The Great Hope

Alright Sports-Fans, Buckle-Up.

Because this is a gonna be a blast.

A blast of information that will take you like a roller coaster through some very big changes, some drops, some twists, and ultimately, to a really high-high hope.

And maybe, just maybe, we’ll find ourselves at the top, and we’ll cut loose the straps, and find ourselves flying.

It’s the Great Hope anyway.   And I’m here to tell you about it.

I’ve noticed that sometimes my posts don’t get posted to Facebook.  And I’ve noticed, also, that email versions of these posts are publishing from the name of a friend of mine, instead of my own, if you are subscribed to receive emails of my RSS feed.  Its odd.  I don’t get it.  Have I been hacked?  Who knows?  Honestly, this whole technology thing is only barely under control.  It’s like we’ve created a giant pit bull, like the size of a horse, and we’ve got a tiny little leash on him, a collar that’s more stylish than practical, and then he spies a human friend he desperately wants to lick and cuddle, and his tail is going crazy so we are ducking from it, and now suddenly he’s chasing a squirrel, and then he sees a ball fly overhead so he’s leaping, and we are barely holding on, and now he’s rolling in the grass, and now he’s stopped and is sniffing and so we think the worst is behind us until he takes a big poop… and we really don’t want to pick it up and carry it around with us.

Anyway.  Technology is not the Great Hope.  We are.  Because we are some pretty fierce, determined, crazy, inventive, observant, and thoughtful creatures capable of synthesizing extraordinary amounts of information and experience.

It’s true.

Let me get back on track.

Pit bulls and poop aside, I have some SERIOUS hope for Adahlia right now.  Yes, I know my pervious post was pretty melancholic and depressing.  BUT — I found out a few things I could not have foreseen.

First, and quite happily, I must announce:  She is NOT making antibodies to donated blood.  Repeat:  she is NOT making antibodies to donated blood!

I am so thrilled.  It is such a relief for us. We are SO relieved.

Honestly, its a baffling scenario.   I asked the nurses about it this past week, at her last transfusion.  They brought me the results of her Antibody Screen:  NEG.  She had zero antibodies against blood.

I had been expecting a much different response.

Confused, I asked them, “What about the last two times, when the blood had to be special ordered and shipped in from another facility, and we were here until 7 pm at night? And the time before that, when it didn’t take quite so long, but still took 2 hours longer than normal?”

“Well, it’s possible to make antibodies against blood and then have those antibodies go away.”

“That doesn’t really make any sense.  Isn’t whole point of antibodies (against viruses or anything) is that it is the body’s memory.  They don’t go away for what we vaccinate for, but do go away when it comes to blood?”

They agreed with me that it didn’t make sense, but said it does happen.

“Let’s check,” they said.

So they went and pulled Adahlia’s antibody reports for the last three months.  They brought them to me:  All Negative.

According to her medical chart, Adahila has zero antibodies against blood.  She never did.  The nurses are stumped.  They don’t know what happened during the last two transfusions, why it took so long for her blood to arrive, why I was told that they had to order “safer” blood from an outside facility, who it was who told me she was making antibodies, or why the antibody results haven’t been posting to my view in her myChart account since January (they are there now).

 

To hear that she is not making antibodies is the only possible good news that I could have received from the hospital on the subject.  It’s wonderful.

I have no idea if it was a miscommunication or a true miracle.  But Adahlia is still in the precarious clear.  Thank you, thank you, thank you, God!

Second:  Adahlia’s ferretin (a measure of iron overload) is only 276.  I feel like I should bold that or make it bigger somehow.  276!!  (There.  That’ll have to do.)

This is huge.  Like, the aforementioned horse-sized pit-bull huge.  I’m not sure if I know any other DBA people over the age of 2 with ferretin measures below 300.  (Feel free to comment if you do!)   She has dropped down from over 1600 to 276.  !!!  !!!

Now, ferretin is an imperfect measure.  As I’ve said earlier, it could also mean that her body simply is not fighting as many sub-clinical infections as before.  (Which is good news and something we’ve been working towards.)   It could mean she has less general, systemic inflammation.  (Also good news, as systemic inflammation = bodily destruction & death.)  I don’t know if it means her organs have barely any iron in them, but we are really hopeful that is the case.  And if its not — its still great news.

Third:  Adahlia is on a Chinese herbal formula that makes me squiggle with excitement.  It’s a blood-building formula that specifically targets the spleen and liver in Chinese medicine theory.   It is our GREAT HOPE.   I have been waiting for this formula for years.

Now, that might be confusing to you.  “Why wait?  Why not just use what you think will work?”

The answer, friends, is Therapeutic Order, or the idea that you cannot give something to someone before their body is ready for it.  In other words:  you’ve got to clear out the infections, the pathogens, and any underlying problems, and then you’ve got to restore integrity to the body (the gut) and functionality to the digestive and absorptive processes, before you can go about tonifying or strengthening anything.  You’ve got to do what the body needs; you can’t just jump ahead.  There are all sorts of reasons for this — my favorites are the ancient ones — but this isn’t the place to go into it.

The point is:  Adahlia first tried this formula in late June, around her 4th birthday.  She took it for about a week and then started complaining of really bad belly pain immediately after taking it.  Then, she started vomiting after taking it.

I reviewed her formula — there was nothing in it that should have made her sick.  And her gut wasn’t hurting her after eating any other foods, and we’d done such work to heal it.  I contacted my mentor, and he likewise reviewed her formula, reporting back to me that he was baffled.  I agreed to give her a half-dose to see what would happen.

She vomited.

So we stopped the formula.  Poor Boo — it just wasn’t worth it.  Both my mentor and I figured something must have gone wrong… it just didn’t make any sense.  So I told him we’d put it on hold til we could fly out again to see him and test the formula again.

Soon thereafter, Adahlia got a transfusion.  But what I didn’t get was the heads up that she was making RBCs!  For the first time since January, she had baby red blood cells, or reticulocytes in her bloodstream.  It was double the amount of those she had made in January.  It was still not enough to mean she was making her own blood — it was not even considered a “normal” amount of them.  But they were there.  I hadn’t realized because I had not even thought to check. I was so used to the report being “unable to detect — below instrument linearity” that I was simply unaware.

So, for over a month, she did not take any herbal formula. We went back to see my mentor, and we retested the formula.  With relief, but confusion, we found her body responsive to the formula, as well as favorably responsive to the individual herbs.  So why the belly pain and vomiting?  Was it just her body’s reaction to doing something it had never done?  Was she reacting to the idea of truly “coming into” this world, by making her own blood?

