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.

If you’ve ever climbed the steps to an ancient temple, you may have tried, at least for awhile, to count them.  If you’ve ever tried to climb a mountain, you may have looked up and thought with relief: perhaps only an hour more! and then, hours later, found yourself still climbing.  Supposedly, once you earn so many million or billion dollars a year, additional earnings stop having any meaning, because your quality of life can’t improve further.  And if you’re over the age of 25, it may start to strike you that the all-important-birthday just isn’t that important anymore.

Not that the numbers don’t have meaning.  They do.  Of course they do.

But at a certain point, numbers don’t really matter.

It becomes all about the experience.

I’ve lost track of Adahlia’s transfusions.  We might be around 28, or 33, but its somewhere close to 30.  It’s a hideous number, of course.  In fact, its a dangerous number, because it makes blood transfusions seem almost normal, and they are anything but normal.  A successful and safe blood transfusion is, in fact, one of the more recent and advanced procedures of our modern medical era.

But the numbers don’t really matter.  She’s had a lot of them.  That’s what matters.

She went 5 weeks between transfusions again, and that’s wonderful.  Her iron stores seem to be dropping again, which is wonderful.  She isn’t making baby red bloods cells anymore, which is not as wonderful. Her doctor told me that she didn’t want to continue measuring Adahlia’s reticulocytes anymore, because Adahlia wasn’t making them, and wouldn’t make them.  The doctor said, “It doesn’t tell me anything to continue to track them.”  When I countered that Adahlia made a normal amount of reticulocytes last month, the doctor dismissed my words and said Adahlia’s reticulocyte count wouldn’t go any higher than that, because “we aren’t doing anything to stimulate the bone marrow.”

What she meant was:  there’s no point in looking for improvement, because we aren’t doing steroids.

The look on my face must have communicated something, because she then said, “of course, if you want to continue doing the counts, then we can.”

Again, I said nothing, but when we arrive for our next transfusion next month, you can be sure I will make sure that the doctor has ordered a reticulocyte count.

Numbers matter when you’re trying to track improvement.

And while I’m not doing what the hematologists would do to increase her reticulocyte counts, it doesn’t mean I’m doing nothing.

It gets mildly aggravating, having various doctors continually push a medicine on me for my child that I don’t want to do because it has permanent, life-altering, side effects.  But, like in climbing a mountain, when the storm unexpectedly rolls in, I’ve learned to wait for it to pass.   I’ve learned that it doesn’t help to throw my walking stick at the thunder clouds.

It does help to be prepared to deal with the storm, though, and that means I have to pack the necessary mental equipment.   Just because its rainy and the wind is blowing, doesn’t mean I need to get wet and cold.  Over time, I’ve become very adapt at handling various doctor storms.  I have more than a few good storm stories.

Like perhaps any mountain climber, I’d prefer the day to be sunny and temperate.  I’d prefer there to be no storms.  Yet, storms are a part of life, especially near mountain tops.  Perhaps someday, I’ll learn to enjoy them.

Last night, before dinner, I gave thanks for the next 3-5 weeks of life that Adahlia’s transfusion purchased for us.  We live in 3-5 week increments.  Because while no child’s life is guaranteed, Adahlia’s life literally runs out when her transfused blood runs out.  Two nights before the transfusion, I cried next to her as she slept.  30 miles from the hospital, for the first time ever, Adahlia resisted where we were going.  In the rear-view mirror, she told me: “No doctor.  No hurt.  Home.  Home!”

Of course numbers are important.

Especially certain numbers.  Over so many thousand feet, you’d better pack gear for camping, because you can’t climb that mountain in a day.  If your creatinine rises past 1.1, why, my friend, you are in kidney failure.  Better do something about that.

In addition to her ferretin dropping and iron overload decreasing, the numbers say that Adahlia’s liver and kidney function is improving.  In fact, both her liver and kidney function are near normal!  In addition, she remains above the 50th percentile in both weight and length and weight-for-length.  This means that the nutritional and supplemental alternative medicine we are doing for her is probably helping.  It is, at the very least, not hurting.

Let’s talk more numbers.

In July of this year, I had a nuclear medicine kidney function test and it said that I only had 10% function remaining in my right kidney.  The doctor said it wasn’t worth saving, and that they should remove it.

Last week, about 5 months after that test, I had the test repeated.  The report came back that my right kidney was functioning at 19%, and the doctor called me to say that they would schedule the surgery to save it.

Folks, you may not know anything about kidney function.  But let me tell you what is medically accepted about it:  Once you lose it, you don’t regain it.  Certain supplements might keep it from getting worse.  But they won’t help you regain what you lost.

WRONG!

It IS possible to regain kidney function.  I just did it.

And, what’s more, is that I intend to keep doing it.  I must admit something here:  I am a rather terrible patient.  I find it incredibly boring to take vitamins, supplements, herbs, etc.  I truly dislike having to give myself acupuncture and other medical treatments — not because they are unpleasant, but because there are always 20 other things that I’d rather be doing.  It gets old being sick, being tired, being weak.  It gets annoying having to be super diligent about medical routines necessary to bring about health.  There’s no doubt about it:  Being chronically ill is a drag.

So, with all this moving to a new state and other demands, I must confess that I haven’t been as consistent as I could have been.  When it comes to electro-acupuncture, I could do more of it, on a more regular schedule.  I can increase my dosage of certain supplements to the maximum recommended dosage and never EVER miss a dose.

The bothersome thing about having to save oneself or a loved one from a chronic (or terminal) condition, is that one must be a perfectionist about it.

The numbers give me hope.  Yet, I must admit, I was hoping for better.  What these numbers tell me is that I must not only continue what I’m doing, but do MORE, and do it more CONSISTENTLY, in order to have the best outcome for myself and for Adahlia — a successful surgery to save my kidney, and a cure for Adahlia’s bone marrow failure.

