Fantastic news!  We have Diana Wright on our team!  Hooray!!!!

If you’re a friend of ours, I’m sure that right now you’re thinking “Hooray!” immediately followed by: “umm…who is that?”

Diana Wright is the amazing nutrition consultant in the UK who worked with a boy with a mysterious blood disorder, similar to but not exactly like Adahlia’s, and helped get him transfusion independent.   I first found out about her back in the fall, when Adahlia still didn’t have a diagnosis beyond “mysterious blood disorder,” and I was on the internet daily, either while pumping milk in the deepest hours of night or while lying next to her, ready to comfort her when she was moaning in her sleep, digging up anything I could find on blood disorders.  Read the article that inspired me to contact Diana and learn how she successfully treated a young boy using leucine and other supplements here.

If you’ve been keeping up with my posts you know that I recently contacted the researchers of the leucine clinical trial starting soon in the US.  Adahlia is too young to participate; researchers don’t know how high doses of leucine would affect an infant at this time.  But the researcher wrote me back, answering all my questions, and included the Czech Republic study on leucine from which they are basing their dosages.  Very helpful people, these scientists.  I love being part of the medical community.

On June 8th, I finally sent an email to Diana.  And then waited.  And then today, I experienced a huge amount of relief when I checked my email, and discovered the following response:

“Bless you. I would love to help you. Can I read this and then can we arrange a skype call for next week?”

Elation!!!

I have no idea what she’ll cost but I don’t care.  She’s the only nutrition expert I know who has successfully treated a child’s blood disorder with nutritional supplements.  If you want to help us out financially, we could still use all the support we can get.  (See our exciting, new fundraising page here… and thank you to everyone who has already helped us out!)

I am just so darn jazzed about this latest development.  Diana will be a fantastic addition to our team.  In the meantime, we are still doing chinese herbs with Adahlia, and no, I have not given up on them.  I will write more about Adahlia’s current health status, as well as mine own, soon.

If you haven’t visited it recently, pictures from Adahlia’s 1st birthday are now posted under “Pictures” on this website.  Joe and I are also kicking around some zany and kid-friendly “funraising” ideas for Adahlia in addition to the “fundraising” … we’ll keep you posted because we’d love for you to come play with us.

If you’re curious, my email to Diana follows below.  Love and blessing to you and yours!

***

Hi Diana,

I am writing to seek your professional assistance with the nutritional care of our daughter, Adahlia, who has been diagnosed with Diamond-Blackfan Anemia.  She just turned one year old on July 3rd.

I read about your success using leucine and other supplements in treating a boy in England who suffered from a mysterious blood disorder.  I wanted to contact you because I do not know any other nutritional expert with your experience.

Adahlia was first taken to the hospital at 6 weeks of age, with a hemoglobin of 1.9.  She has needed a life-sustaining blood transfusion approximately every 4 weeks since then.  The doctors have found a “mutation” in gene RPS 26, which they have identified as a marker for DBA.  She is slightly neutropenic but is capable of mounting a successful response to infection on her own. She is otherwise healthy and developing according to all milestones.  She is a beautiful, bright, active, and inquisitive little girl.

We live in Portland, Oregon.  Her doctors want us to start her on a trial of steroids to see if it increases RBC production.  (She is capable of making normal RBCs, the problem is that she doesn’t seem to make enough, in an appropriate response to the natural, timely death of RBCs. Her erythropoietin levels are high, so that is not the issue.)

Researchers in the US are starting a leucine clinical trial for DBA this year, but Adahlia is too young to participate.  The minimum age to be included in the trial is 2 years, and as I said before, Adahlia just turned 1.  They apparently have concerns about side effects of high doses of leucine for someone under 2.

Personally, I am even more concerned about the side effects of steroids – she is absolutely fine other than the blood issue, and I don’t want to impair her growth or risk the cognitive issues associated with steroids.  I believe the potential side effects from amino acid supplementation are less severe, correct?  I do not wish to start her on steroids and then learn that I could have treated her with leucine.  My intention is to keep putting off the steroids a little longer, as long as it seems to make sense, anyway.

I would like to consult with you about her condition.  I would love to do phone or video conference call and we could possibly fly to England if absolutely necessary.  Or, if you know someone in the US, we could potentially work with them.   We could get nutritional and other tests ordered through her doctors here in Portland, which have been relatively accepting of our attempts at natural healing methods to date.  I am an acupuncturist with a fair amount of nutritional training, and have been working with a trusted professor to administer appropriate chinese herbal therapy.

Please feel free to get in touch via phone or email.  My number is xxx-xxx-xxxx.  Thank you!

All the Best,Erika Marie

The Portland Chapter of the American Red Cross has announced a blood shortage of all blood types.  (We just heard it on the radio.)  Adahlia has been exhibiting signs of low blood and we expect she will need a transfusion next week.  Apparently donations have been down recently.  Blood is a priceless gift.  Make an appointment now, while you’re thinking about it, to do something wonderful for someone!

BE A HERO!  GIVE BLOOD!

