has always loved the Happy Birthday song.  Sometimes, she’ll take a piece of her pretend cake (its a little wooden cake that came as part of a little wooden tea set).  She will set it on the table and sing the song for herself, or for Hamiya (her cat), or to some unknown friend, finishing by blowing out the wooden candle and saying “alright” if its a solemn occasion or “yayy!”  if its a joyful one.  Sometimes, she claps.

Two days ago, for the first time, she sang a song that wasn’t the Happy Birthday song. We were out in the backyard, and I was picking up fallen tree limbs.  Over on the patio, I hear her say to herself:  “jumping… dancing.”

Now, she wasn’t really singing those words. And to many people, they are just two verbs.  But I know them.  And probably there are some other folks out there who know them too — other strange people who have somehow found that they’ve memorized nearly every line to every Disney movie.  That somehow those lyrics and lines created indelible marks on the fissures and folds of their brains.  That somehow, even after decades, their neurons know exactly where those lines are stored, along with precise pitch and tone of delivery, and exuberantly race to retrieve them, while they will dally in the retrieval of the names of friends, confuse dates, get lost looking for directions and locations, misplace amounts for recipes, and otherwise make it impossible to recall the useful tidbits.

I whirled with my load of twigs and beamed.  Joyfully, I sang out to her:  “Strolling along down a… street!”

She looked over at me, surprised.  Then, running her hand along the patio chair and kicking her feet at the fallen crab apple blossoms she said:  “Up where walk, up run…”

“Up where they stay all day in the sun!!”  I sang.

“wannering fee.  wish could be.”

“Part of that world!!”

I nearly cried, I was so happy.  Her first true song.  Her first song that was stuck in her head.  Her first song that she felt a need to sing out loud.

Adahlia says four and five word sentences these days.  (“Hamiya is little b[l]ack cat.”)  With my help, she can find needed puzzle pieces and put together a 16 piece jigsaw puzzle.  (I am not a puzzle enthusiast.  But she asked me to do it with her 5 times in one morning and by the end, she was finding the pieces, rotating them, and pressing them into place.)  She climbs parts of the playground jungle gyms that make other parents look at me nervously.  (She won’t let me spot her anymore.  She tells me to stand somewhere else.)  I introduced her to the magic of the roly poly bug and the ladybug.  We spend a lot of time looking for them, as well as worms.

Just yesterday, a robin was in our yard, also looking for worms.

“Look!  A robin!”  I said, pointing.

“Robin Hood!” She replied, running after it.

Hamiya spends a lot of time in our backyard with us, jumping after insects, which has caused Adahlia to conclude that most creatures are interested in bugs and birds, including our car, and the postman.  (She loves the postman.  Just this morning, she sighed loudly and announced:  “Adahlia a little bit sad.”    Why are you sad?   “Miss postman.”)

Adahlia has apparently picked up an interest in the healing arts, which I suppose is natural, given that we do so much medicine around here.  One day, I realized that she was giving herself acupuncture.  She removes the caps of her markers and sticks the markers in her socks, so that they bleed into her socks, turning them a rainbow of colors.  She announces that she’s doing “a little atupunture”, waits a beat, and then says “All done!” and removes her markers. (And this shows you that I’m often working on my legs near my ankles — that’s where powerful points of the spleen and kidney channels are located.)

She also loves giving the cat shonishin (infant acupressure) and her dad a facerub that she calls a massage, which she follows up with a very precise and delicate poke with some sort of artifact (such as a stone or pen).  Then she stands back and says, “there.  that’s better.”  She also will pretend to open up capsules and add the contents to the cat’s toys, “add a little dub mai.”

Ah, medicine.

Medicine medicine medicine.

In seven days, I will be in an operating room while a very jovial man with an impressive surgical following attempts to locate the problem causing my kidney to backup, cut out the problem, and reattach my ureter to my kidney so that it will stop kinking up and drain properly.  He will be aided in his efforts by robots.  This is all kind of fun, in a sci-fi way.  It is not kind of fun, in the way that this is their last attempt.  If this doesn’t work, they will schedule me for a final surgery — a surgery to remove my kidney.

I have fought for this kidney.  I have fought for this kidney like I’ve fought to get Adahlia the medicines that I know she needs, and that I hope will cure her.  I have fought for this kidney since it first failed, in April 2012, when I was 7 months pregnant with Adahlia.  With the efforts of alternative medicine, including herbalists and acupuncturists, I have improved its function from 10% in July 2014 to 19% in December 2014.   (This fact, alone, convinced the surgeons to try to save it.  The surgery to save it is very expensive and rather risky, and it tends to fail more often with more interventions (such as stent placements) and lower kidney functionality, both of which are against me in this particular fight.)

This surgery was scheduled twice before, and both times, it was cancelled.  It was cancelled the first time on the day before the surgery, because my surgeon had thrown his back out and couldn’t operate.  At the time, I felt like it was a stay of execution.  I did not have a good feeling about it.  And yet, I knew it had to be done.  Miraculously, it was put off for another few months.  And then again, it was cancelled.  It was cancelled because the second surgeon had done a nuclear functional analysis of the kidney, and had discovered that it only had 10% of its function remaining, and thus, the pressure flowing through it was too low, and its ureter would probably collapse even after surgery, and the surgery would fail, and it was thus not worth the attempt to save it.

He scheduled me for surgery to remove the kidney.  I cried, and then refused to let them do it.  I told them I would try to revive it.  I switched from doing regular acupuncture to electro-acupuncture, and a lot of energy work.

I was a little disappointed that its function only increased to 19%, even though it was enough to convince a new team of surgeons in our new town to go for it.  But then a mentor re-framed it for me, saying:  “you doubled it’s function in six months.”

When thought of like that, well, that’s pretty good.

So I’ve been aiming to double it again.

I know there’s a connection between Adahlia’s condition and my own — and more than just the genetic connection, or the fact that silent kidney malformations can be part of the DBA gene expression.

I’m hopeful that if I can restore my flow through my right kidney, often associated with the “Gate of Life” in chinese medicine, that it will positively impact Adahlia’s own energy flow.

I have to stay overnight at the hospital on the night of my surgery.  I’ve been trying to prep Adahlia for this, much as I prepped her for her sedation and MRI last month.  She still co-sleeps, and breastfeeds, and doesn’t appreciate being away from me for very long during the day, much less at night.  This will be hard on her.  It will be hard on Joe.

We went to Portland earlier this month for new herbal formulas.  My mentor tested me for approximately seven different herbs he uses to treat subclinical infection, and for the first time ever, I did not need any of them.  Adahlia, however, still needs the same rare and powerful herb that we were both taking for the past two months.  The good news is that she still doesn’t need the herb for inflammation, which she was on for over a year, and he believes her brain inflammation is much resolved.  From observing her, I can attest that she seems to be sound on a cognitive level.

Emotionally, she’s been struggling.  We think she needs blood, and we plan to transfuse her on Monday, so that she has a ‘full tank of gas’ to get her through the first couple weeks when I am recovering and need my energy for myself.  She’s been sleeping a lot, which could mean a growth spurt, but could also mean low hemaglobin.  Adahlia’s nurse is wonderful, and has agreed to transfuse her at a half-dose if she’s below 10 Hb, just to tide her over through my surgery and first couple weeks of recovery, if she’s not at 8 Hb or below and qualifying for a full transfusion.  This definitely gives me some peace of mind — I don’t want to be concerned about her blood levels while recovering from surgery.  Even so, rather than risk an IV placed only to discover that they won’t give her blood (ie, her Hb is at 10), I intend to take her for a finger-prick test on Friday.  Removing the IV (pulling off the sticker from her inner arm) is sometimes just as bad, or worse, than putting the IV needle in her vein, and so I don’t want to do it to us if we don’t need it.

