I just woke up from a rather illuminating dream. For those if you gifted in interpretation, some parts are obvious. If you have insight that could help, please let me know:

Amphitheater. Ghosts everywhere, bad vibes. I keep accountability of my family and set up a buddy system for the children and even adults so none get led away by ghosts. Ghosts then seem ok with sharing space: there is an opera singer who floats by singing at the top of her lungs and is ok with a live opera singer performing her song, as long she doesn’t try to hit the high note and leaves that in homage to her. Other ghosts are spectators. They are everywhere, but my buddy system works. The atmosphere is no longer ominous.

Then two young boy ghosts, brothers, try to take me to door to a dusty storage area. I assume it is where they were killed; the amphitheater stage is only a small part of a vast and daunting network of rooms and passages. They tug on my arms but I resist because its real bad energy in there. I am very afraid. I get the idea that their dad, or whoever killed them, is in there and would be pissed by my entry.

Now outside, a healer NCNM friend plants two green shoots for the boys. I’m not sure what the plants are, but I might recognize them if I saw a picture. She tells me they were killed by a little girl they loved: she took them to a basement, exposed them to a poison to see if they loved her. The poison leaked out of the bag in a purple haze; she had suspended the bag above them. She did it first to one boy, and then to the other. The second boy knew she had killed his brother but went anyway. Out of love? Or childlike obedience and ignorance?

I start to follow my friend and she enters a subterranean parking lot. Dead, bleeding people, or ghosts, are suddenly everywhere, coming up to me. She doesn’t see them. The atmosphere again has turned ominous and I am scared. Purple haze is filling the air. I turn and run; my friend is left behind and when I look back she is struggling with the haze but is still trying to follow me out. I escape by climbing up a sewer drain and am outside.

A nonchalant blue collar man walks over, chatting about poison needing to get out, hits a release valve, and it’s like a fire hydrant shooting purple water into the sky. Some gooey drips are falling and I cover my mouth; some poison gets in/on me and I’m worried, but I’m ok.

I awake.

Subterranean parking lot and storage areas: the subconscious. Areas unused, unexplored. The amphitheater stage is real life: only a small part of reality, but where things are literally “acted” out in the “real” world.

Sewer subterranean: kidneys.

My family, NCNM friend, blue collar worker: aspects of myself.

An obvious need to purge a poison or perceived poison … Question is how to do it. Dream suggests I am overthinking it.

Dead, bleeding people underground: my kidney cells? Or, simply more “ghosts”?

The ghosts: beings from other dimensions. Some are perceived as helpful or at least innocuous, others seem dangerous. They share our reality (stage) and also move freely into places we cannot or do not go. Whether or not we are supposed to, or should, is another question. Obviously, the “ghosts” wanted me to go. My NCNM friend tried to lead me there too. My instinct, or fear, said otherwise. Wise choice? Hard to say. What is interesting is that when I refused to enter the dusty, offstage storage area, whatever directs dreams simply gave me another metaphor for the subconscious: the subterranean. Something is certainly trying to get me to go into scary places.

(Note: I’ve gone into “scary” places before in dreams… They are often portals to places where you learn things. Then again, sometimes, they simply lead to a nightmare. Typically, I have to have a real strong motivation to go into someplace that feels ominous. (Once, a little boy ghost told me that a woman who took me into a scary place could help me with Adahlia, so I went, but I couldn’t solve her riddle.) I also once really pissed off a benevolent ghost by refusing to go into the basement where he/she was simply sitting in a rocking chair, knitting. It was as non-threatening as possible, since it was my childhood basement, which is a finished basement, and it was only that one “ghost.” I think I was supposed to go down there to learn from that entity. But I was scared of the unknown: what would this ghost look like? What if she/he got mean? When I shut the door instead of going down the stairs, he/she threw it open and howled at me like the wind for being such a chicken. I couldn’t see the “ghost” because Id been knocked to the floor; I felt more scolded than scared. Since then, I’ve engaged more with talking with “ghosts.” But I do hate it when the atmosphere gets all freaky.)

A purple poison? Interesting. Purple is the color of wisdom, of psychic ability, of the third eye chakra, and second only to the purity of gold and white. Purple is a high color. Very odd that it would be poisonous… Am I not utilizing something properly and perhaps it has turned poisonous? What needs released?

Other ideas?

… Is that my kidney function has continued to improve. Despite the discovery of anti-nuclear antibodies, my eGFR was up to 72, and my creatinine 0.9, as of yesterday. I can only attribute it to the intensive diet and herbal and qigong and acupuncture and reiki regime. Add in the countless prayers and healing intentions and energy we are receiving from family, friends, healers, strangers, and others, and you have a powerful recipe for healing.

The downside to our necessary therapies? I can tell that the herbs decrease my milk supply. It had gotten so low, and Adahlia so frustrated, that I took the whole day off yesterday from herbal therapy. And last night, the deep pain crept back in, and my kidneys ache now. So I will have to restart them.

What a balancing act!

It’s okay.

We can do this.

It’s just a little tricky, but we can do this.

I will do it for me, and dang it of we aren’t going to heal Adahlia, too, I don’t care how impossible it supposedly is. I don’t care how many of her doctors stop talking to me because they find my quest to restore her health insulting, and how many others look at me patronizingly or pityingly. It’s possible. The body is made to heal itself.

It baffles me how so many conventional physicians don’t see that an integrative approach is not meant to threaten them. It includes them. Working together means synergistic results. It’s a good thing.

It’s so interesting to me how I’ve had to incorporate so many modalities, so many approaches, because one by itself isn’t enough. And that makes sense to me, because eating healthy isn’t just about eating spinach. You’ve got to eat the right proteins, carbs, fats, vitamins, and minerals – and one food, or set of foods, just isn’t going to make that happen. Likewise, exercising healthily is a lot more than just running, or just strength training, or just flexibility. And spiritual health is more than just the obligatory check-in at a church.

My medical doctors, the ones who have been so anti-Chinese herbal therapy, so vocal that “we have the answers!” and so sure that the only thing wrong was an obstruction, despite my non-correlating symptoms, so dismissive of my experience of my body, so against the naturopathic doctors and Chinese medicine practitioners that they actually called them “charlatans”, must be flabbergasted, and are most likely, quite upset, and maybe even a little embarrassed.

The doctors of the established medical paradigm would benefit greatly from listening to their patients more, and opening up to the idea of preventative and integrative medicine. More important: their patients would benefit!

It is time to demand a change for ourselves and our loved ones.

Yesterday, Adahlia had her 20th blood transfusion. Just like last time, she was strong, observant, patient, and friendly. For the first time, she was able to walk around the transfusion center, which delighted the nurses, who spoke of how big she’s gotten, how they’ve seen her change over time, her being a regular fixture at the hospital and all. Adahlia received her first temporary tattoo on the back of the hand that didn’t have the IV – a ladybug (she loves bugs, points to them and says: “bah, bah” or “beh beh”). She tried several times to sneak behind the nurses station. She eagerly pulled me towards the play area. And it was another lucky transfusion in that she slept for a big chunk of it.

She also had a baseline hearing exam done, because we need to start her on iron chelation medication. (We need to monitor her vision and hearing, because the medication can cause damage to those senses, so we must be as must be as careful as possible.). She needs chelation. Her ferretin is at 650, her serum iron is at 176, and her % saturation of iron is 95%. Time to move.

The hearing exam was fun for all of us – it’s late at night, I need to rest, so I won’t go into it here. But it was interesting to see how they measure hearing in babies and toddlers, and actually pretty enjoyable.

So I recently got a new general practitioner, who immediately agreed to do autoimmune testing, after months of my urologist and nephrologist refusing, insisting: “you don’t have autoimmune disease. ”

Guess who has autoimmune disease?