We found that her body wanted an increase of Bai Shao, White Peony, which is effective for reducing abdominal cramps.  So he wrote out a prescription for us to add an increased amount of Bai Shao to the existing formula.  Also, we’d add more Gan Cao (licorice), to smooth out the formula and help it be slower-released.  And my mentor almost stopped there.

“What about a down-bearing herb?” I asked.  “We need something to make the formula go down, to keep her energy down, so that it doesn’t rise back up.”

He thought about it a moment.  He tried a couple herbs.  She strongly wanted one, an herb I personally think tastes great, but is a bit spicy.  He was concerned she might not like it.  So he offered me this plan:

  • Add the gan cao and bai shao in appropriate dosage
  • If that doesn’t work, and the abdominal pain persists, add an extra amount of bai shao  (provided to me in a separate baggy)
  • If that doesn’t work, add in the bai dou kou, the down-going herb (also provided in a separate baggy)

Good plan, I thought.

So we tried it.  Adahlia first took the formula with the added gan cao and bai shao.  She said it tasted icky.  But we made a game of it, and she took it.  She did not have belly pain. She did not vomit.  Success!!  And that was the lunch dose.

Later that night, I gave her the evening dose.  She had no pain, and we sat down to watch a movie together.  Suddenly, she announced, “I have to puke!” and we ran to the bathroom.  She retched out an amazing amount of food and liquid.   But when I asked her, ashe claimed to have no pain.  She just suddenly needed to puke.

The Bai Shao was working.  The abdominal pain was gone.  But still, the formula came back up.  And we needed this formula in her.  While I cannot express to you how perfect this formula is for building one’s own ability to make blood and balance hormones (simply because you don’t have all the years of background in Chinese medicine education and I don’t have the time… its no fault of your own), you must believe me.  It is perfect.

So, I skipped the second baggie of Bai Shao and added the Bai Dou Kou (which is cardamom, for the curious).   I also gave her only half the dosage of the total formula, just because I feared that if she puked again, she’d refuse to try it again.   And then I waited.

And it stayed down.

And its stayed down since then.

Now, I know what you are all thinking.  How can spices and food-grade substances be medically therapeutic?

  1. Because they are high-quality or high-grade
  2. Because they are being used in a carefully balanced and designed formula in conjunction with other medical herbs, some of which are not food-grade
  3. Because we are using specific dosages
  4. Because food is medicine
  5. Because very wise, ancient sages have recorded how to use these herbs effectively and we are benefiting from their experience, mistakes, and successes
  6. Because everything has a frequency or vibration or energy and that’s what we are manipulating with both the individual herbs and the larger chinese herbal formula
  7. Because we’ve been conditioned to think that only pharmaceuticals are strong enough or capable of medically helping us, and that’s simply false.

I was so relieved to discover that she is now able to keep the formula down!  I contacted my mentor to let him know of the success, and now we wait and see.

Over the next week, I plan to increase her dosage of herbal formula 0.5 grams from 1.5 grams to 2 grams, 3 times per day.  The week after, I will try to increase it up to the full 3 grams, 3 times per day.

How has she been acting?  Well, she’s only been taking it two days, but I can report that she has been a little moodier than normal.  She’s been irritable and aggressive, not unlike the children who go on a steroid trial in the hopes of going into remission.  Its not quite that extreme, but it is noticeable to the observant parent.  She has also been wanting to sleep more, and yet, seems a bit high strung.  She has certainly been eating more.

I am contemplating letting her off the hook a bit on our specialized diet, so that she can get all the carbs and energy she needs to make her own blood, if that is indeed what she is doing.  Last night, for example, she wanted to eat a banana and it was nearly 9 pm.  That is not normal for her.  I let her have it, and she ate half.

This formula is our GREAT HOPE.  We’ve cleared the sub-clinical infections, and, I think, her body is ready to agree to stay here.  She doesn’t need to abandon her ship anymore.  We’ve designed a formula that should, by all accounts, do some amazing and much needed work in her body.   Her spleen and liver are supported.  She should be able to digest now.

She should be able to transform food into blood.

We shall see.

Prayers, love, light, and friendship, are always welcome.  Thank you for joining us on this journey!!  I pray, pray, pray, that this is our breakthrough… this is our moment.

But even if its not, I don’t see myself giving up.  We’ll adapt.  We will try new herbs.  We will tweak what we are doing to meet new information and try a new direction.

Because its possible.

And giving up has never really been my thing.

Lov,e.

New year, new school, new blood

I cross the street, a bus roars past, and I enter the corner coffee shop. I’m here for something to calm my nerves.  Alcohol? Not in years.  Cigarette? Not in decades.  Sugar? Not in months.

My coping mechanisms have been whittled down through the years, and while I’d like to claim it’s due to a superior will to live healthily, it’s more because my former coping mechanisms are rather obvious about how they are feeding what seeks to kill me.  

Adahlia just started her first class at her new preschool.  We love the one she went to last year, but this one might be our new one.  I’m mostly leaving it up to her.  If she likes it, we will stay.  If she doesn’t, we will go back.

Why leave what we love and she is familiar with?

Well, primarily, its financial.  We would free up something like $330 per month if we switch schools.  That’s nothing to sneeze at. We aren’t in a position to ignore something like that.

Second, they don’t serve snack or food at this new school.  And while our former school was vegan and organic — infinitely healthier than typical public school fare — this one requires us to bring our own snack.  Adahlia won’t have to watch other kids ask for seconds of bread, rice, noodles, and fruit, while she can have none.  She used to tell me about it daily.  It made me sad.

Third, the new one is in the afternoons and only for only 2.5 hours per day.  The other school is a 4.5 hour morning class.  It’s just so long.  And that’s the best time of day for her, for us to play together.  I’m feeling greedy for her.  

There’s so much about the other school we’d miss… The community, patents, kids, dancing, and music.  I might see if we can drop in to do days here and there, and maybe pull her back out before lunch.  I don’t know.  

She’s such a strong little girl.  So eager for new experiences. So ready to learn.

She’s getting a blood transfusion tomorrow.  It’ll be our 356th.  (Just kidding.  I have no idea what number we are up to.)  It feels like our 356th.

Adahlia has begun making antibodies to donated blood.  I’ve checked her records, and the Antibody Screen which was being reported as Negative has not been uploaded to my/her patient portal since January.  Last month, we were at the hospital until 7 pm, because it took them 4 hours to find safe blood for her, and they had to ship it over by courier from someplace else. 