I’ve had 4 surgical procedures to try to keep my right kidney draining properly since May of 2013.  The last one was on August 1, 2014.  Because of how the numbers play out, my doctor doesn’t feel comfortable letting me keep the current stent until they can schedule the surgery to fix my kidney in February.  It would be over 6 months — and its recommended only to keep a stent in place for 3-4 months.  So I will have to do another stent replacement surgery before February.  (This makes it my fifth.) The fact that I was able to resuscitate my kidney enough to get them to save it makes me happy, but the fact that I now must have two more procedures, not one, does not thrill me.  I know more than the lay person about all the harm that anesthesia, antibiotics, and foreign objects inserted into the body do to the body’s health and vital force.  Every procedure puts me back many paces.  I can now expect to be climbing this mountain to recovery for at least another year.

But, it must be done.  So, I am having a less-invasive surgery to switch out this stent with a new one on December 22, and then the “big” surgery to repair my kidney’s drainage issue a couple months later.   It is amazing to me that I am still dealing with something that first had me moaning back in April 2012, when I was 7 months pregnant with Adahlia.   There have been meadows and cliffs.  There have been storms and sunrises.   I can only describe it as “one hell of a mountain.”

And I did not know it when I first began to climb — I thought it was only a bump. Even so, I somehow, miraculously, had all the tools I needed to climb it, and whatever I didn’t have but needed, I am finding along the way.  It is nothing sort of amazing.

Old explorers coming upon — and then crossing — the Rockies must have felt the same.

Of course, on a larger scale, isn’t it true of life in general?  We are born with all we need for our lives, our personal mountain.  And everything we don’t have but need, we will find along the way.

As a fan of symbolism, I’d also like to say that I am excited by the fact that my next surgery will happen on the winter solstice, the return of the light. After all, the right kidney is considered Ming Men, Gate of Life, and it holds the Yang life force of the body.

I have every intention of building the light and power (function) of my right kidney between now and February, when the surgery will happen to fix whatever is occluding the kidney’s flow.  The stronger my right kidney is functioning, the better chance we have of the surgery being a success.

And there is also one other esoteric hope:  when I was pregnant with Adahlia and my right kidney failed, the chinese medicine pulse on my wrist that was connected to Adahlia dropped out and was barely palpable.  It was so strong up to that point.  My heart sank when it sank, but nothing my expert acupuncturist did (a specialist in pregnancy) or advised me to do (such as drinking herbal strengthening broths and soups) raised it.  In many spiritual and esoteric traditions, especially according to Rudolph Steiner, the child’s energy and health is closely tied to its mother’s energy and health during the first years of life.  Gradually, the child develops a more independent energy field.  There is a hope, though it may seem far-fetched, that if my right kidney function is restored, and the occlusion is cleared so that the energy and fluid can flow again from it, the Gate of Life in Chinese medicine, then Adahlia’s energy pattern will be healed too, and her own Gate of Life will flow, and she will recover on her own.

At any rate, my friends, those are the numbers.  Meaningful and meaningless, carriers of dismay and hope, at once both intimidating and motivating.

They are powerful because of their meaning.

They are meaningless because they hold no power.

We do.

In every.

Little.

Step.

Thanksgiving always generates a spirit of gratitude.  After all, that’s the point.  Gratitude for the shelter and food we have that will sustain us through winter.  Gratitude for the friends we love who may have (literally) saved our lives.  Gratitude for our own lives.  And, if we are spiritually inclined, gratitude for chance to take this journey, and for the entire complex web into which we are a tiny, yet important, woven thread.

I just laid Adahlia down for a nap.  She still naps these days (most days) — and I’m thankful for that, too.  She still often likes to breastfeed before falling asleep.  She’s getting towards the end of the life of her transfused blood, and so she doesn’t eat much.  She wouldn’t even mashed potatoes last night, or the leftovers this afternoon.  We try everything to cajole her to eat, but she just doesn’t eat when she gets low in blood.  So even though she’s almost 2.5, and I don’t exactly have a huge milk supply, I’m grateful that we managed to keep my supply alive through those very difficult months, so that she could be a breastmilk baby, and can at least have mama’s milk when she’s not getting much nutrition elsewhere.  I’m grateful when she’s lying there in the crook of my arm, after just having fallen asleep, and she nuzzles in close to me.  It’s very sweet.  It’s very kitten-like.  It’s very animal.

I once saw a bumper sticker (in Portland, of course) that said:  “What if we are spritual beings having a physical experience?”

We so often think of it the other way around.  So many of us try to find that elusive confirmation of meaning of life, of a God, of purpose to existence.  So many want to experience a true spiritual experience, to feel the bliss of enlightenment, if only for a day, or hours, or few minutes.  Yet, what is so bad about being animal?  What if that bumper sticker is exactly the case?  And why couldn’t this world be some sort of pilgrimage?

What does it take to be a pilgrim?  Well, if you’ve ever played Oregon Trail, healthy gut flora will help, because an awful lot of folks manage to ford the river but still die of dysentery.

But what it really takes it courage.  Pluck.  Grit.  Fearlessness.  Audacity.

Call it what you may.  Whatever you call it, it takes a lot of courage to try something new.  To be a pilgrim.  To break away from what the rest of the people are doing and say: “Do what you want.  I’m going into this new, and perhaps uncharted, experience.”

What else does it take to be a pilgrim?  Creativity.

And a willingness to be wrong.