This is one of those situations where you don’t actually want to be right. Do you know how maddening it is to have to insist on receiving testing for a disease you don’t even want to have? Oy vey.

So, I have been attacking my kidneys.

Ok, that’s news in a way, because it’s been confirmed by biomedicine, but it’s something we’ve suspected from the alternative and energy medicine side of the house for nearly a year now.

Focus:

What do I need to do to heal myself?

Rest, get deep sleep at night. (Sigh. Its been impossible to date. It is difficult, if not impossible, to get any quality sleep sharing a bed with Adahlia, especially when she is sick and tosses and turns all night. But how can I kick her out? As long as she’s breastfeeding, which she still does heavily, I doubt she’d go willingly. Considering how she practically sleeps on top of me, I doubt shed even be okay on a bed of her own, set up in the same room. And I do feel it helps her feel safe and loved, and is therefore helping her do better. At any rate, let’s get real here: bed sharing is not the root problem. Deeper, more restorative sleep is. I need to figure out how to get it, even though I have a baby.)

Reduce stress. (Ok , big root problem. A loss of nearly all my earnings and savings from my military service has had a huge impact on me. Going into debt to keep a stable roof and healthy food and bills paid has been very disheartening. It will be hard to climb out of this, and I know it. Especially if I am seriously ill, and can’t work. I feel derailed. It’s amazing how fast thousands of dollars of savings goes. And with it, your life. Money is energy, after all. It needs to flow, both ways. Mine had simply been depleted. And obviously, there’s Adahlia, and the stress of her blood disorder, which I need not elaborate on. If you’ve ever loved anything, you know its very hard to see it seriously sick. Even Joe and I’s relationship, which has been so special to me, is often yet another source of big stress. No easy fixes to any of the above. The stress exists. I will just have to figure out better ways to cope with it, or otherwise embrace an even greater zen outlook, an even deeper trust.)

Eliminate allergens in the diet: starting with gluten, dairy, soy, and corn. Get heavy metal testing. (We’ve eaten mostly organic, healthy fare for awhile now, but to go wheat and dairy, etc, free will be a challenge. I’ve even read that I should eliminate all animal protein. As a breastfeeding woman, I know that is not going to be easy… I’m always hungry as it is!!!)

Positive thinking, meditation, exercise, reiki, qigong, acupuncture, high quality herbs and supplements, and all the other healing techniques I know are also vital. (Most also require time and/or money.)

Sometimes, it’s just so overwhelming. I need an army of me to take care of me.

The point, however, is that though I thought we were already doing everything we could, we obviously aren’t, and I need to ante up. I need to commit further. Our lives depend on it.

And I need to keep breathing through all these stressors, reminding myself that I love myself and my life, that I am already everything I need to be. No matter what the external circumstance. No matter what it looks like, or appears to be, to the judgmental or arrogant or ignorant eye.

When I was little, I had a habit of losing things, like watches, or trinkets, and I got in lots of trouble for it. I simply could not keep track of stuff. I fretted over it, was scolded for it; but nothing really helped. I grew older, and gradually, as the years passed, I lost things less often. But I still, to this day, misplace and lose items, and very occasionally they are important or valuable, but usually they aren’t. It’s simply a quirk about me. I cannot express the relief I felt when I finally escaped the observant eye, and finally didn’t have someone hounding and criticizing me about it, when I did misplace an item.

Except I cannot escape my own eye, and it’s quite observant, indeed.

Hey, Erika: It’s okay to lose things.

Hey, Erika: It is just ebb and flow.

It is time to deeply love myself. To take the best possible care I can of myself and my baby. Time to ante up. Time to get fierce about it.

At all cost.

The other day, as Adahlia strode into the kitchen in her moccasin slippers, I realized I was hearing “the putter-patter of little feet” and grinned. Not only is that particular sound amazingly cute, but with everything Adahlia has been through, it is nothing short of a miracle to hear her walking.

I am. So. Grateful.

I started writing this post on 11.11.13. Things have been busy; I’ve been exhausted. So by the time you get to the bottom of this post, you will realize that it’s nearly time for Adahlia to get her blood checked to see if she needs a transfusion. But first, news:

Very happy to announce that Adahlia is a bonafide free-walker, no longer needing to hold onto a wall or sofa for support! A couple days ago, we went to the playground and she walked, instead of having to be carried, from swing to see-saw to jungle gym.  Hooray, little one!

She now loves following me everywhere I go… and I admit, I love it, too.  All around the house, all day long, we walk around together. I don’t even mind when she follows me to the bathroom. And if we aren’t where she wants to be, she takes me everywhere she goes.  For example, earlier today I was in the bedroom, but she wants me to come into the kitchen with her. She enters the room and stands in the doorway holding the doorframe, like a grown-up waiting for permission to enter.  I look up:  she waves.  I wave back and say, “hi.” When I smile she grins. She toddles over, leans up, mouth open for a kiss, and I kiss her, pull her on to the bed for a cuddle.  She then grabs my index finger, turns around, and pulling my arm above her head begins to walk away. 

For exercise, or fun, or both, she walks me around and around the couch. I hold both her hands and lift to give her a boost up the stairs… Her little leg isn’t quite strong enough to push herself up the step.

We go on walks to the nearby nature park. The trail is paved and flat, and there are off-shoot trails of packed dirt and pine needles. She holds my finger as we walk. Sometimes, she walks alone. Sometimes, she rides the stroller. While standing alone a little boy comes running over, chased by his older brother, they are perhaps 6 and 8 years old. Their grandparents follow behind them. The littler boy is making a bee-line for Adahlia, his face lit up in excitement.

“Careful!” I call, as we near imminent collision. “She’s a new walker… Not so sturdy….” I have managed to restrain myself from reaching out to her but I can hear the nervousness in my voice.

She stands. Fearless. Watching. Waiting.

And as he nears, his face beaming in something like mischief and joy, he opens his arms and wraps her in a big bear hug, nearly lifting her off the ground. Then he dashes off, and I lunge forward in time to steady her. Beautiful.

There are some areas of the trail over wetland, or marsh, and the planks are slippery from rain. She slips and slides, holding onto my finger. “Whoaaa! Whooooaaaaa!” I say. She laughs and slips more, and laughs more.

We are at the edge of the park and we hear the sound of the railway crossing. “Look,” I say. “Train.” The light rail zooms by and Adahlia grins. Later, the railway chimes again but I’m lost in thought, or my own observations of nature. Adahlia tugs my hand and pulls. For a second I’m confused. Then I get it. “Oh! You’re right – train!” I say. And I lift her up do she can watch it race past.

On our return to the car, we pass an educational post featuring the photo of a rough skinned newt looking straight into the camera. Adahlia is in the stroller but as I show her the newt photo she lights up, and makes as if to try to sit up and get out. I know what she wants.

“You love him?” I ask. “You want to kiss him?” She smiles broader, eager eyes fixed on the newt, his orange underbelly shining, his eyes iridescent like black pearls.

I lift her up and towards the picture. She kisses it.

And then, as we are passing some oak trees, she again tries to get out of the stroller. This time, I don’t know what she wants. I lift her out and she walks off the path and plops down between the trees, on a deep pile of damp leaves. I crouch next to her as she contentedly examines and sorts the leaves, handing me twigs. We find something that looks like a shell of a nut, but is not. She leans back and then falls back, laying in the leaves, and I laugh. She tries to sit up, but I tell her its okay, so she lays back down and watches the branches move in the wind against the grey sky.

On our way to the car, in the parking lot, she is walking again, holding my finger and I push the stroller with my other hand. Suddenly she stops and squats down, examining the pavement. She is at the edge of a white line marking the crosswalk. She had never stepped on painted pavement before.