I just remembered that I will probably get the results of her MRI and echo next week.  (These tests were performed to check her level of iron overload, which can lead to organ failure and death.)  I’m assuming they were low or at least not at a dangerous level, since her hematologists did not contact me immediately.  (Then again, I’ve learned that such assumptions are foolish and dangerous.)

The past few years have been expensive.   We accumulated nearly $20k in credit card debt related to medical bills (including the cost of herbs, supplements, acupuncture, and other specialists) by March of 2014.  Adahlia’s grandparents helped us out, and continue to help us, but we still have nearly $5k re-accumulated in medical debt.  Yet, when you think about the fact that every time we fly out to Portland we spend $1400-1600, and we fly out every 2 months, it’s not that surprising.   The herbal consultation alone costs $900 (the cost includes 2 months of herbs for Adahlia, and one month of herbs for myself — we’ll have to spend another $200 on a refill for myself), plus plane tickets for the two of us ($400), plus a rental car, and a hotel room.  (We’ve tried to stay with friends but it really doesn’t work very well. This is absolutely no reflection on our friends — who are wonderful — but a reflection of our intensive, ridiculous health regimen.  No matter how gracious our host, we always end up missing doses.  It is much easier for me to be able to set all our medicines out in the open, where their very presence reminds me that we need to take them, where we don’t have the distraction of visitors, and we have a dedicated and quiet place to retreat to, where I can keep tabs on what was taken and what needs taken, and where I can freely employ all of my many techniques for cajoling her into taking her medicine, without having to explain anything to anyone.  Even so, we often miss the mid-day dose — its tricky to take medicine on an airplane or in an airport, or in the backseat of a rental car.)  Considering that the chinese herbs are only part of what we’ve been doing (other supplements include homeopathic spagyrics, fish oils, coq10, vitamin B12, folate, a handful of amino acids, and probiotics, plus there is the cost of the nutrition analysis tests and other tests, and acupuncture supplies), our $5k of credit card medical debt is pretty amazing.  It would be much, much greater if it weren’t, again, for the help we’ve received from grandparents and friends.

So, really, we are lucky.  But as my current card will be maxed out today, when my incredibly generous acupuncture friend will drive to our house and give me an hour of treatment here, using my equipment and needles, for a mere $36, and I will have to start charging my other credit card, I admit that I’m a bit … well, saddened.  This medical adventure has taken an extreme toll on us in every way — including financially.  And I have to brace myself for the reality that its not going to end soon.   Realistically, even if all goes very well, and we can continue to taper off supplements (we’ve already started doing this — we no longer need the homeopathic spagyrics, and I no longer need an herbal extract that my mentor has used to help people in kidney failure stay off dialysis), we will have large medical expenses at least through the end of this year.  Probably longer.

BUT, I can’t think about that now.  Because it doesn’t serve to do anything but stress me out.  Instead, I focus on how far we have come, and how well Adahlia is doing — she is healthier and meeting developmental milestones faster than many “healthy” kids her age, despite her blood disorder.  I focus on the fact that we’ve already accomplished the impossible by increasing my kidney function from 10 to 19 percent.  The fact that my spine no longer hurts.  The assumption that now that my subclinical infection is gone, my immune system will be able to calm down, and stop attacking my spine and kidneys, and my glomeronephritis will stop worsening, and kidney function in both kidneys will improve, and my spine will start to heal and disks begin to regenerate.

The truth is that I actually feel really lucky, really blessed (as corny as it sounds), and really amazed at what we have been through.  At the synchronicity.  At the generosity of those who’ve been touched by our friendship and life together.  At my ability to diagnose when something is wrong, and my reservoir of strength that’s refused to give up, even when I’ve been severely depleted.  I feel wonder and gratitude for this opportunity to trust in myself, my understanding of God and higher good unfolding, and my inner knowing, in ways few have been challenged and privileged to come to trust in their own.

And actually, though I definitely do NOT want to be cut open, I feel good about this surgery.  I don’t feel the dread like I did last year.  The timing is right.  It is not going to be comfortable.  But it is right.  I am ready.

Perhaps I was correct years ago, when I was pregnant with Adahlia and experiencing the kidney and spine pain, but thought:  “This pregnancy is going to move me through something.  This experience is going to heal me.”

Three years, much toil, tremendous pain, many thousands of dollars, incredible heartache, and unfathomable love later, I feel a strong sense of purpose and peace.

No matter what happens, it is right.  It is okay.  This is a complicated place, but the principles are simple.

When you’ve come this far, you can’t go back.

You’ve got to go for it.

You’ve got to trust in it.

And we are.

These last couple of days have been rough.

We’ve had a few glorious ones — slow walks to and from the nearby coffee shop, bicycle rides with her in a seat on the handlebars to the grocery store and to a picnic in a park, hours spent tending the flowers erupting from the bulbs we planted last fall (“Keep their coats on so they don’t get cold when the snow comes!” I said, referring to the papery, onion-skin-like sheath protecting them, as Adahlia placed them in the holes I dug.)  This week, we placed river rocks into a path that wove through the flower bed, so that the utility man doesn’t step on our fragile green friends.  We have more flowers than I can count — tulips and hyacinths and things I don’t know the names of… fragile little treasures coming up from our side yard, promising color and beauty and life.

But, my friend, right now I am exhausted.  I am struggling with insomnia.  I alternate between a few different acupuncture and homeopathic remedies to try to get my mind and energy to calm down so I can sleep.  Adahlia must have woken me five or six times last night…  in an infant, okay.  It is to be expected.  But now?  At nearly 3 years?  Friends, I have had only one night — yes, that is 1 night — of unbroken sleep since she was born.  And actually, it is longer than that, since I was not sleeping through the night when I was pregnant. I have been sleep deprived for years.  How can I expect my body to heal such a deep-level issue (autoimmune and nephritis) if I am woken every 45 minutes, and cannot fall back asleep when I am woken until hours later after one of those times?  Sometimes, it actually makes me angry at her when she wakes up and then wakes me up.  Last night was one of those nights.

Adahlia will be four weeks post-transfusion on this coming Tuesday, and she has a terrific head-cold that is just now resolving.  She is needy and sweet and it breaks my heart… asking “Mama hold you?” in the night.  Touching me gently and saying, “Mama love you” and nodding after she’s done something to make me close my eyes in an attempt to take a moment to gain perspective and refocus.

My surgery to repair my kidney issue is in five weeks.  I am so so so exhausted.  There are not words to express it.   I am exhausted.  I am trying to do acupuncture on myself every day to build up my energy so that the surgery will hold, so that it will not fail, because this is my last chance to keep my kidney.  If this surgery fails, the surgeons will schedule another surgery to remove it.  I need to take care of myself.  I need to do absolutely everything I can to try to save my kidney.   Adahlia takes everything I can give her and wants more.  And don’t get me wrong:  I want to be everything she needs.  I want to be the mother I know I can be:  playful, encouraging, reflective, kind, and strong.  But I’m exhausted.  My friends, I am so exhausted.  I just need a little bit of space, just a little, to try to rest, to take care of myself, but she is approaching transfusion, and somehow, though I cannot imagine how it could be possible, I know she will only get more demanding, more needy, and throw more fits, as she enters her own state of exhaustion and pain due to having a low red cell count.

There is still hope.  I am treating her from a different perspective in shonishin/meridian therapy, and I believe it is the correct one for her.   I believe I have finally found the underlying pattern to her blood disorder, the right approach to child acupressure to treat it, but it may take months before we see results.  There are days and situations in which she is doing better than she has been — less irritable, less demanding, less quick to anger and tears.  But the last two days have been extraordinarily taxing.  And extraordinarily demoralizing.