Today, down by the Saturday market, next to the rock sculptures, near the cherry trees, a young wedding party took pictures. They were in a different kind of wedding attire – perhaps traditional for their culture – the women wore tight, sexy black dresses, the men wore red shirts and black pants, with black cowboy hats. The bride wore a full-skirted, red gown bedecked with iridescent sequins, some of which created a shimmering, purple-blue-red river cascading down the front, brilliant in the sun, a sparkling gold bouquet in her hands. It was anything but tacky. She was a fire goddess, a beautiful young phoenix in human form.

We had been playing with Adahlia in the grass several yards away. But Adahlia is at a stage where she does not necessarily want to actively play with me all the time. I know she loves to be with me, but sometimes, when she is not low on blood, I can leave her for a time in the company of her father and all is well. So, after several minutes, my curiosity could no longer wait. Leaving Adahlia in the grass with her father and grandmother, I walked toward the wedding party. I skirted them, drinking in as much as I dared, not wanting to offend or stare. On my way back, I skipped lightly on the rocks. In such tiny moments, I still find great pleasure in the freedom and lightness of my body, the memory of the heaviness of pregnancy and the weariness of my illness still so fresh.

I was strolling quickly, and I was probably gone no more than 3 minutes. But apparently Adahlia had crawled after me, as far as she felt she could, and then gave up, crying. Her father then scooped her up and was trying to console her as I returned.

I had no idea.

I had not heard her.

And when I found out, my heart sank. My stomach followed. And I wished someone had called out to me, so I could have turned around, seen her, and gone back to her. It breaks my heart that I kept walking away.

***
She still reaches out for me in her sleep, seeks my skin with her fingertips. I curl my arm over and around her head, kiss her face when she moans and cries out in her sleep. She rolls away, her back to me, and then rolls closer, her arms flung over mine, her leg hitched up on my waist, as close as she can get.

***
Fire phoenix, jewel of summer
Shimmer on the tide
Do not turn my eye.

Leave me to the moonlit shadows
Let winter settle softly in the night.

Yesterday, Adahlia celebrated her first birthday. She has witnessed one full revolution of the earth around the sun.

It was a wonderful day for her. She loves being outdoors, so we took her on a short hike to a waterfall. Then we returned home, opened presents, and shared a pie crust filled with fresh berries. Her grandparents and her uncle were in attendance.

I can happily say that she adored her birthday, and all the amplified attention and love she received. She opened each gift and all her cards (I discovered that tissue paper is easier than wrapping paper and fun for little hands to tear). She clapped her hands with joy and examined each of her gifts with bright eyes, handing books to me for me to read to her, kissing stuffed animals on their mouths, and laughing. We blew paper noisemakers, which she found strange. She pointed at her Happy Birthday sign several times, saying, “bu!” When it came time for dessert, she sat erect in her high chair, and we presented the pie of fresh berries in graham-cracker crust, with a number 1 candle nestled into some Tru-whip. She looked a bit solemn while we sang, until Joe and I blew out the candle, and then she reached for the pie, grabbing a raspberry in one hand and bringing it to her mouth, and then taking a blackberry in the other. It was the perfect first birthday cake for her! Kicking her legs and giggling, she squeezed and mashed and ate berry after berry, and a little graham cracker and whip, too. She made a huge mess, smearing bright links and purples all over her face and hands, and despite her bib, eventually all over her beautiful, simple, white cotton dress. When she was full, she eagerly fingerprinted large swirling colors all over her tray. The entire time, she engaged her various guests with her own “raspberries,” babble talk, waving and head tilting. (She likes to look at people sideways sometimes, these days.) It was absolutely fantastic. And I while some first birthdays are awkward events for the child, and in some ways, may be more for relatives than for the child, I can assuredly say that she LOVED her birthday celebration. I will post a couple pictures soon.

Everyone left after we ate the pie, and as she was born in the evening, Joe and I were left to enjoy her in peace and reflection of what had occurred 365 days ago. It was a phenomenal day. There is absolutely nothing like birth, and we gave birth in the most amazing setting, at the Andaluz Waterbirth Center, under the care of some rather extraordinary midwives. The birth was incredible. It was a sweeping, romantic experience, supernatural, in every connotation. And so it felt like destiny that as the hour of her birth arrived, I stepped into the tub with her and washed all the berry juice away. After dressing her for bed, and while talking with Joe, she fell asleep in my arms, breastfeeding, about five minutes before the moment of her birth.

As a commemoration and celebration of her life thus far, I could not have wished to give her a better day. I wish to thank everyone who has sent prayers, love, and light. I wish to thank everyone who has given blood to her her, and those who remain anonymous, who had no idea that their blood would save the life of an infant girl when they stepped forward and offered their arm. I wish to thank all midwives, doctors, nurses, and other medical professionals who have brought her to this day. I give thanks for natural, modern, and spiritual medicine, and the love and support of friends and family. I give thanks for Joe and for myself, for my strength and the inner resources which carry us through the toughest moments. And I thank the supreme mystery of this extraordinary, beautiful young being, of the path we walk.

… has yet to start. We are waiting on the blood to come, which has already been ordered.

