Hello Friends,

Just a quick note to say that its been over 4 weeks (as of yesterday) and Adahlia hasn’t had a blood transfusion.  Her hemaglobin was 9.1 (!!) on Thursday when we checked it (one day shy of 4 weeks).  A week ago, it was 9.4.  It has barely dropped!

To my knowledge, Adahlia’s hemaglobin has NEVER before been above 9.0 at 4 weeks past transfusion.  That’s almost normal for a little one!  (Normal toddler range can be as low as 10.2 according to some sources.)

In other news, Adahlia and I enjoyed her first-ever marshmallow roast with our lovely neighbors and friends last night in our backyard.  The adults were from Maui, HI – one couple has a five year old daughter and lives right beneath us, and one couple just moved here to Portland and has a 2 year old son.  We also enjoyed the company of the five year old’s 13 year old uncle and two boys from down the street.  It was a magical, low-key evening — one of those times when you realize you are living in paradise, or that an everyday moment of life can feel like a vacation.

Here’s a photo of Adahlia after eating a roasted marshmallow… she loved the ‘mallow but wasn’t a fan of the sticky fingers that result!

Where ever we roam, I know my heart belongs to the energy of Portland, Portland people, HI folks, and the HI lifestyle.

Adahlia’s First-Ever Roasted Marshmallow!

Keep sending love and positive vibes!

Love and light to you and yours.

Warmly, Erika

My goodness!  I haven’t updated this in so long.  Adahlia is sleeping and so much has happened that I doubt I’ll be able to finish it before she wakes from her nap.  I always wonder: should I talk medical stuff first, or should I update readers on the wonderful little things she does?  Maybe today I’ll mix it up.

Adahlia, excited for adventures, ready for her Hb check.  6-20-14

Medically, here’s the short of it:  She’s not cured yet. She’s had two transfusions since I wrote my last post (Apr 30).  But that’s okay.  Things have been rather wild…

Surfing.  I’ve written before about finding center, about standing still (or remaining fixed in your direction) while everything spins and changes.  About finding one’s calm in the center of chaos.  This is a similar theme, and  inspired by Adahlia herself – because she’s become quite the surfer.

Soon after she was first born, I noted and described Adahlia as a little climber.  Whether it was pulling herself up my shoulder or trying to angle for a higher position, she’s always had one thing in common with goats (for those of you familiar with goats):

She wants to go up!

It’s still true.  These days, she climbs onto anything she can.  Things that move:   the rocking chair I painted years ago (decorated with elephants and flowers).  Things that don’t move: the table, the counter, the sofa.  She climbs onto her wooden rocking horse decorated with dahlias (a gift from Joe’s side of the family) and then, she stands.  Holding onto to nothing, she grins, bends her knees, bounces and rocks a little… and surfs!

Its dangerous, sure, and she needs a spotter… but its fabulous.

She loves to do things like this. Today, she balance-beam walked along a curb.  (She wouldn’t take my hand.)  She does this along a cement-block garden retaining fence.  She sees kids climbing our backyard tree and she wants to do it, too.  If it goes vertical, if it involves balance and danger, she’s all about it.

What’s more? When she falls, typically, she laughs.

These days, in the swing, she loves getting what we call “a spinning underdog.”  Surely, you’re familiar with the old-time favorite, the underdog.  But like going up, Adahlia has a penchant for spinning.  Whether in our arms or on her bum or on her feet or on the merri-go-round, Adahlia loves to go “around and around and around and around!”   (Especially if someone — like myself, or a sock-puppet — is chanting:  “around and around and around and around!” until “boom!” she falls on her butt, again, laughing.)  In the swing, with spinning underdogs provided by myself or the little 5-year-old girl who lives below us (whom Adahlia absolutely adores), Adahlia shrieks, leans her head back to look at the tree branches or the sky, and giggles.)

Today, we went to get Adahlia’s hemaglobin (Hb) checked.  As I said, since I’ve written my last post, she’s had 2 transfusions.

Today, Adahlia is 3 weeks from her last transfusion.  And it was 9.4!!!   Since her first stay in the hospital, when they had to raise her Hb from 1.9 to 12 over a period of days, I have never had anyone tell me that her Hb was anything higher than somewhere in the 8s.  This means that next week (at four weeks), her Hb will probably be 8.5 or higher, which means she’ll go five weeks probably until transfusion (or longer!)  Of course, her Hb could plummet, and we always have to be prepared for that.  But this is FANTASTIC.

So what’s happened?  Well, soon after that last celebratory post, where Adahlia’s Hb was 8.3 at four weeks, her Hb plummeted.  In just a week’s time, it dropped down to 6.8.   She ended up going 5 weeks and 3 days before we transfused her, but since she dropped so fast I can’t really say she went a full 5 weeks.  I ended up having to get her into the hospital on fast-notice, because it was really obvious that her health was declining sharply.

During that time, that time she was doing better, I had started doing a new homeopathic spagyric medicine to help her energy descend downwards.  For the sake of everyone’s sanity, I won’t go into details here.  In the hopes it would work even better at increased levels, I increased it during that last week (and her Hb plummeted.  Hmmmm.)

After she was transfused, I decided to adjust my methods. Instead of encouraging her body to do what I wanted (supportive therapy), I decided to try again to clear it of things that might be hindering it from doing what it needed to do.  So I began a series of homeopathic spagyrics designed to cleanse the intracellular matrix from microbial toxins.  I did this, knowing it could make her worse, but also knowing that sometimes things get worse (stirred up) before they get better (just think of a fever that clears an infection).   While on this regime, Adahlia only went 3.5 weeks between transfusions, and she had a very rough time.  For the first week, she had ridiculous diarrhea.  Her diarrhea was so acidic, in fact, that it actually BURNED her skin.  I’m not kidding.  She would go to the bathroom, and make the sign for “hot.”  And I’m not kidding, her skin on her poor bottom peeled off.  The diarrhea smelled horrible; it looked horrible.  But the medicine was doing something.  And we did everything we could to support her during this process. After about 7-10 days, her diarrhea cleared up, but her nose began to run.  It was a thick, yellowish goop that was more of the consistency of a slug than of mucus.  It took a about 2 weeks for that to clear up, and she was fairly symptom-free by the time of her transfusion at 3.5 weeks.

I wasn’t sure if her body was done doing what it needed to do, but I decided to give it a break.  So for the last 3 weeks, since her transfusion, we’ve gone back to doing just the chinese herbs (as far as alternative medicines are concerned).  She takes them eagerly.  We also, of course, are still doing the Exjade to rid her body of excess iron, and those numbers are going down, albeit slowly.  At last check her ferretin was in the 1200s.  She’s also taking probiotics and the vitamins and amino acids she showed a deficiency in last Fall, but not as regularly as we probably should be taking them.  She’s also still taking AFA blue-green algae, because her body again showed a need for it when we had her tested at the chinese and natural herbalist.

Its pretty exciting that her Hb is doing well — 9.4 at 3 weeks post-transfusion isn’t shabby!  But we’ve learned a lot through this process, and one of the things we’ve learned is that it IS all about surfing.  About riding the highs and lows.  About finding that center-point and allowing the wildness to swirl about you and through you, without destroying you.