Adahlia and I are pilgrims on the journey to find a way to resolve her anemia without the use of steroids.  And I have no idea if it will work.  By all accounts of those who have come before me, who have not necessarily cured red cell aplasia but have resolved and reversed symptoms and signs of MS, cancer, or Lyme disease, a natural medicine cure is a long and arduous road.  The body needs re-educated into a new pattern of homeostasis.  It needs to rediscover its old state of health.   That’s difficult in itself.  It takes 2-3 years, or longer, in some cases.  And in the case of a child who was born with an unhealthy pattern incapable of sustaining life, it takes even longer.  Because that body never knew health.  It never experienced health.  It needs to figure out what health looks like.

Adahlia went another 5 weeks between transfusions, which is fabulous.  Honestly, though I’ve said it before, I don’t know how parents handle going 2-3 weeks between transfusions.  Its terrible.  It eats you apart from the inside.  If that was our routine, I’d be insane by now.

I’m grateful it was five weeks.

Moreover, we had additional good news:  For the first time in months, she was retic-ing.  She was making her own red blood cells.  It was in the low-mid normal range.  For the past several transfusions, she had so few baby red blood cells that they were determined to be “not measurable.”  So, this is excellent news.

Her iron levels (as measured by Ferretin) have not, however, gone down.  They have plateaued at around 800 (currently 750+).  The other night, she woke several times with stomach pains.  Probably the Exjade medicine (iron chelator).

On Monday, she will be 4 weeks since her last transfusion.  The child is pale.  She is moody and more violent than usual.  This leads me to believe that she may need a transfusion.  Yet, she sleeps soundly.  And when she is nearing transfusion, she typically wakes often.  So perhaps she will go 5 again.  Its hard to say.

We went to Portland shortly after our last transfusion to test her homeopathic spagyric and chinese medicine.  She still needs probiotics and AFA blue-green algae.  She still needs the medicine to counter acid-base imbalance (she tends towards acidity, which is not life-supportive.  The body MUST be alkaline to be healthy).   And she still needs the medicine to change the terrain of the body that supports deep-seated infection.

However, she no longer needs the medicine to fight infection.  And in her chinese herbal formula, she no longer tests positive for the hallmark anti-bacterial, anti-viral herb for infection.

She tested positive (needs) homeopathic spagyrics to support her Spleen.  And to support the energy of her Stomach and Large Intestine (digestive, down-bearing energy).  In her chinese medicine formula, she now wants herbs to help the Lung.  My mentor understands these herbs to have an effect in auto-immune conditions.  In other words, first the foreign influence must be removed from the system.  Then, the body, which has become pathological from trying to deal with the foreign influence, must be reeducated to stop destructive processes and start constructive processes.  In other words, the previously over-burdened, over-taxed, and freaked-out system needs to be calmed down and re-educated on how to function normally.

It would all be a beautiful, but unconvincing theory if it weren’t that it has been working for me.  My left kidney is rarely in any pain, and a year ago, the pain was almost ever-present and very distracting.  I also had my creatinine levels checked a couple weeks ago, a measure of overall kidney function, and was very pleased to learn that it was back down to my pre-pregnancy levels of 0.7 instead of 1.1.  I had little hope of such turnaround.

The herbs that Adahlia is starting to test positive for were herbs that I started to take about 9 months to a year ago.  According to the theory, it makes sense that I would heal faster than her, because my body was healthy at one point and is returning to health.  She was formed in utero in state of ill-health.

This is also interesting to me, because I understand chinese medicine physiology.  While I cannot explain everything to you in this post, I can explain a little.  If you’re still reading, you will probably find this interesting:

In Chinese medicine, every organ is more than an organ, and even more than an energy.  They represent functions in the body that are functions that can be found anywhere in nature, and even in government.  The Heart, for example, is the Emperor, and its sole purpose is to receive the heavenly mandate (spiritual direction, or destiny) for your life and send it out (like a pulse) to all the cells.  The Lung is the Prime Minister.  It is responsible for keeping the body functioning in alignment with the Heart and its puropse, and it does this by distributing Qi (or Chi).  It is symbolized by the Mountain, and so the Qi is distributed like dew or raindrops from the mountain.  The Kidneys are like deep, black pools.  They are dependent upon the dew from the Mountain to sustain their depth.  They grasp the Qi from the Lungs as it falls, and recirculate it.  This is why health is maintained through deep breathing into your low belly, your dantian, your Gate of Life, your reservoir of energy.  If the kidneys cannot grasp the qi, if the Qi does not refill the reservoir, you cannot maintain health, and you will (sooner rather than later), fall into some sort of chronic disease, or not be able to recover from an acute disease, and you will die.

This is the importance of deep breathing.

Interestingly, for most auto-immune disease, the patient needs the bulk of the treatment to be through the Lung.  It is seen time and again.  Because what you have is a system that has become over-burdened.  Pathological.  And no longer functioning as the Heart is directing.  The Lung is too weak to keep the rest of the Organs filled with Qi and doing their jobs.  So it all breaks down.  No cells are listening to the only true Leader (Emperor/Heart) because the Lung can’t properly disseminate orders and keep the Qi flowing in its proper path.  Organs such as the Spleen, responsible for Transformation of blood and other substances, can’t function.  The Stomach and Large Intestine don’t have the energy to pull energy downwards.  Invaders can take hold, because there is no integrity to the system anymore on any level.  The system tries to respond but ends up attacking itself.  You have revolution.  You have anarchy.  You have a system in collapse, and eventually, death.

At this point, I would like to remind readers that Adahlia has signs of Kidney deficiency — not from the biomedical perspective, but according to chinese diagnosis.  But it is hard — very hard — to successfully treat the kidneys, according to any medical perspective.  They are, quite simply vital, and very deep, when it comes to health.  There’s nothing superficial about kidney health, and anytime you endanger their health (through an untreated UTI infection, for example), doctors will move very quickly to save them.