Her Hb was 7.9. The doctor called it borderline, giving us the option to wait a week to transfuse. The time we went 5 weeks she was 8.0 at 4 weeks, so we are kind of needing transfusions at 4.5 weeks right now. We decided to go ahead and do a transfusion today, rather than wait, since her IV was already in (the phlebotomists were mysteriously gone, their office closed today, so we couldn’t do a check of her blood levels before setting the IV this time.) It turned out ok – the IV tech was able to do it with one poke.

Her white cells were a little low, outside normal range, but her neutrophils were in normal range.

I won’t know her retic and ferretin for a few more hours, as they send those to the main lab for processing.

She is at least stable right now. Improving? No hard evidence says yes. Soft, subjective observation says possibly… but too soon to be sure.

Being in this hospital is difficult. Being on this floor (cancer/hematology) is a challenge. A baby in the waiting room is unhappy, sickly, making grunting and snorting noises, having difficulty breathing. Maybe only 3 months old, her right knee is hugely swollen and purplish blue. Was she dropped accidentally? Is it related to a cancer? Does she have an infection?

Taking Adahlia on a walk around the wing, we pass the 10 private transfusion “rooms,” created by erecting walls with giant curtains as doors. The feeling is a strange blend of being in the bays of a stable, and in strange, semi-private group shower areas. Each cramped bay contains a hospital bed, a recliner chair, an IV stand, a tray, a wall shelf of children’s books, and a wall mounted swivel TV. We typically close our curtain at least part of the time so Adahlia can breastfeed and (hopefully). (We are here for about 8 hours.) But a lot of people leave their curtain open.

In one bay, a young boy, maybe 10, lies on a bed on his side, playing a video game, a feeding tube in his nose. His left foot is missing, the unnatural stump of his ankle bandaged. Can leukemia lead to poor circulation and cause gangrene?

It’s part horror show of what could be, part consolation show of what could have been. And even typing those words I know I’m being selfish, and dramatic, but its how I feel looking around me — just this all-encompassing desire to not be here.

A little boy in a bay a few bays down cries and struggles as the nurse is attempting some sort of procedure. His dad tells him to lie still; he cries out that he doesn’t want to. His mom says it’ll be over soon; he screams. Hold still! His dad says. Ow!!! He shrieks while his mom hushes him. His cries fade into little moans. He whimpers, “it hurts…”

This goes on every tine we come here.

It is actually happening every day.

Multiple times a day.

From another bay, a wracking cough, full of phlegm, deep in the chest. It probably comes from a child between the ages of 8-12. But it sounds like it comes from a 60 year old smoker.

I know the nurses probably tell themselves they are doing it to cure the children, that the short-term suffering is necessary for a hopeful cure. But I don’t know how they stand it.

I hear a nurse outside.

“I just need to get this blood started!” she complains to someone. She sounds overwhelmed, or maybe just over-tasked.

I’m assuming she’s talking about us.

Adahlia will have to be woken, a shame — it’s so hard to get her to fall asleep here, and she’s actually sleeping deeply, tucked into organic blankets I brought from home.

But once the transfusion starts, we have only 4 hrs left.

I started writing this from the bathtub, yesterday (Tuesday), as i filled it with hot water. I turned it off twice because in its tumbling roar, I thought I heard her crying for me. It was the first solo bath I’d taken in awhile. It was one of the worst days I’d had in awhile.

Adahlia was not doing well yesterday. Her blood levels are to be checked tomorrow (Thursday, or today, depending on when you read this), and she will likely need a transfusion. Typically, this means she is extra sensitive, extra clingy, extra capricious, extra easily frustrated, extra demanding, extra everything. The past few days she has been all the above.

I usually remember that it’s because she’s low on blood and feels awful, and so I carry her constantly, feed her small amounts often, console her, do whatever she wants, and meet her every need. But when I am having a tough time too, like yesterday, and then I run low on patience with her, I feel awful.

To be truthful, it’s not that I was frustrated with her. I was upset with our situation. Frustrated and angry and feeling impotent, looking at her pale little feet, an enthusiastic smile flashing from a drained face and fading away again. So angry that she’s not better yet – angry at myself, frustrated with natural medicine and the last four years of my education. Upset, wondering why the energy work I do with her – reiki – hasn’t healed her. And when she was too tired to smile for the neighbor who said: “Transfusion in 2 days? Well, she looks great! She looks healthy!” I was infuriated– not with Adahlia, of course, but with the fact that she appears fine to most people. (Trust me, if we didn’t need to do these transfusions, we wouldn’t be!)

Angry, thinking of how we’d like to move forward and begin really building our life, but we are still recovering and needing to support each other as we come out of a health crisis that nearly wiped us out in every way. Sometimes, I just get so angry.

I need to remember that we are building our life. By supporting each other and caring for each other in this most important way at this most critical time, we are affirming what is most important to us in our lives. And that’s not a job. Or a passion. Or keeping up with societal claims. Or really, any pursuit or obligation that we tell ourselves is important. It’s dropping all those distractions to care for the people you love when they need you. That is the root that needs nourished. What of worth can be built if that foundation is not strong? If the people you love do not realize they are always and forever first and foremost, and that they will not be passed off to a hired or other caregiver so that you can do something else?