Recently, I found a bag of lavender in the back of our bathroom cupboards, either gifted from a friend moving out of town or saved from the free-box at NCNM, and we’ve begun taking baths in it.  It’s lovely, and I feel it calms us both.  I hold the bag open and she grabs a couple baby fistfuls and throws it in.  Its a wonderful way to prepare to go to sleep.

With the windy, blustery days and evenings, we’ve started lighting fires in our living room.  Adahlia comes running when she hears her dad open the stove to make a fire (even if I’ve already got her tucked in bed and she is about to fall asleep… sigh.)

She points to the fire and signs “water” — and I show her the sign for “fire.”  But I also tell her she’s right:  Fire is like water.  They are the same, but opposite, and they control each other.  They are both life-giving and life-taking.  They are gifts, and neither good nor bad, but worthy of respect.  Like many things in this world.

Adahlia helps me with the fire by removing the sticks of kindling one at a time from their bag and handing them to me. “Hot,” I tell her, regarding the stove. “No touch. Don’t touch.” But I know that like all of us, she will eventually learn the phenomenal power and pain of “hot” for herself through first-hand experience.

…. Just not today.

Adahlia loves helping.  She helps empty the dishwasher – meticulously handing me one spoon or fork at a time, holding it up and behind her, waiting for me to take it from her but not looking at me, her eyes still on all the silverware to be removed.  She also “washes” surfaces with a piece of cloth or tissue paper.  She likes to “help” with sorting clothes when I’m folding them, too.  And when we rake leaves, she helps by putting one leaf in the bag at a time… and then clapping. 

Sometimes, if we aren’t reading a book to her, Adahlia will read a book to herself.  She points at the pictures (the same things we point to, to draw her attention towards things happening in conjunction with the words we speak) and babbles in baby speak, “dah-dah-da-dah-dah…. bu-bu-bu.”. She flips the pages one by one, very purposefully. 

Currently, Adahlia’s only true words are “baby,” “dada”, “mama” (or “me-me”), and “ba-ba-ba” … which very clearly means banana, as it is said with great enthusiasm, gesticulation, and pulling at me, while passing the banana display in the grocery store.  (She wont eat bananas though.  Very finicky eater.  It’s tough.  Very tough, trying to feed her.)

Adahlia enjoys drinking the smoothies I blend for us in the afternoon, as well as the fresh carrot, beet, celery, and apple juice I make fresh every morning.  She is almost painfully adorable sipping our shared glass of juice through a straw – her hair pulled back, in an oversized sweatshirt. With her big eyes and pursed lips, its something from a more innocent era, like a 50s girl in a poodle skirt at a ice cream shoppe.

I’m very happy to say that her skin, which was getting very rough, like sandpaper, and was almost looking like eczema in spots, is entirely cleared up and is baby-smooth again.  I think it might have been due to the bubble bath we were using… It wasn’t anything special for babies, just something I’d been given as a gift for myself. But over the month we used it, I noticed she was getting a couple strange rough spots on her upper arms, about the size of a dime, and her skin began to get sand-papery, first starting along her sides and then spreading to her chest and back. It wasn’t red like a rash, but it was definitely like sand-paper to the touch. So, I traded my bubble bath in for some organic baby bubble bath (about time, really, considering how fastidious I have been with all her other organic products). I also began applying olive oil to her skin again – we weren’t really doing anything this summer, and then I was applying coconut oil for awhile, but really, her skin responds best to olive oil.  Its beautiful, really. Must be her Mediterranean blood. Honestly, I don’t know why people waste the money on lotion.

Speaking of ethnicity, Adahlia’s new favorite food these days is pasta – in any form. LOVES it. And a big chunk of crusty bread?  THRILLED.  Not the healthiest of fare, perhaps, but we take what we can get. (And she is eating other food, too.) Ever observant, Adahlia also now enjoys blowing on food to cool it off before she eats it. Last night, with her hitched up on my hip, I spooned out some Israeli couscous from the stove pot and let her taste test from the spoon. “Whheeew!” she blew, and we took turns blowing on it. Adorable.

Other cute things? Adahlia has decided to mooch my wardrobe. She likes to put on my shoes – she will wear them on her hands and walk around, or slide her feet into them and wave them around. She takes my scarf and wraps it around her. My head wrap goes around her neck and off and on again several times. She puts on my fingerless gloves and wears them while reading or playing with her wooden barn animal set.

She also picks out her own outfits now. I hold up a couple shirts and she selects them. I show her all of her pants, and she points to the ones she wants with a big smile. Her favorites? A pair of brown leggings with white polka dots and a lime-green shirt from Portland’s Japanese garden with an alphabet of bugs on the front and back. She has other outfits that she really likes, but that’s definitely amongst her favorites. She also picks out the necklace she wants to wear for the day, and her pajamas.

Its 11.18 tonight, and she looks really good right now, I think, for just about 4 weeks out from her last transfusion. Though it’s hard to say. This past month has been rough on her… on all of us. She got sick the day after her last transfusion and has been sick pretty much this whole month. It seemed to ease up last week, but just as it started to clear she caught something else. We’ve had a series of nights with very little sleep, as she can’t breathe thru her nose very well, and she’s not a mouth breather. It’s been about a week of very deep coughing and really icky, icky stuff coming out of her poor nose. She’s also cut her molars… A tough time, but at least now the worst of teething is behind us! With all the illness, I thought she looked pretty pale, pretty bad, for awhile. But now she’s coming out of it again, and I think she looks pretty good. Pretty good for four weeks. Dang good for having been sick this past month. It’ll be interesting to see what her numbers say.

I’m also doing better. A follow up test if my kidney function showed my creatinine and eGFR were improved. The nephrologist, of course, said we can’t read anything into it, that we need to see the trend over time. Apparently, I am showing some proteins in my urine, which indicates there’s some glomerular damage. But I feel ok about it. The pain is not nearly so bad. I am healing – albeit slowly- from this strange ordeal. Adahlia is too. Maybe it’s too soon to call it, but I think it will be one of those things where we will look back and say, “Oh yeah, that makes total sense, we really turned that around towards health! Thank goodness for integrative medicine!”

Truth is that our eyes are kind of in a misleading place. We just can’t see anything looking forward. It’s when we look back that we see how it all aligns. It’s when it’s the Fall, and we are looking back on our year, our toughest years, and we are so grateful, the most grateful, for them.

So, Adahlia’s 19th blood transfusion was last week. With so much going on, I simply haven’t had time to write about it. She went only 4 weeks this time between transfusions, which we expected, because she didn’t look as good sooner after the last one. (Part of that was due to teething.)

The long and short of it was that it was the BEST transfusion she’s ever had. To get the bad news out of the way, her reticulocyte count (baby RBCs) is still very low. It still hovers around 5, below normal, and well below its all-time high of 30+. I am not deterred, however. I still think we can beat this, and maybe, without needing steroids. I believe the counts will come back up.

The “good” news: One excellent IV stick – Hb of 7.3 – and we we got blood and left. We were in and out in about 7 hours, which is quick, believe it or not. Even better was that she fell asleep after the 15-minute vitals check after the transfusion began, and slept for about 2 of the 3-4 hours it takes to receive blood. When she awoke, we played with more toys, read more books, ate food, etc.

There was, actually, one thing that happened that could have been a major problem, but wasn’t. Shortly into her transfusion, the line came undone. I discovered it because I was lying with her on the bed, her arm over mine, the IV in her hand, and in the heart-stopping moment that she got up to peer through the divider at the kid in the next bay, I saw a spot of blood on my sleeve. And then on her leg. And then in the bed.

And then I realized she wasn’t attached to the line.

And that it had ended up under the organic blanket we brought from home, so her skin won’t be exposed to the harsh chemicals of the hospital linen, (she had a pretty rough skin reaction after her first 4-day stay in the hospital) and it was dropping slow little drips of blood onto the bed.