What we are doing with the Chinese herbs are approaching the kidneys through the Lungs.  We are helping the Lungs to distribute the Qi more effectively.  At the same time, through other herbs, we are encouraging the energy and Qi to stay down, to root down into the kidneys.  They are a bit too weak to grasp the Qi, and so we also include herbs to help strengthen them.  But the majority of the emphasis in her formula is on descending, on Lung function.  It was the same way for my herbal formula — in fact, it is still is a primary component of it.

Now, if you’ve read all that, hopefully you’re thinking:  Whoa!  That’s pretty cool!!

It is pretty cool.

Chinese medicine is a fantastically beautiful, challenging, cohesive and – what’s most important – true way of perceiving the functioning of the body.  This is not to say that the biomedical model is wrong. It is not wrong.  They are BOTH right.  They are simply looking at things in different ways, and I can try to explain that sometime.  The point is that if you work with both of them, you can achieve wonderful results, while causing minimal harm.

It just takes a lot longer to treat with natural medicine than it does with steroids.  And like with any medicine, there are no guarantees.  So its very hard to stick with, because change happens so slow, and it can be tempting to become frustrated and even give up.

Yet….

It is possible to successfully treat MS and cancer with natural and Chinese medicine.  Is it possible to treat red cell aplasia diagnosed as DBA?  I don’t know. We are pilgrims.  No one has tried this before.  We shall see.

This week, I will see how Adahlia is doing by taking her to get a finger prick test to check her hemaglobin.  In my own health journey, I was able to meet with my new Denver VA urologist and he agreed that they needed to repeat the nuclear medicine scan of my right kidney, to check its function.  Back in July, in was only functioning at 10% — which warrants removal of the kidney according to many specialists.  This specialist explained that there are two schools of thought when it comes to kidney function, and some specialists will agree that any function is better than no function, and will agree to try to save it even if its only at 10%.  But he said he will definitely try to save it if its at least 20%.  There is hope, because my overall kidney function seems to be better.

On Thanksgiving, we can always find something to be thankful for.  My challenge to you, dear friends, is to be a pilgrim.  The world needs more of us.

Fear not.  Follow your hearts.

There’s so much I could say on what’s happened in our lives since our last post, I scarcely know where to begin.

First, perhaps, the fact that we no longer live in Portland, or Oregon, for that matter.  We moved to Colorado in early August, due to a fortuitous job offer that Joe received (from his old company, actually.  They said they realized they made a mistake in letting him go, and that they needed him, that their other location in Colorado was struggling — would he come back to them and fix it and manage it, if they gave him a significant raise and a promotion?)

Like with so many things for our family during the last couple of years, it was miraculous timing.  A last minute thing. A retrieval from the frying pan.

Unlike the first year or so of Adahlia’s birth, I have become better at letting things happen.  Joe had received a temporary job that allowed us to remain in Portland last January, but things were looking dire for us again this past spring.  No one knew.   If they did, they would have been baffled that I wasn’t freaking out.  But I had reached a point where I no longer cared what would happen.  After all we had gone through, I had finally had enough.  I had no more struggle within me, no desire to try to keep fighting the tide.

Or perhaps that’s not exactly the right way to say it.   I knew, that what would happen, would be what must happen.   And I accepted it, no matter how ugly it might look, or no matter how much I wanted something else, some ideal, instead.  I brought myself to the table, following my heart/gut even when it seemed stupid, refusing to accept judgments on it, and let the world unfold the rest.

I trusted.  Not even necessarily that things would work out – that we’d all be together, or that we’d have a nice life, or whatever.  I let go of all my designs.

I know I’ve said this before, but if I sketched out all the things for you, if I told you all the lines drawn for me, creating a path simultaneously twisted and clear, so that all that was asked of me was to bring myself fully, you would be amazed.  You would call me lucky.

Even after all I’ve been through, you would probably call me lucky.

And I would say its offered to you too.  In boon times and in drought, it is still there.  Sometimes, it’s just easier to see (or sense) than others.

We are material creatures, and so material examples are sometimes easiest.  So let me say that Joe received this very unexpected but incredibly fortuitous offer, and moved out to Colorado in late June.  Because of her blood transfusion schedule, we had one week in which Adahlia could fly to Colorado with me to visit Joe, to see how she would handle the altitude, and for us to look for a place to live.  This town in Colorado, where we live, is a very hot market, and rent for a modest house in a neighborhood that would feel like home to me, would be a third more expensive than the mortgage would be for it.  Yet, houses sell the day the are on the market — many never even make it to the market, and are sold through deals cut through brokers in the know.  Homes for rent go similarly fast, but at higher price tags.  This is partly a result of the flood last year, and partly because of the location and economy.  All housing is at a premium.  And we had a week to figure something out.

Or possibly keep our family separated for a longer time.

Yet, strange event after event happened, and one house remained on the market when it should have come off — twice. A house exactly within our budget.  Long enough for us to see it.  Long enough to make an offer we felt comfortable with.  An offer below asking price — but accepted over another party’s offer, and then another’s, which was $15k more than ours.  Obstacles arose, and then fell.  I’m not saying Joe and I didn’t do our part — we did.  Gathering paperwork, mountains of paperwork, what with Joe having lost his job when Adahlia was so little, and being out of work for a year.  Yet, 30 days later, we closed on a house.  Its beyond phenomenal — if I weren’t sitting here, typing it, I would say it is unbelievable.  Moreover, it is a house that, when we visited, Adahlia rolled around on the floor of, clearly making herself happily at home, and when I questioned her, she said it was where she said she wanted to live.

On a soul level, in a way, I know Adahlia chose this house.  Or it chose her.  Or us.  Or it was part of the meant-to-be.  Either way, we live here now.  And its perfect for us, for right now.

