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.  


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.”


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.