These days, Adahlia still doesn’t talk much.  She signs.  Her favorite signs these days are “two thumbs up” — which she learned from Red Yarn (her favorite children’s musician) — and “share”.   When I ask her if she wants to go to the park, she’ll nod and make the sign for “share.”  Its a beautiful sign, where you use your left hand like a platter holding a piece of cake, and your right hand like a blade cutting cake, and you divide the imaginary cake in half, using your blade-hand to scoot half towards the person opposite you, and half towards yourself.  To share:  some for you, and some for me.

It’s not easy to share.  Most adults would like to think they share well, but really, the truth is that we don’t.  And before you ‘tsk tsk’ on behalf of all those bad-mannered adults who aren’t good sharers like you, just imagine:  How does the idea of sharing your spouse — even with the kind and loving and amazing person — strike you?  No?  You see my point.  🙂

I’m sure that stirred up a bit of “well that’s an extreme example!”  but for little kids, everything they have is about as important to them as the notions of the exclusivity of a spouse.  They are quick to claim their moms when another little kid starts angling for attention or love.  Shoot, they don’t even like their dad asking for a bit of mom’s attention.  Their toys are THEIR toys and such is their whole world.  To share is a broad-minded and advanced concept, much like that of personal responsibility to others or to the planet (to not litter, to turn off the lights, etc.)

Well, we’ve been working on sharing for the past month.  And Adahlia’s gotten really good at it!  When I say we are going to the pool or park, she makes the sign for “share” and I say, “Yes! We are going to get a chance to share.”  When a child wants her toy, I ask her if its okay, if she wants to share.  She’ll point to her chest to say, its mine.  I’ll say, “Yes, its your octopus, and you can have it when he’s done.  Will you share?”  And she’ll smile, and nod, and make the sign to share.  Of course, there are limits (She once pointed to a little boy on a bike in the park, and made the “share” sign, and I told her we couldn’t share the bike, that she was too little to ride it yet, but soon.)  On more than one occasion, she’s also gone up to her father or I when we’ve been on the computer and told us to “share.”  Very amusing!

The “two thumbs up” sign is what Red Yarn does when he asks his audience to put one thumb up if they want to sing and give him two thumbs up if they want to dance.  Adahlia will be in the kitchen or in the carseat and say “mama.”  When I look, she’s got two thumbs up.  I do the thumbs up and exclaim: “put two thumbs up if you want to dance!” and then she sticks out her pointer fingers (kind of like guns) and moves them back and forth in a shoulder-shimmying, wild-west dancing way.

There are too many adorable Adahlia stories to recount.  She has a garden and she loves tending it with me.  She tells me we need to water the plants and she points each plant out to me so that I will exclaim about how well they’ve grown.  She can go up and down stairs on her own now, and she’s done it for a few weeks.  (24 months is the developmental milestone for that feat — so she’s a couple weeks ahead.)   She also can pick out nearly all the letters from the alphabet.  If you say, “find the D. Duh-duh-D.  Dinosaur.  Dog.  Duh-duh-D.”  she’ll pick it out.  I think she’s remember the pictures and letters associated with them from her various books (Dr. Seuss’s ABCs, Native American Art ABCs, Animal ABCs, etc.) Her ability to do this is most obvious when she plays with her LeapFrog learning laptop.  But I must say:  I’m not a huge fan of electronic toys, and up until a couple months ago, she hardly ever used it.  Its often hidden on a shelf – she’s maybe used it a total of a few hours over its entire lifespan.

Adahlia has also started counting.  I first noticed it a couple weeks ago when she pointed at the umbrellas outside of Cha!Cha!Cha! and said:  “beh! beh!”  (That’s how she says ‘umbrella’.)    Then she held up three fingers.   I flipped out.   I pulled out my phone and took a picture of us both smiling and holding up three fingers.

She does this often now — she shows me where there’s two dogs, or three flowers.

And she IS starting to speak more.  She calls the little girl below us “yana” for Aiyana and she calls the little boy down the street “bop-ah” for “papa”  (everyone, including his parents, call him “papa” — He’s five.)

Yesterday, she saw a honeybee in the roses and said “bee!”  She watched it gather pollen intently and I described how he was storing the pollen on his legs to take home to make honey.  Fabulous.

Adahlia still loves music and dancing.  She has pretty good rhythm already, and will stomp and clap to Red Yarn and most other music.

Adahlia clapping along with Red Yarn

She loves to stomp-clap pretty much everywhere we go, while I sing.  She’ll tap her toes to music, like she sees Mr. Ben (another musician) or her dad do when they play guitar, or she’ll lightly slap her fingers on her thighs to the beat, also like her daddy does.  I’ve sung her the “Five Little Speckled Frogs” song and “Five Little Ducks” songs that most kids learn in preschool, and she loves them.  I taught her some signs for them, and she’ll do the signs sometimes even to herself, as though she’s hearing the melody in her head.  She also, of course, still loves the Itsy Bitsy Spider and claps enthusiastically for the spider at the end, when he determinedly goes back up the spout.

So here we are, going back up the spout.  If Adahlia’s body has cleared something and her bone marrow is on the way to recovery — well, goodness, I would be thrilled on so many levels. But, if it isn’t, if we end up doing another round of the spagyrics to try to clear out her body again, or if I try something else, well, that’s okay too.

I had a dream a couple weeks ago, in which I was sitting at a large table with many people of many ethnicity.  (Dream analysts will often say that the people in your dreams are actually aspects of yourself.)   To my right was a wise woman, dressed like a hindu.  Across from her was a young woman.  The young woman was troubled.  She had a big problem.  I asked the wise woman what the young woman should do.

The wise woman turned to the young woman and said:  “How low can you go?”

The young woman’s pupils got wider and wider, until her brown irises were just rings around deep pools.  The irises began to spin, and her irises were flames, and I began to be afraid.  I began to breathe deeply to calm myself, and to let it happen.  I watched as the woman’s eyes spun around unknowable depths, and I knew she was changing, that she receiving and internalizing the transmission of great wisdom, which knows no words.

Today, Adahlia is officially 4 weeks, 2 days since her last transfusion.

I had a different post half-way finished — one I will still post, because its full of lovely, general updates on Adahlia’s life — but I had to post this one first:

Today (Weds, Apr 30), we had Adahlia’s Hb checked via finger poke at her pediatrician’s office.  It was 8.3.  Last Friday (Apr 25), it was 8.2.

That’s right.  Her blood counts are not only holding steady, they may even be increasing!

And though its a little too early to say that with confidence (there is a degree of error in any blood test, so you have to allow that the true number could be either higher and lower), you can certainlpy say with confidence what her hospital nurse said, which was:

<GASP!>  “She’s holding!”

But I must say it, because it is very important to my own heart to say it:

This is the first time EVER — I repeat, FIRST TIME EVER — that her Hb has gone up.

EVER.

Seriously, EVER!

I mean it.

EVER!!!!

…and that’s HUGE.

Hooray!!!!!!!

I cannot express what it would mean to me if she didn’t have to have transfusions anymore.  If she made her own blood.  It would be, quite simply, miraculous.