I am not happy about this.  So I put “this” in a ball in my belly and simply don’t breathe down there.  When I tell myself to breathe through it, I cry.  It’s not something I can control.  I am tired of so much crying.  But of course I know that I cannot leave “this” in a ball of isolation in my gut.  

Hence, the coping mechanism.

I am terrified for tomorrow.  I don’t know why the nurses have not told me about her antibodies – why they just stopped reporting it – probably because they don’t want me to worry.  I’m scared we are on a path where she will start rejecting more and more blood.  I am wondering if there is anything I can do.  Or I should do.  Or if there’s something I don’t know about.

I don’t want to talk to the nurses tomorrow because honestly, there is NO GOOD news that will come out of their mouths.

And I’m so tired of crying.

I’m a nervous wreck about her transfusion.  The stakes have been upped, just a little bit, like raising a high-jump bar.  Her body is starting to recognize that something is “up” with this blood.  It’s not hers.

“So make your own!!!” I want to scream.

We bought a fish tank.  I just realized it is another coping mechanism.  (I should have titled this post: coping mechanisms.)

It has two sunburst platys (one orangish and one lighter yellow), one red platy, one Dalmatian Mollie, and one aquatic frog.  Their names are:  Schleukie, Lahgie, Hattie, Woukie, and Froibles, respectively.  Adahlia was instrumental in naming them.   

I could stare at this tank for hours.  When I am not working, I usually am. It’s right off the kitchen, so I see it easily.  The cat joins me.  Together, we watch the fish swim.  We watch the frog float like an astronaut through space.

For many nights this past month, Adahlia and I have been sleeping in a tent in the backyard. It rarely rains, so we can see the sky though the mesh.  We like it.  It is fresh, freeing, and somehow feels right.

At her last Chinese herbal appointment, Adahlia told my mentor, “When I sleep outside I have good dreams.  When I sleep in my house I have bad and sad dreams.”  This surprised me.  Yet, many times, as she lies asleep in my arms outside, she starts sleep-giggling. 

At night, I wish Adahlia sweet dreams, and tell her that she is my shining star.

She replies:  “You are my flying fish.” 

And now I must go fetch her from her first day.  Lov,e

Time travel

There are those who say, “time marches on.”  Many will quip, “history repeats itself.”  

Amongst such folks, the general consensus is that time is not generous nor forgiving. It moves forward only.  You cannot go back. Or, as still others like to advise, “you cannot change the past.”

But, there are those who say otherwise.

Some people, most of them on the fringe of normal society, say you can heal events not only in the present, but forward and backward through time.

For me, that was one of THOSE things.  You know, something that a Teacher says to you that is stated simply, clearly, and decisively and exists for them regardless of whatever anyone else has to say on the matter.  Something that hits you like a whollop.  Something that sets them a bit apart, and makes you wonder who, exactly, it is that you’re speaking to.  And what, exactly, is possible.

Though my Teacher was the first person who ever spoke to me about this subject at any length (and didn’t get immediately get categorized by my scientific and bougousie mind as crazy), she was far from alone.  In the healing community, moving forward and backward through time, viewing time as something fluid, not recorded, is not that strange.  And while I wonder at how many people have successfully done it, the truth is that it IS possible.

You can heal events that happened long ago.  You can remove the trauma or “wound” of such events.  You can change how that event was experienced, processed, and stored in the body.  

And if you can change the relevance or meaning of the past,  then, yes, you change not only the past, but also the present and future.

Just yesterday, I’m not certain why exactly, my partner felt compelled to say that he saw a thing where Tony Robbins worked with a guy who had been stuttering since he had learned to talk.  Robbins asked him about his earliest memory, asked him to go there mentally, and did (according to my partner) “some sort of tapping thing.” 

(It was probably EFT or a derivative, which is based on the acupuncture energy channels, and has to do with freeing “stuck” energy from key reservoirs of energy information in the body.)

According to my partner, with Robbins’ encouragement to go back into that moment, the man began shouting, and visibly had some sort of huge catharsis.  

And then, as if it had never existed, the stutter was gone.

Why share all this?

Well, first of all, because it’s important information.  The idea that we can release or change the trauma of our past is both empowering and liberating.

Second, because it explains a bit of my current approach to Adahlia.  No, I’m not going to stop the diet or herbs or anything else.  But I’m ready to add something new.

You see, she has a “genetic” blood disorder.  I am the most likely carrier (for reasons we don’t need to go into again as I’ve stated them in earlier posts), and I probably have “non-classical DBA,” which means I have the gene but am able to make my own blood.  We now believe my grandmothers first daughter, my mother’s older sister, who “happens” to share my own birthdate (just many decades prior), died at 4 months of DBA, and that her rural hospital simply did not know what to do with the ailing child.  

(Aside: in the healing circles such as I’ve mentioned, it’s not likely a coincidence that I share this deceased child’s birthday. Also, her name was Carol Ann.)

Here’s the thing, friends.

Genetic diseases have triggers.

DNA is a fluid molecule, capable of changing and “storing” experiences as changes to itself. And let’s be honest: we understand very little about it.  Most of it we’ve labeled “junk” and say it seems to have no purpose.

(Right. Because we can point to so much of Nature and say, “there is no purpose to those wings that bird has,” or “see, humans have gills they don’t need,” or whatever.  No, Nature abhors a vacuum. There is a critter for every niche.  And Nature doesn’t (and wouldn’t) waste a lot of energy creating and copying vast strings of information that serve no function.)

And, if you can go “back in time” and change information processing and storage in a living person, then  you can also affect such trauma through generations. As my Teacher professed, you can heal one person, and release countless through the line, both forward and back.

At this point, I cannot number the ways, therapies, herbs, foods, and other “things” I’ve done to try to heal my daughter.  And like I’ve said, they have not been futile.  She’s come a long way in many ways.  

But she still doesn’t make enough red blood cells to survive.

And I’m starting to grasp the meaning of a psychic’s suggestion that the answer I’m looking for for her won’t be found in conventional medicine.

I’m starting to go back to my energy healing roots, and to wonder if it may not be found in diet or herbs either.

There is a “stress” and hormonal component to DBA expression. 

There is a suggestion of some sort of event or trauma, something so “bad” it was encoded into the family line.

Something that sometimes expresses itself, effectively saying, “This planet ain’t safe and good.  We are out of here.  We are going back up to the spirit realm.”

I’m starting to think that my next step is to play (it’s actually intense work, who am I kidding, but it’s cool work) with these ideas more deeply.

