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.

“You are free to smile in the midst of massive tests and challenges, knowing that you have chosen to play this game, and that you have dominion over all the appearances of earth.” ~Richard Bach, Messiah’s Handbook

Last Thursday, Adahlia received her 17th blood transfusion.

It was a memorable one.  We arrived at the hospital on Wednesday.  There were new lab techs, due to complete turnover in the phlebotomy lab. (Our favorite phlebotomists have mysteriously quit!  It is a huge loss. Those ladies were Jedis with needles… sometimes when they stuck her, Adahlia didn’t even cry.  They were with Adahlia since she was just 7 weeks old, and watched her grow, and gave her presents, and loved her.   And so, Dorenbecher phlebotomists… where ever you are… we love you & wish you best of luck!)

Anyway, long story short, necessary labs weren’t ordered, the stick was terrible, and the IV tech then failed – twice – to get an IV in.  In her defense, poor Adahlia was a bit dehydrated.  She had vomited twice the night before, which was a new event for her.  She very rarely spat up as a baby, and this was the sort of “I’m-clearing-everything-out-of-my-stomach” projectile event that speaks to food poisoning, or viral bug, or something else that leaves us grown-ups curled at the base of the toilet, moaning, for the duration of the night.  As we cleaned her and the bed up the second time, she simply passed out in my arms, limp.

For the next couple of days, she had extremely foul-smelling watery stools.  So, on Thursday, in addition to her blood, she also got some fluids and a stool test for bacteria.  Her GI distress was a big factor in why we left the hospital Wednesday, and chose to come back on Thursday for the forgotten blood test and transfusion.  Luckily, the IV tech on Thursday was a champion, quick-sticker, but he had to do it in the top of her hand (the back of her hand) because of the needle sticks in her arm on the day prior, and, if you’ve ever had an IV in your hand, you know it is rather painful.  It goes without saying that it is so, so, tough to have to help hold your baby down while she screams, cries, and murmurs, as Adahlia does, to the heavens for help, and it took the tech a long time to tape the IV down and wrap securely.  It was hard work and I am glad I was able to be present with her through it, to hold the space for her and offer her comfort.

After her IV was placed, we waited for two hours for the blood, and then, when it arrived, the nurse informed us that the Red Cross had sent expired blood.  Unusable.  So they had to order new blood.  It made for a long, long day, but I was very glad that they caught their mistake before administering expired blood to her.

Happily, after the IV was placed and despite the length of our stay, it was one of the smoothest transfusion days we’ve ever had.  Adahlia and I read books, went on walks in the garden, and played with blocks.  It was also our very first transfusion without Joe with us.  He has been phenomenally dedicated to her, and it upset him not to be able to support us this time.  We missed him, and we managed fine, and she was very happy to come home that evening.

I also met my first, and only other, DBA family that I know of in Portland. (!)  Steroids did not work for their 18 month old baby… meaning that they did not help her make her own blood.  They did, however, make her face swell, and they made her extremely irritable for the duration of the trial.  Luckily, they did not do any apparent lasting damage.

I am not willing to try steroids… yet.  This year, I have plans to start her immunizations.  I don’t wish to do them at the same time, as I feel it would overload her body too much.  I am also still of the belief that it may be possible to get her body to make its own red blood cells using chinese herbs.  First, we have to finish taking the “clearing” herbs that her body is reacting to, saying it needs.  Then, we can try the “building” herbs, to help it make its own blood.

Adahlia only went 4 weeks since her last transfusion, instead of 5.  There are many reasons why this could have happened.  It could be that the amazing gift of the days we spent in Hawaii – in the sun, heat, and salt water – were extremely beneficial to her.  It could be that there is something toxic in our house that she and I are sensitive to, which we weren’t exposed to while we were away, and we did spend a lot of time outdoors.  It could be that chlorophyll is too much for her system, and not beneficial to her. (We were taking a break from it the entire time that she went 5 weeks between transfusions, but had resumed it the first 2 weeks of this past period.  When then stopped using it because it appeared to me that she was looking pale and sickly rather quickly, and I wondered if it was due to the chlorophyll.)  And, it could simply be that the transfused blood was older, closer to its expiration date, and older blood cells wear out and die quicker.   It is, unfortunately, impossible to know at this point.