“Blood! Her line!” I said. Or something to that effect.

Joe jumped up to get the nurse while I switched the transfusion infusion to pause.

The nurse consulted with her boss, and they decided to clean the tip of the line with alcohol but to not flush and replace the line, because they didn’t think it was exposed very long and would likely not be contaminated, and really, well, they didn’t want to waste the blood. The bank had delivered exactly as much blood as she needed…

So the next day, when Adahlia spiked a 102 fever, I was a bit concerned. It went down though, to 99 by the late afternoon. She’s had a nasty cough since then, a night cough, but no further fever. After consulting with the nurse, we decided to just continue to keep watching it, as it is likely viral and will go away on its own.

And happily, yes, it does indeed, a week later, seem to be getting better.

Adahlia is amazing, wonderful, super, and more fantastic with every day that goes by. She can walk now, a tottering little walk with her arms held out like a cross between a tightrope walker and a t-Rex. She laughs a lot. Her favorite equipment at the playground is the see-saw. She was a lion for Halloween and so was I, and Joe dressed as a zookeeper.

…Fitting. 🙂

Adahlia loves the pumpkins we carved- a jack o lantern that she likes to point at, identifying his mouth, eyes, and nose. Our other carved pumpkin is of a Halloween cat, illuminated against a full moon. She points at it and says “cat” in sign language. In a few days, we will have to throw them out because they are starting to cave in and stink a bit. I’m actually considering getting a couple more and carving them for her.

Adahlia has molars coming in. Their ridges appear as beautiful little daggers pointing up from her pink gums.

Have you heard of Red Yarn? He is a local musician who sings children’s folk songs, does puppets… he is basically awesome. We took Adahlia to his CD release party and the concert was fantastic. I think it blew her away. She loves the music and now we play his CD all day long. When she wants to hear it, she grabs the CD cover and brings it to is, pointing at the stereo, and making earnest baby sounds. We turn it on, and she begins to sway and bounce.

… Sometimes, she insists we turn off the jazz station so she can hear her music. At any given moment of the day, I typically have a rotation of very catchy folk songs about animals stuck in my head. Luckily, they are fun songs. Frogs going courting, dogs named Blue, rabbits eating up gardens, and the like. The lyrics and instrumentation are really quite good. If they weren’t, it could be maddening. 🙂

Supplementing Adahlia with her vitamins, the ones she’s deficient in, has proved easier than it was at first. And I do notice improvements already. As I said, the majority of her deficiencies would qualify as antioxidants. She seems more relaxed, more energetic, more resilient, happier,
and she doesn’t pull and hit at her hair and head as much as she used to. Getting her nutrition optimized is part of my plan for helping her to kick DBA.

Oh I didn’t mention how amazing Adahlia was with the IV. She cried, yes, but as soon as it was in we sat her up, and as they were taping it down and flushing it with saline to make sure it would flow, I said:

“Adahlia, look, what is that? Is that water they are putting in your hand?”

And she immediately stopped crying, captivated, watching the “water” enter her hand.

… Amazing!

I also didn’t mention how she didn’t cry until we had positioned her on her back and were tying the tourniquet on her arm, and she knew the needle was coming… She didn’t cry as they as applied the warm compress to her hand and held it there to increase the size of her little veins… Nor did she cry when they put the tourniquet on the first time, to check for and find the best vein. And she didn’t cry at the end of the transfusion, when they removed the IV. She merely sat on my lap and watched them, very, very, closely.

And she made friends, during her transfusion, with the brother of a boy being treated for a brain tumor. She watched as we rolled a ball back and forth, laughing when he’d kick it or we’d head-butt it, and she even scooted forward and pushed the ball herself, after intercepting it.

… Amazing!

And for these reasons, and more…

(including how she waves at cars in parking lots, on the street, and everywhere we go, bringing smiles to the faces of strangers and friends alike)

… Adahlia is amazing!

Ps:

I want to thank those who read this blog to learn about Adahlia for putting up with the posts I write about myself. I do it because I’m pretty sure there’s a connection between our conditions, and because I don’t have a separate blog for myself, and because nearly every friend who asks about Adahlia also asks after my own health. People care. After all, I’m her mom and my health naturally impacts her health and happiness. My friends, of course, also simply want to know because they care about me, irrespective of anything else.

While there are always going to be naysayers, and folks who talk down or think the worst of others, there will also always be those eager to see the best and shining light in those they love.

So while every so often I do talk of my own journey, I hope you can see it is because Adahlia and I are still quite connected. And, if you are of the mind that we are all part of a universal consciousness, or one body in Christ, or whichever way you have of framing our interconnection of Spirit, then you understand.

I won’t go into the status of my own health right now, but I want to say that I’ve been guided to some phenomenal folks who’ve given me medicine, treatments, and wisdom I’ve incorporated into my own self healing practices, and the results have been phenomenal. I feel much, much, much better. In a couple days I will have more tests and we will know a bit more scientifically about what’s going in with me, and my trajectory, but for now, knowing only what I feel within me, I am grateful to know I am healing. The kidneys are the “deepest” organs and most difficult to treat in any medical tradition. And that is why any time they heal it is nothing short of miraculous.

Thank you to all who pray, send light, and love to Adahlia, myself, our little family, and to our entire, worldwide family.

We love you and are honored and glad to be here with you!

A reminder;

Around me flows love. This entire reality is built upon love. Love and energy are inseparable. We swim through a nourishing sea of love. Every breath we take is love. Every bite we chew is love. Every glass we drink is love.

Like a fish in the ocean, we are accustomed to our environment. To us, the water is thick. We feel the water. We no longer feel the air. But the air, too, is also thick. Thick with molecules and energy. Thick with love.

Each movement through this air is sacred. Each part of us is specifically and miraculously made to live here. There is no mistake. It is a perfect design.

No one can take this knowledge from you. You can forget it, but it cannot be taken.

There are three parts to us: animal (material), divine, and man, where they meet. All parts are sacred. All are worthy of love.

There are three aspects to our spirit. The part that will die upon our death, returning to the earth, associated with much of our identity and instincts, that naturally seeks to avoid its own death. The part that is associated with our soul, or higher self, that knows but is more than our identity, that is psychic and travels in dreams, that does not die upon bodily death and travels in astral planes, that is made of light, that goes to heaven according to religion, and this part is eternal. The third is beyond even this, and it is pure God light. It has no distinguishing characteristics but it is a thread of the Whole That Is. It is the frequency of highest, blinding, cleansing, mind-stopping, Love.

This is why we belong to God, why we are God, but we are not gods, why we are god-like, and create our lives, and manifest our will, but cannot rule over it. Why we are influenced by the forces of the seasons, the emotions, the currents of energy, and everything we see and hear and think consciously and unconsciously. We are animal, angel, and sparks of Itself. We exist in the balance of this triumvirate.

Celebrating ourselves, we celebrate God. Adoring ourselves, our entire complete nature, we adore God.

Be free to be yourself, and let others be their selves.

They are exploring their Nature, just like you.

In every action there can be consciousness. Where there is consciousness, love is experienced. And healing takes place. Healing is sometimes the same as cure, and sometimes healing happens even though there isn’t cure. (Think of those who die peacefully, gracefully, but also of when we must end a relationship and we do it harmoniously, for that is a sort of dying, a dying of the 3rd entity that is created whenever two minds come together, when it is simply the right thing to do, or the right time, or when it is in the best health of all parties. And remember that this does not actually die, no relationship can ever die, the threads cannot be severed, only woven into a different tapestry, so it grows more complex, but sometimes it is time for the physical interaction to stop, and for the relationship to go dormant, like a tree in the winter. Nurture the love between you and your dormant relationships. Heal those relationships with your forgiveness and gratitude and love, though you may never see them again and though they may have passed from life.)