No, this is how it needed to be. I am glad I did not give in to pressures to do it any other way. I started to — I allowed my mom to care for her for five days in September while I attended my doctoral conference. And I will never forget how she looked at me, on the fourth day, as my mom drove away with her after bringing her to visit me on my lunch hour. She was only 2.5 months old at the time. It was about a week after her second transfusion. I saw her for an hour every day over lunch and spent every night with her (we cosleep – I love it) but I was away from her from 7:30-12 and 1-6 for five days straight. And on day four, after I breastfed her and as I buckled her into her seat, she looked at me. Her eyes expressed confusion and no judgment, but a clear question: Why aren’t you coming with me?

It was the first and last of a monthly doctoral seminar program for me. If she was healthy, I think I would have stayed with it. I’m not sure; Ill never know. I wanted to continue with it. But I had to leave it. It simply was not the most important thing.

Anyway.

Its annoying that I still can get sucked into such emotional whirlpools, like I did yesterday. Because it doesn’t help. It actually makes it much worse, because I’m so busy stuffing down or dismissing furious and desperate thoughts that I can’t play with her in a fully present way. And thats when she needs me to be most present, when shes low on blood and feeling poorly. And surely she can sense it, and it sets her further on edge. And it doesn’t help Joe, either. Anger is simply a waste of time and energy.

She does worse, I do worse. I get upset about her situation and do worse, she does worse. We are each others cause and effect.

I was glad to find myself, this morning, in a clearer space, ready to play and take care of her today, ready to enjoy her. After all, I just never know. Her presence in our lives is something that can be taken away at any moment.

And amazingly, today, she did really well. She looks pretty good, all things considered. It was a remarkable day for being 4 weeks post-transfusion. I’m honestly not sure what her labs will be.
And so enough meandering; let me give you the facts as they stand:

Tomorrow am we will have her blood drawn and they will test it as they always do. If she needs blood, they will give her a transfusion.

She has been taking the Chinese herbal formula extremely willingly for the last week or so. It’s extraordinarily interesting. She fought against it so much at first, but we kept it up, 1-1.5 g 3xday since June 10th. And she takes the dropper from us and sucks it down herself now. Waits for and wants more. It’s remarkable. Perhaps also explicable, according to Chinese medicine theory, but I won’t bore you with the potential whys of that, here.

We haven’t done the chlorophyll at all since the 10th, or the cherry concentrate regularly, because we were struggling so much to give her the Chinese herbs and well, there’s only so much we feel right about giving her.

Up to twice daily, but usually once, I’ve also rubbed peppermint essential oil into the bottom of her feet and a few pertinent acu points. A study of mice with destroyed RBC stem cells found a statistically signifant number of mice treated with peppermint oil made new RBC stem cells and recovered. All the others who did not receive peppermint oil died. Now, Adahlia is not taking it internally and the dose rubbed into her skin is small, but I feel most comfortable starting out small, and again, she’s already taking the Chinese herbs internally. So it’s just a little something we are trying.

I’ve also been doing daily moxa and shonishin up until 3 days ago, though, and I feel its helped her be her best self this month. It’s definitely helped her energy, mood, and skin.

It will be interesting to see what her numbers say. She is not doing her worst, not quite as bad as I’d expect her to be at this point, but she is also not at her best. No, it’s pretty clear she needs blood.

As I laid down with her tonight to put to to sleep, I told her we’d be going to the hospital tomorrow. I told her about the needles sticks, how they’d have to test her blood, and how if she needs it, they will use it to find a match for her, and then the tube will feed her “red” through her arm again. And that it will hurt, but we will be there with her through it, and it will feel weird, but that she’ll feel so much better, she’ll have more energy to think and play.

She fell asleep listening to me.

Though they seem old hat at this point, every blood transfusion is risky. Please hold her in light and love in case she needs a transfusion tomorrow. Please join me in filling the hospital staff with joy and light and confidence, so that the procedures all go as smoothly and safely and comfortably as possible.

I will leave you with some lyrics that I remembered this morning. It helped me – you will see why. The song is absolutely haunting and beautiful. If you wish to be moved, to feel chills, listen to it. (I will not tell you the artist so as to make it a fun surprise. You would never guess, and would most likely be shocked by most of this band’s other songs. It only goes to show the power of art as a mouthpiece for what is beyond all classification and preconceived notion.)

Peace. Love. Blessings to all who read these pages.

“Green Valley”

“Hello stranger,
Can you tell us where you’ve been?
More importantly,
How ever did you come to be here?
Though a stranger,
You can rest here for a while.
But save your energy,
Your journey here is far from over.
Come the sunrise,
We’ll descend through Judgement Valley
And weigh your worth
Before her majesty, the Verde River.

No direction but to follow what you know,
No direction but a faith in her decision,
No direction but to never fight her flow,
No direction but to trust the final destination.
You’re a stranger til she whispers you can stay.
You’re a stranger til she whispers that your journey’s over.

Weigh your worth before her majesty, the Verde River.
Weigh your worth before her majesty, the Verde River.
Weigh your worth before her majesty, the Verde River.
Weigh your worth before her majesty, the Verde River.