But, out of caution, we have decided to stay away from the chlorophyll for right now, which we were primarily doing as adjunct therapy to help her body eliminate iron, anyway.  This month, then, we are only doing the chinese herbs and liquid fish oil as supplementation.  Her iron is still fairly low, at only 536.  I do not know if the chinese herbs are helping to keep her iron down, or if her body is just very efficient at eliminating it.  But, so far, we are not in need of iron chelation, which is good.  She did show elevated liver enzymes, which could speak to liver damage from iron overload, but could also have been due to the potential gut infection wrecking havoc on her digestion.  So, we are also doing some infant probiotics to help with her digestion.

As far as my health is concerned, we don’t know what’s going on with my kidney.  It feels much better than it did when I was in the ER 9 days ago, but I would be lying if I said there wasn’t a sensation of dull ache and heaviness in it at times.  I did adjust my own herbal formula with the hopes of helping it to drain.  There are times it feels fine and times it feels like there is fluid in it.  If it doesn’t drain out by the ultrasound scheduled this week, I will need at least one, if not a two-step, surgery to address the cause of the obstruction.  I truly hope it doesn’t come to that, because surgery affects my ability to care for Adahlia, as well as the rest of my life.  But, though I can do my best with herbs, mild exercise, and reiki, the situation (like all of life, for all of us, truly) is entirely outside of my control.  We do what we must, and, if we are wise, we find enjoyment and love in it.

I am very happy to let concerned friends know that both sets of Adahlia’s grandparents stepped forward in a huge way to help us out financially.  We will be able to remain stable, in this house, through December, which is important if I will be needing surgery soon.  We do still hope to move as soon as we are able, because the rent on this house is simply too high.  (And there is that possibility of there being something toxic in the environment, which isn’t a very likely possibility at this point, but still remains.)

Adahlia does love this house, though, and I’m so happy she’s been able to enjoy it.  Just today, she pointed at a murder of crows flying past the large picture window, saying, “bu!  bu!” as they flew overhead.   Over the last few weeks, we’ve enjoyed picking figs from the large fig tree in the backyard.  Carried in my arms, she points to the tree to let me know she wants to pick figs, and we look up into the branches and see what we can find.  The season is pretty much over, now, but it was wonderful – and delicious! – while it lasted.

Adahlia has been in an incredible mood for the last several days – she wakes up super happy.  Even when she was low in blood, on the morning of her transfusion and after vomiting in the night, she woke up smiling and eager to play.  She “talks” to me until I wake up, sticking her face into mine, like a cat, prodding me gently, pointing at the paintings on the wall and “telling” me about them, crawling around in circles, and then pointing at the windows, as if telling me that the sun is up and its time to get up.  I adore sleeping with her.  Even when she puked, I was glad we co-sleep, because she was so scared by what was happening to her, and I was so glad I could be right there when she was choking and going through it.   Its so wonderful when she rolls towards me and cuddles under my arm, to be able to kiss her head when she starts to cry out while having a dream, and so amusing when she flings herself across the bed, and turns herself in circles.

Co-sleeping is, in a word: awesome.  Highly, highly recommended!

Adahlia LOVES books.  All day long, we read books.  She points to animals and kisses her favorites.  She holds her hand up to say goodbye to Mama Llama after Mama Lama tucks Llama Llama Red Pajama in for the night.  Her favorite book these days is Lion & Mouse, an illustrated book by Jerry Pickney that has no words, only gorgeous illustrations.  She has taken to “reading” it and other books to me, pointing at various animals and actions on the pages and authoritatively saying:  “bu.  bah.  beh.”  as she turns the pages.

She waves at passing cars when we’re out and grins and bounces when I dance with her or sing for her.  She has figured out how to put her feet into her pants and pull her pants up to her knees.  She also can get a sock halfway onto her right foot (the left foot is tricky!)  She “talks” to us all the time, eats finger food, follows us when we crawl in front of her, and tries to get us to chase her.  She understands when I tell her that we are going home, or going to take a bath.  She can put the circle and octagon into their correct places on her puzzle board and happily pounded away on her xylophone the other day.  It was the first time that she purposefully struck it in a coordinated way, and seemed to be enjoying the music she was making.