I’m starting to think that I need to renew and readdress traumas she may have experienced in the womb or shortly after birth.

I need to see if I can lift a trauma that perhaps happened hundreds of years ago, to an unknown person of our line.  

I need to see if I can “re-write” at least the expression of our code, if not the actual material.  

And if I could… It would be the greatest gift I could ever give this family.

With Adahlias DBA, traveling through the US is difficult.  She gets low in blood after 2 weeks.  There are concerns about flying.  Extended stay anywhere is impossible.  Travel out of the country… just a lost dream.

And such restriction has been hard on my wandering soul.

But perhaps I’ve been missing an opportunity.

Whenever one door closes, another opens.

Perhaps it’s time for me to explore and own for myself those reality-shattering understandings my Teacher held.  To make them more than recited and theoretical knowledge, but truly real in the only way that exists — through personal knowledge or experience.

Perhaps, it is time for time travel.

I don’t know if I can do it.

But I think it’s time to try.

If you are one of my healer-friends who also exist on the fringe of normal, I would appreciate all your love, light, and energetic support as I walk into this new dark.  

Lov,e

When are we going to be happy?

These heartbreaking words were mournfully uttered by Adahlia, this morning, after she spit out her broth on her clothes and, sighing, I had to go find her a change of clothes before I could take her to “camp.” (Its really just her preschool, and there’s not much difference between playing at “school” and playing at “camp,” and that’s fine with me.  It’s just about childcare at this point, so that we can make ends meet.)

Honestly, this mama is tired.

And I agree with Adahia whole-heartedly.

Unfortunately, I have no good news to report.  She only went 3.5 weeks between transfusions.  Her hemaglobin dropped rapidly in the last 6 days, from 9.1 to 7.2.  (That’s rapid.)  We didn’t get home from the hospital yesterday until 8 pm.  The transfusion took so long because she’s begun making antibodies to donated blood.  This is not good news.  The only consolation here is that there are over 20 antibody types — so while, yes, it will get trickier and trickier to find safe blood for her, there’s not yet “a need to panic.”

Great.

She hasn’t been taking her Chinese herbs — she stopped a few weeks ago as she started complaining of belly pain and even vomiting after taking them.  Plus, ever since her birthday on July 3rd, we’ve been “cheating” on her diet, giving her gluten-free this or that, or other treats.  Is any of this connected to her “burning through” her blood?

I don’t know.

Honestly, this sucks.  I’m trying super, super hard to remain positive but I’m pretty low.  And I appreciate this blog, and the readers, and hope you don’t feel I’m dumping on you.  It does me a world of good to be able to convey what weighs on my heart.  I hope it doesn’t affect your day negatively; that is certainly not my intention.

In many ways, Adahlia is incredibly healthy.  And I would have NEVER guessed how low she was in blood based on how she both looks and acts.  So I know that all the support we’ve been doing for her system has helped…

… I just agree with her.  I want it to be easier.  I would love to be able to feed her breakfast, without nagging at her to drink her vegetable juice or broth.  I would love to just give her the food she likes.  I would love to not give her medicine every day, multiple times per day.  I would love to not feel bad about not giving her medicine or missing a dose.

People aren’t supposed to live like this, honestly.  Every day shouldn’t be full of the pressure of what must be done because we are trying to save her life and crossing our fingers that something will work.  That’s kind of what it comes down to.

I am tempted to give it all up.  To just pretend like I know nothing, and to just eat whatever we want.  To stop doing herbal medicines and drinking broth and juicing fresh vegetables.

Like Adahlia, I just want us to be happy.  I want it better.  Its been so hard.

But I also know myself, and I know that there is little chance I’ll give up.

We are considering steroids again.  And, honestly, I’m not sure if I can do that.  Its so much to ask of me… when it comes to medicine and motherhood, in a way, ignorance is bliss.  And considering how I’m knowledgeable about how steroids burn out the adrenals and cause adrenal insufficiency, can cause diabetes and all sorts of hormonal/endocrine problems… and joint problems, and bone problems… yes, even in children… and they taste nasty, fellow DBA moms have stories of their children literally spitting it back it their face… so again, it would be yet another nasty medicine I’m forcing on her… and stories of moms who say that their child goes into rages after every dose of steroids… that they must endure 2 hours of hitting, hair-pulling, and screaming….

At least, with the Chinese medicine, yes, it doesn’t taste good, but I have known it only to be helping.  Not hurting.  (Up until this last formula anyway.  We are baffled as to why she vomited it back up.)   With steroids, I would know I am poisoning her.  That I am destroying her deepest energy reserves.  Even if it does “work” and help her make blood.

And the idea of doing that to her just rips me apart inside.  God, it just sucks.

But honestly, we don’t have time to dwell on it sucking, either.  I gotta leave for training for my new job.  I am grateful for it, even though I certainly never imagined myself doing it.

What is it? Bartending.  Something I did about 8 years ago, and I was overqualified for it back then.  But that’s okay.  The owner and manager are nice, and the atmosphere is friendly and open.  Its a Tibetan fusion restaurant, so the place is all mandalas and fresh herbs and wood carvings and even a real prayer wheel.  Its a brand-new restaurant.

Honestly, I am looking forward to it.  Working in medicine gets so HEAVY.  And my family has enough heavy.  I live it daily; I can’t escape it.   And the funny thing is, people deeply appreciate the healing work I do; they are amazed by it; they value it.  After providing a treatment to someone, the atmosphere is different.  Lighter.  Opened.  Expansive.

But healing often challenges people to give up things they don’t want to give up.  To change in uncomfortable ways.  And its tough.  People aren’t sure they can go through the dark to get to the light.  (Heck, sometimes, I’m not even sure I can.)

People kind of just want it to be better, now.  And many don’t understand that reiki and acupuncture have the ability to indeed make it better, right now, and immediately.  But they do know that a stiff drink will make them feel better.

People just want to be happy.

And cocktails are fun and festive. Even glamorous.

And I get it; I really do.

My schedule is now even more daunting … somehow, I’ll be making three meals per day plus snacks for the three of us comprised only of whole foods and no grains or starches, and simmering broths and grinding juices, and preparing up to four medicines for Adahlia per day, and bartending three nights a week plus one day shift, and offering acupuncture and health services at least two days a week and doing my writing and integrative advocacy work, as well as all the other chores that come from running a household. 