If you have a moment, send a little love and light this way.  I need to get better.  I need her to get better.  We must find a way through this disorder – we must find the key to her health.  We cannot keep living this way.

On March 24, Adahlia will be sedated for an MRI procedure to check the deposits of iron in her heart, pancreas, and liver.   She is scheduled for a blood transfusion on the same day.  10 days seems like such a long time away — how will we all survive the next 10 days, if the last two have been any indication of what we can expect?  And any procedure involving sedation has risks, including the risk of things going unexpectedly wrong, and it just makes my heart break all over again to put her through it.  To watch them put her to sleep.

God, this whole stupid disorder just breaks my heart, and makes me want to smash things, throw things, scream and destroy.  Its just so hard.  It doesn’t make sense.  It seems so unfair.  Its incredibly tragic and taxing and emotionally draining.

Biomedicine continues to offer very little — Adahlia is negative for HHV-6, and as strange as it sounds to have been hopeful that your child has a viral infection, I was indeed, for such an infection is curable with antivirals.  There remains no satisfying explanation for why her bone marrow can, but isn’t, producing enough red blood cells for survival.  There are symptoms that don’t make sense, and complications that don’t make sense, and treatments that don’t make sense, and case studies of remissions that don’t make sense.  Biomedicine saves her life roughly every month with a blood transfusion.  But it offers nothing that is satisfying.

And yet, there is hope.  There are natural and acupuncture modalities and methods that do make sense, and theoretically should help.  There are case studies and reports and techniques to improve vitality, restore homeostasis and functionality, and aid the body in repairing itself.  I am doing everything I can.  Its not everything I could do, though.  And its not enough.

Adahlia just cried out a pitiful “nooooo!” in her sleep.  She is having a nightmare, and I need to go to her.   And then I need to go into the other room and do some acupuncture on myself.   And then I need to sleep, because I am exhausted.

And because we have another big day tomorrow.  An impressive slew of various supplements and medicines and interventions, one of which, or the combination of which, I am hopeful will help her.  Because I am determined to help her.  Because it will kill me if I don’t help her, so I might as well nearly kill myself trying to help her.

And because she will want to see her flowers, green stalks and leaves pushing out of the earth, which she touches carefully with just one finger, so that she doesn’t hurt them.         

So much has happened in the last few days. And the sum of it is this: I feel like Adahlia — like a 2-year-old taking in, in, in — I am always learning.

First, I have made a few absolutely wonderful and indispensable friends in the DBA community. Similarly active in the care of their children, similarly interested in integrative medicine and finding and addressing the root issues of this mysterious disorder, I have learned a lot from their experiences. After comparing our children’s situations, I am a little in awe of the complexity of the situation we face, but I’m ultimately encouraged that this does all make sense, even as it might appear not to make sense. Much like you need to stand back from a tapestry to see its design, and if you stand too closely, all you will see are threads going this way and that.

One very interesting thing I’ve learned is that strep and herpes potentially occupy the same cells in the body. Now, I have yet to discover if this is actually true, but it was said by a doctor, and it was unsolicited information, so until I can look it up on my own I’m going to accept it as potentially true. Since some of what I’ve discovered about our illnesses has pointed to a virus, of the herpes family most likely, and other things have pointed toward bacteria and strep, I find this rather mind-blowing. And imagine, if both are in the system, in the same cells, and multiplying, could you blame the body for getting dysfunctional and becoming auto-reactive?

Another interesting thing I’ve discovered is that Adahlia actually has plenty of B12. Plenty, that is, in her blood stream. Actually inside her blood cells? Well that’s another situation altogether. Now of course there are a few forms of B12, and the methyl- form is most biologically active, and often recommended in B12 issues, because it’s already methylated and the body doesn’t have to perform a step that can be tricky for people with undetected genetic conditions (unrelated to DBA) that don’t properly methylate. Lots of people have this issue, and methyl-cobalamin (B12) does wonders for them. But that’s not the issue here. Even the methyl form doesn’t seem to do anything.

Biochemistry is complex. There are several cellular friends and steps necessary to bring B12 into the red cell from the blood stream. The good news is that her low cellular B12 is not a gut absorption issue. So we can rule that out. B12 is making its way into her blood stream… in vast quantities, in fact. It’s just that it’s kind of just stuck there, floating around, not getting to where it needs to go. The bad news is that I can’t really test her red cells directly, like I tested her white cells, to see exactly what’s wrong in them, what nutrients they lack, because all the red cells in her blood stream these days are donor cells. Yet, I can assume, from talking with my new DBA comrades, that Adahlia probably has a deficiency similar to another DBA child, who is responsive to steroids and so her red cells are her own, and whose red cells were tested for nutritional deficiency and found to be deficient in lithium.

Lithium? you ask. Bipolar disorder? Wasn’t Kurt Cobain on lithium?

Not exactly. That’s lithium carbonate. Designed by a pharmaceutical company and available by prescription. I’m talking about a natural mineral, lithium orotate, which participates in many neural functions, and is necessary to the biochemistry of the body, including the act of bringing B12 into red blood cells. Tiny doses of lithium orotate have been used to treat ADHD, Alzheimer’s, and many other conditions. Guess what? Lithium also inhibits viruses.

(And here again, we have yet another clue that points us to this disorder’s involvement with the brain.)

Lithium orotate can be supplemented with trace minerals (or ionic) minerals. In actuality, I’ve already dabbled with giving her trace minerals, as someone once strongly suggested it for her, but I’ve only recently started giving it to her on a regular basis, because of her persistent selenium deficiency. Selenium, a trace mineral, is also a necessary component to many reactions in the body, and it is used to activate antioxidant reactions and remove free radicals. With this new knowledge, we will keep using trace mineral supplements.

I’ve also learned more about the hormonal component of DBA, the use and side effects of steroids, the benefits and consequences of bone marrow transplant. The truth is that biomedicine is nearly entirely focused on treating the anemia of DBA, and has paid little attention to the many other symptoms and complications. It is a shame. The hormonal aspect of DBA is fascinating. The difficulty with detox and absorption, the imbalance of pH in the blood, the tendency to accumulate toxins and microbes — it is all very important and provides a clue to unraveling it as a disorder.

Adahlia is doing absolutely fantastic after her umpteenth blood transfusion on Tuesday. (Notice her doll is also getting a transfusion… The Dalmatian puppy was presented to her by hospital staff, they were giving them out to all the children in the oncology/hematology clinic.)

Her Ferretin is lower than last month, which is good, the sort of trend we want to see. She is growing like a weed. Last night, she counted her watercolors pigments in their tray, up to eight. Then, she tried counting backwards! She skipped six and went straight to five, realized she erred and stopped, unsure. Her dad was thrilled, told her that he understood what she was trying to do, and to keep at it.

She sings songs and dances, by herself or with me or with her cat. We have long conversations about whether we should wash the car or not, if the snow is coming and what that means, and if she can have a treat or do a favorite activity now, or if she needs to eat her food first.

Today, at dinner, she showed that she understands another kind of humor: Out of the blue, she picked up her fork, looked at her dad, shook her head and said: “dinglehopper.”

We laughed. We had just bought The Little Mermaid a few days ago, and she’s really taken to it. We said: “You’re right! It’s not a dinglehopper. That seagull was making things up! Do you know what that is?”

“Fork,” she said sighing. Then she grinned, ran it through her hair, and threw it on the ground.

The child amazes me.

We had a fabulous day the day prior to transfusion: we unexpectedly discovered that a friend was in town, and was staying at a house where there were horses and huskies. They invited us over, and Adahlia got to pet and feed horses, which was a big treat for her. And then, she got to go dog sledding. No joke! I stood on the back rails and steered, and she rode in the sled. It was incredibly fun!