When we see a dog, she points and barks, saying: “arr!-arr!”  (She knows this is the sound dogs make because I say the name of the animal and also make the sound when I read a certain animal book to her.)   She LOVES petting dogs.  Yesterday, together, we hand-fed the squirrel that comes onto our back porch to beg for peanuts.  She understands the word “squirrel” and looks to the sliding back door when I say it.  She lifts her hand in “hello” to people wherever we go and observes them carefully, looking them up and down, from head to shoes and back again, as though taking in their outfits.

Sometimes, she will poke a person she finds extraordinarily delightful on the tip of their nose.  She gets very, very frustrated when she cannot master something quickly, and gets even more frustrated if we try to help her when she’s trying to do something herself.  She refuses to eat baby (pureed) foods, preferring to try anything that we are eating, even if she can’t eat it due to a lack of teeth, and can only suck on it.  (She has 6 amazing teeth now.  Her smile is brilliant.)

She still loves hiding behind curtains and under blankets, and giggles and shrieks with joy when I act like I cannot find her, and when I sniff loudly around her, as if I am a wild animal looking for her.  She makes a little howl like a wolf (“arrroooo”) when she sees pictures of wolves or wolf cubs and when we play with her wolf stuffed animals.  She will crawl over to us with books she wants us to read, or stuffed animals she wants us to kiss and animate for her.  (She has quite the collection between my old stuffed animals, her new stuffed animals, gifts from relatives, and gifts from various hospital visits.)

Adahlia loves cuddling and swinging and spinning and be carried and well, doing just about anything that we are doing.  She is absolutely, insanely beautiful and the most wonder-filled, curious, and attentive individual I’ve ever met.

Tonight, in the bath tub, was the first night I could tell that she was really having fun with the foaming, organic baby soap.  We squirted it on her plastic toy animals and she examined its consistency between her fingers.  She rubbed it between her hands and washed it away, and held out her fingers for me to squirt more onto her hand.  Sitting between my legs, she smoothed layer after layer of foam onto my right leg in happy, circular patterns … and surely, my kneecap has never been cleaner!

Also, today, a huge milestone.  We were brushing our teeth together – I was sitting on the floor, and she was standing, holding onto a pull-out bathroom drawer.  She let go, and stood.  She bounced slightly a few times, almost like how a diver bounces before his big leap into the air.  Then she took a small, but distinct step forward, barely lifting her foot off the ground.  It was almost like a shuffle-step, the bottom of her foot grazing the top of the rug.  She did it again, with the other leg.  Then she stepped forward a third time, reaching for my shoulder, and grabbed on.  Her first steps!  They were truly shuffling, baby steps; she has taken larger, more “distinct” steps while holding onto something for support, but they were, in fact, her first true, free-standing steps.  Hooray, Adahlia!!!

Its been a busy time.

Its also been an incredible few weeks of reconnection with myself, my strength, peace, and joy.  Doing reiki with myself and Adahlia, things shift, open, and are filled with light.  As always, we never know what is around the bend, and there is a lot of uncertainty, pain, and stress.  Yet, we have found ways to thrive in it, the sadness and grief and fear are replaced with joy and contentment, regardless of health, finances, and hopes.  We are getting better every day at making the most of each moment.  We are so blessed to be here.  Our lives are the opportunity of a lifetime.

How would the world change if everyone lived with the knowledge that they are capable of filling themselves with light?  If they were empowered with the knowledge that they can use that light to heal themselves?  If they then carried it forward, and, like Adahlia, shared it with others, whether or not they were looking, and whether or not they responded, through their open palm?

What does it mean to heal?  Can one heal oneself and still have a life-threatening condition, or die?  If so, why?  How, then, does that change how we live?

Thank you for being with us in this journey, and supporting Adahlia and our family in your hearts, thoughts, and prayers.

Love and light.

This past Weds, the stent placed to drain my kidney was removed. It was not fun, but it was a fairly quick procedure and I was glad to be rid of it. The ultrasound had showed that my kidney was no longer swollen with water, and had drained to a more normal size. The tissue didn’t look as healthy, and my left kidney was enlarged, so there was thought to be some compensation, where the left kidney has to take over more duties since the right wasn’t working as well.

You could hardly blame it. It had been compressed due to water pressure since my 3rd trimester, or April of 2012. Over a year. It’s not the most ideal conditions for cellular health.

