The night before Memorial Day, I ambush Joe as he comes up the stairs.

“I just found something out,” I say, “about that Ayurvedic herb I wanted to try for Adahlia.”

“Oh,” he says.  He can tell this isn’t going to be a light-hearted conversation. “What?”

“Well, as I told you, I was hopeful about it because it has steroidal components similar to hydrocortisone, which is one of two steroids used to treat DBA, and this herb has helped to raise testosterone levels — you know how boys with DBA sometimes go into spontaneous remission during puberty — this herb can raise or lower cortisol. It’s an adaptogen; it balances the body’s hormones by raising or lowering cortisol depending on the body’s needs, restoring strength and vitality.  It’s even raised hemaglobin in a number of clinical trials.”  I rattle off these promising facts while pacing the living room, gesturing at the walls as if they were an audience.

“Right.  So what’s wrong?”

I turn to face him, my voice as heavy with its news as a construction crane swinging its load.  “I was doing some more research on it, and I discovered that its also high in iron.”

He says nothing.  I whirl.

“I’m so frustrated!” I say, shattering his non-reaction like a plate on tile.  “Everywhere I turn, everything I try, it seems like it could potentially help cure her, but then I discover it might also kill her.  Her body tested positive for needing the algae and the specialized probiotics, both of which were high in iron — granted, miniscule amounts compared to a transfusion — but now we know she’s got dangerous levels of iron in her heart, and we’re going to the hospital tomorrow for transfusion, which will only dump a massive amount of more iron into her!  If I hadn’t tried the algae and the probiotics, would we be at this point now?  Would we be already faced with nightly needles and pumps?  I stopped doing the algae and probiotics as a precaution, given her iron situation.  How can I give this new herb to her when I find that its also high in iron?”

He cuts me off briskly.  “You can’t know if what you’ve done has made her worse.  Like you said [the herbalist] would probably say, her body tested positive for the algae and probiotics, so it shouldn’t harm her, and the natural medicine community isn’t unanimous on the subject of whether the body would even store plant algae in a pathological way, anyway… some think it helps the body to dump the animal-sourced iron.  Who’s to know?  No one’s said that she is more iron overloaded than any other kid with DBA. It could just be the transfusions.  No one knows.  You’re not going to try the steroid herb now?”

“Oh, no,” I reply, “I’m going to try the steroidal herb.  At least, if her body tests positive for it, or if it the testing shows that the sub-clinical infection is gone.  Or maybe, even if it doesn’t.  I don’t know….  I guess I have to try it.  I know what you’re saying and I’m not blaming myself.  I know why I did what I did, and I’d do it again.  I stand by my decisions; I had to try.  I’m not the sort of person who wouldn’t try… not when everything points to it being a functional problem… not when I know how the body works as a system, and I can see how it’s failing to work … I can’t just not do what might help her, not when there’s a possibility of it curing her, not when I know so much… when we know so little.”

Anger begins to surge through me.  “I’m just so sick of it!  Nothing is easy, nothing is clear.  Every single therapy has a hook.  Any choice I choose could cure her or end up killing her.  I just realized the iron content of this steroidal herb.  I haven’t been looking up the mineral composition of all of the herbs in her chinese formula.  What about them?  Do they all have a high amount of iron?  I suppose I could look them up, I have to, maybe…”  I drift off and then regain steam.  “Tomorrow, the doctors’ll probably say we need to do desferal — to try a more aggressive approach — to get the iron out of her heart, which means I’ll have to stick her with a needle every night, and — as if that’s not bad enough — she’ll have to sleep hooked up to a pump, and how are we going to do that?  You know how she is… moving around and crawling around the bed all night in circles… she’s going to lie still and be hooked up to a pump every night? For the next 5 years? For as long as she’s receiving transfusions?  The rest of her life?”

I sink onto the edge of the sofa but don’t collapse — I am too rigid with emotion.

As if “normal” life weren’t already filled with enough suffering! 

So much pain for a little person.  Pain pain pain.  Every day, I trick her into taking medicine that hurts her stomach… and even, like she told me the other day, hurts her gums.  She’s constantly subjected to some sort of finger-prick test or a blood transfusion or other test or medical intervention.  And she doesn’t realize it yet, but if my suspicions are correct, the doctors were indeed about to recommend desferal.  And I had wanted a life as natural as possible for her!  A gentle, natural, drug-free birth, and as few medical interventions and procedures and medicines as possible.

Her life has turned out to be full of everything I had not wanted for her.

Well, not exactly.  She has our love.  She is secure in our love.  That is something.

Joe crouches, balancing meditatively, at the top of the stairs.