Adahlia was hesitant at first to even get on the sled, but by the end, she climbed up on the rails, wanting to drive it herself. An absolutely magical time… The sort of thing that I feel so grateful to give her, even when it’s more an act of providence or fate than anything of my own doing. After all, who gets to drive a dogsled these days? A dream come true!

And let’s not forget that Adahlia did all this on the day before her transfusion, which means she had a Hb of 6.5. (Less than half of the red blood cells that you or I function with).

Today we made a paper dragon puppet for Chinese New Year at the town’s museum and then met our friends for an afternoon playdate at their neighborhood park. Adahlia was really sweet to the little boy, just shy of 2 years. She really likes him. For the past two days, she’s been talking about how she wants to trace his hand. She seems to want to share things she loves with him: her cat, her rocking horse. She had the biggest grin on her face just riding in the wagon with him. It’s wonderful to witness.

I’ve also learned, or reawakened, my appreciation of acupuncture. On Weds night, I had my first treatment that I didn’t give myself (ie, another acupuncturist did it for me) since last July, and it was sheer, heavenly bliss. My kidneys were very happy, and I slept deeply that night, awaking refreshed.

On Sunday night, I had managed to really mess up my right foot by twisting my ankle, and falling forward on top of it. That night, when I awoke to use the restroom, and when I woke up the next morning, I could not put my weight on it.

Great. I thought. How will I take care of her, lift her, and the transfusion is in 2 days?

I needed to do something and didn’t have the luxury to rest, so I put 2 needles in my left ear at the foot zone and began doing slow circles with it. Instantly, the pain was significantly reduced. Within a moment or two, I could put weight on it. In a few minutes, I could walk on it. An hour later, I was carrying Adahlia across a busy street, limping a little, but functional. And by that evening, I was balancing on the rails of a dog sled, my entire weight on that injured foot as I pushed vigorously with my left foot to help the dogs thru the snow.

Tonight Joe showed up with a severe muscle pull from overdoing it with a sprint workout. He doesn’t like acupuncture… and that is putting it mildly. Eventually he agreed to ONE needle. In his ear.

Instantly better.

Acupuncture is amazing.

So I cracked open my shonishin pediatrics acupressure text and began to read. I had tried treating Adahlia before, in her first year of life, but as I read, I realized how impossible it had been at the time. Back then, my brain was a foggy, muddled mess. The text seemed impossibly complex, the language difficult to follow. I could not focus on it.

Now I was reading the text. I could think about it. I understood it without straining, although there were still paragraphs I had to reread a few times. I reflect back and can only wonder at what carried me through those very difficult months — such a sick baby, and so sick myself, but in ways that no one, not even my family, or doctors, could see. I could only try to express my fatigue and pain, but such things are invisible to others.

As my new acupuncturist friend said, “Just think about the elderly, how they must feel trying to express what is going on with them, and their children and doctors writing them off.”

“Or anyone not educated in the system of medicine we’ve learned…” I replied. “If it weren’t for the fact that I knew better, that all these symptoms actually did fit together in the oriental medicine model, I might’ve been convinced that I was weak, or being a hypochondriac, or whatever. It was hard enough for me to believe myself… to keep pressing forward. If it weren’t for our education, I might have decided it would be easier to just let it go, and do what doctors wanted me to do, and tried to ignore it until things got so bad that it was too late.”

Remember, that in the oriental medical model, the kidney, brain and bone marrow are all considered together as part of one system. In the western model, they are very separate. But in the oriental medicine model, they are always considered together. They serve as the deepest layer of the body, the most critical reservoir, the place where yang is held and contained within yin, where it transforms to yin before it turns to yang again.

I can only thank the chinese herbs that we’ve been taking, that have been working to clear this strange infection-like, autoimmune-like condition from Adahlia’s body and mine, from our brains, and for the recovery of my faculties. For the fact that I can read an academic book again without my head clogging up and spinning.

And I’ve been putting it to good use. I actually found my old medical school biochemistry binder and have been going through my notes. I’ve read up on the herbs in Adahlia’s most recent formula: I wouldn’t have thought of them myself, but I am a novice looking at formulas devised by a world-famous expert, and they are perfect, absolutely perfect, for relieving her symptoms and the underlying energetic dysfunction. I’m 3 chapters into the shonishin pediatric acupressure book and, with the unequivocal success of my last (and only) recent attempts at acupuncture, I am reinspired to help her.

This is a crazy journey.

And it’s never about the answers.

It’s not about the conclusion.

It’s about learning.

About claiming yourself.

And so many things.

Surely, you’ve heard the joke… young or young-minded people referring to Valentines Day as VD-day, referring to venereal disease.

(Seriously? you’re wondering. Ok, Erika, this had better be good.)

But it IS good, I promise you. It’s better than good. It’s flipping fantastic.

Human Herpes Virus (HHV) is one of the most persistent and trouble-causing virus families on the planet, tiny little invaders that prefer human hosts above anything else out there, and they are damn difficult to get rid of if you catch one. But did you know there are at least 6 strains? Everyone is familiar with HHV 1 and 2 — when stressed, they show up as cold sores on the mouth or lesions around the genital/anal area, respectively.

Yes, they are horrid. The stigma around them is even more horrid, as a high percentage of the population actually carries them and has absolutely no idea, because they are symptom free.

But I’m not talking those guys. I’m talking about HHV-6, an almost unknown guy, yet he’s a guy who infects nearly all infants, that’s right, the vast majority of us, and nearly 100% of children in developed countries such as Japan. He infects through the nose, and from there he takes the express lane to your olfactory system. There, he can make a decision: activate, or hang out indefinitely as a latent pathogen. If and when conditions are right for activity, he sets up base camp, multiplies, and travels throughout your central nervous system. From there, he can infect organs at will. Yes, he can infect the brain, causing all sorts of problems. Yes, he can infect the bone marrow, causing bone marrow failure. Yes, he can infect kidneys, causing kidney failure. He’s also been indicted in several autoimmune diseases… MS, Hashimoto’s thyroiditis, and many others.

Are you thinking: Holy shit, holy shit, holy shit, yet?

As I read the symptoms of active infection, I realized they fit us perfectly: the stuffy nose I’ve not been able to shake since pregnancy, that Adahlia shares. The frontal and cerebral headaches I get when on my chinese herbs and it’s supposed to be clearing it out. My autoimmune-like symptoms and signs: The mysterious slow degeneration of my spine that a number of practitioners (massage therapists, acupuncturists, and even an extraordinary tai-ji instructor) has noticed and I’ve been watching since 2008. The heat, throbbing, and pain that flares up in it also most notably since taking the herbs, to such a degree that there have been nights I can’t sleep. The feeling like my kidneys have sandpaper in them (inflammation) and progressive loss of function, which shouldn’t have happened to my left kidney at all, and not even to my right, if it was simply swollen from occlusion to the ureter. The drop in 2 of 4 complement proteins that are the markers of many autoimmune diseases. The other infections in my body that have cropped up recently or in the last several years, because, well, my poor body is overwhelmed. And the list goes on.

It can cause bone marrow failure.

It gets better.

Or maybe worse, but better if its true, because then everything is explained.

HHV-6 can integrate into chromosomes.

That’s right. The little devil can work himself into your chromosomes and be passed from generation to generation, along with all the other genes.

Holy shit, holy shit, holy shit!

Yes, it explains that angle too.

Wanna know the kicker?

It’s treatable.

Yes. Antiviral therapy can knock it out.

(Keep breathing.)

Oh wait, there’s more.