That is only one example.

So much has happened, and in a way, so little.

Adahlia turned 2.   🙂   Now that is a big deal!  It was a wonderful little celebration. There’s a lot I could say about her adorableness and growth, but I will save that for another post.  I will only say that she is an absolutely fantastic little person, in every way.  And she loves her father so much.  When we got off the airplane, my heart melted to see her how she greeted her dad after not seeing him for 3 weeks: smooshing his face in her hands, petting his hair, gazing into his eyes, cradling his chin, pulling him close, giggling, eyes shining, not letting go of his arm, his neck, and continually petting him, touching his face. Beautiful.

Adahlia received a blood transfusion this past Monday, September 29th.  I’ve lost track — I’ll look up how many she’s had so far before we receive the next one.  It’s been her second in Colorado.  After her last transfusion in Portland — everything down to the wire (she received a blood transfusion Tuesday, then I had another stent replacement surgery for my kidney Friday, and then Monday I was directing movers to pack up our storage unit and my acupuncture office, and then Tuesday they packed up our NoPo apartment, and we were on a plane to Colorado that evening, and closing on our house 5 days later)  — well, it was only 3 weeks until her hemaglobin was again so low that it warranted transfusion.

Three weeks between transfusions.  I know there are families out there that regularly go only 2 or 3 weeks between transfusions, and honestly, I don’t know how they handle it.

After her first transfusion here in Colorado, for the first time ever, Adahlia pointed to her inner arm, where she gets the blood transfusion IV, and told me she didn’t want to have anymore of them.

“Your blood transfusion?”  I asked, as she pointed to her inner elbow.

She nodded yes and put the tips of her index finger together, the sign for ‘hurt’.

“It hurt?  I know.  I’m so sorry.”

She held up her hands in the “all done” pose.

“You’re all done with blood transfusions?”

She nodded yes.

“Oh lovey,” I sighed.  “I hope so.  That would be wonderful.”

And for awhile, it looked like, maybe, just maybe, it might be true.

At 3.5 weeks, we did a finger-poke test of her hemaglobin and it was 10.4  10.4!!!   When the nurse said it, I had to have her repeat it.  I couldn’t believe it.  I have never, ever had anyone tell me that her hemoglobin was in the double digits.   It was so miraculous, I started to laugh.   We celebrated that night with cupcakes … Adahlia was so excited.  She picked out 3 cupcakes herself, and we shared them after dinner.   (Afterwards, I regretted it a bit, because the sugar made Adahlia insane.  We won’t be repeating it!)

The next week, at 4.5 weeks, it was 9.6.   I was still happy, though aware of the downward trend.

Then, at 5 weeks and 5 days, Adahlia’s hemaglobin dropped 2 whole points, to 7.6.

Now, realizing that there is a margin of error to these tests, it can still be observed that she was holding steady for awhile, and then she dropped drastically in about a week’s time.

What were we doing different than we were doing when she only went 3 weeks?

Well, after her last transfusion (the 3 week transfusion), we began her on a mega-dose of folate.  She was already taking 400 mcg.  At her hematologist’s recommendation, I bumped it up to 1 mg (though she actually is taking closer to 1.2 mg), or three times the amount.

I also decided to get serious about her medicines.  With the chaos of the summer, and extraordinary chaos of moving, I had stopped giving her all the medicines exactly as indicated.  I would skip a dose here or there.  After she only went three weeks, I decided that I needed to go all-out or not-at-all, or in other words, that I needed to get serious about her health regimen or drop it.  So I gave it one last go.

It’s an exhausting regimen, I admit.  I would be glad to be done with it.  But I forced us to do it, and she did so well those first few weeks, that I became a believer in them.  And then I got curious.  I wondered:  Is she doing well simply because of the folate?  (It acts as an impetus to the bone marrow to increase RBC production.)  So that last week, after she tested at 9.6 Hb,  I dropped her homeopathic spagyrics and the chinese medicine and most of the other nutritional supplements…

And she plummeted.

It was just a trial, and no conclusions can be drawn simply from it by itself.  But I think it points to a synergistic effect of the medicines.   My theory is that the homeopathic spagyrics and chinese medicine are still needed to clear out a deep-seated, subclinical infection of the intracellular matrix, and that the folate and other medicines (mostly antioxidants) help the bone-marrow recover.  They work together, on opposite ends of the spectrum.

Of course, it also cannot be denied that she is under much less stress now than she was when we were moving (when she only went 3 weeks between transfusions).

So you can see what I say when I say:  A lot has changed.  And yet, a lot remains the same.

Additionally, I applied my “this is it — let’s get serious” medicinal approach to my own health and kidneys.  Along with Adahlia, I forced myself to stick to my many-pill, many-therapy regimen… even though there were many other demands on my time and a billion excuses I could have made as to why I had to skip a dose of one or another.

And I must say that at this moment I have no pain — that’s NONE — in either kidney.

Have you ever had a deep-seated pain?

Have you had it for two years?

Have doctors ever tried to tell you that they cannot find a source for the pain?

Let me say, that it is such a relief to not feel pain in my kidneys!  To be able to breathe into them without feeling fire and sandpaper and needlepoints and constriction.

And its been about 3 days without notable pain.

After two years, my friends, it feels wonderful.  Its amazing.  Its really, inexpressible.

….

I’ve learned so much during this journey, and I know that neither Adahlia nor I are “out-of-the-woods” yet.

I know we have a ways to go.

But we have ridden a heck of a roller coaster, and have found the value of things intangible, but of the only real value.

Over and over.  Loop after loop!  Deeper and deeper we go.

The strange unfolding of our lives makes it clear to me that I am not in charge.

And neither is anyone else.