So, how did we celebrate?  Well, of course, we cancelled the transfusion we had scheduled for this coming Friday, and pushed it out another week. This is the second time in a row I’ve been able to cancel her transfusion (she was originally supposed to be transfused this past Monday, which would have been 4 weeks.)  Let me tell you, having to hold her and allow the hospital to give her an IV every month, that nothing sweeter comes to mind than getting to cancel a transfusion… unless of course, its cancelling two transfusions.

So back to celebration.  Well, it happens to be an incredible day here in Portland — sunny and 80 degrees.  It being Wednesday, we went to the Red Yarn concert, held at 10 am, by donation, for kiddos at Village Ballroom.  She danced, made friends in the funny little way toddlers make friends, and got to pet and feed a couple puppets (a snake, a groundhog, and a squirrel).  After, we came home, I pushed her in her backyard swing for awhile, we packed a picnic, and then we rode to the nearby park for a lunch of peanut-butter on cinnamon-raisin bagel, avocado, cottage cheese, and raspberries.  We played on swings and slides and she took off her shoes so we could spin barefoot in the grass.  Then we rode home again, taking a circuitous route because she told me she wanted more bicycle riding, and then now she is taking a nap on the bed, in all her naked-baby glory (except, of course, the necessary diaper.)

I could tell you all sorts of stories about how Adahlia loves bicycle riding. She has a front-seat, mounted on the handlebars of my bike, which is wonderful because it allows her to see and to feel a part of the big-people action. The seat is called an iBert and its fabulous.  It even has an unobtrusive little steering wheel so she can (pretend) steer.  But what is even better is when we take a turn – I tell her: “we’re going to take a right turn… put your arm out with me!) and she makes the signal with me.  Now, to be fair, her “left turn” and “right turn” look pretty much the same.  But its still wicked cute.  She absolutely LOVES riding the bike.  And she LOVES wearing her Bell Faction helmet.  Last night was our first ride, and I have a feeling we’ll be doing it daily.

So, I could tell you stories.  But I’ll save those to say simply that we are so happy and hopeful that this is a sign of Adahlia’s bone marrow kicking in to make its own RBCs.  We are doing lots of increased-intensity alternative and natural therapies for her, and of course giving lots of love and prayers.

Thank you so much for all your continued love, prayers, light, and energy.  Please continue to see her in vibrant health and wellness!

Love and light to you and yours.

Last night, for an unknown reason, I woke up in the middle of the night.  My stomach tightened as, for no discernible reason, I began to worry about what might happen if one day Adahlia wandered off.  And then I thought about how sad it is when people steal children.  And I thought about how everyone who meets Adahlia pretty much falls in love with her.  And then, like a crazy person myself, I couldn’t stop thinking or shake the sickening feeling as I imagined looking over from conversation or gardening and discovering that she was gone.

Now, I’m not a risk-adverse person.  And I know what I am about to say might shock you or make you “tsk-tsk” but its the truth.  I like risks.  I like challenges.  They are part of Life and I find them enjoyable.  In the sliding scale of “adventurer” on the extreme left and “worrier” on the extreme right, I am definitely further to the left side than the right.  And I don’t think being a mom — if I had been a mom of a rather typical or healthy child — would have changed that.  Because it didn’t affect my pregnancy.

For example:

When just about a month pregnant, I zip-lined the over treetops in a haunted forest, spinning in my rope seat, arms out wide as I exclaimed in exuberance to the baby in my belly: “We’re flying!”  Then, when I was about 3 months pregnant, I insisted to Joe that we go skiing and, yes, I did tumble in the snow… three times… and each time, I laughed.  And when it came time to give birth, I chose natural, drug-free labor and delivery even though my right kidney had been swelling all throughout our last trimester, causing bouts of kidney colic and extreme pain that left me bedridden every few weeks.  I didn’t freak out.  I was excited, not scared, and I gave birth like a champ.  I certainly didn’t want any unnecessary medical intervention for me, or my baby.

Now, maybe you think such things are foolish, or even stupid.  But I didn’t and still don’t.  I took and take what I consider calculated risks, and I still consider them worth it.

So, no, I don’t think that as a regular mom, I’d be lying awake at night worrying that my daughter might disappear on me.

But, as a DBA mom, you bet your buttons that last night I did indeed lie awake… for hours.

Because let’s be honest.  A healthy little girl always has a fighting chance at survival if she disappears, especially if she is smart.  But lets say Adahlia wanders away: even if someone meant well and wanted to take good care of her but was afraid of the law, she’s only got 3-5 weeks at the most.  Worst case: let’s say it happens when she is days from needing a transfusion (like now).  Or let’s say we get into an accident of some sort and I’m unconscious or dead, but she survives and is wounded and bleeding.  What are the odds of survival for a little girl who doesn’t make her own red blood cells and nobody knows?

And I realized:  the time has come for a medical ID bracelet.

So I ordered one.

Fact:  There are not many toddler-sized medical ID bracelets.

This is a good thing.

But having to shop for one is sad.

I finally found one I liked; one that I could put up to 5 lines of information on the inside of a sterling silver ID, so her information would be more private.  The front says “see other side” and medics undo a piece of velcro to turn it over to read it.  The plaque is mounted on a kid-friendly, pink velcro nylon looking bracelet.  I also ordered the bracelet in purple, as the plaque can be changed out onto different colored bracelets.  Its only 4.5″-5.5″ long.

I put a lot of thought into what should go on the plaque.  In the end, I chose:

Her name.  Her blood type.   Her diagnosis and what it means: “DBA Red Cell Aplasia”.  The words “Needs blood transfusions.”  My contact info:  “Mom: xxx-xxx-xxxx.”

And then I thought:  But again, what if I am available or unconscious myself?  How can I make sure she’s taken care of if no one knows what her most current medical situation is?  In DBA, a child’s medical situation can change drastically in a month, due to iron overload issues and many others.  Just giving her blood might not be enough.  Well-intended but ignorant doctors simply wouldn’t know what labs to order, tests to run, and interventions to give.  And DBA is so rare that the truth is that most doctors are indeed ignorant of the disorder.  Most have never even heard of it.

So I put the name of her hospital followed by “pt” for patient.

This way, I figure, if she is lost and found, they will try to contact me.  And if they can’t reach me, they will contact the hospital.  Medical and other authorities will be able to call and say that they found one of their patients.  They could access her nurses and doctors, and her record if necessary.  And I know her nurses and doctors would immediately jump to help her.  In an emergency, they would eagerly take over her care, or give directions to whatever hospital has her in their possession at the moment.  Shoot, maybe the ambulance would just take her directly to her hospital.  Who knows?

…

Sigh.

This is the life of a DBA mom.

Yet, I think I will sleep a little bit better, tonight.

And before I go to sleep, if you are reading this blog, say a quick prayer to the sales girl at the baby resale / consignment shop who, in conversation, randomly told me that her little son had died. How she was looking forward to trying to get pregnant again some day.

I did not mention Adahlia’s condition.

What is a DBA diagnosis to a woman who has lost her own child?  A gift.