More???

Yes.

You don’t need a bone marrow biopsy to discover if you have an active infection, or in my case, a kidney biopsy.

It’s diagnosed thru a blood test.

A complex blood test, but a blood test nevertheless. Just a little needle stick.

Digest THAT, my friends. For it could not get any better than that!

At this point, I could get upset at how many times I’ve insisted to our doctors that there is a connection between Adahlia and I’s conditions. That I know she’s fine, that I feel in my bones she’s under attack, that she has an infection (including the first time we rushed her to the hospital near-death.) That a surgery won’t fix my left kidney and other strange symptoms. That the Chinese herbs aren’t hurting me, that they aren’t a threat, that they are doing something helpful to a latent infection… stirring it up, trying to change the terrain so it’s not happy in my body anymore, and kick it out.

I could get upset at myself for not investing this virus family more thoroughly earlier, because it was they I originally first suspected, and they I have kept coming back to. For needing the nudge from another DBA mom, who said to the DBA group in reply to a completely unrelated post (and I’m paraphrasing), “There’s this virus called HHV-6 that I’m investigating on behalf of my son.”

But oh, when I read that, did my heart skip a beat! And how my heart leapt when I began to read about the virus online.

I’m so grateful that I read that post… That for whatever reason, I chose to skim all of the many comments posted to that particular thread, which is something I almost never do.

Yes, I could get upset. And maybe a teensy part of me is upset at myself for not trying harder, not researching more. For how much we’ve endured, how much we’ve lost.

But you know what?

I think it had to be this way.

And for all my spiritually and mystically inclined friends, and all the countless more people out there who want to believe in something, but just can’t seem to find anything, let me relate a quick story to illustrate.

Last year, about this time, I did something I have only done on one other occasion: I conducted a First degree Usui Shiki Ryoho Reiki Attunement for just one person. She was a friend of a dear friend, and for some reason, I felt I should do it. I told her nothing of my daughter and I’s conditions until after its completion. As we sat at the dining table, her mouth fell open and she asked if she could consult her sprit guides.

Now, everyone has gifts. Some start amazing businesses, some lead armies, some are mathematical geniuses, some are virtuoso artists, some are incredible parents.

In the past couple years, I have realized I have some rather extraordinary gifts myself.

Talking to spirits, however, is not one of them.

But, who am I to say that someone can’t be gifted in it?

So of course, I said yes. She closed her eyes, looked off to the side, and said that Adahlia could make her own blood.

Yes, I know that, I said. And she has, just not enough of them.

She will be cured this time next year, she said.

And she said other things, the majority of which either rang true, or I didn’t want to believe, or I already knew, either on a conscious or soul level.

It was nice to hear confirmation that Adahlia could heal from this, but a year was so far away. My heart sank. Surely, I could cure her before then?

My friends, I’m not surprised that I’ve been pointed to this virus at this particular time. We think we control all sorts of things… even the whim of what posts and threads we read. But we don’t. This is when she would be cured. Things had to happen between then and now. There are bigger things at stake than our own desires.

There are no accidents.
E
Friends, this is it. This has to be it. This is the final hill. We can do it. The 3-year marathon is coming to an end.

And I can’t be upset because I’m giddy, I’m laughing, I’m hugging Joe and patting his face, who keeps himself contained because his poor heart just can’t stand more roller-coaster hope that ends in more bad news. He won’t celebrate til we are tested, treated, cured.

I admit, I’m not looking forward to fighting the battles that will be necessary to convince someone to test her, and myself, for this damn virus.

But this is it. This is the battle to end all battles. This is when we paint our faces and make an extraordinary speech and charge.

This isn’t just VD-day.

This is V-day.

Good people,

I want to take a moment to say that I am SO sick of fighting. I just want things to be easier. Easy-peasy.

But they are simply not. Not at any step of the way. Gosh-darn frustrating, it is.

Well, that’s not entirely true. Sometimes, we get a really great needle-stick and no IV complications, and that’s awesome. So I’m not ungrateful for that. I’m just saying that by-and-large, all it seems that I ever do is fight. And Id so gladly go along with the “flow” but it seems that would drastically impact or shorten Adahlia’s and my life, and so I can’t.

Let’s talk about something else before we talk such business tho. In some circles, pleasant small talk is a necessity. So much nicer than fighting. So let’s be nice for a moment.

Adahlia is, all things considered, doing great. She’s started to be able to explain her nightmares. They are always adorably tragic — various favorite characters (some of them are even “villains”… like me, she likes things with sharp teeth) from her kid movies are in peril. I hold her as she cries, and explain that they aren’t dead, they are ok, that they live forever, and that we actually all live forever, but that forms change.

Adahlia tells me these days about everything she loves. Sometimes, she gets overwhelmed and just says: “adadha loves!” In some ways, she is the sweetest thing. When the old turtle in Kung Fu Panda dies by dissolving into cherry blossoms and floating up to the stars, she welled up with tears and howled. I had to turn it off and explain things before we could watch more. It was the first time she cried at a movie… And I didn’t even realize she would understand he was dying. She really loves that old, wise turtle.

She can also be incredibly violent and cruel. It’s fantastic, this whole process of parenthood and watching someone step forward. There are moments when I feel the pull of parental pride. But there are more moments when I witness her and am struck by how much she is her own being, how I was simply her transport ship, and now I’m her guide and guardian through a place rife with paradox and contradiction, at a very pivotal time in her life, her childhood, and I’m awed and humbled at the power of that.

Adahlia used her first metaphor the other day, describing one of her stuffed animal’s eyes as apples. And they are– they sit on his head like two big, juicy Fuji apples. I was thrilled! Her first metaphor.

Amongst Adahlia’s loves is our juicer. She pets it, kisses it, builds it a tower of Legos and presents it to it, presses her cheek to it and talks to it, points to various parts of it and and tells me that it has feet, and a nose.

She still loves swinging – we have 3 variations on underdogs. There’s the normal underdog. There’s the spinning underdog. And there’s the flying underdog, which is basically a normal underdog but she holds her arms out like she’s flying. Yesterday evening, as she swung with arms outstretched and I shouted “flying underdog!” she said she was an airplane. When I asked what color, she said she was purple, with a pink nose, and yellow mouth.

Adahlia loves to hide and have me find her. She is more of a climber than ever, proving what I said about her as a tiny infant correct. She has accomplished and is working at mastering several different climbing apparatuses at the playgrounds, and sometimes she asks for a hand or help, and I try to spot her as unobtrusively as possible. But, once she gets it down, she makes me stand far away, so she can do it on her own. It’s a bit nerve-wracking when she’s low in blood and suspended 5 feet off the ground, balancing over metal bars.

Adahlia also loves to pretend to be a cat. Recently she was a blue cat with purple spots and pink eyes. Every day, she strikes me with the keenness of her imagination, creativity, and intelligence.

She is both a very gentle and very violent soul. She is extremely sensitive to any discussion or critique of her, any supposed failing. I was the same way as a child, and so I’m trying to be very mindful with her. There is no mocking in our house. And if anything crosses a line, we apologize for hurting, rather than ridicule, a person’s sensitivity.

Sadly, this is a more novel way to live and treat others than some might realize.

I suppose now is as good of a time as ever to say that soon I will probably discontinue the more personal antidotes on this website. They are my favorite, and I love sharing them. But the truth is that I never intended to have this website, or any web information or pictures posted of her, because I understand how isolating and disempowering sharing of a child’s private experiences can feel, even when it’s “just shared between mommy’s friends,” let alone the world. But I have done it because of her disorder, and I’ve therefore shared (and thus potentially isolated, disrespected, and disempowered her) on a larger scale than anyone’s ever shared information about me. Truthfully, I never imagined I’d still be fighting for her at this point– I figured we could cure her by now — and so I figured it would be over by the time she would be able to be wounded, and then I could explain myself, delete everything, and apologize. But, that clearly is not how it’s going to be.