If I had listened to so many well-intended others, ever since I became pregnant to this day,  I can say, with the certainty of someone who cannot be disproven nor proven, that neither Adahlia, nor I, would be as healthy as we are right now.

The moral is a paradox, as all truths are.

You must listen to everything and no one.

Listen to your inner self.  Do what feels right.  Remain true to your heart and gut, letting that be your guide.  If you do not know what it feels like to follow that call, practice in small ways, or small decisions, until you do.  You should only be afraid of choosing something not in keeping with your soul integrity — never of following it, even if it makes you the black sheep amongst white.  When we are stripped, it is the only thing we will truly have.

And then, surrender your sovereignty, but surrender it only to God.

I am so thankful for all we’ve come through, so grateful, and even more grateful because I don’t care if we have to give it all up tomorrow.

We are here.

And when it comes to states, it’s a good place to be.

… is always exactly where you are.

And not just in terms of location. I mean with your family – they are exactly who you need them to be. I mean in your love relationships. I mean with your health. I mean in your job. I mean EVERYTHING when I say that where you need to be, is exactly where you are.

Have you ever heard that? Do you believe that? Is that true for your life?

If not, I gently suggest that you consider (or reconsider) it.

If I have observed anything over the last 6 years, it is that this isn’t a place of mistakes or random occurrence. This is a place where everything connects, where everything influences everything else like ripples and waves and wind on the ocean, where the people in each others’ lives exist purposefully to bounce ideas and come into conflict and challenge each other into growth and awareness and towards becoming the highest version of themselves, into learning and becoming stronger in what is truly most important and least tangible. It is a playground for the soul. It is a place to learn.

A Bodhisattva does not exist without the pupil. They create each other. They trade places with each other not just over lifetimes, but in the same conversation. They enlighten each other.

Where we need to be is always exactly where we are.

There aren’t conclusions to be drawn from it. There isn’t blame to be attached to it. It is a faultless, guileless, simple truth, for the sole purpose of helping the soul to blossom.

Where we need to be is always exactly where we are.

And it appears, friends, that where Adahlia and I need to be isn’t in Portland anymore.

A remarkable turn of events has happened for our family. I have not mentioned it because everything was too in flux for anything to be said. But several weeks ago, Joe relocated to Colorado with an offer from his previous job that validated him in extraordinary ways. We’ve finally worked out how and when Adahlia and I will be joining him, and as the tide would have it, it looks like we are buying a house. If I expressed to you all the serendipity and pieces that have fallen into place for us to be able to buy this house, you would be amazed. (I am.) We took Adahlia out to Colorado to see how she would handle the altitude (doctors are concerned she will need a transfusion every 2 weeks instead of 4 weeks for the first 6 months she is out there, and that’s still a possibility. But they were also concerned she’d suffer headaches and muscle cramps due to not having enough blood cells to cope with the altitude… but she seemed to do fine.) Adahlia’s next blood transfusion requirement is going to line up with when we need to fly back out to Colorado to close on the house, and, miraculously, it looks like the doctors are going to be able to get an authorization to change the stent in my kidney a few days before we fly.

In the past 2 months, everything — and I mean everything — has come down to the wire. I have been unable to offer a definite exit plan to the clinic I work at, to tell them when I would be leaving. Every day since mid-June, the next week has been a complete unknown. Because of when Joe would be leaving for Colorado. And when we could (and if we could) join him, due to Adahlia and I’s health situations. I could schedule patients only one week out, and sometimes, I had to cancel or add them back in with only days notice. It has been a phenomenal bit of coordination and letting things happen one day at a time.

The owner of the clinic I work at, three weeks ago, actually only knows of Adahlia’s health situation. I haven’t told of her of mine — I’m not sure why. I think its because it just is all so much, and I don’t want to overwhelm people, and I don’t want pity. As she was learning of the latest steps in my process, with all the big things like where we would live, and if we would even move, and how we would handle the transition for Adahlia — all such big things hanging in the mysterious unknown — she said to me: “How are you so calm? How come you aren’t completely stressed out?”

I replied: “Because it’s entirely out of my control.”

Now, this is not to say that I didn’t have my moments of stress. I certainly did. But they passed quickly. I can honestly say that. Because each day unfolded one more piece of the puzzle. Every day, something happened that would direct the action of the next two to seven days. And as I couldn’t plan beyond that, I didn’t try. Instead, I accepted that where Adahlia and I would end up at summer’s end would be where we needed to be, regardless of what it looked like.

I have come to realize that where I need to be is always exactly where I am. And sometimes that place isn’t exactly comfortable, or nice, or a step up in the world according to the average American.

And that’s okay. I don’t care if its uncomfortable, or looks bad, or is a downward trajectory. And I can say that without falsity or bravado.

I accept it.

Because, my friends, I know nothing.

And neither do you.

We can’t see the wizard behind the curtain. We don’t know the master plan. We don’t know if its going to rain or be sunny in the afternoon, and we know even less if any event is going to be “good” or “bad”… and this is because “good” and “bad” don’t exist. They are moving targets. They change based on relativity and based on what happens next.

I don’t know what’s going to come of Adahlia’s situation. I don’t know why this disorder is in our bloodline (if it wasn’t a freak mutation), and I don’t know how it got there.

Today, one of my doctor’s expressed dismay learning that my surgery had been cancelled to save my kidney, because its function is too low.

“I don’t understand why it failed!” she said.

Well, neither do I.

Of course, I have my conjectures. Why did it happen? Because it was meant to be? Or perhaps it has to do with what I stated earlier — how everything is connected, nothing is a mistake, there are reasons behind everything. I see more connections between things than most people would prefer not to connect. (It can be daunting to start to realize the connections. And tempting, then, to play the blame game.)

If we are exactly where we need to be, and we don’t like it, how do we get out?