But then, last night, the low, pressing, aching pain that mounted quickly in intensity. The familiar reach around my entire back, side, and front, as though there was a mass growing inside me. Pain grew unbearable. We went to the ER- all 3 of us. Morphine. Anti-spasm medication. The ultrasound techs wouldn’t be back until the morning, so we told we could leave and come back first thing in the morning. At midnight, we headed home to get some sleep.

Back here at 645 with a very tired baby, mama and dad. Pain no longer excruciating, just a uncomfortable, thick, throbbing, but I guess that’s just because I adapted to it (what else can one do?) because my body decided to vomit. There was no other reason for me to be sick, so it must have been pain that Im just no longer sensing.

The ultrasound shows that the hydronephrosis is back.

This likely means another surgery, this time they will have to cut and remove and reattach whatever vessel is obstructing my kidney’s drainage. (That’s the theory anyway, that there is a crossing vessel, that somehow something happened while everything shifted when I was pregnant.)

In the meantime, they will probably place another stent. This is desirable because I want to save as much kidney function as I can. This is undesirable because it was a painful, troublesome procedure, that kept me being able to be a mom to Adahlia for a short time. Any time when I am laid up is too much time, in my opinion. It’s very upsetting to not be able to care for ones own child.

Realizing that the problem was not resolved by the last procedure is upsetting news because I had made plans to begin working at my friends’ clinic for half a day, one day a week, starting next week.

Luckily, Joe is able to be here for me, driving me to the hospital and caring for the baby…

… who is not looking well. She went 5 weeks last transfusion, but she has had a rough time since then. She probably could have used blood this past week, at 3 weeks. I am certain she will be transfused at 4 weeks, this coming week. She hasn’t looked this bad in a long while.

We have received some financial help and we really appreciate it. In a strange twist of fate, this is the absolute best places in the nation for kidney surgery and transplant for me, and one of the best for children’s blood disorders and cancers, too. We cannot get this combination of top-quality western, natural, and oriental medicine anywhere else in the country. We need to try to stay within a drive’s radius, as flying with Adahlia is dangerous and can only be attempted during a small window of time after a transfusion, and coordinating her complementary medicine care for that window would be very difficult, if not impossible. Moreover, as an immune-compromised and unvaccinated child, flying is an unnecessary risk that could endanger her life. Doing it occasionally is I’ve thing. Doing it routinely would be imprudent. (We are slowly starting to vaccinate, on a very careful schedule, but that doesn’t change the fact that she has low white cells and is vulnerable to infection, and complications from infections.)

We need to make it work here, for her sake, and mine. We appreciate your unflagging compassion, help, love, prayer, and support. What is typically a time of great joy and celebration – the first years of a new family together – has been studded with sickness and tragic revelation. We acknowledge it, because it is truly sad, but it doesn’t help us to mourn what is simply the loss of an ideal. We remain very much in love and try to remain vigilant about redirecting our focus on trusting this journey. The truth is that we are some of the luckiest people on earth. Being with the ones you love, in sickness and in health, and seeing the beauty in the ordinary and extreme, makes it special.

We have had a difficult road, and we really wish it were over, so that we could rebuild our lives, but perhaps the roughest times are ahead, for Adahlia and I both, medically, and for all of us, financially. We have been very lucky, indeed, to have managed to keep a safe and beautiful, healthy and stable roof over Adahlia’s head. We would live anywhere, Joe and I, but we do hope circumstances will allow us to find something of decent quality for Adahlia to live in, something around $800 a month. We could make anything work, as far as size is concerned. Our current rent is twice that amount, simply way too high, something we could afford before our health crashed and Joe lost his job through no fault of his own, but we certainly cannot afford now. If you hear of something, run by compassionate and trusting people, please let us know. We have excellent credit and landlord references. We have never been evicted and we don’t intend for this time to be the first.

Thank you so much for being who you are, and being here with us.

A warning, or apology: I am about to be vague.

But it’s on purpose. Perhaps ambiguity is helpful, at times, for its universality.

First, a short backstory, to set the stage.

…

This has been a tumultuous and quiet year and six weeks.

Tumultuous in its amplitude of emotion, its drastic changes, its whirlwind of revelations.