“You’re right,” he says.   “She could end up dying a couple years early because you’re trying to cure her.  But, who’s to say she wouldn’t die five years later from a different complication, from something the doctors give her?  You can’t do this to yourself, Erika.  Do you think the doctors at the hospital do this to themselves?”

“No,” I scoff.  “They say:  ‘These are the risks.  This is what we think the best choice is.’  And if it goes south they just say, ‘Sorry.  It was a risk that we warned you about.'”

“Exactly.”  He pauses.  “Erika, you’re trying your best.  You’re doing everything possible.  Everything does have a double edge with her.  But, if she were cured right now, you’d be saying it was worth it, right?”

“Yeah.”

“You can’t beat yourself up over the outcome.  If you have to try, you have to try.  And it still might work out.  If you want to try the steroid herb, I’m behind you.  I support you.  It’s either this herb or the actual steroids, and we already know the risks that come with those.”

Or a bone marrow transplant, I add mentally, thinking of the two kids with DBA in the transplant ward, one of whom is now over 20-days in the ward, fighting through sickness and life-threatening complications, as her parents hope for engraftment of the donated marrow… and the other little kid, a boy, from whose parents we have heard nothing in over a week.  Not a good sign.

***

The next morning, today, I received a response from the DBA community.  I had posted a question: “I know that there is a correlation and higher risk of cancer for people with DBA.  Has anyone heard of a similar correlation between DBA and autoimmune disease?”

The replies blew me away.  Two responders were persons with DBA who said that their mothers did not have DBA, but were eventually diagnosed with Lupus later in life.  One responder was a mother who also did not have DBA, but she had a DBA child, and she was having auto-immune like symptoms, although, she had not yet had a full workup.  A fourth respondent said that her DBA child had started showing some of the signs of Lupus, and doctors had begun treatment intervention before it could turn into full-blown Lupus.

This is not only interesting, it is phenomenal, and I believe, it is important.  I had asked the question because I have been having autoimmune symptoms for the past few years, and my blood workup showed that I had two of four markers for Lupus.  The rheumatologist couldn’t make sense of it — since all four markers weren’t lowered, I didn’t have Lupus, but my immune system was clearly doing something odd.

Why is this important?

Because DBA is extremely rare.  EXTREMELY rare.  There are an estimated 400 persons in North America with DBA.  How odd was it that in this tiny community there were even three non-DBA mothers who were later diagnosed with Lupus with DBA children?  Perhaps, the diseases shared common pathology, and if so, then that means there is a similar physiology — a way to restore proper, physiological health.

It cannot be denied that there is a genetic component to DBA: the mutant gene, in my view, is like a chink in armor.  But I do not believe that any gene has the final say.  An arrow has to pierce that chink.  In this view, persons could be born with the gene (ie, carriers) and never know it.  But, if the right arrow struck, if enough stress were placed on the system, the gene could be activated and symptoms of DBA appear.

Just like cancer.  Just like auto-immune disease.

Of course, genes implicated in cancer and auto-immune disease might also potentially be activated for no reason whatsoever.  Yet, I had done enough work with persons with such diseases, and read enough studies, to know that it was possible to turn such diseases around with natural medicine and healthy lifestyle.

The autoimmune connection to DBA is also interesting to me because I now know of two persons with DBA who had their spleens removed (and, eventually, their gallbladders), and once their spleens were gone, their anemic symptoms resolved to the point where they no longer need transfusions.  (The spleen is highly involved in matters relating to the blood and to the immune system.)  Of course, the steroidal treatment of DBA is also a potential connection to autoimmune conditions, because the only real treatment for most autoimmune disease is steroids, though, like with DBA, steroids are not a cure for autoimmune disease, either.

I do not know, yet, the full implications of a connection between DBA and autoimmune disease.  But, it could be important to understanding the disorder, and, to finding a cure.

***

Adahlia has been amazing since my surgery, which happened just over a month ago.  Immediately post-surgery, she would help gently roll me onto my side, and then she’d climb down from the bed to help lift and swing my legs over the edge of the bed, and then climb back up into the bed to push me from behind, up into a sitting position.  Then she’d push me further until I was standing.  She would get my cane for me, and push me from behind as I walked.  She did this all on her own, with no prompting.  She would ask to see “mama’s cuts” and say affirmatively:  “mama’s cuts getting better.”  She ate (natural) jello and watermelon with me.  She slept by my side.

Tonight, we made chocolate chip cookies from scratch for the first time, ever.  She helped pour the ingredients into the bowl, and place the dough on the cookie sheet.

A few days ago, Adahlia did her first series of “why?”  Joe was driving the car as I answered five questions in a row about why it was important to eat a sandwich and not just chips.  It went something like this:

“When we get to the sandwich shop, you need to eat the sandwich and not just chips, ok?”