For nothing truly dies. We exist in varying stages of life.

Death is an illusion.

Life is an illusion.

There is something more.

This is why mystics refer to our condition as being under a veil. We cannot see what that “more” is. We cannot grasp the totality of how this framework is constructed. We perceive aspects of it, and then try to explain it, try to fit our understandings into a schema… and that’s why all things reflect the same things. There are a billion different angles and avenues to approaching this prism. There are many perspectives. Synthesis of all perspectives creates something that cannot be named or explained or put into words.

Whether you accept, perceive, or believe it doesn’t change the fact that it exists, universally. These truths apply to all.

So, I had this big beautiful post I’ve been drafting and revising that talks of Adahlia’s nutrient deficiencies. We’ve recently had her tested in 2 different ways, and the results were very interesting. But now I can’t pull it up. The edits appear to be gone. It’s too bad. Perhaps I will write it out again at some point, but not now.

It should suffice to say that Adahlia is low in a few key antioxidants, like Vits A and E, which is interesting and supportive if the idea that there is a pathological process at play, attacking her cells. She is also borderline low in B vitamins, particularly B12 and B6. She is low in lysine, an amino acid, but not leucine, which is what some folks have had success supplementing DBA with to achieve remission and adequate RBC production.

We are giving her a multivitamin as well as a couple amino acids, etc. Interestingly, acetyl L- carnitine, the supplement for the lysine deficiency, is an antioxidant for the brain.

This is interesting because when I first took her to see my world-renown herbal professor, he said the worst thing she was suffering from, her weakest point, was the inflammation in her brain. News to us at the time… Though it made sense, given how much she had cried as a very small baby, the pulling at her head/hair, etc.

This is interesting because the Chinese herbal formula treats hidden pathogens (and autoimmune issues) that can attack and cause inflammation in the body, and the homeopathic treats inflammation (she no longer tested positive for needing that.)

So this all sounds good, right? We are treating her, making progress, right? So why the allusion to “dark night of the soul”?

Because I just found out that my kidney function has officially become “alarming.” I am being referred to a nephrologist. (Finally?) A 30 yr old woman should have a GFR of 90. Prior to pregnancy, in 2008, mine was 100. In 2010, it was 98. In Dec 2012, 6 months after giving birth and the onset of pain on both sides, it was 83. By April of 2013, it had dropped to 64. But because the standard for a “problem” is 60, no one was very concerned yet and I had my hands and mind full and didn’t catch it. They said not to worry; I said ok. I had stent(s) placed on the right kidney because the water backup there was an obvious problem. Nothing was done for left kidney. And now, my function is 57, and people are starting to be concerned.

And I read the results in the mail, and spent the next few hours quelling panic.

I don’t believe I have be mentioned that the results also show that my kidneys have atrophied. This is one step before renal failure. Kidneys don’t regrow. This is NOT a step in the direction of health.

And I am thinking all sorts of things.

Now, I’ve called my doctor and as I said, in supposed to see a nephrologist. But this is so serious. I have a baby whom I love. I am scared.

Years ago, I wouldn’t really have minded this as much. I have a confession. I must admit that at an acutely frustrating moment of my life, a few months or a year before I got pregnant, while living in my Sellwood house, I had a flash of “I will die when I’m 33. Don’t worry about it, relax.” And you know what? I relaxed. I remember this all so clearly, as well as the quick burst of fear that came later, followed by a wry smile, because such a thing was silly. At the time, I was in the shower. I’ve been trying not to think about it. (And I’ve also spent some time countering it with things like: “I am healthy. I will die when Im 99.” …I’m not yet sure anyone’s convinced.)

Of course, that little flash, whether it was something revealed to me or something I cursed myself with, was before I was pregnant. And having a child has really changed my zen perspective on death to one where I really want to stay.

I just can’t understand this whole thing. And so instead of posting something very cerebral, very promising, very intellectual, very respectable, very scientific, about all of Adahlia’s nutritional deficiencies and our current plan to correct them, I’m going to post my spiritual consternations, a declaration, a question, and if it sounds like hocus pocus, well, so be it.

But before I get started I will say that Im not sure why she’s deficient in anything, given our diet and the New Chapter prenatal vitamins I’ve been taking to give to her via breastmilk.

Unless, my kidney issues have compromised the quality of her milk. Or she has trouble absorbing certain nutrients. Or processing them. Or needs an extreme extra amount of them, such as those that are antioxidants, because she’s undergoing and hopefully clearing a toxic disease process.

…

I don’t understand why this is happening because I had given myself to God, to serve as He deems fit, before I got pregnant, and gave Adahlia to God when I was pregnant.

I don’t understand because while working at the detox center, pregnant, as an acupuncture intern, after placing the acupuncture needles, I used to meditate and do reiki on the baby in my belly and myself while those in detox sst and relaxed and let the needles do their thing. I was simply giving myself and the baby a reiki treatment, but it would shift the whole room. It was palpable. Sometimes the other acupuncturists could somehow tell it came from me and would thank me. Everyone left blissed out, a little high, what have you. It was sometimes extremely profound.

My teachers at the regular clinic could tell. They referred to my work not as energy work, like qigong, but as spiritual work. As spiritual medicine is the highest form in Chinese medicine, they respected it. It helped people. One professor even asked me why I was at school, told me I didn’t need to be there. Not everyone could tell, of course. Most of my peers couldn’t. But many of the teachers could. They, too, thanked me when I did what I do. It always surprised me when folks could see something that I was doing that I couldn’t even see, because my eyes were closed when I did it, and because all I was focused on was trying to relax, open, and let it flow through me. But they could see.

There was a time, in 2010, on a massage retreat, to learn thai massage and craniosacral therapy, a totally different group of people, when one girl, a fellow student, said, “I want to give you a massage,” and also grabbed the teacher to do a dual massage and assist her. I was profoundly touched that this particular girl, on this particular day, was so eager to offer me healing. Inwardly, almost without my deciding it, I decided, “I want to give her a gift.”

And I lay down, I closed my eyes, let go, felt something disintegrate and sparkle and flash. I heard: “whoooa” and looked up to see the girl leaning back from me, shielding her eyes.

I felt weak, but sat halfway up. It was the first time anyone had seen anything. “You saw something? What did you see?” I asked.

Still blinking she said, “uh, ye-ah, i saw something! bright light, rainbow, coming out of you!”

I smiled and lay back down. “It was a gift,” I said.

I could go on and on.

I have met God, by the way. How crazy is that? But true. I’m talking the real thing, too. I’m talking being flung forward on my knees, like in Child’s Pose, but my forehead pressed to the back of my palms, like how some religions do (Muslim?) , and I can’t lift my head. I can’t move. Everything is searingly bright.

And in that reality-shattering moment, what do you think flies through my mind?

“Holy SHIT, it’s God.”

I try to pick my head up, to get a look, but its as if there is a lead foot on the nape of my neck, pressing it firmly down. Try as I might, I cannot lift my head. And I do try. The image that comes to mind is that of a giant foot, in a sandal, like an angel pushing my head down (I realize now, it was for my own protection, isn’t there something about mortals not being able to look at God? Moses or something, in the bible….)

Anyway, I realize that this incredible presence is just waiting for me, like a swirling sun, and I realize that I must be silent to hear God, and after a great deal of effort, I calm my racing thoughts enough to telepathically ask one thing: Am I doing a good job?

And I wait. And open to listening.

The answer was a flooding, loving yes….

So what is this, God? Why? I have so much to offer. I know all sorts of different ways to help people, from the strange sort of spiritual, reiki work I do, to several different forms if qigong, to diet and nutrition… plus all the people I’ve helped simply by listening and creating the the space, with gentle direction, for them to find clarity and their own light and wisdom. Why are you pulling me out of the game early?