Quiet in that I have never lived without an accomplishment in mind, without a purpose or eye on some prize, without at least knowing it was a tactical pause, a regrouping, in the ever-pressing push towards the advancement of my place, as appropriate, within this crazy rat race. My whole life I have been, quite simply, a born-and-bred achiever. But during this past year, I have been forced to be still. I have found myself suddenly, and inexplicably, helpless. No ability to work, nor to continue my doctorate, and eventually, barely able to care for my infant child, who was struggling to live. I found myself, in other words, mystifyingly impotent. Weakened. Dependent. And it didn’t matter how hard I tried to right the ship: she was intent on sinking. My health, finances, loved ones, and beliefs on the deepest of levels, all slipping determinedly towards ruin, like ice melting through my fingers.

So in between bouts of despair and rage, there would be this quiet.

And out of this quiet, there would be some awakening.

…

I have lived a rather interesting life.

I chose it, without knowing, of course, what would happen. I only knew that there was something deeper than how we mostly live.

For a long time, things were rather sad.

For many, many years, it was something of a struggle.

Very dark times. Very sad.

And then there were these points of light in it.

And then there were these illuminations, gifts, you could call them, that cracked open life to show something shiny inside, that could never be owned, but could be experienced, like tasting a fig plucked from a tree.

These times occurred more often. They grew. I felt blessed, finally. Grateful, and at times, free.

The gifts increased. They touched every aspect of my life. I was on to something, I was moving towards something, willingly, wherever it would lead. I merely listened and allowed it to open.

The dark times seemed to have happened to someone else. I could barely recall them. And I didn’t want to. I had shed that identity. I lived happily in this new way. And thought I trusted it.

…

And then, disaster. Quickly, everything tumbles, like dominos. It doesn’t matter if I scream. It doesn’t matter if I pray. I am alone, and clutching ice.

…

So much quiet.

…

So much quiet, that things begin to stir.

…

I see so many things, looking back. I can see her and her strength. I can see her in her naiveté, and in her fallibility. And through it all, the thing inside her, that she listened to, and didn’t listen to, that didn’t belong to her, but shone brilliant, with the blinding power of a prism, those times, those moments, she unknowingly set it free.

…

…

…

Adahlia sleeps. So quietly, she sleeps, I could be in bed alone. I slide my hand in her direction and my fingers find a heel encased in footie, a rubber-bumped, no-slip sole. In response, she presses her leg to my forearm. Its not enough. She rolls towards me, on to her side, flinging a tiny arm over mine, her fingers massaging and petting my skin, finding and tracing pathways of comfort in the ridge lines of my bicep, my extensor-this, and flexor-that.

…

I realize: I have lived an extraordinary life.

I realize: I am actually, truly, happy. In this moment. With all this shit going on, and falling apart, I am actually, happy.

I realize: I have lost all sorts of things that don’t matter, even the things that people say are the only things that matter, but actually, don’t.

Whether we are financially ruined by this crazy year or Jo lands a job or we meet a leprechaun with deliciously addictive cereal and cookware filled with gold. Whether my kidney kicks back in or I go into chronic kidney failure. Whether or not Adahlia has a blood disorder.

It doesn’t matter to me anymore.

I have become reacquainted with myself.

…

The fact that Adahlia exists is pure miracle. She is the most ridiculous, wonderful, insanely beautiful twist in a play I am much too small to conceive. I am so, so grateful to know her, to have been chosen to be her mom.

The fact that Jo can see me, and I him, and we can trace the excavation of our knowing of other in self, to arrive at delight in other, despite everything that has attempted to blind or confuse us, is nothing short of a mind-blowing, heart-bowing, sanctity.

None of this could have happened with out everything terrible that has happened.

And the idea of the three of us being here, together, makes me giddy.

…

We have come full circle.

All I ever wanted, and never knew I wanted, is now with me. On this journey of self-discovery, I have rediscovered me, a true me, and she has been witnessed.

We not only can grow and change, but we do it together. We are catalysts for each other.

We open our own eyes, and in doing so, we create the space for others to open theirs, and in doing so, we are seen and finally see.

And we are wiling to die, if necessary, to make that happen.

…

I realize: I could die, right now, and my whole life would be complete.

And that fills me with such bursting gratitude, such soft peace, that I think I would like nothing better than to join my two loves in sleep.