It’s a lot.  But the situation demands it.  These past two years, we’ve been earning just enough to be slowly back-sliding.  We need a big change in income if we are going to keep eating this way, purchasing medicines and supplements, or I am ever going to open a clinic that operates at its own location (i.e., it has its own full-time address, and is not a dedicated space out of my home or operated part-time at someone else’s place).   This new routine will be exhausting, but it offers the potential for change.  And it might also be fun.

May we all feel good, truly good, about who we are, and where we are, right now.

Lov,e.

 

Is God a Monster?

People certainly think I’m crazy.  

No, not everyone.  I actually do have my friends and admirers.  But  there is no denying I am strange, and that’s evidenced in many ways, such as how I take my daughter’s words seriously.

No, not all of them.  I do see that some of it is babble or mere repetition of what she’s heard elsewhere.  But some of it is her own thought. 

And some of it “sounds” different.  It “sounds” “true.”

Which has nothing to do with the words themselves.

So at the risk of appearing even stranger than I already do, I want to tell you about something.

Adahlia tells me that God is a monster.

The first time she said this, I was shocked.  I’m not sure if I replied at all. 

Now, I do not press my experiences of God on her, for better or worse, and I do not follow a clear religious routine or faith doctrine.  What I do follow is deeply personal and is a result of my own revelations.  But because I do want her to feel a presence in this world, to know that many of us have felt or met something that exists, and that this “thing” does seem to care for us, I have told her a bit about God, and various faiths, and approaches to truth.

For example, one night, I told her that I love her, and that God loves her, and that God made everything, including her, and lives inside her, and within all life.

I have certainly never said that God is a monster.

But this is what she tells me.

Typically it is said very matter-of-fact.  At times, I’ll admit, I’ve said, “please don’t say that; that’s not true,” because it literally pains my poor heart to hear it.

But it got me thinking: Is God monstrous?

My daughter and I were stranded this past weekend in a city where we knew no one.  The SW airlines disaster.   It was, in a word, horrible.  An absolute debacle.  So miserable there was actually a bit of humor in it.  The worst Charlie-Foxtrot I’ve ever had the pleasure of participating in.  (And I’ve been in the military.  I’m no stranger to the CF.)

I could go on and on about how insane it was, but the bottom line is that I finally gave up and got us to a hotel room a little after 2 am.  She was strangely wired, but eventually fell asleep, and we did not sleep well or long.  

The next morning, lying amongst pillows and sheets, I asked her about her dreams. I like to hear her dreams; they are interesting to me, like all of her.

She replied: “God is a monster.  I dreamed about God.”

Since this was perhaps the fifth time she’s told me that God is a monster, but the first time she’s told me she’s dreamt of God, I decided to try to figure out what she meant.  See if her dream could provide context clues.

“What do you mean, God is a monster? Tell me about your dream.”

She repeated exactly the same information.  

I pressed for more.  “Do you mean He is big and powerful, like a monster?  Or do you mean He is mean?”

“God is mean.  He doesn’t love me,” she confirmed.  

“Oh no, that just cannot be true,” I replied.

“He doesn’t want me to live on this planet anymore,” she said.  

“He doesn’t?” 

“No.”

“Do you?” I asked, because recently, she has been saying she ‘doesn’t want to live on this planet’ a lot, whenever she gets very upset.  Her teachers have even noticed it, and expressed concern.  

She considered my question.

“God doesn’t want me to live on this planet, but I want to live on this planet!” 

She then began pinching my cheeks and squiggling around and calling me ‘squishy-mama’, and I knew our conversation was over.

Adahlia is a complex little being. Just yesterday I lifted her out of a courtesy shuttle and she blinked her eyes in the sunshine, saying, “This is amazing!  This is an amazing planet!”

And if someone lets her talk to him or her for even a minute, she’ll go off on how people are polluting the planet, and we must stop hurting our planet, and she is very mad at the people polluting the planet.

It’s kind of mind-blowing. 

And I’m not entirely sure what to think of her assertations about God being a monster.  

God certainly IS powerful. I could see how such power is perceivable as monstrous. And certainly, the Old Testament God is capable of some pretty vengeful wrath.

And I’m not saying that God doesn’t necessarily have a monstrous vengeful aspect to Him.  I mean it’s God, God’s like the definition of ‘anything is possible.’

But that wasn’t the God I met. God was pretty patient with me.  (And I know how to try patience.)

God chose to love me instead of crushing me like a bug.

So… What to think?

Honestly, I don’t know.  

I do think it’s interesting, especially given my recent interactions with Jehovah Witnesses, who interpret the Bible as teaching that blood transfusions are forbidden, and believe that to transfuse a child with another’s blood robs God of what He is trying to claim.  I wrote a Facebook post about it as an inquiry into the question of human connection, of compassion, of love.

Less than 24 hours later, my daughter, who has been told nothing and heard nothing of my conversations regarding blood transfusions and God, tells me that God doesn’t want her to live on this planet anymore.

Huh.

Any way you slice it, that’s peculiar.

Well, I suppose I might be making my God angry now.  Maybe it IS wrong to accept blood transfusion, and to give it to one’s child.  Blood is, after all, a powerful substance.  It is said to carry the spirit or soul in nearly every spiritual tradition.  Despite our scientific advancements and knowledge of its biochemistry, it cannot be replicated or “faked” or substituted for.  It is the yin container for our yang spirit in Chinese Medicine.

But really? God would prefer us to let our children die?  We are not supposed to preserve and fight for their lives?

I find that so hard to believe. 

Just as hard to believe as God being a monster.

What about the sanctity of life?

This post has no point.  Like most of my wanderings, it is mostly an invitation to question. 

But I don’t want my child’s God to be a monster.  I want Him to love her.  

And I don’t want Him to take her.

So if He wants to, I’m really super sorry, and I might pay the price for my rebellion, but I am going to go against Him.  He’s going to have to take her in a way that I cannot prevent or delay.

He’s God.

If He really wants her, He can do it. It’s not like I can stop Him.

And if she’s really not supposed to be here, well, I gotta admit, in a way, I’m a bit jealous.  What has He got in store for her?  Where is she supposed to be?  What is this “date” that’s so important, it can’t wait another 80 years?

Again, I’m sorry, but You gave her to me.  Willful, rebellious, irreverent, goofy, fierce, me.  So You had to know this might happen.  

She’s Yours; always has been.  Not mine; never has been.  I’m her protector, not her owner.  And I’m one of few moms who really believe that, who has always believed that, who’s always known it to be true in her heart, that even though this child is my soul friend and entrusted to me, that she is not mine.  She belongs to herself.  And, ultimately, to You.

You can take her if you really want, because I know I cannot stop You.  