So, as helpful as this website may be to furthering awareness and supporting families, it may have to transform soon.

Now, let’s get to the point.

Yes, I’m still fighting for her. I expect Adahlia needs a transfusion rather soon, and she’s scheduled for next week. She’s exhibiting all her classic signs of not feeling well and needing blood. At her transfusion, I will get the opportunity to discuss her nutrient deficiencies with her hematologist. I wish I could just go and state my case and be heard, but I’m sure I will need all my wits for a strange dance of medical knowledge showmanship. It almost never goes as easily as Id like. And it continues to blow my mind that I have to fight so hard for her.

And I’m still fighting for myself. As if to prove that the VA healthcare system is the worst in the nation, I am forced to return tomorrow. I called them last week with symptoms of a UTI. The actual interaction was much more astounding than what I have the energy to relate, but suffice to say that after congenially telling them my symptoms and insisting that after 5 stent surgeries I know stents, and this is not normal discomfort, that something is perhaps wrong, the receptionist finally agrees that that something indeed might be wrong with the stent that is draining my kidney, and calls me back to say the doctors want me to go to the ER, so I went in, peed in a cup, and…

…heard nothing.

The kind receptionist calls me today to say they still can’t give me a surgery date yet to fix the problem that has required the aforementioned 5 stents, even though it’s supposed to be within the month. I say that that’s pretty inconvenient for me, because I have a lot of planning to do and people to arrange to help me with the surgery and recovery, but okay. I then mention my urine culture, that surely it’s negative since no one called, but could she just check? After a moment, I am informed that there are actually over 100,000 strep b bacteria in it. The receptionist notes that my specimen was flagged but that they flagged a doctor who no longer works at the hospital, so effectively, no one was notified. She informs me that she’ll send a note to a urologist currently on staff, and he’ll get back to me if they think I need antibiotics.

I have heard… nothing.

People, friends: I have 19% function remaining in my right kidney. I have 80% remaining in my left kidney. I am 35 years old. I have a high pain threshold, and at least a little medical education. I have a stent in my kidney, which could allow infected urine to backflow into a barely-hanging-in-there kidney. I cannot afford any more loss of function. I am the sort of patient group that you worry about getting a UTI, not let go untreated for a week.

I am not the boy who cries wolf. I am the boy who battles the wolf by himself for days on end using everything he’s got, until, bruised, bleeding, battered, and nearly beaten, he finally calls for reinforcement.

Only for the reinforcements to take their own sweet time arriving.

Good news, good news, where’s the silver lining?

Well, I have been on a very rare chinese herbal antimicrobial since late January, and my symptoms started shortly afterward. An herb so rare that my world-renown expert herbalist testing me for herbs, looked at me sideways and said: “You need a very rare infection-fighting herb. You and your daughter both. Where did you get such an infection?”

So maybe, and it’s possibly a long shot, this herb has made my body a less-than-desirable host, and kicked up some latent strep b infection and is flushing it out of my kidneys. Maybe that’s what’s behind the glomeronephritis and autoimmune-like symptoms and loss of kidney function. Maybe it was activated when I became 7 months pregnant and my big belly occluded my right ureter. After all, I did have several cases of strep as a child. In fact, I even developed scarlet fever. (And yes, I’ve told all this to all the specialists.)

Maybe, and perhaps it’s an even longer shot, it was transferred to Adahlia while she was in my womb, or it was just the stress of what I was going through while she was in there, but it triggered something in her genetics, deep in the machinery of Adahlias bone marrow, and has caused a cascade effect that has resulted in her anemia.

Or maybe not. Who knows? If I’ve learned anything in the past 3 years of this ridiculous ordeal, it’s that we don’t know a lot more in medicine than we know.

It’s a high-stakes guessing game. Everyone is operating off theories and probabilities.

I’m just so darn sick of all this fighting. It’s just that there’s no alternative… Or rather, the alternative is handing over my fate to people that don’t actually have answers and seem a little inept at times, the acceptance of my potential demise at their hands. And medicine administered to my daughter that I don’t believe is right for her, yet. I’m just not ready to do all that, yet.

Not that I’m judging them for ineptness. Not really. At times, I’m more than a little inept too. I’m just aggravated that they pretend like they’re not. It’s typical authority-figure power-blindness.

And it’s a paradox: I practice surrender to a higher power. Yet I won’t surrender myself or my daughter to man.

So I have to keep fighting. I suppose I will have to drive down to the VA tomorrow and spend some time with Adahlia in the ER, exposing my immune-compromised daughter to hospital pathogens, insisting I get antibiotics, and I will have to be ready with the appropriate dose, type, and duration, or who knows if what I will receive will even be effective. Then I will return with her the very next day to meet with the surgeon and hopefully obtain a surgery date to repair the ureter before I need the next stent replacement. And no, I can’t leave her with a sitter because she is low in blood and cries unconsolably and unendingly for me if I leave her for more than 30 minutes with her father, let alone 3-5 hours with a sitter.

I could just wait it out, tough it out one more day, and do it all on Thursday at my appointment with my surgeon, but now that I know I have an infection, do I really want to risk exposing my kidneys to another day of potential loss of function?

Did I mention I was sick of this yet?

But the alternative is worse.

So, here I go.

I just hope I can get some sleep, first.

But I started writing this at 2:15 am and now it’s 5:15…

Time to go.

I’m lying next to Adahlia tonight as she’s already fallen asleep and I can’t. I’m too ramped up. I’ve been exchanging emails with her latest hematologist and as I’m lying next to her, in the dark, I hear myself vowing aloud to the room:

“I am determined to help you. I will find a way to help you.”

Signs. You see, one of the first things you learn in medical school – of any medical tradition – is the difference between signs and symptoms. A sign is something observable, that the doctor detects, like a fever, and it’s typically considered objective. A symptom is something the patient reports, like “I feel hot and cold and loopy all at the same time” and it is typically considered subjective.

There have been a slew of recent signs regarding Adahlia. First, at the last transfusion, in January, her Ferretin was back up from 750 to 900. Ferretin is used as an indicator of iron overload, but it also rises in cases of inflammation. There are no conclusions to be drawn yet – it could be that the Exjade medication isn’t working, or it could be that the fresh juicing we are doing with our brand new Champion 2000 juicer (Merry Christmas from Mom and Dad) is temporarily raising inflammatory markers as it clears out her system. (The juicer matters, apparently, when it comes to juicing. It makes sense now, but a year ago, I thought juicing benefits were juicing benefits. Nope! Big difference. The juicer matters.)

Second, we did another nutritional analysis on Adahlia. Some good news: some nutritional deficiencies were corrected. Others seemed not to change. Others worsened. And: new deficiencies appeared.

It’s most frustrating.

I’m still trying to discern a pattern. One interesting thing to note is that most of her vitamin and mineral deficiencies can be sourced in her current favorite foods.

??? I know. It means that she’s either not absorbing her food properly, or that she is drawn towards the food her body needs most, in an unconscious attempt to correct her problem, or both. Either way, she’s eating mostly what’s she’s deficient in, and yet, she’s deficient.

The most intriguing sign, however, right now, is the one that says that she is still deficient in vitamin B12. Her nutritional analysis last year said the same thing, and so for the past year, we have been supplementing her heavily with B12. For a year. I’m talking heavy. And she’s still deficient!

This is bad. B12 is necessary for building blood. A chronic lack of B12 can lead to permanent nerve damage. It’s an absolutely vital nutrient on a systemic level.