No direction but to follow what you know,
No direction but a faith in her decision,
No direction but to never fight her flow,
No direction but to trust the final destination.
You’re a stranger til she whispers you can stay.
You’re a stranger til she whispers that your journey’s over.

Weigh your worth before her majesty, the Verde River.
Weigh your worth before her majesty, the Verde River.
Weigh your worth before her majesty, the Verde River.
Weigh your worth before her majesty, the Verde River.”

A new study is being conducted on the use of leucine (an amino acid) to treat DBA. It has just been approved.

Click here to read an easy-to-read explanation of the study, or here for the official clinical trial information page.

Adahlia is too young to participate – participants must be 2 years old at least. I have written the researchers, however, to ask them about dosages and to see if they’ll help me.

We are due for a blood check and transfusion this Thursday. If her retic count isn’t still climbing, then I am considering doing my own leucine trial. We spoke with her specialist about trying leucine before steroids at our last appointment. He basically said that since it is not an approved therapy, he cannot supervise it. As far as the hospital is concerned, our only option is steroids at this point. But I am not willing to give her steroids at this time. She does not have any growth problems or medical issues besides the bone marrow failure. There’s no guarantee that steroids would work for her— but it is all but guaranteed that there would be side effects and growth problems from taking them. I am just not willing to do that to her yet.

This particular doctor and I have a wonderful working relationship. He knows I am dedicated to finding a cure for Adahlia. With a smile, he said that I could find out all I need to know about dosage via the published scientific journal articles. He also said that if I start giving her leucine to let him know so that he can monitor her.

In other words, he supports the idea of trying leucine for Adahlia, but he cannot medically advise me (perhaps, legally) or help me administer it.

So I’ve written these researchers, explaining our situation, and saying:

“I was curious about how you settled on 700 mg/m2/dose. Do you consider that to be a high dose, or do you consider it to be a moderate-high dose? Is it considered safe? Why are you not including infants under 2 years? Is it because of concerns about excess leucine in a sensitive developing system? What concerns do you have in particular? What side effects or adverse effects are you monitoring for?

For a 19 lb child (approx 8 kg, which I believe is 0.4 m2), the dosage would be 700/.4, or approx 280 mg each dose, 3 times daily. Is that correct?”

I’m not sure if they’ll respond. If they don’t, or they don’t want to help me, I’ll try emailing some other people, like the nutritionist in London who first discovered that leucine supplementation could resolve generative anemia like DBA. If that doesn’t work, I need to find a pediatric nutrition specialist here in Portland, ideally with expertise in amino acids. I’m all ears for suggestions.

Truly, this study is a big deal. It’s a big deal for patients and their families. It’s a big deal for natural medicine. It’s a big deal for the growth of our understanding of genetic regulation and expression.

There’s a lot we don’t understand about how leucine positively impacts genetic expression, or allows someone’s bone marrow to begin producing RBCs. If the Chinese herbs work, there’s a lot we won’t understand about that, either. But we can create theories, looking back. The most important thing is to find what works, while doing the absolute least harm.

In Adahlia news, she had a very rough couple of days after we gave her the new Chinese herbal formula (with the Gu focus.) I think it hit her especially hard because we make her take it 3 times per day, now, instead of 2. On Weds, after we gave her the first few doses, she looked absolutely awful. Pale, irritable, weak, distressed; tugging at her hair and generally, obviously, unwell. But now she’s doing much better. Eating better, sleeping better, playing better. She’s still fairly pale, and she looks tired. But she wants to participate in life and look at things, and crawl, and play. We will be taking it easy for the next 5 days. I’m nearly certain she’ll need a transfusion this coming Thursday.

I met a friend for lunch recently. She was blown away by the fact that I am forced to experiment on Adahlia. She couldn’t fathom the stress of giving your own infant daughter droppers of herbs and other treatments, not knowing exactly what the results will be, taking such a gamble. After all, I could mess up. I could harm her. What does chlorophyll or Chinese herbs or cherry juice do to a 9 month infant?

There was a point, back in the Fall, when I was very, very stressed by what I was doing. I felt it was all up to me to figure this out, to cure her or harm her or make the decision that could even kill her.

Now, I still accept that full responsibility. Ultimately, her health has always been my responsibility, not the doctors’. But I have realized that I have I have teams of people, from all sorts of different specialities and backgrounds, that I can call upon for advice and assistance. I am not shy about calling them to the front, to see how they wish to play their hand. This is an opportunity for everyone to be their best self.

And there is a presence that has been with us through this ordeal, that has run me into the right person after right person, just when I needed them, or helped me align with my heart just when I was about to be flooded with opinions (sometimes, there are too many well-intended opinions.)

It hasn’t always been palpable. Sometimes, in the exhaustion and turmoil of emotion, its been silent, as though hidden. But it is there. It is always there. I know it, even though it has been mostly out of reach, even though it seems like a lifetime ago, that it reached out and through someone… was it really me?

And perhaps that’s been the hardest thing for me over the past many months. For those that truly know me, have known my connection to Spirit, or God, or what you wish. They have felt it around me, or through me, or with me. Not always, no I am no Saint, but I have been blessed to carry on my lips and through my heart and hands some powerful, transformational gifts.