“Why?”

“Because the sandwich has turkey and cheese and veges to help you stay strong.”

“Why?”

“Because there are vitamins and minerals and things your body needs in the sandwich that chips don’t have.”

“Why?”

“Because chips are a snack food, and they are tasty, but to be healthy, you need to eat real foods.”

“Why?”

“Because we want you to be as healthy and strong as possible.”

“Why?”

“Because we love you, goober-snick.”

Joe was astonished.  “Isn’t it a little early for her to be doing this?”  he asked.  “I thought the ‘why’ thing started happening when they were, like, four?”

I laughed.  I didn’t know.

But I do know that Adahlia surprises me every day.  About a week ago, she surprised me again by starting to sing the “Part of your world” song from The Little Mermaid.  She sang one line, I sang the following line, and then she sang the following line, and I sang the line after that… and on, and on, and on.  When the bridge to the song came, I thought, Surely, she won’t know the next line, but she did.  I could not believe that she had memorized the entire song!  She doesn’t actually watch the movie that often.

For the two weeks post-surgery where I couldn’t really do anything because I was too weak, Adahlia and I spent a lot of time under the bed sheets, playing that we were under a tent.  “Purple dadu-in!” she’d shout, pointing at the closet or out the bedroom door.  “Oh no!  Quick, hide!” I’d say.  She’d dive under the covers and I’d pull them over us.  She’d put her finger over her lips.  “Shh… ” We’d lie together, acting scared, and giggling, for awhile.   “Do you think he’s gone?” I’d ask.  “You check.”  I’d lift the sheet the slightest bit, and she’d squeal, “There he is!”  or she’d say “All gone!” or she’d ask me to make him go away.  In the latter case, I’d lift up the cover the slightest bit, exposing only myself, and chide the invisible dragon while Adahlia watched with big, amused, eyes:  “Now, that’s enough Purple Dragon.  Adahlia doesn’t want to be scared anymore.  Go on, go play somewhere else!”  Then I’d lift the cover further so she could see out, and ask:  “Is he gone now?”  “Yes!”  she would announce, triumphantly throwing the covers off us both.

We still play under blankets and sheets often. She’ll say, “Mama, you come in, too!  Both hide!”  Its irresistible.

Sometimes, when the Purple Dragon comes into the kitchen, we feed him a snack, and when we do, he usually continues on his way, going out the back door of the house.  Sometimes, its not the Purple Dragon but Seagulls and Dolphins that plague her.  “Seagulls, leave me alone!” she says to the air, huffing and turning away.

Other times, the Dolphins and Seagulls are Adahlia’s friends.  Sometimes, she plays as if she is hurt on the ground, crying.  When I walk over to her, she says that the Dolphins come and lift her up when she’s sad.  I ask her if she wants me to lift her up. She usually says yes, so I do.

These days, Adahlia’s favorite quiet-time activity is snapping a crayon into two pieces, and then peeling the paper wrapping off the wax.  She’s currently working her way through a giant box of crayons.  She works very diligently, every day, at breaking and peeling crayons.  I can’t really blame her… there is something very alluring, very sensory-satisfying about the smooth waxiness of a cleanly peeled crayon.  Yup, the paper has got to go.

Adahlia loves to share things with me.  If she is eating something particularly good, she insists that I try a bite, too.  Or, if she is having a special treat, she’ll insist that I take one for myself, too.  Only then does she break into a big grin, satisfied we are both enjoying it.

It is my fault, entirely, but Adahlia has developed a love for tea.  It started with sips of my own tea, and now she wants her own cup.  We make it with honey and lots of milk.  Her preferred method of drinking tea is to drink it by the spoonful.  Its a meticulous process and takes 100 times longer than simply drinking the tea, but she loves to dip her spoon into the cup and draw it carefully to her lips.  One of her favorite ways to show her love is to bring myself, Joe, or the cat, a pretend cup of tea from her wooden tea set and a piece of wooden cake.  “You have some cake, Hamiya?” she asks the cat, though it is more of an order than a question.  He looks at me, bewildered, allowing her to press it to his nose.

Adahlia is very expressive of emotions.  When excited, she’ll laugh and stomp her feet and clap.  “I’m so happy!” she’ll exclaim.  When I tell her that she’ll have to have a blood transfusion in five days, and then, in the following days, I amend it to three days, and then two days, and then one day, (so as to prepare her for it), she replies, “It might hurt.”

“Yes, it will hurt.  We have to do it though.  You will feel better after it.”

She sighs.  “I might be sad.”

“That’s okay, its okay if you’re sad.”

“I might cry,” she says.

“That’s okay, too.  Crying is okay even if you’re very brave and strong.  And you are.”

She sighs again, spies a bug, and the conversation turns.