I can’t imagine how she manages to come to work at a baby store every day.

When we finally were released to go home from the hospital after Adahlia’s original week-long hospitalization due to severe anemia, when her hemaglobin had been brought up safely from only 1.9 – barely life-sustaining – and the doctors had confessed that they were worried her heart would fail at any moment, which is why they wouldn’t let me nurse her, because digestion might take the few, vital blood cells away from her heart… well, it was a day of mixed feelings.   I remember coming through the door and staring at all the baby stuff scattered throughout the house.   Feeling a bit out-of-body and thinking how strange all the bright and gay baby items looked in this new light, this near-tragedy that all the doctors had made a concerted effort to tell us wasn’t over.  Was just beginning.  All those little items of hope and joy looked, well, like a lost dream.  And I told Joe:

“If we hadn’t taken her in when we did… or if she’d died… coming home to this… I couldn’t have…”

And he had nodded.  “I know.”

Goodness, friends, what we endure in this life!  Oh, its amazing.  We are amazing people on this tough, beautiful, and challenging planet.

Love to all.

Adahlia is 17 days post-transfusion, or a little over half-way until her next one.  Its been so long since I updated readers on her silly ways that I thought I take a moment to share them.

Adahlia has several great passions these days, and pointing out buses and airplanes is one of them.  As we walk or drive, she will spot a bus and exclaim gleefully:  “ooo-ooooo!!” Doesn’t matter if its a school bus, city bus, short bus, or other bus — if its a big people-mover, she’s excited.

Its the same way for airplanes.  She’ll shout out an eager  “oooo-ooo!”  when she spots one and point it emphatically at it until whoever she’s with also registers the airplane.  Whenever she hears a plane or a siren that she can’t see, she points to her ear to let us know she’s hearing something.  She’s also started combining signs — she’ll point to her ear and then make the sign for bird to let us know that she hears a bird singing.

Adahlia also makes conversation:  She’ll also do a combination of signs when sitting with us at the table, adding in a myriad of facial expressions, babbles, grunts, gestures, and shoulder shrugs.  Its fantastic.  When I reply with “oh” or “really?” or “no!”  she’ll nod, or shake her head, and continue ‘talking’.  Its not unlike watching the base coach at a baseball game — they are utterly baffling, seemingly nonsensical, and very amusing, especially because they are so completely absorbed and serious about it.

Today was garbage day.  On garbage day, she’ll hear the big trucks roar up and ask me to lift her onto the counter so she can watch them from the kitchen window.  Up on the third floor, we’re at bird level.  Just the other day, we saw a scrub jay on the gutter less than an arms reach from the window.  Beautiful!

Adahlia adores water.  She’s got a pair of splashers with eyes and a mouth on the toes (each boot is supposed to be a butterfly) and after a good rain (or while its still raining!) we walk from puddle to puddle, stomping.   She remembers where the best puddles are and its impossible to tear her away from them until they’ve been good and splashed.

After her evening bath, I wrap her in her hooded towel that we’ve had since she was a newborn.  Its organic cotton — white with pale green trim.  She used to hate the hood but now she loves it.  She will tuck her chin so no one can see her face and walk out into the living room with her arms holding the towel shut around her.  She looks like a little monk, or ewok.  Then she’ll open her arms and flap them, while holding onto the towel’s edges, so that she has wings.  “Flap! Flap! Flap!  Fly away little birdie!”  I say.  She giggles.

She’s still digs music and bobs her head to the beat when we’re driving, gazing out the windows and well… grooving.  She loves the Mr. Ben and Red Yarn shows we attend almost weekly.  She likes to walk up to grownups she doesn’t know and begin dancing in front of them, bending her knees and bobbing side to side, until they start to dance too.  Then she breaks into a big smile and runs off.

Yes, runs.  She runs now.  She still needs a hand to go up and down steps but she’s off like a shot on level surfaces.

Adahlia likes to feed her stuffed animals and doll.  She’ll hold a water bottle up to their mouths so they can drink, too.  Sometimes, she also wants me to put socks and shoes on her husky puppy, one of her favorite animals.  Dogs remain one of her most favorite creatures — whenever she sees one, she barks “arf! arf!” and points or pats her leg to sign ‘dog.’

She’s got a thing for hats.  She gets excited when she sees a hat she really likes, and she often begs me to wear my wide sunhat around the house.  Her face lights up when I put it on, the way a boy’s face lights up when a girl wears a dress he favors.  She can be something of a tyrant about it — she knows what she wants and if she wants me to wear a hat, or put an otter puppet on my hand and to talk to her through him, well, she’ll warble plaintively until she gets her way.

We still go to playgrounds often, but we also recently found a red plastic baby swing at a local kids consignment shop.  There’s an amazing plum tree in our backyard, with a branch absolutely perfect, simply begging, for a swing.  In fact, it was one of the first things I thought the first time I saw the backyard.  I had planned to make an old-fashioned board and rope deal, but when I saw this, I couldn’t resist.  Its much safer… perfect for her age… and she loves it.

Adahlia’s a super-big helper around the house.  She loves the laundry room and always wants to go with me to wash clothes.  She also loves being carried back up the stairs in the laundry basket, perched like the princess and the pea on top of all the clean clothes.  In the apartment, she’ll help me dump them out onto the floor and after I’ve folded certain items, she’ll go put them in a drawer.

She’s mastered the art of getting into the big old rocking chair, and she likes to pull herself up into it so she can rock back and forth.

Adahlia still breastfeeds, but she also eats better now than she ever did before.  For awhile, I had to try every trick I could think of in order to get her to eat.  I would say, “Eat like a wolf!” and, growling, take a big, exaggerated bite of whatever I was trying to get her to eat.  She would laugh and mimic me.  But it worked.  I also tried everything I could think of to get her to take the blue-green algae supplement.  (Blue-green algae does a great job of removing toxins like heavy metals from the body, and it also helps with blood production.  Additionally, Adahlia ‘tested strongly positive’ for it, meaning that she needs it, and its important to me to give her the supplements she needs when she needs them.)  Nothing could get her to take the algae though — and I discovered why when I smelled it — it’s nasty!  (The manufacturers put it in capsules for a reason.)  Finally, I mixed it into a couple baby spoonfuls of vanillla ice cream.

Eureka!  Adahlia gobbled it up, and a new flavor — Algae Ice Cream — was born.  (Perhaps we’ll see it next at Jeni’s or Salt and Straw?)

Adahlia eating avocado

Adahlia is still taking several other vitamin supplements, as I am still working off the nutritional analysis we did for her back in the Fall. She is growing well and steadily.  It still seems as though the only real DBA sign she has is the issue with making enough blood.  She is still taking exjade to remove excess iron from transfusions from her system.  Exjade is chalky and she is never eager to take it… but she always does, eventually.

Adahlia is also taking the homeopathic spagyrics for her digestion (they seem to be working) as well as yet another formula of chinese herbs designed specifically for her.  As she has changed over time, the formula has changed.  Gradually, we are needing less and less of the extreme herbs.  Unlike Exjade, Adahlia eagerly takes the homeopathics and the chinese herbs.  Seeing the formula move towards a less drastic, healthier-person formula, builds confidence in me that we will continue to see Adahlia improve until she is better.  Perhaps all better.  Perhaps no longer needing transfusions.