But if You do this sort of tug-of-war for her, I’ll go to my grave pulling on the rope.

Because You gave her to my care.

And I love her. 

And if you cure her miraculously, I’ll be really, really, really happy. 

(Huh? How’s that for an ending to this story?? Wouldn’t that be fun?)

You do love me, You told me so yourself, so that does kind of give credence to the idea that You’re a bit monstrous.  I should think You’d let my life be a little better.  Cut me some slack.  Give me a break.  Hold the rain.  Part the clouds.  Shine a little sunshine.

Things haven’t exactly gone well for me.

I’ve lost so much.

(Pretty much since meeting You, I’d like to point out.)

But I still trust You.

Which only goes to show how smart You are, because if You hadn’t let me see what I’ve seen, heard what I’ve heard, there’s no way I’d be trusting You now. 

Belief stopped working for me long ago. I needed to know for myself.

You’re so smart. Monster or not, it kind of makes me love You more.

Causation 

Everyone, all of us, wants to know the cause.

Because, it stands to reason, that if we know the cause, we will know the cure.

And the prevention.

Homelessness is caused by laziness.  Bad luck.  Stupidity.  Drunkenness.  Karma.

Illness is caused by genetics.  Nutrition.  Stress.  Offending God (or the gods).  The health-stricken man or woman is getting his or her “just desserts” for being a workaholic or an asshole or a bitch… or for simply being weak.  (And thus, such people should be avoided.  Or at the very least, we should only talk to them once things have turned around for them.)

Good things happen because we are good people.  Blessed.  Hardworking.  Virtuous. Smart. God-loving.  God-fearing.  Strong.  Favored.  Chosen.  Lucky.

And maybe that’s believable, maybe, as long as you are born into a country where upwards mobility is possible and you find affluence and health and you manage to stay that way.  (And you wear blinders.)

But, sooner or later, the bubble has to pop.

You see, my friends, I know what I’m talking about.  I’m no stranger to bad luck.  (I’ve been abused.)  And really good luck, too.  (I was “the pretty one” born into an affluent, respected family.)

And then, more really, really, bad luck.

I’ve analyzed it and meditated on it, and thought about it six ways to Sunday.

And here’s what I think:

I think you can take all our self-serving beliefs (and self-limiting beliefs) about what causes good things to happen to certain people and why some people have terrible things happen to them…

…and shove them.

Because here’s the thing:  When you attribute good life events to hard work or to respecting God, when you imply that some people are blessed in some way, or are “chosen” or “favored,” then the very strong implication is that those who experience misfortune have “earned” it, too, or somehow lost God’s favor.

Now, I’m not saying things aren’t connected.  They are indeed.  Things are connected in complex, miraculous, beautiful ways that we can’t fathom.

And that’s the key:

That we can’t fathom.

When we start to try to pinpoint them, to fathom them, to draw conclusions and causation, we mess up.  We confuse ourselves.

We put ourselves on a false and unsteady pedestal.  If we fall, we’ll either have to hypocritically excuse ourselves, or we’ll suddenly have to consider that perhaps we aren’t, after all, God’s favorites.

When we draw simplistic causation, we alienate people.  We teach our children wrongly.

So stop it.  Stop saying stupid, self-aggrandizing things.

We can work our butts off, and we can be smart as a whip, and there’s no guarantee that things will work out.  That we’ll succeed.

And if that happens to you, it doesn’t mean that you’ve pissed off God, or that you deserve it.

It means that success didn’t happen.  Period.

(At least this time.  Keep trying or open yourself up to trying something new.)

Dropping our obsession with causation means that we stop torturing ourselves when things don’t turn out well.

And we stop patting ourselves on the back because we’re healthy, wealthy, or otherwise.

A couple weeks ago, I made a call to a woman who refers to herself as a “healers healer.”  Basically, she acknowledges that she does the work of helping to heal the healers, so that they can go back out and help other people.

She did a distance reading of me, and a spiritual healing, and yes, my fellow skeptic and scientific friends, she was psychic and legit and as real as you or I. She saw things she couldn’t have possibly seen or known, etc, etc.

I eventually told her of my daughter and I’s story. Like the other psychics and healers (including myself), whom I have consulted regarding my daughter and her apparent inability to make her own red blood cells, she said, “There’s nothing wrong with her.”

Nothing has been so mystifying.  After all, if nothing is indeed “wrong,” why is she slowly dying every month by not making her own blood?

The healer said other things too, like, “Of course, you know that the answer you’re looking for will not come from Western Medicine; it cannot cure her.”

She noted the cloud of sorrow around me, of the grief I carry. She helped me let some of it go.  I cried a lot.

I told her how I had realized a wound of some sort in the maternal family line.  How I had prayed, while pregnant, that my daughter would be freed from it.  But in doing so, it had not occurred to me that “breaking free” would mean that we would go so deeply into it.  I could not have imagined DBA.  I had thought it was an emotional, mental, energetic problem.

And how foolish of me!  Of one who knows the connections between the physical, emotional, mental, and spiritual.  How foolish… I guess I had not ‘known’ the connection deeply enough, or I never would have asked for my child to be freed from it.  Especially because I know that to be free of anything, you must go into (or through) the challenge.  You must transform it, and thus yourself.  You don’t get to just identify it and bypass it.

And of course, this ultimately led to my supposition that I caused this problem for my child.  Through improper handling of stress, diet, or even just thinking that something was wrong at all.

At which point, she said to me:

“Erika, you did not cause this.  There is nothing you could have done.  Please hear me:  You did NOT cause this.  

You’re psychic.  You read this.”

You read this.

I have never once had anyone say those word to me.  It was immediately soothing to my tormented heart.

And I think back, now, to how so many things seemed to conspire against me in that pregnancy.  I was in a car accident in the 2nd month.  I worked in a detox center and was surrounded by people emitting toxins.  I moved in with a partner who was stressed about a job he felt “stuck” in.  I was finishing my 4th year of graduate school and a masters thesis and was taking board exams. A stressful family visit made me feel angry, sad, and isolated.

And that’s not all.

It seemed like no matter what I did, I couldn’t have a peaceful, uneventful pregnancy.  I chose novels to read at random, and they turned out to be about the holocaust, about sacrificing and abandoning one’s own children, about miscarriage, and about infanticide.

In the third trimester, my right kidney failed, repeatedly, flooding my body with pain neurotransmitters and stress hormones, and my right chi pulse, the one carrying the pulse of my child, dropped out with it.