Well, we remain open to change, but we stop “trying” to be other than where we are.

We start with being where we are.

We start with listening: not to others, but to our deepest truth, gut, and inner self.

We act only from that place.

And if we aren’t sure of what to do, we do nothing. We see what unfolds. We let what happens, happen. We stop trying to control, to direct, to change, our lives.

Sound silly?

What will sound sillier then, is that we continue to stay there, in that uncomfortable place. And we examine everything we can about that place. And we love ourselves for being there. And we come to love that place. And we love God for having us there, because in it is the difficult and dark places that we learn and grow.

Things appear to be changing for our family it seems. Miraculously. Financially, and more important, in health. I have hope for my kidney, even though supposedly its dead. I have hope for Adahlia, even though there is no medical reason to hope at this point.

And when I say hope, I mean love.

I love my kidneys. They have been through hell, and they are amazing.

And I love Adahlia. She has been through hell, and she is amazing.

In my last post, I talked about what I had given up for Adahlia, to carry her and birth her and bring her to this day. It has not been easy. But the truth is, my friends, that I had some foreshadowing of difficulty ahead. There was a moment early in my pregnancy, when Joe told me that in certain religions, in order to birth an extraordinary person into the world, the price was the mother’s life.

I breathed. And then I said, “Well, if that’s what happens, I accept.”

Of course, though, I didn’t want that to happen. I knew and could communicate with and loved Adahlia while she was in my belly — an extraordinary person! I definitely wanted to know her when she was outside it. And the price for Adahlia has not been my life. I have been blessed to nurture her, hold her, kiss her, read to her, teach her, learn from her, and play with her. She is my very best friend. The best friend I wanted when I was little. The best friend I wanted when I was older. And truly, my best friend now.

Does she make me mad sometimes? Yes, of course. She can be ornery and demanding. But she is also the absolutely most intelligent, soulful, sweet, fun, inquisitive, and musical person I have ever met. And she is extraordinarily patient and reasonable. If folks say you can’t reason with a 2 year old, well, Adahlia and I prove them wrong multiple times a day.

The truth is, friends, that I would actually give both my kidneys for her. If conceiving her set off a strange chain of events and her existence ends up costing me my life, that’s okay. Even if she dies, too, and it all seems like it was for nothing.

Is anything ever for nothing?

Does not every movement, every ripple, even ever so small, cause an effect upon the greater whole?

Where we need to be is always exactly where we are.

And it does look like things are turning around for our family. We are enjoying it — oh, it would be wonderful to have a house! And to be healthy! That would be so fantastic.

But if it doesn’t happen, if the house falls through… well, that’s okay.

If something happens with Joe’s work, or Adahlia’s health, or anything else… well, that’s okay.

And I mean it. I kind of don’t care about things “working out” anymore.

I’m just happy to be here.

For however long I happen to be here.

And I wont go down without a fight — for myself, or for Adahlia.

Adahlia is now 2 years old. She celebrated her 2nd birthday the day before independence day. She still says “Happeebihrddday” and engages with me about it. (I ask her how old she is, she holds up two fingers. I ask how old she used to be, and she holds up one finger. “But not anymore,” I say. “Because you had a happy birthday. Now you are two.” And she nods and smiles and exclaims “happebihrdday!” and asks for ‘more’ happy birthday in sign language. Then I laugh and tell her not for a long time, that a lot of other people have to have a happy birthday first, and then she can have another one. “You get to be two for a long time,” I say. “Do you like to be two?” And she smiles and looks at me mysteriously: “yeeah.”)

I have so much fun learning and playing with Adahlia. Going on bike rides, getting pizza, emptying the dishwasher, running errands… she’s a trooper and a pretty darn good team player. We still sleep together at night… and in fact, she’s waking up right now and looking around wondering where I am. I should go.

Because I need sleep too.

Where we need to be is always where we are, until we no longer need to be there.

And then something will shift, and we will no longer be there.

We set our intentions, and we bring our best forward, but we don’t need to push it. We don’t need elaborate plans for our future (it is somewhat folly — there’s so much we can’t control or anticipate!) And we certainly don’t need to stress about it.

What we need is to be flexible, and strong in our center, so that the winds, the waves, the “slings and arrows of outrageous fortune” can strike us, and we find that we are okay in the depth of our being. We use it as an opportunity to learn, to grow, in our own Being. And possibly we will be able to offer something greater and deeper once we come through it.

Where you need to be is exactly where you are, until you no longer need to be there.

Believe it.

And love where you are.

There are all sorts of answers to this question.

Some women will say that their bodies were never the same:  their breasts, their abdominals, their hair, their hips…. the list goes on.

Some women will say that their relationships with their partners were never the same:  something shifted, something got lost, something became less important, something became more obvious, something became more stressful… and the list goes on.

Some will say that their professional lives, financial lives, and personal goals were never the same:  they dropped out of education, they left practice, they had to take out a second mortgage, they couldn’t afford the vacation they wanted, they were too tired, there were too many demands… and the list goes on.

The sadness, bitterness, and even resentment about all the things women lose in motherhood is tangible, even if its cloaked in a joke or wry smile.  But then, nearly all women will immediately insist that it was worth it.  That the experience was and is worth it.  That this person that they are bringing into the world was worth all the sacrifices and the many more to come.

I always thought women were kind of mean, and kind of stupid, and kind of sad, and kind of brainwashed, and kind of crazy, to say and think such things.

Because I thought that the cosmetic changes of pregnancy and post-partum were superficial and missing the point.  Because I thought that a true loving relationship rooted in mutual respect and understanding would simply expand to include a child.  Because I thought it possible to live a healthy balance of professionalism and motherhood, because I believed in the importance of my own contributions that come from my heart, mind, and hands, and because I had a solid financial foundation and few personal material desires.