You gave me a baby, God. I wasn’t expecting that. But it’s been beautiful and I want to stay. I want to take care of her.

I want to start a clinic.

I want to write books.

But I gave my life to you. So its not about whet I want, right?

So now what?

What about the teacher who asked for a treatment and then when I agreed, took my hand and held it firmly over his heart and pressed it tightly, almost too tightly, kind of uncomfortably, and looked at me and said, “you have such good energy” and was so childlike, so desperate, I let him keep pressing it to his heart, and let it flow?

If I die, then what? What about Adahlia? Did you give her as a thank-you gift, as an experience to enrich my life, before taking me? Did she come here to collect me? Will you then take her too?

Forgive me if I sound melodramatic, dear reader, but I want to know.

And I realize that there are thousands of young, sick people out there, and that perhaps my self-concern is selfish, but this is my life, and my child’s, and one’s life is intensely personal… and I want the best for her…

And I realize that according to Disney, you can’t be a princess if you’ve still got your mom, but…

And I don’t think it counts, for being born a Buddha, if your mom dies within a year or two after your birth. Pretty sure it’s supposed to be in the act of labor.

What, God, is the point?

Is it because I started to share some of the things I experienced, and then became embarrassed, and deleted everything?

Did I screw something up? Am I doing something wrong?

Don’t you want me to stay here and help people?

If this is autoimmune, or some strange infection, can you please stop it while I still have my own kidneys?

I know, when I was super sick about 6 months post-partum, I was pained by the idea of not breastfeeding Adahlia, and begged for that. That time is nearly up. Though I am doing everything possible to keep it up, I feel like my milk is drying up. Sometimes, it feels like shes drawing my life out of me, not just milk. And Im running out of stuff to give. Perhaps I should stop breastfeeding. But how? She cries, she needs. I would give anything to her. And as God, you probably get real sick of people constantly asking for more, more, more… but that doesn’t change the fact that I want more.

I cry. I need.

I’m trying to trust you, I really am. But kidney damage is kind of irreversible, they say. We’ve done our best to trust this process this whole time. And things are getting kind of irreversible.

I really like hiking and playing on this this planet. I don’t want to be on dialysis. How does my demise help your plan?

If the good die young, why?

I’m trying to trust you, here, I really am.

Why is Adahlia sick? Why am I sick? If its not so that we can heal, and become a powerful testament to integrative medicine and help steer the tide of folks towards a natural, balanced, spiritual and healthy life, then why are we sick? I really thought I was supposed to figure this out. To heal us.

There’s still time.

But this is up to you. I mean, it has been from the jump, and these are your doctors, your herbs, your medical discovery and technologies, but I’m at a loss. The MDs tell me to stop the Chinese herbs, they think they are aggravating my kidneys. The chinese herbal perspective of course, says just the opposite: that the herbs are fighting (helping to flush out and heal) the autoimmune or pathogenic process. If I stop them, I might go downhill fast.

What to believe? What to do?

I think I am going to stop the herbs a bit, just for awhile, just to see if I feel better or worse.

Of course, its not about right or wrong action. Whether this ends “well” or not. And as Ive said so many times before, whether something is “good” or “bad” depends on where you stop the action. A major car accident causing severe injuries? Bad. Until your doctor turns out to be the love of your life, then its not just Good, its the Best thing that ever happened to you. Until, 5 years layer, he or she then breaks your heart, then its the Worst. But then you go on vacation and have a revelation and find new purpose and direction for your life, and suddenly, again, the car was a Good thing after all.

See? It’s pointless. It’s about having too small a perspective. Its about an illusion of polarity, same that its an illusion that we have any control over these matters at all. If we heal, its because are led to the right doctors, the right therapies. If we aren’t meant to heal, nothing we do will be enough.

You’re in control. It’s your show.

Which reminds me. About that time. About another, different time. About that time when my throat closed and heart started pounding and I panicked and started to run, stumbled and fell, and suddenly I wasn’t in the hallway of my apartment anymore. I was surrounded by stars. I saw nebula and vast, endless expanse. And I saw a lattice, several, or dozens, globes of glowing green lattice set against the inky void, glowing and spinning, the energetic blueprint of hundreds of worlds turning, each dependent upon the other, layers of worlds, green, the color of the heart energy, green, the color that spread over my entire field of vision that time I spoke to inspire and the words that came flooding out were not my own, not my thoughts, all I could see or think was green, and after a moment’s panic I relaxed and let them flow off my tongue, realizing they were yours… turning, these worlds, with their green energy lattices, so beautiful, so perfectly orchestrated, spinning in the starlight, just for us, made for us, for all the countless billions of us, the trillions of kinds of us, so we can learn, so we can play, so we can grow… worlds upon worlds… endless, beautiful, symphony.

And tears flowed down my face, ran rivers down my cheeks, as I knelt there, weeping for the beauty, awash in gratitude, on the carpet in the hallway of Apartment 33.

… That was the sign posted on the captain’s door of the private jet hired by a top-earning DJ in Vegas in a story in the most recent edition of the New Yorker. A big spender but deep thinker, he commented that its actually a profound life message.

I agree.

And we’ve had plenty to ponder about slides these days.

Before the recent storms and rains hit, Adahlia and I, or Joe and Adahlia, or the three of us, used to go to one of the parks nearby nearly every day. Adahlia loved riding down the slide on my lap. Well, a couple weeks ago, two days after my surgery and with the fall winds blowing, we decide to go to the park. I was too weak to do much, but Joe held her steady and walked along the slide as she went down, solo, for the first time. I started to feel a bit left out, and being unable to play and enjoy Adahlia due to days when I feel too sick has been hard for me to accept at times. So, I tell Joe I want to slide down with her. It’s the first time she’s worn her new boots to the playground.

They are actually just new-to-us: a pair of brown, below-the-knee boots bought last year from a kids resale boutique. I bought them when she was barely sitting upright and before I understood anything about kids shoe sizes. (I thought, hmm… these kind of seem like they work” and at home, in a moment of clarity, I realized they were so clunky and heavy that she couldnt lift her foot. Into the closet they went. But, they fit her now! And they are her favorite outdoor shoes.

On that fateful day, we positioned ourselves at the top of the slide, and she was safely tucked on top of my legs on my lap. But as we come down wooshing down the slide, she throws her leg out from where I’ve nestled it between mine, and the rubber sole catches to the side of the slide like money thrown to the top of Kell’s Irish Pub downtown. Her foot stops. The problem is, we keep going.

Joe hears a pop but I don’t. Either way, her leg got torqued in a way that Joe describes as being impossible for an adult not to suffer serious damage (“thank goodness she’s so flexible!” He says.). Except whatever happened is beyond the miracle of Baby Flexibility. She starts howling as I lift her up off the slide, and when we get to the grass, she can’t stand. Won’t put any weight on it. We begin to fret around her like two wild animals with a lame baby.

Long story somewhat shorter, the pediatrician at Urgent Care tells us that it happens all the time: parents think they are being both cautious and fun-loving by going down the slide with their toddler, but its that weight of the parent that ends up snapping the bone. (By herself, a child would just stop if her shoe got caught.)

X-rays at the ER don’t show a fracture, but the pediatrician is adamant: a toddlers fracture doesn’t always show, and a toddlers bones will break before they’ll suffer a sprain or ligament damage, due to their flexibility. There is no or minimal swelling, and it has a decent range of motion, but she refuses to let us touch it.

Imagine how I felt. Over three weeks since transfusion, so she’s low on blood, and she’s standing but still hasn’t figured out walking yet, and I go and break her leg on a slide.

At this point, I am thinking about how every thing I would have not wanted for a child to experience in her first years of life, so as to grow up with a positive outlook on life, and feel safe, and cared for, has happened.