Yet, the whole while, I tried to do the right thing.  I went swimming.  I stretched.  I meditated.  I did reiki and self-healing.  I did qi gong.  I laughed.  I played.  I finally found books that were safe (PG Wodehouse… an author of nothing but ridiculous British humor) and stuck to them, refusing to take chances on any other novels.  I obtained the minimum necessary board certification and gave up pursuit of additional certifications (much to the ridicule of my ego).  I stopped interacting with anyone who seemed to not understand me or stress me out.

I took fabulous semi-nude and naked pictures of myself and my belly/baby.  I received chiropractic care, acupuncture, and massage.  I made myself healthy meals.   The moment I sensed something was wrong, I sought the advice and herbs of a master Chinese herbalist for pregnancy.  I sat in the garden.  I sang songs.  I wrote a journal to my baby, and poems, and stories.  I went bravely into a completely natural childbirth.

There is nothing you could have done.  You read this.

Will I let myself believe that?  Will I let myself accept that?

Will I let myself off the hook for my daughter’s illness?

Will I believe that her embodiment of DBA, this illness, is somehow necessary? That the fates or Gods or whoever, had destined this for us, and that no matter how prepared I was, no matter how vast and varied the tools I knew and know to promote a healthy pregnancy, that my efforts would be foiled?

That my daughter chose this life, this challenge, like a warrior choosing to enter the fray?

That it is part of some sort of plan?

That I read this?

That I tried my best to change our fates, but I could not, for it was not the cup for me to take away?

I think so.

Yes.  I might.

I do.

And do I believe that because you have not been stricken down, that because you are affluent, or healthy, or have survived your “health scare,” or have otherwise have emerged triumphant in life, that you are the blessed, the hard-working, the favored, the righteous?

No. No, I do not.

But you are lucky, my friend.  Know it and be humble, generous, and kind.
For fortunes can change overnight.

And Life is Paradox.

Yes, we have power in our lives.  We can make choices.  And these choices do affect us, and the people we love.

But we are also part of something larger.  Something that we do not control. (If we did, we would all be wealthy and immortal, would we not?)

We are not THE creators of the universe.  We are co-creators.

We have enormous power and we are mere servants.

There is Free Will and there is Destiny.

It’s not one or the other.  Its both.

And trust me, I get it:  It’s a lot to wrap one’s head around.  It is, in fact, unfathomable.

And that’s the way it’s supposed to be.  Because it’s the way it is.

It’s part of the mystery, and part of the beauty.

And honestly, I’m not sure, but I think we might be lucky to be here at all.

The Night Before…

It’s the night before Adahlia’s 4th birthday.

And I had just written a quick Facebook post about how excited we all were… how I’m spoiling her, but I can’t help it, because every month its a miracle she’s still here, and with all the complications and big health scares, she is still, somehow, about to celebrate four years with us (nearly five if you count the time in my belly).

We finished icing her cake and cupcakes, decorated as per her request: pink icing, star sprinkles, flowers, butterflies, a bumblebee making honey, Hamiya (our cat), and her own name.

And then, as I’m getting her ready for bed, she says:  “I can’t wait for my last birthday!”

And then:  “Tomorrow is my last birthday!”

“Last” birthday?  Such as phrase has never escaped her mouth before.

She’s always said “fourth” birthday.

Each time she said “last birthday,” my jaw tightened.  My muscles around my heart constricted and I stopped breathing.

So, naturally, I could not say anything.

And once that moment passed, both times, I merely continued the joyful exclamations:  “It’s going to be wonderful!  I can’t wait!”

But, I mean, shit.

And all I have to say to Spirit on that one, is NO.

Of course, I understand that I really don’t have much of a say, ultimately, though I’m free to put up as much of a fight as I want, and to make my desires and intentions plainly known, as a co-creator of the divine plan.

And my vote is:  No!

I mean, come on.

Why am I relaying this to you all?  Why am I being “Miss Debbie Downer” right before her birthday, on a super holiday weekend promising all sorts of delights?

Well, because I’ve promised to write this blog honestly.  And while I do still promise to follow up this post with joyful pictures of her birthday celebrations, I also need to share that this happened.

Because it sucked.  It cast a bit of a shadow.   Ignorance is bliss… right?

Maybe.  But maybe we’re not meant to remain ignorant children forever.

Maybe we’re meant to figure out how to be joyful even when Shit SUCKS.

And so, maybe its a gift.

Because truth is, I cannot tell the future.  Is there anyway to know if this was just the random babbling of a child or the revelation of heavenly prophecy?  No.

Just in case, I’ll be sure to live it up tomorrow.  To make this weekend — and this upcoming year of her life — the most FANTASTIC series of moments yet.

Dammit, I WILL find a way to dance in the rain and not give a hoot about the future.

About any false and meaningless constructs.

I will break into a enlightened state of being where the future doesn’t exist and therefore does not need to be feared or mourned, despite what anyone (of any title, degree, or reality) tells me to the contrary.  A place where nothing exists except what is.

And that’s the fact that she’s still alive, we’re both still here playing, and anything can happen.

Adahlia has become very adamant recently that she doesn’t want any more transfusions.  The other day, she skinned her knee very badly and it bled profusely.  Exalted, she showed it to me, saying:  “Look, Mama, I AM making my own blood!”

Whether she is or not, I know it is up to me to find a way to clear the grief and sorrow of motherhood just as surely as all of its ignorant joys (joys that can be so easily squashed), to make room for something brighter, something everlasting, something timeless.

Something true.

Its a heck of a soul challenge — these sorrows and joys of motherhood are ancient, biblical, and have been ingrained into the very fabric of our DNA… but I accept.

I will clear it.  I will live in Light and Wisdom.  I will move into and through and transcend this experience.

And as I work to reclaim and remain cognizant of this ultimate reality, if you have a moment on Sunday, July 3rd, I want you to picture Adahlia in your mind, surrounded by a bubble of bright golden light.  And I want you to see this light pouring into her, infusing her, igniting the diamond-white light of her own life force, and then flowing back out again in an even brighter bubble of golden and diamond light, a light that will sustain, keep, and protect her for twenty, thirty, and even sixty more years.

Thanks for coming along on this ride.

Lov,e.

 

A quick note of love

This is is just a quick note of love, to share how my child awes me.  We expect she will need a blood transfusion on Monday (in less than 48 hours).

What I’m about to share has all happened within the last 36 hrs.

At night, before falling asleep:  “I need a new body,” she tells me, lying in the dark.

“You do?” I ask. 

“You need a new body, too,” she adds.

“We both need new ones, huh.” 

“Yes.”