Speaking of bugs, as I believe I’ve mentioned, Adahlia loves bugs.  She loves Roly-Polys and earthworms and ladybugs.  She once brought me a earwig but I couldn’t help myself – I knocked it out of her hand and told her that we don’t pick up those kinds of bugs.  She thinks flies are bumblebees, and even though I’ve corrected her, she still calls them bees.  She picks dandelions indiscriminately.  By that, I mean that she doesn’t care if they are yellow flowers, or giant puffs of tiny, feathery seeds, or if they are closed.  She picks them and carries them and stacks them in large piles.  She keeps some, hands me one, and discards the others over her shoulder.  She pulls opens the closed ones, shows me the fluffy interior, and says, “This one is Dub-Mai!”  (Bob Marley).  It means good things.

Adahlia reads to herself and her stuffed animals.  Sometimes, she makes up things on the pages, and it usually goes something like this:  “This one has puppies and kittens.  This one also puppies and kittens.  This one Dub-Mai.”

Other times, Adahlia actually sounds out the words. She knows all the letters (and can count almost continually to 20).  She will say:  “Gooo-ooo-d Ni—hi-hi-hight Moohooo-ooon.”  Its very fun.

Adahlia will also “read” Hop on Pop  to herself.  She says almost all the correct words, such as “All Tall” or “Fall Off Wall”  or  “We Like to Talk”.   Its as if she’s truly reading and its pretty impressive… in reality, of course, I know she’s just memorized the book.  (Its been one of her favorites for years.) But, that’s pretty impressive too.

There are instances when we suspect that Adahlia may be a little dyslexic.  For example, she says “pazzi” instead of “pizza” — switching the “i” and “a.”  Its really cute, and I find myself having to resist the urge to start calling it pazzi, too.

Okay, last story.

I bought a dry erase calendar for myself.  I thought it might be nice to put the calendar behind the table that serves as my desk.  I thought it might be nice to plan things.  But, I made the mistake of showing the calendar to Adahlia.

“Look,” I said.  “See?  You write the numbers in these little blocks, and in the big blocks, you can write what you have to do on that day.”  I filled out the entire month of April.  Adahlia was impressed.  A few hours later, I saw that my chair had been pulled up to the wall so that she could reach the board, and the entire board had been erased, and it was now full of cryptic squiggles, small squiggles carefully placed in the tiny date boxes, and big squiggles filling the big boxes.  She had even drawn a wavy line where the month was supposed to be written, and a couple additional wavy lines in the “Notes” section.

And it was my turn to be impressed.

Currently, the board is half-filled with animals.  When I tried, failed, and realized I could not reclaim my board, it became hers.  When she isn’t filling the board with her own version of a calendar, she is asking me to draw animals, trees, flowers, people, and other things in the various little boxes.  If she asks someone else to draw something (such as her dad or a grandmother), and they do not draw it like I draw it, or the way she wants it drawn, she’ll scowl and erase it, and ask them to draw something else.  But if she likes their drawing a lot for some reason, and it has a lot of value (to her), she will be protective of that drawing and make sure it doesn’t accidentally get brushed or erased.  Such drawings needn’t even necessarily be ‘good’ – I find myself wondering exactly what she finds so appealing about a particular squiggle.  But its very charming, and very reaffirming of the truth of how everything anyone is fond of is nothing more than something that happens to please our fancy.  Not right, not wrong, not better, not worse.  Just, pleasing.

Well, its an early morning tomorrow.  I have to go to my hospital to get some post-surgery lab work done, and then we have an early-morning blood transfusion appointment.  I am actually very thankful that I’ve had to have such intense medical intervention since her birth.  In a way, I feel that my surgeries, hospitalization, various blood draws, and doctor consultations normalizes her experience.  She doesn’t realize that the majority of the population doesn’t frequent hospitals as often as we do.  And so I’m looking forward to my needle-stick tomorrow.  She’ll watch fearlessly, holding my hand.

And then, an hour later, I’ll hold her.

Last, but certainly not least, I want to say that I take this Memorial Day to remember the children, young adults, and adults who have died from DBA and its complications.  I mean no disrespect to veterans (I am a veteran myself) and those who have died in service.  I merely mean to say that the experience of the loss of someone brave, strong, and loved is universal.  There are many children who have died from this blood disorder.   They were very brave, very strong, and very loved.  There are many children and young adults fighting for their lives in intensive care, right now, due to this disorder.  Adahlia could be among them tomorrow, or next year, or in three years.

I have to try.  I will continue to try to cure her, working with her doctors and an integrated, holistic perspective, to free her from this disorder, and give her a healthy tomorrow.

But in every circumstance, and in every way, remember:

We have only today.

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.