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

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.

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!

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.

❤️

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.