What’s interesting is that Adahlia’s red blood cells, the few she does make, are macrocytic, meaning they are extra big. Macrocytic red cells are caused by B12 deficiency. So is her anemia partly due to a lack of B12?

What’s confounding is that macrocytic red cells can also be a trait of DBA. And the difference between the anemias is supposedly pretty clear when looking at a sample on a smear.

What’s also interesting is that I was B12 deficient after several years of being vegetarian, and required monthly B12 injections for awhile in order to get my body back into balance. I suppose I would again become anemic if I don’t eat properly — ie, foods rich in iron and B12. And Adahlia is a self-imposed vegetarian. She simply doesn’t like red meat, and barely touches poultry, though she will occasionally eat fish.

So we have a bunch of signs, a lot of them flashing “doom” and “look at me!” and “get worried!” But I’m not. Yet.

I’ve asked her hematologist to consider IV B12 administered before or after transfusion, since she might have an absorption issue, and it’s such a vital nutrient. He’s baulking a little, and has agreed to retest her systemic B12 and go from there. I think he’s just a little intimidated. That’s ok.

The bottom line is that her cells don’t care what we call it. Macrocytic anemia, Diamond-Blackfan Anemia… The bottom line is that she appears to be chronically deficient in a vital nutrient, a nutrient necessary for building heathy blood cells, among other things.

Would adequate B12 help her produce her own blood? Would it normalize her cells? Maybe. But the DBA issue isn’t actually my focal point. I want her nutrition analysis to come back normal. I want her to show adequate amounts of everything vital in her system and then, if she still has DBA, if she still needs transfusions, okay. Then we can look at fixing that. But there is no way you can expect anyone to produce their own blood and be healthy if they are chronically deficient in vital nutrients like vitamin B12, calcium, selenium, and serine. Without such things, you simply won’t be your optimal you. You have to have the nutrients you need in order to well… umm… live.

And so that’s my goal. I want her to be nutritionally healthy, to have everything she needs to build what she needs. So that even if she has anemia the rest of her life, and needs blood transfusions, she will still be able to be her optimal, healthiest, happiest self, because she has the necessary nutritional building blocks.

Two nights before my birthday, I had a sign of a different sort, the sort of sign my very spiritual, and mystically inclined friends, would appreciate. And so to balance all the scientific mumbo-jumbo, I’d like to share it with you now:

I dreamed I was at West Point, the me I am now, but I was in my Firstie uniform (Senior Cadet, high ranking), so no one bothered me. I was looking for two of my friends, and of course, everyone there were the cadets of today. Companies were in various formations throughout the Cadet Areas. The companies in Central Area were in Battle Dress Uniform (fatigues), and so was I. They were loading trucks, wearing kevlars, wearing LBEs, apparently getting ready for the field. Bamboozled plebes were standing in formation as upperclassmen shouted orders at them. Walking briskly past the groups, I passed a solitary Army Major walking the opposite way – I almost didn’t see the little gold leaf insignia on the Kevlar that identified the active duty officer from cadets. I had already taken a couple steps past the officer and cringed inwardly, then executed a quick, if sloppy, about-face before the Major could decide that he was annoyed and should correct me on my lack of observation. I saluted. “Good afternoon, sir!” I said automatically. “I apologize for not seeing you!”

The stout major had a pretty face.

“And I apologize, again, ma’am.”

She looked like someone from my more recent years, a mentor from a different school.

“Do I look like a man to you?” she said.

“I’m so sorry, ma’am.” I grimaced. “It happens to me, too,” I added.

She grinned in camaraderie and waved me on. I entered the nearest grey granite entryway, which should have opened into Washington Hall, the Cadet Mess Hall, but instead opened into a barracks, the interior walls painted the familiar, oddly-chosen bright, blue-green of Pershing Barracks.

The stairwells were full of cadets, and these ones were in Full Dress, as if about to go on parade. Strangely, they stood in formation on the stairs, row after row, locked at attention while the senior cadet training officers combed the rows, looking for anyone even slightly out of place. I was in my Full Dress too, complete with my Training Officer stripes. I passed by without anyone noticing, naturally. A glance told them my rank and status. They had jobs to do and more important matters on their minds, like the respectability of their companies. They assumed I was on some errand.

And I was. I sought my friends. One of these friends was Joe, and one was his friend (actually, a mutual friend) from our WP days. I had just left them, or rather, they had left me, after I told them I’d catch up.

I was sweating in my Full Dress – I had forgotten how hot the wool gets, how the stiff, starched false collar cuts into my neck, how heady and muggy the non-air conditioned hallways get, especially when the plebes are stressed and the upperclass are hazing. I wiggled my arms inside their wool sleeves to encourage airflow.

I took the stairwell up to the roof, and was astonished to find myself outside in another North Area. The sky was pink and orange like sunset.

“How did they put another North Area on top of North Area?” I wondered.

But this North Area was different than the other one below. Instead of a sea of asphalt, the large area surrounded by granite barracks was a field of grass encircled by a sidewalk. The grass was fenced off by a single rope, more of a suggestion than a barrier. Inside this barrier, there were goats and llamas and strange similar beasts, grazing on the grass. An older woman tended them. She wore simple, heavy, clothes, a native or indigenous woman from a time long ago, or a place far away.

As I gazed upon the animals, she spoke to me.

“Ahh, but he’s the pretty one,” she said, gesturing to one of them.

A strange llama-like goat-like animal tossed his head and stepped towards me. He was no bigger than a large dog, with very large eyes, and a large alien-like head, and his fur was brown except on his head and neck, and there it was green. He was odd. But pretty, yes, in a strange way, with a strong spirit.

I suddenly realized I could ask this woman for help. I turned to her.

“How will I find my friends? Which way is my quest? Which way is my path?”

I knew I would ask the first question, but the second and third spilled out of my mouth, surprising me.

She smiled and began to move, but I could not hear or see her. Everything was turning white.

I became aware that I was lying on my back in the dark, a point of pressure on the tip of my nose. Eyes still closed, I came fully awake as I realized that Adahlia was touching my nose with just the tip of her finger. Her even breathing told me she was still asleep. After a while, she dropped her hand to my chest, just under my neck, her fingers and thumb making a natural “v” at the base, on my sternum. As I lay there amazed, barely able to believe what was happening, and not wanting to break the spell, she somehow slid her other arm effortlessly underneath my back, palm directly opposite her other palm. Energy flowed between her two hands. She had answered my questions. She was strengthening my heart. This tiny little being, in so much need herself, was helping me.

Now, I don’t know a lot.

But there are signs everywhere.

We just have to notice them.

If it sounds familiar, its because it’s a line from the holiday classic, Rudolph the Red-nosed Reindeer.  A week or two before Christmas, while I was making dinner, Adahlia walked into the kitchen and much to my amazement, said:  “hee-hee, ho-ho.”  I giggled.

Our Christmas was amazing, and we discovered that Adahlia absolutely LOVES Christmas.  She loved the fact that everyone was celebrating a baby, and she loved all the lights, and reindeer (which she already loved because of the movie Frozen).  She loved that the reindeer could fly and that Rudolph had a shiny nose.  (She still loves to put on her fairy wings and fly.)  She loved making ornaments to put on the tree (reindeer ornaments, naturally, amongst others).  She loved baking Christmas cookies on Christmas Day and listening to people sing in the church and eating the snow that miraculously started to fall on Christmas afternoon.  (She pronounces it as “schno.”)