And in the past year, it is like I have been left. To feel abandoned by God is the worst thing that can happen to one who has met and been infused with God.

But there is an upside to it. It forces one to realize a deeper depth to all the little epiphanies, little awakenings, that seemed so grand, granted earlier. To come to a place where there is nothing, nothing I wouldn’t do or endure to be reconnected with that Awareness of Being. Nothing more important. Nothing more sublime. Only that Oneness and the remarkable sensation of being Awake.

Of hearing clearly. Of sensing cleanly. Of being able to take something slightly tarnished or warped and reflect it through a prism in my own being, and give it back to that person, pure.

Not my own doing. I merely disappear.

Surely it is sacrilegious to say it, but for all Jesus’ understandings, did he not suffer extraordinarily at the end? Was he not mocked? Did he not cry out for having been abandoned? Where was all his awareness, his center, his divinity, his power, at that time? At his greatest trial?

It is part of the path.

You see, it is part of the path.

Awakenings. Blessings. Radiance.

Suffering.

And then a deluge of all the above, again, at a higher, more intense, level.

If you want to know more, if you want to feel more, if you want to experience more, then you will.

We are like fish schooling together to discuss the possibility of the existence of the ocean. (Thank you, Rumi.)

Welcome these gifts from the Beloved.

Yesterday, I went to the Lovejoy Fountain with Adahlia. Sun, warmth, and a cascade of water running down a series of steps, creating a wading pool for little ones to splash in, makes it the perfect destination for young NW PDX families. Although I hadn’t planned on it, I carried Adahlia over from the grassy area (a mix of shade trees and sun) and let her feet in at the waters edge. She loves water, so I wasn’t surprised when she wanted down on all fours, so she could touch the water with her hands. The fountain changes its flow over time, changing the water level of the pool so that it recedes to nothing and then builds back up to about a quarter city block. Adahlia slowly chased the water down as it receded, as though perplexed, and as it came back in, I occasionally picked her up and moved her backwards. By the end, she was soaked. Back in the grass, on our blanket, a little girl tottled over to me wearing a matching suit and sun hat, and put her hand on my shoulder. She didn’t speak as Adahlia looked at her, and then Adahlia finally reached towards her as her mother came to scoop her up. We exchanged the usual greeting and inquiries of age: her daughter was a mere 2 months older than Adahlia. “Such a fun time!” the girl’s mom said, and she sashayed away with her prize swinging between her arms.

I agreed, of course. And it was a fun time. But it was also 2.5 weeks since her last transfusion, and I had spent much of our time at the park reminding myself to simply relax with her, and trying not to look at other kids’ complexions, comparing them to hers. Some kids were very pale, and there were many children with puffy lower eyelids, or bluish skin tone, or who otherwise looked less well than Adahlia. But then I look closer and I see a lack of depth to her skin tone, a certain sallowness or deficiency that can’t quite be quantified… which perhaps I am only seeing because I am an oriental medicine practitioner.

Over the past months, I have learned a thing or two about anemia. And in gauging it, I’ve learned that you can get around ethnicity, skin color, temporary head-colds, and other confounding factors simply by looking at children’s feet. The soles, or bottom halves, of children’s feet are always pink, flushed with blood, especially as they run or crawl. Unless, of course, the child is anemic. And unfortunately for me, I was surrounded by dozens of shoeless children, and I couldn’t help but look at their feet.

(For you healthcare practitioners, there is another way to judge anemia for people with very dark skin tone, a more reliable way than skin pallor, which is to look at the whites of their eyes. If you cannot see the little red blood vessels, or there are only a few, and/or there is a slight bluish tint in a halo around the iris, then there is an anemia. But of course, this requires you to peer into someone’s eyes, which would be very awkward to do to strangers in a public park!)

I did my best to just enjoy the time at the park, to acknowledge to myself, yes, okay, she is anemic, she isn’t doing super, but she’s alert and enjoying herself, and that’s all that matters. But there were so many healthy children — people are just bursting with them. And that’s when things get dicey: when i start imagining that we will be in the hospital again in less than 2 weeks, while the other scrambling, laughing children won’t. And that’s when I start to feel angry that this is happening to Adahlia, and I start to think it isn’t fair. And then I realize, in a blush, that I am jealous of other children’s health.

It’s funny, though, the things we think we are owed in this world. Or maybe its not about being owed, but forgetful of the true nature of life, which includes toil and heartbreak in equal proportion to ease and joy? Not too long ago, many women died in childbirth, and many infants in their first year of life. My grandmother, actually, lost her 4 month old daughter to illness, while her husband was off fighting WWII. Can you imagine? I’m not sure how she bore it, but bore it she did, as well as three more children who made it into adulthood.

Where do we get these ideas, that everything should be roses? Is it simple denial, the it-wont-happen-to-me syndrome? Is it because of modern medicine? We just take pregnancy and birth and childhood for granted? It used to be common for there to be loss associated with having children. Now, we are shocked and regard ourselves as recipients of outrageous fortune when tragedy strikes. And there are less and less women who can identify with such tragedy, compounding loss with feelings such of alienation in those who experience it. It is as if such things have been whitewashed for a shinier, sparklier society.