DBA is a very tricky blood disorder.  When I describe it to natural medicine professionals, they all remark on how it sounds like an autoimmune condition.  And I always confess that though biomedicine says no, I secretly agree.  Of course, there is a genetic component to DBA.   But there is a genetic component to most disease.  Having the gene for something doesn’t mean it will be expressed and that you will suffer from it.  And it doesn’t mean that you can’t get it to go away, or heal it, or work with it.

If there is an autoimmune component to DBA, well, that isn’t exactly a great diagnosis — it is very, very hard to turn an autoimmune condition “off” once its been turned “on.”

Yet, it isn’t impossible.

These past few days, I’ve also been doing daily intensive reiki treatments with Adahlia.  She seems to really enjoy it, and they’ve been strong sessions.  I give her a little full-body massage afterwards, too, and she completely relaxes it.  It amuses me greatly.

Adahlia can do this.  She knows how to make red blood cells and she has the vitality and power to make more of them.  To cure herself.   I know it in my bones.

For my part, I am doing absolutely everything I can, from all medical perspectives I know, to assist her in that process.

And in the meantime, I put an otter puppet on my hand and a wide sun hat on my head, and we play!

Where to start.

Let’s see.  Well, Adahlia is now over 21 months old.  She’s had roughly 24 transfusions in 21 months.

Her 24th transfusion was last week.  The week prior, at 3 weeks since her last transfusion, I took her to get her Hb tested via a finger prick at her pediatrician (a relatively painless way to check for low blood levels, see Mama Bear for the battle I fought to get it done for her on a routine basis).  Adahlia’s Hb was 8.1.  Since we transfuse at 8.0, I figured we would definitely transfuse at our hospital appointment the following week.

So, we checked into the hematology/oncology clinic and Adahlia had an IV placed.  It was more painful for her this time, and I’m not sure why.  But it was one of those moments when I suddenly felt like I could feel what she was feeling, and the needle was sharp.  Adahlia screamed and reached out and pulled away and arched her back and tossed her head and cried giant tears. I held.

We waited for her numbers to came back and I anticipated a Hb around 7.3.  But it was only 8.0!  To drop a tenth of a point over a week’s time is nearly unprecedented – perhaps back in November 2012 something similar happened, but that’s it.  The other good news was that Adahlia’s reticulocyte absolute count (baby RBCs) was 16, which is higher than its been for at least the last 6 months.  Her white cells were in normal range, too, which is wonderful, especially since the medication she’s on (exjade) can cause them to decline.

The doctors gave me the option to go another week before transfusion and I called Joe to conference about it, but we decided to go ahead and transfuse instead of waiting a week.  Pros for waiting include fewer total transfusions, which means fewer risks associated with transfusions, including antibody reactions and iron overload.  But, we are already doing medication for iron overload and the pros for transfusing:  a happier and higher-functioning Adahlia with energy to eat and play and grow, outweighed the cons.  Plus, I had a surgery myself scheduled in 10 days.  A much-anticipated, tried-every-possible-other-solution, we-cant-guarantee-this-will-work-even-if-we’re-right-about-what-we-think-is-wrong-but-its-your-only-real-option-at-this-point, and you-wont-be-able-to-lift-your-daughter-for-a-month-if-we-can-do-this-laproscopically-or-two-months-if-we-have-to-open-you-up-but-we-wont-know-til-we’re-in-there type of surgery.  I wanted Adahlia healthy prior to it.

All things considered, I was very happy about Adahlia’s numbers.  The transfusion was going well.  Then, while Adahlia was practicing climbing in and out of the little red car they have in the play area, her doctor came to see me.

“I got the numbers back for Adahlia’s ferritin and I need to talk to you about it — but I don’t want you to freak out,” she said.

Okay  I thought.  This was the last thing I expected.  In fact, I had expected Adahlia’s numbers to be low enough to possibly take her off Exjade, the iron reducing medication.  (Repeat blood transfusions can lead to a build-up of iron in the blood, which gets deposited in the organs, leading to things like heart and liver failure.)  After a month of a half-dosage of the medication, Adahlia’s ferretin had dropped from the mid-800s to the mid-600s, and was last measured at 618.  What was it now?  800 again?  900?  It didn’t make sense for it to rise if she was still taking the medication but that’s okay, we could figure it out.

“Tell me, ” I said.  “I wont freak out.”

She hesitated a moment before reading in my eyes that I meant it.

“Its 1680,” she replied.

I couldn’t help it.  My eyebrows shot up.  But my voice stayed firm.

“Six-teen-80?”

“Yes, 1680.”

A second passed, and then another.

“1680,” I said again, as if tasting the number on my tongue, to see if it was real.

“Yes, she said, and she moved towards me to show me on paper.

Then we were silent, the number hanging in the air like a badminton shuttle on a updraft.

“It has to be a mistake.  Can they retest?”

“I called down and left a message to see if there was something weird with the sample, or maybe the machine’s acting up.  It could be an error… ”

Exactly!

“Maybe they mistyped a “1” in front of the real number when they input it into the system,” I offered.

“Maybe,” she agreed.

Then, we were quiet again.

“If they have enough blood left from her earlier draw, I’ll see if they can rerun the test.”

I nodded.  But I picked up Adahlia and returned us to our curtained bay, shaken.

What could this be?

I contacted Joe with the news, and confessed to him what I hadn’t told Adahlia’s doctor:  I wasn’t entirely surprised.  You see, the foremost experts on DBA are the doctors and nurses of a special team in NY, and I (like most parents of kids with DBA) consult with a member of their team before every major decision is made.  The nurse on their team offers her consultation freely, because this disorder is so rare, so devastating, and they are desperately trying to collect patient information and connect the data points to understand it.

The NY nurse had warned me that a lesser dose of exjade (Adahlia was on a half dose instead of the standard dose) could result in iron getting redeposited back into the tissues.  According to the nurse, the exjade would be enough to pull it out of the organ but not enough to flush it out of the body, and so it could get redeposited, making the situation worse.

Well, that didn’t make any sense to me.  The half-dose was working — by every measure, her iron was dropping.   We (her local doctors and I) had her on a half-dose because she was only 18 months when we started it, and exjade was only approved for children over age 2.  I didn’t want her taking any more of it than was necessary, and since a half-dose was working, well, we’d stick with a half-dose.  (Some children have suffered loss of hearing, loss of vision, stomach bleeding, intestinal hemorrhage, and even kidney failure from taking exjade.)

Later, during the transfusion, Adahlia’s doctor came back and reported that Adahlia’s ferretin test was re-run and came back at 1500.  Still too high.  I told her what I had been warned about by the NY experts.  Adahlia’s doctor shook her head.

“I’ve never heard of that and it doesn’t make sense to me.  Exjade attaches to the iron and carries it out of the body; the body flushes out the exjade with the iron attached.  It shouldn’t redeposit it just because there’s not a lot of exjade in the system.”

I agreed that it didn’t make sense to me, either.  She said she’d look into it further.