I’d like to say that I didn’t beat myself up over it, but I did.

I also did everything I could think of to try to heal it. When homeopathic arnica didn’t work, I tried bellis perennis and finally ruta graveolens (the last of which may have helped, so I used it in again on the following day.) We used fish oils to help with inflammation and I also gave her a dose of tumeric. To help the bones or ligaments to heal, I applied Zheng Gu Shui, a topical spray that roughly translates to “Righteous Bone Water” three times a day. I gave her reiki daily. We wrapped her leg in an ace bandage and waited.

The pediatrician told us shed call again in a day or two and that we could expect referral to an kids orthopedic specialist on Monday.

And Adahlia was due to get her blood tested with a possible transfusion on Weds.

Great.

The Slide Incident, as I like to refer to it, happened on Friday. The next day, she put weight on it once, made a face, began to cry, and held her leg off the ground like a little wounded deer. We did our best to keep her from trying to stand… or crawl. Though I was still in pain and exhausted from surgery, I carried her a lot. She was inconsolable. She’d wake up, roll over, and start crying. Everyone was miserable.

The day after, Sunday, she stood, (she is very strong-willed), tried to bounce in time to music, and began to cry. But she could crawl by pushing off her good leg and dragging the injured one along. We took it as a positive sign and reported it to the pediatrician when she called. The pediatrician was dubious and sounded almost disappointed (understandable, because its a rare experts on anything who is okay with being wrong) and warned me that it was still probably broken.

But the next day, Monday, Adahlia stood on it several times, very cautiously. She didn’t try to move much (or “cruise” because she doesnt free-walk yet, she just holds onto stuff.) But she could stand.

And then the next day, she was “cruising” fine.

So, either the therapies worked (I do think the ZGS spray had a lot to do with it) or the bone didn’t break after all, which, if that is the case, I believe we owe to her tall boots, which provided some stability to the bone, even as its rubber sole stuck to the slide.

The moral to loving parents everywhere is that if you go down the slide with your toddler, take off the shoes and go down with them in socks!

When your kid has a blood disorder, you’re depleted because your health isn’t so hot either (or maybe its just from caring for your baby), and things are tricky at best financially, the idea of “Don’t push, Slide” becomes even more paramount.

Adahlia and I got a real bad, supper-stuffy, sore-throat cold on top of everything, just days after the Slide Incident. It was tough, but it also meant that we took time to make a really, really good chicken stock and chicken soup (Low blood, broken leg, and a stuffy nose — a triple whammy for that last week prior to transfusion, poor baby). We even used chicken feet in the stock — excellent for vitamins, minerals, and bone-and-ligament health! Recipe follows courtesy of Sally Fallon’s article,
Broth is Beautiful:

• 1 whole free-range chicken or 2-3 lbs of bony chicken parts, such as necks, backs, wings, and breastbones
• gizzards from one chicken (optional, but do it if you can!)
• 2-4 chicken feet (optional, but do it if you can find them!)
• 4 quarts cold filtered water
• 2 tablespoons vinegar (I used apple cider vinegar)
• 1 lg onion, chopped
• 2 carrots, chopped
• 3 celery stalks, chopped
• 1 bunch parsley

I also added 3 cloves of chopped garlic

Combine everything in a big soup pot except the parsley. Let it sit for 30-60 minutes. Heat it slowly and bring to a boil, removing scum that rises to the surface. Reduce heat, cover, and simmer 6-8 hrs. The longer it cooks, the richer it will be. About 10 minutes before you’re done, add the parsley. Strain and reserve in fridge until fat rises and congeals. Skim the fat and store in covered containers in the fridge for up to a week, and a year in the freezer.

I also like to cut the chicken bones into pieces to let the marrow out. (If your parts are too hard or frozen, simply cut them after they’ve simmered a few hours and are soft.)

Now you have a soup stock rich in vitamins, minerals, nutrients, and all the good stuff that you’d have to pay hundreds of dollars to find in supplements. Enjoy!

Love light to you and yours. And if things get rough or don’t go your way (or even if they start looking really bad!) remember:

“Don’t Push, Slide.”

Lov,e

Today, Adahlia received her 18th blood transfusion.

As far as time goes, the day was one of our worst, but as far as events go, it was perhaps one of our best. The time delay was due to a problem at the blood bank. It took them 5 hrs to deliver the blood after it was ordered, and since transfusions take about 4 hrs, we didn’t leave the hospital until 7:30 pm. Apparently, the first batch of blood had something wrong with it — it started clotting, or reacted with her blood sample, and they tried to fix it (?) but couldn’t. (The nurse wasn’t sure what had actually happened so her explanation was unclear.) Bottom line was that they had to start over after about 3 hours with a new batch of blood.

Contrary to what you might expect, what I learned from the experience has actually made me more confident in the transfusion process. Not only does the blood bank screen to match blood type, check for antibodies, viruses, and diseases, and irradiate the blood (to kill undiscovered pathogens and donor white cells, which could cause problems in her blood stream), they also actually mix a little of the donor blood with a sample of her blood to see what happens. If there is no reaction, excellent. If there is a reaction – antibody, clotting or otherwise – the transfusion is halted and they find a different donor.

This whole time, I thought that it was all a matter of checking each blood sample separately. You know, matching type O to O and doing separate screens for antibodies and viruses. I didn’t know they took the extra step of actually combining samples of the blood to check for compatability. Apparently, they do this – as well as the irradiation of donor blood – on a routine basis for all kiddos. (Adults don’t routinely get such deluxe treatment.)

Today’s IV was placed with just one poke, and Adahlia screamed and sobbed and struggled, but the tech did an excellent job and I was grateful for his steady hand and keen eye. Over the many hours that followed, Adahlia did remarkably, incredibly well. We read books, looked at plants in the attached outdoor garden, did laps through the halls, lounged around on her bed with her, and played with various toys. Not once did we let her crawl – we couldn’t, because of the IV in her hand and the armboard holding her wrist in line with her forearm. (If and when she bent her wrist it would occlude the IV.) Since shes not walking yet, no crawling basically meant she spent the whole day being held all day in a bed or in our arms. For her to be okay with that was no small miracle… and she really was okay with it. When it finally came time to remove the IV, she did not whimper or so much as give a peep of protest. She just sat on my lap and let me hold her arm out, watching the nurse peel back the layers of tape and remove the tube. She was ready to be done I suppose – but it was remarkable, even to the nurse, and quite a relief.

Perhaps my favorite moment was when Joe was carrying Adahlia while pushing her IV stand, and I was chasing them, growling and reaching like a tiger, and she was filling the whole hematology/oncology ward with laughter and delighted shrieks. Or maybe it was after reading her beautifully illustrated Animal ABC book together, when she kept cuddling up and collapsing into me, kissing me and touching her forehead to mine, rubbing her head against mine, like an affectionate house cat. It’s hard to say.

As expected, the doctors talked to us about steroids again, but I told them that we are simply not ready yet. First, because she just started her vaccines, and I don’t want to do them simultaneously. Second, because we are only willing to put her through the ordeal of steroids and all their potential physical-mental-emotional-cognitive side effects if it is her best chance at health and if the timing is right.

Today marked the 5th week since her last transfusion, with a Hb of 7.3 at the time of transfusion. It seems she is trending towards 5 weeks between transfusions now, instead of 4.

DBA is not a matter of simple genetics, if such a thing exists. You can have the gene(s) associated with DBA and express no symptoms. You can have full-blown DBA and have no genetic mutation.

That means there’s something else – or a lack of something else – triggering it. Like a cofactor. Or a hormone. Or a pathogen or toxin. Maybe its a combination, a perfect storm sort of situation. There are many reasons why a complex system, like bone marrow, might not be getting the proper signal to make adequate RBCs. Despite all our incredible medical advances, no one actually understands the complexities of genetic expression and intercellular communication.