Do such things not provide the depth from which we measure our own strength? Provide the counterpoint for relishing a holiday gathering or a family picnic? Or do we not need such difficulty, such tragedy? Could we one day be a tragedy-free human race? We want that… right?

I don’t know. All I know is that its very illuminating for me, having this rush of negative thought or emotion. It helps me to remember how much internal work I can still do, to remain present in the moment, to shed the illusion of desiring anything more than what exists now, which is always meeting us exactly where we are at, exactly where are ready and need it to, regardless of how nice it feels. If we are wise, we embrace it, we acknowledge that it is exactly what we need right now. By embracing it, by bringing it into ourselves, we allow it to change us, freeing us to enjoy it instead of wishing for something else, and that, in turn, has the potential to change our external world.

Today, we went to check Adahlia’s (and mine) Chinese herbal formulas. I must say that both Joe and I tire of having to give hers to her. She takes it peaceably only 20-40% of the time. She’s been taking a Chinese herbal formula for 7 months now.

Today, I was hoping that she would show signs of not needing the herbs for what is known as “Gu.” Gu can be thought of like spirochetes and other tiny viruses that live in the body for years, even incorporating themselves into host DNA processes. It also can be thought of as an unhealthy energetic signature, like an unhealthy pattern, or habit, or way of being in the world that is very difficult to break. An adult with Gu, who may be manifesting with symptoms like Lyme disease, may need 5 years of Chinese herbs to clear it out. A child with an acquired Gu syndrome should be able to clear it much quicker. But being born with one means its deeply rooted, and will be tricky to correct.

I tested positive for Gu back in November, when I was admitted to the ER for a mysteriously swollen kidney, and have been able to clear most of it. My formula now is mostly for tonifying my depleted energies. And I thought Adahlia was right behind me- we took her off the strongest acting Gu herb at our last visit. But today, she tested very strongly positive for it again.

I attribute my “kicking” of Gu so quickly, relatively speaking, to all the therapies I’m doing simultaneously. (And having surgery to drain out my kidney didn’t hurt, either, though it doesn’t solely account for my improvements.) Let me say, though, that I definitely still have kidney pain. Both sides. And days of fatigue. If there are woods, I certainly don’t feel out of them. But I feel better. Vastly better in some ways; marginally better in others. I’m still here, with the souls I love, so I’m alright.

Adahlia went 5 weeks between transfusions a couple months ago. It was a hopeful time, and there may have been many reasons for it. But we were also being very regular with her Gu formula. Then we tweaked her formula and she fought taking it for awhile, so we didn’t force her, and then she tested less positive for the chief Gu herb, so we decided to adjust the focus of the formula again, removing the chief Gu herb and replacing it with a less strong one, thinking she was coming out of it and her body could take over.

Basically, it didn’t work.

So we are back on the heavy-hitting, Gu-clearing herbal formula. Though it may seem odd, I’m actually more committed to continuing the Chinese herbal medicine treatments now. (There are symptoms and correlations I haven’t related and don’t have time to — this post is already too long. Suffice it to say that I have reason to believe that the right herbs positively affect her and the wrong formula negatively affects her or causes no affect at all.)

I am determined to see this course of action through to the end. Will it help? I don’t know. Is it possible that we will do the Gu clearing herbs and then tonifying herbs and she’ll still have problems making RBCs? Sure. The only thing I do know for sure is that the herbs are doing something.

Adahlia is trying to heal. We know healing is possible. The herbs affect her, perhaps not strongly enough for us to stand up and shout “cured!” after 7 months, but I have watched her closely enough to say that they do seem to be helping, or, at the very, very least, they have the potential to help.

They are a part of the puzzle.

And so, knowing that we’ve been set back a little bit, we simply readjust, and continue on.

We are where we are supposed to be.

This now is exactly what we need.

It’s been an interesting week. I think, overall, I am doing better. I have spams of sharp pain sometimes on my right, and sometimes a low, insistent, throbbing ache. My left flank also aches sometimes, growing louder in complaints and then settling into a murmur, and finally, into silence. I don’t really know what to make of it.

But in general, other than the pains (which I am trying to remind myself to embrace, instead of run from, for to go into pain is to welcome life) I am really well. I have not had this much spirit in months, no, over a year, now. I am eager and quicker to think, to do things. I move easier. I laugh easier. I can focus. I don’t feel like I need to be curled up somewhere quiet and safe where people won’t ask things of me. I imagine something akin to this is what many women feel after giving birth – just really good, after not much time at all, they bounce back. Such was not my experience. I felt like I was crawling out of a damp, deep cave, where there was beauty and love permeating all through everything, as well as exhaustion and aching I couldn’t shake, and what turned out to be well-founded concern for my baby.

I should be sleeping and I will soon. But it’s almost 2 weeks since her last transfusion. She is doing well – she can balance now for a few seconds before she starts to topple. She has learned to swing her legs over a ledge to let herself down. She picks flowers and gives me their petals.

It’s less than 30 days before she is one year old. I find it baffling. Where did the year go?