“Well, it’s kind of tricky to get new bodies… And I really love you and want to stay here with you. So let’s keep these ones as long as we can.” 

Then, more for myself for than for her, I add: “If we do need new bodies, God will help us find ones where we can be together again.”

She cuddles up, wraps her arms around me, and sings songs about how much she loves me.

The next morning, we are petting the cat together. He tries to squiggle out of her arms and eventually succeeds.  She begins to cry.  So I catch the cat and we re-locate to the sofa. I wrap her and the cat together in a blanket knit by one of her aunts. (We call it the Rainbow Blanket – often it becomes a princess dress for her to walk regally through the house as I sing that tune they play for the Queen of England… or it becomes a mermaid tail.)  

I lie next to them.  They are wrapped together tight.  The cat is not amused.

“He has a grumpy face,” she says.

I giggle.  “He does,” I agree.

“Hamiya,” she says, “even though you’re grumpy, you love and accept yourself exactly as you are.”

I stifle another giggle and tell her that’s a wonderful idea.  I do EFT tapping on the cat’s head and repeat the affirmation for him as she holds him.  He does seem to relax a bit.

“Is he feeling better now?”

“Yes,” she says.

Later that day, she is playing in the bathtub as I am detangling her hair.  

“You have to accept yourself as you are,” she tells her baby frog toy. “What?” She replies as baby frog.  “Say, ‘I accept my body exactly as it is,'” she tells the frog.

“What? Where’d you learn that? Who says that?” I ask.

“I say that,” she replies, “every morning, when I leave my friends [she names them] and come to the Mama Planet.”

I smile. “This is the Mama Planet?”

“Yes, when I open my eyes I come to the Mama Planet.”

And then, we are getting ready for bed and she won’t put on her pajamas.  She protests that she wants to sleep in her dress.

“It’s beautiful,” she says, “I want to look beautiful to see [her friends in her dreams].”

“Oh,” we say, her dad and I, in unison.

So of course, we let her.  Because who can argue with wanting to wear your most beautiful dress when you leave Earth for the friends who live in your dreams?

***

Good Saturday morning, Mama Planet.  🙂  May you all be blessed with a beautiful day!

A perfect 10

It’ll be 3 weeks since Adahlias last transfusion on this coming Thursday.  Her Hb was 10.0.  We needed to check it because we are headed to visit some grandparents (I’ll be at a seminar while she’ll be frolicking in the AZ sun) and I wanted to be sure she’d be safe to fly in the 3-4 week post-transfusion range.

This is great news.  Unprecedented? No, she did almost exactly the same thing in February.  But, I’m encouraged.

Since adjusting her diet, she no longer needs the Chinese and auyervedic herbs to fight subclinical infection.  Her herbs are now all blood-builders.  

“Grown-up herbs,” my mentor noted, the sort of herbs women commonly are prescribed to rebuild themselves.  Not the sort of herbs you typically give to a child.

She’s been on them for approximately a month now.  

And then going through some notes, I realized that many of the  times when Adahlia has retic’d (i.e., made baby red blood cells, albeit only some and not enough to negate the need for transfusion) I had been heavily using peppermint oil.

Now that her belly is healing (not perfect yet, but healing), she’s no longer fighting infection, and her body is requesting the blood building herbs, maybe it is time to bring the peppermint oil back out.  

The body is wise.  It is not going to invest energy in rebuilding a compromised system. But if the system is overhauled… Integrity restored… 

Perhaps now that she’s digesting better and is stronger, her body will be ready to “keep her here” by making her own blood.  

That’s what it’s saying anyway, with the request for these herbs.

And that’s not all.

I’ve been doing Reiki with her since she was in the womb.  Sometimes she’d take the energy, and other times, it didn’t seem to do anything. 

She takes it now.  It’s very strong.  And I’ve also been stimulating two acupuncture points that she is especially receptive to.  She melts for shonishin (Japanese acupressure) and reiki at these points.  I have even found her stimulating those points herself by gently tapping herself with the tip of a pen at these points.

It was astounding.
So it’s progress.  It’s possible.  

It’s happening.

Please continue sending prayers and love.  Now is the time we leave these troubles behind.

❤️

Growth, Potential, Patience

Without much time to spare, here’s the news:

  • Adahlia received a transfusion last week at 4.5 weeks.  Her Hb was 8.1.
  • Her ferretin was 314.  (Last month was 320.)
  • Her reticulocytes remained non-existent.
  • But she is now in the 85th percentile for weight-for-height.  (Last month she was almost at the 80th.)

This is huge.  Why?

  • I believe Adahlia’s ferretin is lower than reported.  (This is the marker of iron overload.)  Why do I think it is lower than 314?  Because she had a cold last week.  Viruses tend to create a rise in inflammation, and inflammation increases ferretin.  This means her iron overload was likely measured higher than it really is. In reality, it is likely lower than 314.  It means her worst-case scenario is that her iron overload situation is holding steady.  What it means is that her real ferretin measure (if she wasn’t suffering a cold) is likely much lower.  Perhaps as low as 150 or 200.  Now of course, since ferretin measures inflammation as well as iron overload (and is actually is a pretty unreliable indicator of iron overload status once overloaded), what we really might be measuring is a huge drop in systemic inflammation.  And after polling some peers, it seems that most DBA kids get stuck at a ferretin plateau of 700-800 … Even though they continue daily chelation.
  • Adahlia was tracking along at the 50th percentile for weight-for-height for her entire young life up until 3 months ago.  In just 3 months time, she has shot up to the 85th percentile.  When she jumped 30 percentiles in two months I was psyched. Amazed.  And I figured it was over.  I figured she’d hold steady.  But in the next month, she added enough mass to make it into the next 5th percentile?  Its almost unfathomable.

What on earth is going on?  

I believe she is healing internally.  Systemic inflammation underlies nearly every chronic disease process.  If her body is indeed showing us that it is resolving systemic inflammation, in addition to iron overload, then that means she is healing.  It means, at the very very least, that the extra iron in her cells — or something — is at least not causing as much of an inflammatory response.  It means that her body is not under as much stress and self-destruction.  Will it mean that she makes her own red blood cells again?  I don’t know.

Does it mean we are normalizing and optimizing her digestion?  Definitely.

And that means anything is possible.  She is growing.   Her body is demonstrating significant potential to heal.  She is claiming herself.  Building herself.

Now, all we need is patience.

Observation, curiosity, persistence, awareness, perception …

Patience…

and Prayer.  Please keep sending us your love and prayer!  We can do this.