Because of these things, I did not think having a baby would be much of a sacrifice.

And then my pregnancy became complicated.  And then Adahlia was born without the ability to make enough red blood cells to survive.  And then my kidney kept failing.  And then the VA failed to do anything about it.

And if you look at all the losses, they are staggering.  I lost thousands of dollars in savings and all the future plans for it (both personal and business) when Adahlia and I got sick and Joe lost his job.  Joe and I’s relationship has been stretched to a breaking point.  I lost my scholarships and had to quit my doctoral program when I could no longer pretend to be able to keep pushing forward, when it was clear to me that Adahlia needed me and that my health wouldn’t allow it.  And though I tried numerous times to re-start it, I never was able to reopen my healing arts practice when I closed it 6 months into my pregnancy, to give myself time to enjoy the last months of my pregnancy.

I would have never guessed I was closing it for the foreseeable future.

And I would have never guessed this latest loss:  my surgeon informs me that the kidney function test says that my right kidney is only contributing about 10% to my overall kidney function. Therefore, they won’t operate on it.  They won’t try to save it.  They want to remove my right kidney.

So, in addition to all the above, I learn that my pregnancy has cost me a kidney.

They tell me not to worry:  my left kidney is functioning fine.  I will have to be very careful not to get an infection, but lots of people survive just fine on one kidney, and I won’t necessarily have to go on dialysis anytime soon.

Yet, for someone who was climbing mountains and scuba-diving and rock climbing prior to pregnancy, someone who enjoyed traveling to remote (i.e., dirty) parts of the world and was planning on being a world traveler again, this is NOT okay news.

Moreover: my left kidney doesn’t FEEL fine.

Would this be any less upsetting if I had birthed a healthy child?  A child able to make her own red blood cells, who wasn’t always teetering near death?  Would it be easier if, at the end of all the tallying, I could at least point to Adahlia, and like the aforementioned women, smile somehow wanly and blissfully at the same time, because at least a healthy child has been brought into the world, and a child is a world of possibility unto itself?

It appears pregnancy demands sacrifice, and if one doesn’t find the typical road very sacrificial, a road will be created so as to test one’s ability to withstand it.

Of course, this is not the end of the story.

There are second opinions to be obtained.  There are battles to be waged in consultation offices.  There are losses to be cut and there are new directions to be explored.

There is a time to push onwards, because it is one’s truth, despite any and all obstacles.

And there is a time to cut free, and move in an entirely new direction.

And perhaps, as they wise woman in my dream said, the point is this:  “How low can you go?”

How low can you ride the tide?  Can you ride it until it hits bottom without losing yourself?  Without falling into despair?  Where is your center?  Because if you cannot ride it down, then you cannot ride it to the top.  You must find serenity of mind and integrity of purpose.  Let the waves come.  Let the hurricanes blow.  In the center, beauty and joy awaits irrespective of outrageous fortunes.  But, it requires work to find the center.

Meanwhile, Adahlia is amazing and is doing well at 4.5 weeks post transfusion.  I took her to the oriental medicine physician and herbalist I trust, and we tested her, and her inflammation is significantly less.  The auto-immune reactivity is almost gone.   We tested the homeopathic spagyrics I was using to flush her system last month, and they tested beneficial for her in addition to the chinese herbs.  It appears the therapies are working synergistically, and so I will start using them together.

I cannot speak for all children with DBA, but I know that I have been right about what is going on with Adahlia, and that whether or not she has a genetic marker associated with DBA, she also has a deep-seated intracellular infection that spurred an auto-immune reaction and systemic inflammation.  We are resolving these things little by little, month by month.

There is no doubt in my mind that Adahlia will be fine.  She will eventually be cured.

Can I regain my right kidney function?  Doctors say no.  I say yes.  I say that with the right and consistent application of acupuncture, moxa, herbs, and energy work like reiki and qigong, if they will just fix the kink in the ureter and leave me my kidney, that eventually, it will start participating and contributing more to overall function.  If this surgeon won’t do it, I need to find a surgeon that will repair the obstruction and give me a chance to heal my right kidney.  Because I completely agree:  a non-functioning kidney will be a potential seat for infection.

After all, what happened during my pregnancy?  My right kidney became blocked by a preexisting (congenital) but previously unproblematic obstruction in my ureter.   The urine backed up into the kidney, causing it to swell (and become rather painful.)  It stopped functioning.  It failed.  And (my theory):  an infection then went wild, unchecked by my immune system because it was suppressed for pregnancy, infecting Adahlia and triggering Adahlia’s bone marrow failure, causing systemic inflammation and auto-immune reactivity in us both, and well, that’s our story.

And I will need a report saying that I only had 10% function at a certain point, if I want to show that that these natural medicines truly are amazing, as we all know that they are, and that my kidney has recovered, and is now contributing 20% or 30% of function, correct?

Meanwhile, healthy or not, I have the most amazing little friend.  She has big, wise eyes and she strokes my face and wraps her little arm around my neck, pulling my forehead close to meet hers, and smiles.  She pats my back when we hug and she wraps her neck close to mine, as if we were giraffes giving a neck-hug.  She climbs onto my lap and stands, jumping up and down, holding onto my hands and swings herself side to side, singing:  “laddle, laddle, laddle!”  She gets on her wooden rocking horse, rocks it to its extreme point, and then climbs up onto the back of it, balancing there, taking on the risk of falling, standing on its back like she’s the lady on the white horse in an old time circus tent.

She steps down to thunderous applause.

You just might be a match for Adahlia or another child with DBA.

You could give the gift of another month of life.

Look up your Local Red Cross and Make an Appointment to Donate Blood Today!

Love, Erika