I remember so clearly, lying next to her now, what it was like with her lying inside me. She was so much smaller!! I remember feeling her fists and feet slide across my belly, and coming out to meet my palms. How she would swim inside her aquarium, as I swam slow laps in the pool. How she would turn and change positions constantly, but she would always rotate herself back to the ideal birth position when I asked her to. How she waved at us during the 20 week ultrasound.

How happy I felt, so joyful, so blessed, for her to chose me as her mother. Those last 3 weeks before birth, when I had finished graduate school and had nothing to do but rest and be with her… well, apparently, many women feel awful. But I truly wasn’t that uncomfortable. My swelling wasn’t terrible and I felt radiantly beautiful in my body. (I was taking pictures of myself even the day my water broke.) I loved, loved, loved carrying her in those final days. We were a walking miracle.

I cried the other night, apologizing in whispers to her as she slept, for how hard it must have been on her when my kidney failed during that last trimester. For not giving her the energy, her birthright, necessary for healthy gene expression. For the stress on her developing systems, which weren’t able to finish fully developing before birth, and the pain of inflammation. It breaks my heart.

Oh it’s hard when I think about it. I know how to be healthy, how to optimally care for a pregnant woman, and I did absolutely everything I could. Health and diet, gentle exercise, vitamins and loving, energy healing. And how hard her life has been already! Everything I did not want for her – and more – has been medically thrust upon her. I haven’t been able to give her the first year of life that I had envisioned: a healthy life free of needle sticks and antibiotics, and full of joy and the knowledge of her safety and security. I wanted rosebuds for her; she got thorns. Thats hard.

Whats worse: My main job, as I see it, was my duty to her while she was so vulnerable in my belly. The pregnancy was my marathon, and I, only I, was entrusted to nurture and protect her flame. Entirely helpless, it was up to me to give her a safe and supportive environment, to do everything I could so she could have the strongest foundation, the healthiest entry into this world. All my knowledge of natural health and strength and love, and it was not enough. So hard not to feel like a failure.

And yet, I know I wasn’t. If it weren’t for the reiki acting as a channel for spirit, would it be so brilliant? So perceptive, so intelligent, so sensitive and beautiful? If not for the great nutrition and herbs, would she be so vital, so strong? No one ever believes that she is sick. No one. The doctors barely believe it. Would that be the case if I had been less devoted?

Would she even be alive? For after that first time my right kidney failed, only regular trips to the pool, swimming slow, gentle laps, my belly hanging down, taking the weight off, pushed the pain away and back into place. It probably allowed my kidney to shift just enough, that long, deliberate freestyle, massaging my kidney and draining it a little. Enough to keep it going. Enough to bring the pregnancy to term. Enough to even give birth naturally to a bright-eyed and inquisitive little being. Her birth was everything I would have hoped for her.

If it weren’t for the breast feeding, that hard battle I fought to keep for her, and for us, would she be this healthy? This happy? The baby-wearing, and shonishin, and moxa, and reiki, and herbs… Where would she be without them? Really, its been like a 2 year gestation. Did I fail? Or have we merely been called to continue the good work on a higher level, one so intense that it required 2 full-time caretakers, both Joe and I’s efforts and love?

We’ve worked so hard for this anniversary coming up. It’s been so bittersweet.

And yet: If she didn’t get sick, would I have quit working? If I didn’t get sick, too, would I have left my doctoral program? Would Joe have stopped working to care for us? No, certainly not, on all counts. We weren’t in the financial position for me to slow down, let alone him. We wouldn’t have felt like we had permission to devote this last year to loving her. Was this simply what had to be, so that she could experience the love and attention of both her parents during her first year?

I think of myself a year ago today, lying in this bed, and the mix of emotion is stunning: the remembered peace and joy and anticipation juxtaposed with the difficulty and pain, the sweet and not-so-sweet adjustments of the last 11 months. It makes me so sad for her, for us. We could never have guessed what was coming. We were so happy. So confident. So clear. Never having planned to become parents, we were nevertheless ready to be attentive to her, sensitive to her, and loving to her, in ways we didn’t experience as children. Ready to experience confusion and mystery with her, instead of shutting her down. Ready to encourage her curiosity and own mind, instead of instilling old doctrine. Ready to be awkward with her, to admit our own bewilderment. Ready to be naked with her, to be gentle with her. To help her begin her own ascent, or simply watch, as needed. Sometimes, I feel robbed of what should have been storybook.

But theres no such thing as storybook. The more ready you are, the greater the challenge granted. And we were so strong. We did the best we could in extraordinarily tough circumstances. It’s not about failing or succeeding. It’s about heart.

She is so strong.

Before I close my eyes, then, I will relish these memories of her united with me, savoring also the present existence of her, the sounds and scent of her lying next to me. The touch of her skin. Both the pleasure and the pain, the fullness of the parabola. To fully experience pleasure, one must be willing to experience pain. And I wish to know the fullness of this existence. I wish to unlock everything that people hide from.

A year ago today. So much has changed. She is so big! How did she ever fit inside of me? It is fantastic and silly and beautiful and mind-blowing, the very existence of her.

She Is.

And wonderfully, I Am, too.

We are still strong, still curious. There is still something here. Something yet to be discovered.