What is known? Steroids help kids make an adequate number of their own RBCs so that they no longer need regular blood transfusions in 80% of cases. (Although no one knows why, because technically, if DBA is a genetic disease, steroids shouldn’t be able to make a difference.) Steroids are like hormones and hormones are like steroids. The preponderance of kids who experience a spontaneous remission from DBA are boys going through puberty. There are many plant, animal, and mineral herbal compounds that can act like steroids or have steroidal properties, and do not carry the mental-emotional, cognitive, and growth impairment risks of pharmaceutical steroids. Yet, an herbal approach is not without risk. The wrong herbal supplements (or the wrong dose) can actually worsen DBA (shortening the time between transfusions).

To my knowledge, we are the first to try to use Chinese herbal medicine for a child with DBA in an educated, controlled, and scientific manner based on traditional, classical chinese theory, while also testing the herbs every 4-6 weeks to make sure they are the right match to Adahlia’s current condition before we administer them (much like testing the donor blood to the recipient blood before transfusing).

I dont know if the Chinese herbs have the capability of healing a genetic disorder. I do know that Adahlia is an incredibly and increasingly bright, active, happy, and healthy child even when she is anemic, and that she is one of very few kids with transfusion-dependent DBA who can go 5 weeks between transfusions.

I think the Chinese herbs might be at play, here. I think we are not yet ready to gamble with steroids yet. I think we are on to something.

Adahlia is a mysterious creature.

This morning, while putting various items away, I set our brown Gemini baby carrier on the ground. It’s a fantastic device that can be worn to carry a baby facing you, facing out, on your hip, or on your back like a backpack. I haven’t worn her in it in awhile, opting for the 20 lb arm workout instead of carrying her. Well, she crawled over and held it up with a big smile on her face. Naturally, I put if on, slid her in to face me, and she folded into me, resting her head on me, wrapping her arms around me. Magic.

On our short, slow walk to the park, downhill (joe met us there to carry her back for me), I noticed how pale she looked. It’s funny, her complexion. Even after a transfusion, she just doesn’t have the flush to her cheeks and skin that most of us have. There’s a quality of emptiness, or something of an ethereal nature. Like she’s not quite fully here.

Because, well, in a way, she isn’t. She isn’t quite as tethered to her body as we are.

In so many traditions, particularly ancient Chinese, the blood carries the spirit. Think of “blood brothers” in various cultures and “blood branching” in certain military circles and the numbers of people who faint at the sight of blood, our obsession and fascination with vampires, and the various religious groups that forbid blood transfusion and you begin to realize that this isn’t some sort peculiarity. Yes, if you lose too much of it you die, but it is more than that. With all our understandings of molecules and chemistry, we cannot create synthetic blood in a lab. When we pledge allegiance, we describe “bleeding” a certain color or colors. There is something undeniably special, something “you” about your blood.

There are people who receive organ transplant who describe the sudden onset of strange dreams, or visions, that seem to be from a life they’ve never lived. They sometimes even describe new affinities, new feelings.

Later tonight, Adahlia looked great. Rosy cheeks, rosy lips, flushed skin.
Not doing so hot myself, and thinking longingly of the days when I could just run a bath for myself and lie in it, I decided to run an experiment. I discovered that a nearly 14-month baby will let you lie down in a bath. In fact, she’ll love it. Simply lay back, placing said baby on your lower belly, astride and facing you. Reach over for the foaming, organic baby soap and squirt some on your belly, on the nearest bath toy, and on her fingers. She will happily play and wash your belly, and her belly, for at least a solid 15 minutes. You just have to keep the soap coming. And if you’ve never had the pleasure of having your baby return the favor of washing you, I learned it’s just as precious as having her feed you!

And speaking of feeding, Adahlia fed our not-quite-tame, not-quite-wild squirrel friend today. She has been crawling up to me occasionally over the last couple of days with her stuffed squirrel in hand, showing it to me and pointing at the sliding glass door. I explain that we can’t make the squirrel come on demand, that she’s her own squirrel. And it had been weeks since we’d seen her.

Well, wouldn’t you know it but she showed up today. Adahlia has watched me hand-feed her peanuts at various points throughout the summer. The sighting of this squirrel never fails to elicit a series of excited chirping and pointing from Adahlia. I put the peanut in her fingers, and, braving both the horror of concerned mothers everywhere and child services, told her to hold it out, and held her hand as she did so (just in case, and more to protect the squirrel than to protect Adahlia.)

The squirrel was none to pleased to be being fed by a child whose energy was the equivalent of pent-up firecrackers, roller coasters, and whirligigs, but she did her part. She came forward, gently took the peanut, and raced away to bury it. We repeated the event several times, closing the slider to await her return while Adahlia sat on watch, the next peanut ready in her grasp. Adahlia even got to the point where she helped slide the door shut after the squirrel scampered off. Very cute.

Since I’m being long winded, I might as well say that I’ve been to the ER twice now in the last 2 weeks, and to several subsequent appts. In the 10 days between those ER visits, the hydronephrosis in my right kidney increased from moderate to just shy of severe. In addition, my left kidney is showing mild hydro again. (I feel pain it in fairly consistently but it only occasionally has water on it.)

So I am slated for surgery in 10 days again. I’m not super jazzed about going back into the OR, but Id also like to save what remains of my right kidney function, which took a blow from the previous episode. I’m pretty confident in natural medicines ability to improve the function of any remaining nephrons, but I need to get the thing drained before I can think about clarifying and tonifying it.

The doctors’ theory is that I have a blood vessel, a vein or an artery, crossing my right ureter that will probably, eventually, need removed and reattached in a better position. Because of pregnancy and breastfeeding, my hormones have relaxed my ureters and are allowing urine to build up in the kidneys. This is fairly normal to a very mild extent, but the swelling pushes the ureter against the suspected (not yet confirmed) crossing vessel on the right side, making drainage into a big problem.

Hence, right now, they are not worried about the left, but are rather willing to do some cut-and-paste work on the right. We compromised on a more conservative plan to have another stent placed (or as many as necessary, because they need replaced every so often) to drain and save the nephrons now. Perhaps, when I am done breastfeeding Adahlia, this won’t be a problem anymore. If it is, then we do the surgery.

Perhaps its crazy, because I am effectively electing to have multiple instead of one more surgery, but I’m just not willing to stop breastfeeding to see if that solves the problem. If possible, I want to keep breastfeeding through April, or the next cold and flu season. It’s important for healthy children, and I feel it might be vital to Adahlia. I’m also not willing to have the extended hospital stay, recovery time, and possible complications of a more major surgery right now. Adahlia still needs me too much. But, things change. We will see.

In the meantime, I’m trying the pregnancy regime that I did when i didn’t “know” it was kidney pain, which is lots of localized heat via a hearing pad at night, and swimming in a pool during the day. Back then, I think the motion and heat helped open and move fluid. It is my hope that it will take some pressure off the cells until the surgeon puts another stent in. Because its not the water that kills the nephrons, its the pressure of the water on the cells over time.

Anyway, back to Adahlia.

I wonder sometimes, about her need for transfusions. She hasn’t healed herself spontaneously yet, nor fully responded to the chinese herbal therapy. We have yet to get her nutritional panel complete and see if specific vitamin, amino acid, or cofactor supplementation might work, though that’s a near-term goal (once I get the water off my kidney and start feeling better.)

It may be that it is her destiny to receive many blood transfusions for many years.

If blood carries the spirit, then she is receiving into herself the experiences and feelings and “spirit” of hundreds of different people.

What kind of person emerges from being the recipient of so much human experience?

Amazing. Transformative.

Love and blessings to Adahlia and to you.

And in thanksgiving for this beautiful body, and beautiful, interesting, life.