“So, if its not due to taking a half-dose, then what’s happening?”

She hesitated.

“I think its possibly a normal fluctuation.  Ferretin is not an exact measurement — it shows a trend over time.  Let’s up her dosage to the standard dose and retest it in a week or two to see if it is dropping, or at least holding steady.”

I agreed.

And then I called NY.

I told them about the situation, expecting to be reprimanded about not heeding their warning, but much to my surprise, they didn’t seem to think it was due to a half-dosage.

“Has she had a fever recently?  Is she teething or has she had a virus?”  the nurse asked.

Yes, actually, she had a fever a couple nights ago because she’s getting in her last four teeth.

“Ferretin is an imperfect measurement.  It really provides more of a trend over time than any hard data.  If there is any inflammation in the system – due to a virus, or a teething fever – then the ferretin reading will go up.  But, its nothing to worry about and will go back down.”

Oh.

“When would you recheck it?  Is a week too soon?”

“I’d actually wait until the next transfusion.”

“Really?”  Again, I was surprised.  “So, this isn’t a dangerous situation?   I don’t have to worry about her going into organ failure?”

“Well, it is and it isn’t.   She isn’t likely to go into organ failure because the kids who’ve gone into organ failure have been having transfusions for years, and its built up over that time.  Now, if her iron continues to go up, then yes, its dangerous. But a reading of 1680 isn’t necessarily dangerous in and of itself.  Some adults with DBA have ferretin counts in the 2000s and 3000s and they are okay.  What really matters is how much of that iron is actually in the heart and liver.  That you wont know until she gets a T2* test, which is done via an MRI, and we don’t recommend it for your daughter because she’s so little they’d have to sedate her for the test, and we don’t want to do that unless absolutely necessary, because there are risks with sedation.”

I tell you.  Every single transfusion this game changes a little.  Every few weeks, I learn something new.  Sometimes, its contradictory.  Usually, its apparent that the doctors are learning too.  Always, it blows my mind and leaves me like a palm tree, standing tall but imperceptibly swaying, swaying.

On Monday, April 14th, it’ll be two weeks since her transfusion, and though we’ve considered taking her to get a ferretin reading, I won’t.  They can’t get enough blood for a ferretin test via a finger poke, and I’m not willing to let them puncture her veins with a needle just for this reading — her veins are too precious — we are trying to keep them intact and avoid having to give her a port for as long as possible.

Besides, I also found out that though her ferretin has risen, her iron transferrin percent saturation has dropped from 90% to 70%.  This is a good thing.  This means that her blood has more “movers” available to carry out the iron — they are only 70% saturated with iron.  This was accomplished with only the half-dose.  Now that we are doing the full dose, I expect it will drop much further.

Now, according to NY, they don’t typically start seeing loss of vision and hearing with this medication until the saturation drops below 40%.  I do expect it to drop to 40% over this month, since its already dropped so much with just a half-dose.  If it does, I will most likely pull Adahlia off the medication (under the supervision of her local doctors, of course.)  NY advises against it — they suggest I keep her on it indefinitely in order to prevent the iron from building up.  But, I will not risk her vision and hearing.  I would much rather simply keep monitoring her iron levels very closely, and once they start rising again, begin re-administering exjade to chelate the iron.

(It would also give her body a break from the medication, which could only be good for her liver and kidneys.  It would give them a chance to rebound and heal a bit from all the work it takes to process exjade out of the body.)

The only “trick” to this is that the ferretin can fall to relatively low levels and there can still be dangerous iron overload in the organs.  For whatever reason, the Exjade simply doesn’t work to remove the iron from the organs, and when a t2* MRI is finally done, the situation is found to be actually be life-threatening.  But there is no way of knowing this until the MRI is performed.  In such cases, a stronger chelation medication, administered via an IV over a period of several days, is given to the child immediately.

So perhaps, if we are so lucky as to find out that Adahlia’s iron has dropped very significantly, I will be able to pull her off Exjade for awhile, but we will have to have her sedated for an MRI, just to be safe.  More consultations with the local doctors and NY will be done before determining all that, though.

And that brings us to this week.

Tuesday was the day before my scheduled and aforementioned surgery.  As the day worn on, I began to feel increasingly anxious.  It was a beautiful day and Adahlia and I had spent it together — playing in the sun, enjoying a children’s performer sing and play guitar, while we danced and I tossed her into the air.   I carried her everywhere — relishing the fact that I could still, in fact, lift and carry her.  I tried not to think about what would happen after my mom left in two weeks and I might not be able to carry her up and down our apartment stairs.  I tried not to think about her reaching up for me and me having to decline to pick her up.  I tried not to think about how she so often kicks my belly when we sleep together, and how I might be in too much pain to sleep near her and breastfeed her once I was released from the hospital.  I tried not to think about how I would be admitted overnight and her calling out for me in the middle of the night… and for the first time ever, me not being there.  Its not that I didn’t want to face these things.  There was simply nothing I could do about them.  The surgery had to happen.  I had no choice.

But at 3:30, I couldn’t take it anymore.  I packed up a bag and put Adahlia in the car. I was headed to the Sauvie Island beaches.  I needed to ground my bare toes in the silty sand of the riverbank.  I needed to see Adahlia laughing and playing by the water’s edge.  I needed the lapping waves and moving current to clear my head and soothe my soul.

As I drove, Adahlia fell asleep.  I turned my rearview mirror downward so I could keep an eye on her.  Traffic behind me?  Not nearly as important. I watched her head bobbing.  It felt so right to be leaving the city behind and enter the farmland.  And then it felt so right to leave the farmland behind and enter the wildlife refuge.  I parked the car, Adahlia woke up, and I carried her over the sand embankment to the river.

We played in the sand and watched a boat come up the river.  I did handstands and she laughed and I spun her in circles.  I took pictures of us together.  Then, my phone rang.

The hospital.  Not Adahlia’s, mine.

“Hello?”

“Hi,” she introduced herself.  “Did you get the voicemail I left?”

“No,” I replied.

“I left a voicemail!  Oh, well, at least I got ahold of you.  Your surgery scheduled for tomorrow is cancelled.  I wanted to call so you didn’t show up and find out here.”

Surely, I misheard.

“I’m sorry… you said its cancelled?”

“Yes, your surgeon hurt his back over the weekend and can’t perform surgery, and he’s the only one in the hospital who is able to do this type of surgery.  We have to cancel all his patients for the next two months.  We’re so sorry.”

I struggled to wrap my head around this news.  To avoid premature celebration.

“Do you have any idea when its going to be rescheduled?”

“Well, you are high on our priority, but it would be June at the earliest.”

I suddenly had an image of my surgeon.  I really liked him.  A kind, dark-eyed, fatherly man.

“Is he okay?”

“Well, yes. I don’t really know that much about it so I can’t tell you much more.  But he feels really bad about having to cancel your surgery at the last minute.  He’s going to call you himself.”

We hung up the phone and for a moment, I did nothing.  Then, I giggled.  And laughed.

I still felt awful for my surgeon, but I was so, so happy for Adahlia and myself.  It felt like a stay of execution.