Eating Christmas Snow

Every day for the last month, Adahlia’s asked to watch “Rudoff – schiny- nohse” and “Frahtee schnoman”.   She is starting to talk more, and everything she says is just about adorable.  A couple weeks before Christmas, we went on a walk of the lights strung through the large park near our house.  There was a tent with Santa inside and I lifted her up to show him to her through the plastic window.  To my surprise, she immediately tried to squiggle out of my arms and began pointing to her chest, saying “Adah-da”, meaning that she wanted to meet him.  We stood in line in the cold for over an hour.  It was the first she has met Santa, and Joe was surprised she even knew who he was.  But she definitely did.  She was so excited!  She walked right up to him and let him lift her onto his lap. “What a pretty coat you have!”  Santa exclaimed.  He asked her if she wanted a doll for Christmas, and she said yes.

Talking with Santa

I was not expecting him to ask such a thing, and I was thrilled.  You see, six months ago, I had ordered a hand-made doll from a lady in England that makes waldorf style dolls.  On Christmas morning, Adahlia found her new baby sitting up on a chair next to the Christmas Tree, and she immediately hugged her to her chest.  She spent the next few days telling me how she now has two babies, and holding up two fingers.  Unlike her other baby, which looks like a swaddled infant and is called a “heavy baby” because she is weighted, this baby’s eyes are open, and she has little fingers and toes, a diaper that can be changed, a little yarn bow in her hair, and an outfit that includes booties and a hat.  Adahlia loves hats, socks, counting and doing diaper changes on her other baby and stuffed animals, so I knew she would love her new doll.  But it won’t be until tomorrow that she learns what makes this doll extra special — she has a little felt blood bag, with tubing and a velcro armband attachment, so that her baby can get a transfusion too.  When I told the lady in England about Adahlia’s condition, she offered to make it in addition to the doll.  I hesitated — I didn’t want to Adahlia to be the girl who has a doll with a blood transfusion bag now, much less in six months or a year.  I was — and still am — struggling a bit with accepting her condition as permanent, as incurable.  But I knew that to refuse the offer because I didn’t want my daughter to be transfusion dependent was not only being willfully blind, but unkind.  I didn’t want my daughter to be transfusion dependent, but she was.  A baby to receive transfusions alongside her would allow her to have a friend also going through it, and would help normalize her situation for her.

The doll certainly did not come cheap.  But she is soft, and made of natural material.  Like with all waldorf dolls, her face is sweet but intentionally minimal, so that the child’s imagination can supply the details.  Of course, there are moments when I wonder if Adahlia would prefer a gorgeously detailed doll, or even just a cheap, plastic, realistic one.  But then a father on the playground tells me that his daughter’s doll “poops” jewels… and a six-year-old girl with multiple plastic dolls asks me:  “where do you get a baby like that?” (she was referring to Adahlia’s infant baby), and I feel fortunate that we were able to choose to limit plastics, and go the natural, handmade with love, route. Besides, the following photos say it all:

“Hee hee, ho ho, and important things like that.”

If you recall, the elf in question (Hermie) wants to become a dentist, and the elf-in-charge is telling him that he’d better learn to do the important things in life, because the desire to be a dentist is ridiculous.

It’s very funny.  And it’s meant to call attention to the fact that so many in the mainstream aren’t thinking about why they are so darn sure they are right about what’s important.  In our culture, many parents would applaud a desire to be a dentist, while they would mock (gently or otherwise) a desire to make toys.  In the elf culture, its the opposite.  The line is meant to show us that we believe what we believe because we are told its what to believe.  Because its the accepted path.  Its not necessarily right.  It might not even make sense.  And it certainly doesn’t make everyone happy.

It is SO important to break through that in oneself.  To learn to become one’s own master when it comes to one’s own beliefs and thoughts.  There are a lot of movements within our society that I feel are positive, that advance our humanity and push it towards it’s highest expression.

There are also an awful lot of movements in society that are just plain awful: ignorant, foolish, wasteful, and sad.

Why are we so afraid of the different?  Rudolph and Hermie are lovable characters because they so clearly represent something that nearly all of us can all identify with, at least to some degree.  You can switch out the characters and location, but the story remains the same across cultures.  The question remains:  Why is Rudolph’s shiny nose always rejected?

Why is it that so very few people in positions of power have the ability to say, “oh, okay.  hmmm.  interesting.  run that by me again?  ok, well, that’s weird, you know.  but, let me see how i can help you.  let’s see how we might integrate you.”

Perhaps it’s like Christmas.  If everyday was Christmas, it might cease to be appreciated.  If everyone was enlightened, it wouldn’t feel so fabulous to have someone believe in you, to back you in your endeavors.

Or perhaps, the truth is, that we are all growing here.  We are all learning here.  Some people play the role of bullies, and some people are in the role of the bullied.

I believe in the importance of integrating differences together, in finding how we all fit together, to coexist together.  In the same way, I believe in integrative medicine.  It only makes sense, because we are integrated people.  We are people with bodies, minds, emotions, and spirits.  There are multiple dimensions to who we are, and when one part of us falls to the wayside, the rest of us eventually suffers, too.  We cannot ignore any aspect of who we are.  Why would we think that we could ignore aspects of our health or treat only one part of us with one type of medicine?  Think about our homes.  We cannot stop doing the dishes.  To run a healthy home, you’ve got to attend to all parts of the house, not just the roof, no matter how important the roof is to the structure of the house.  You’ve simply got to sweep, eventually.  It’s the same with medicine, society, and the globe.  You cannot hold onto one thing and say: “This.  This is it.  This is the key.  This is what’s important.”

It’s all important.  And quite possibly, we oversimplify because we can’t quite wrap our heads around the complexity of the ways in which everything interrelates.   So we come up with a few axioms and we decide that this is right, this is wrong, this is love, this is not love, this person is good, this person is bad, this time was happy, and this time was sad.  And we hang up our hats on phrases that couldn’t possibly encapsulate anything real.

Before Christmas, Adahlia could count to five.  Now, she can count to ten, and she can apply the numbers, too.  For example, she can get me two apples from the refrigerator, or four celery, or five carrots.  She will ask for three more treats for the cat if I’ve only given her two, so that the cat can have a total of five.  She knows all her letters and can find them.  Today, for the first time ever, she drew a “0” and told me it was an “o”.  It was the first letter she’s ever written.  She then drew a backwards “c” and told me it was a “c.”  She “reads” books to herself out loud, although I suspect she’s actually memorized them and isn’t actually reading.  She says small, full sentences.   Up until this week, she had difficulty with her pronouns — she referred to herself as “you” and would say things like “hat, you,” meaning it was her hat.  She still does that sometimes, although she’s recently started using the word “me” to refer to herself.  She loves to draw and color.  She has two “imaginary friends,” and she invites them into the bathtub with her and helps them step over the edge of the tub.  She breaks off bits of her food and gives it to them before she eats it.  She will put her boots on and pick up a purse or bag and tell me that she is going to their house, and leave the room.  She then comes back and tells me that she couldn’t visit them because there was too much snow at their house.  She loves Toothless from How to Train your dragon and calls him “Hamiya Da-dawin”, because he looks like Hamiya, our black kitten, who we adopted mid-October and she named.  She carries Hamiya and dances with him, and tries to share with him everything that she loves to do, like putting him under a blanket so he can “hide” and then lifting it up to “find” him.  She loves to play hiding games, and will “hide” in plain sight, inside the bathroom, curled up on the floor, or in the pantry with her back to the doors, covering her eyes.  Its been a whirlwind of winter firsts:  first time on ice skates, on skis, and sledding.

And tomorrow she will have her up-teenth transfusion, and her new baby from Santa will have her very first.

And its all important.  Its all beautiful, crazy, sad, wonderful.

And very temporary – our opportunity to experience and impact it.

Love, love, love, love.

It’s the hee-hee, ho-ho, and important things like that.