Adahlia wouldn’t have to be sad.  She wouldn’t need to cry and call for me and wonder where I was.  She wouldn’t wonder why I couldn’t pick her up and I wouldn’t have to show her my stitches and she wouldn’t point at them and say in her concerned little voice, “hurt.”

It is wonderful.  Adahlia still breastfeeds. She’s teething.  By June, or July, or August, or whenever I have this surgery, she most likely won’t be.  She might be able to walk up and down stairs by herself (she already can do it, if I am holding her hand.)  Just as I’ve put off this surgery for 15 months now, stating that I cannot do it because I simply have to be here for Adahlia, I simply have to breastfeed her, especially when she’s too tired to eat real food, and I have to carry her and comfort her, especially during transfusions and when she’s low on blood and feeling awful.  I’ve put it off and undergone three surgeries (one requiring a spinal tap, the others requiring general anesthesia) in less than a year to try to stabilize my kidney and preserve whatever function remains in it.  But after the last stent failed to hold and I had to have an emergency stent placed, the doctors finally got me to agree that the time had come to “find-and-fix” the problem.

Except Adahlia still breastfeeds, especially at night.  And is teething.  And requires me to sing or hold her until she falls asleep.  And needs me to help her up and down stairs, to hold and comfort her during transfusions.

Amazingly, this can all continue, as the surgery has been postponed.  By an act of fate, or God, or…. Adahlia’s guardian angel wielding a golf club???… who knows.  It’s been postponed nonetheless.

And though I think my surgeon is a dear man, I celebrate.

The time for surgery is not now.   Adahlia’s world is secure.  I am here for her in it.

And, oh, that makes me so happy!

It goes to show how a misfortune for one (or some) is a stroke of luck for another.

How everything can change in an instant.

How one action or event ripples outward, touching more lives than can be imagined, and forever altering the future.

How fast this world turns, turns, turns.

How fast the river flows, carrying time with it.

While we rest on its shore, holding each other and spinning, letting it race by.

Its official:  I killed it.

I don’t know how I did it, and it defies my care for it, and the fact that all my other various potted plants and tree (yes, tree!) remain alive after years of my stewardship, but Adahlia’s dahlia plant is most certainly dead.

It is very upsetting.

I selected the said purple and white plant while mightily pregnant, 5 days past my due date, and the day before Adahlia was born.

3 weeks old

I had notions of them growing up together.  It spent last winter hibernating and I potted it when last year the slugs threatened to eat every struggling shoot that came up.  On her first birthday, it was in full bloom. They enjoyed a beautiful summer together.

Adahlia and her dahlia at 13 months

I left it out as the freeze came (just as I did the year prior) and it went brown and dormant, or so I thought.  We packed up and moved in February.  And a week or so ago, as I transferred the pot to the new backyard, I poked at its tuber-like root with my finger.  To my horror, the root collapsed like a mushy, wet paper bag.

<sigh>

No life in there.

Of course, I can (and we will) buy another Dahlia.  It wont, of course, have the same sentimental value.

And then I think: Do I really want a plant with that much sentimental value?  As we move from place to place, and crazy heat waves and ice storms blow through, would I really want to have to worry about its life?  Lets say 10 years from now the neighbor forgets to come water the plants while we are on vacation… and then it dies?  Imagine the anger, the frustration!  Or Adahlia goes off to college, and moves into a home of her own, is she obliged to take it with her?  Or do I hold onto this plant until I’m creaky and pouring it water from shaky hands?

Perhaps the question is:  At what point does a sweet token of remembrance become a pain-in-the-arse obligation?

Perhaps we are better off without it, I tell myself.

And then I think:

Hey, at least I didn’t accidentally kill Adahlia.

And then there’s the ridiculous moment of panic when I wonder if they are connected, and if the plant dies, then Adahlia dies!

And the following thought:  Maybe they had the opposite connection, and now that the plant is dead, she will get better.

And then I acknowledge the fact that it was a lovely plant, and yet, just a plant.  While perhaps they shared a connection, it certainly won’t pull Adahlia over to health or death.  And while I’m sad its gone, but it was a beautiful way to mark her life.

Adahlia did enjoy her plant — I would lift her up to the blossom and show her how to sniff.  I would point out the colors and teach her sign language for ‘beautiful.’  It was a wonderful token.

Perhaps now we will go pick out a Dahlia of a different color, different bloom, together.  Perhaps I’ll do some research to see where I went wrong.  And we’ll see how long we can get this one to live.

Every year, in Spring, there are blooms that do not rise.  Every year, there are some that don’t survive the winter.

It’s the part of Spring that we don’t often see, because we prefer to focus on the bulbs that survive.  Always, always, life and death are interwoven.  And yet, we shy from death and turn like sunflowers towards the living.  When forced to look at it, we grieve it.  We shudder.  We can accept it – barely – when it doesn’t happen directly to us.  We certainly don’t often celebrate it.

I am thinking of these things when I get a phone call from my mother.

Adahlia’s great-grandma was just diagnosed with a malignant cancer.  She’s over 92 years old, and the death from this particular cancer is painless.  Entirely painless.  Doctors say she will lose weight, she will lose her appetite, and she will get weaker.  But she will have all her faculties and she will feel no pain.  Then, one night, she will simply die in her sleep.

Of course, its sad that her time on earth draws to a close.  But I am no good at providing the typical comfort, the condolence, because the truth is that I think its actually wonderful.  After all, we all have to die.  If you love someone, what more can you wish for them?  A full life, hopefully happy and fulfilling (but if not, that’s on each of our own shoulders), and to die painlessly at a very old age, with plenty of time to say goodbye?   Especially if you believe in life after death, or are a person of faith, or have experienced something to inspire peace with what comes after death.  Depending upon your belief, your loved one will be free to visit and support you in a much more vibrant capacity, without the aches and pains of old age.  Its a transition, sure, but in such cases, isn’t it more of a call to celebrate a full and lucky life, and not a cause for mourning?

Or, in our culture, are we simply that far from being able to accept loss?

Perhaps watching Adahlia walk hand-in-hand with death — me holding one hand, death holding the other — never knowing when she’s going to get pulled over to the other side, and hearing from the other DBA parents about their own kids seeming fine one day, and in the hospital the next, and then dying, has made me had to look at little closer at death.  Forced me to examine it. Forced me into something of an acceptance of it. Forced me to turn towards the shadows and look at it — one solitary sunflower staring into the fog.

Perhaps it’s youthful, ignorant, and selfish, but there is a part of me that just doesn’t see the tragedy in a painless death at old age – the tragedies are the horrific deaths, the agonizing ones, the ones that happen before you get a chance to make amends or say goodbye, the ones that happen to children, and teenagers, and young parents, leaving people alone or helpless, with gaping wounds and questions.  And so I don’t think its youthful, ignorant, or selfish of me to regard my grandmother’s portentous news as a cause for more connection, more celebration, more conscious appreciation of her life until she leaves, and then celebrating some more.  I think its wise to acknowledge blessings when they are given.  To die in one’s old age painlessly is a true blessing… one that I would consider myself lucky to receive.

And yet, loss is loss.

But that just begs more questions.  Why can’t we celebrate death?  And not just when a person has lived a long life.  Why can’t we celebrate death at any age?  Might that actually make life easier?

We don’t celebrate loss and we can’t celebrate death because we don’t understand it.  We don’t know what – if anything – happens after.

I think of the recent news article of the couple that died within minutes of each other, in separate locations, with neither of them knowing that the other had died.

They were connected in some way.  And it had nothing to do with mourning the loss of the other and being unable to go on, or of being afraid of death.  One left, and then the other.

Now, to me, that makes sense.  Why wouldn’t folks come and go together?  If, after all, we are here to learn and play together, it makes sense to do it with your best soul friends.  Learn a few lessons together, get some hard knocks, and a bunch of laughs.  Gotta report back at the astral plane when its time to go, might as well do it together.  Maybe then sign up to do it all again together.  (Or maybe not.  Depending on if you lean more towards Buddhism or Christianity.)

I had a set of zebra finch once, little birds, and one died the day after the other.  Virus?  Possibly.  Heart-broken?  Maybe.  (Though she used to pull the feathers out of his neck, so I’m not quite so certain he wouldn’t have enjoyed living alone for awhile.)  Or were they connected in some other way?

With Adahlia nearing yet another transfusion, the big questions are on my mind.  And I think of my upcoming surgery. (Its a bigger deal then the past ones, and I’m not going to go into it, here).  I found it very hard to accept the fact that felt like I might die last year, when Adahlia was so little.  What about now?  Do I feel more okay with that possibility now than I did last year?  If so, why?

And, as more reports on another little girl with DBA fighting for her life due to complications from the illness flood my phone… what about Adahlia?  Is it okay if she dies?  As a race, we always find the death of infants and children tragic and upsetting.  But every breath Adahlia takes is borrowed.  Can I accept that fact?  Can I learn to breathe into my belly again, to shift out of the fight-or-flight stress response?  To look at her and see — without the illusion so nicely provided by rosy cheeks — how temporary we are?  Can I learn to not only accept it, but to thrive and laugh in it?

What a challenge.  And my own health might depend upon it.  Living in a stress response is not good for one’s health.

This journey has been interesting and I’ve come a long way.  But I’m not there yet.  Not when I go swinging with her on the playground, and shes sitting facing me, and she tucks her face into the folds of my sweatshirt so that she is nestled in from the wind, and I am singing to her the song she loves me to sing to her, the only song that calms her when she’s freaking out:

“Adahlia lies over the ocean,

Adahlia lies over the sea,

Adahlia lies over the ocean,

so bring back Adahlia to me.”

… and I have to stop singing because my voice is catching, and my throat is closing, and the words are choking… my vision getting blurry.

No, I’m not quite there yet.

I don’t know it yet in my being, though I have realized it before, when no one I truly loved was on the verge of death, that all loss is acceptable.

Fall is necessary for Winter, and Winter is necessary for Spring.  Some seeds survive the winter and grow into trees over time.  Others get eaten by deer or choked by vines.  A sudden hailstorm brings crushing Winter ice to the tender fruits of Summer; gardener’s shears bring Fall to the daffodils in Spring.  No matter what climate you might live in, this planet is not a place of eternal Summer.  The big wheel keeps turning.

And the truth is, there are wheels within wheels.  In every child, is an old man or woman.  In every joy, there is a portent of sorrow.  These things aren’t separate, they are one.  There are thousands feelings within any feeling.  There are thousands of lives given with every death, and thousands of lives will be taken to support one life.

One of the most difficult challenges in creating a peaceful heart is coming to terms with these truths and finding the place of existence, of Beauty and Oneness with all that Is, within them.

When I first realized Adahlia was sick with something I couldn’t fix, I fell into and fought through Sorrow on a daily basis.  I could rise above it, but I couldn’t escape it.

Yet, I know it is possible to live in it, yet not harmed or saddened by it.

In a similar way, it always upset me (prior to my pregnancy) how people would take such pride and joy in their children.  As if the did something to deserve a smart child, or beautiful child.  They would take these positive aspects of their children and own them.  Bask in the praise of strangers.

Such ownership is false.  Every child is her or her own being.  Its foolish, and arrogant, to act otherwise.  Besides, such joy can be taken quickly from you!  When you are high, you can be brought down.

Just look here, if you wish to see an example of how quickly tables can turn.

Perhaps the greatest gift of this journey with Adahlia is this chance for my Soul to come more fully through both Joy and Sorrow.  To rise free of them, to live with them and let them both flow through and around me, and not be swept away by them.  To be okay with Loss not just intellectually, like most of us are, but completely, so that it doesn’t exist. To truly appreciate the gifts as nothing I’ve earned or deserved, so that when they are taken from me, I can only laugh and shrug.  To live and radiate peace and confidence in Love, throughout my Being and existence.

It happens when I move into a place that I have tasted and shared moments in, but not yet been able to reside.  Where I am confident in the permanence of impermanence, of the Love and Connection that exists and holds us all up regardless of our Form, like shining stars and beacons in the night.

Blossoming on Adahlia’s Birth

Motion, motion, motion!

Everything moving in waves and circles.

Adahlia waves at new friends and turns in giggling circles.

Her reticulocyte count goes up to 11 from 5 last month, and it was 11 the previous month, and 5 the month before that.

Her hemoglobin drops and we fill it up.

We spent all last week packing, moving, and cleaning out our old home and are now settling into our new apartment. Day after day, wave after wave, of packing and unpacking boxes, walking up and down stairs, driving back and forth across Portland, from home to apartment to storage unit, as we downsized to a one bedroom apartment in the city from an upscale, two bedroom house in the ‘burbs.

And Adahlia is 20 months old today, March 3rd, or yesterday, depending on when I post this. Approaching her second anniversary of life, each of her current and future days dependent upon the bags that hang from above her right now, blood like rubies, gifts from a stranger.

Beautiful waves and circles.

She naps now, which is why I can type this. It’s been so busy, so crazy, I simply haven’t had time.

She naps now, though it is now March 4. In the span of half this post, an entire day passes!

Circles. Moments in time revisited and played again, slightly different. She napped yesterday in a hospital bed. She naps now in our shared bed in our new treehouse apartment, surrounded by the brightly colored paintings she loves. Spring comes, and it will be followed by summer. The animals are out, gathering provisions between rain showers.

Adahlia was a champ during the move. We moved the bed and big pieces of furniture over a week ago. I can hardly believe it, though my exhausted body insists in reminding me with proof. Adahlia’s life has been greatly disrupted for so long, and I am so very glad today was her first playful, normal day! Because moving to a smaller space (having to sort out what to keep in the apartment, what to store, what to give to goodwill, what to sell, and what to trash), with a little one in tow is an entirely different animal than two capable adults simply moving to a new space together. It is the difference between constructing a paper airplane and launching it… or a spaceship.

Moving was stressful and extraordinarily time consuming. And it was fun. The days were long days: days where Adahlia took her nap on a sheet on the rug on the floor while I continued to pack and clean, where we ate take-out after take-out meal because we had no time to cook or clean dishes, and Joe ended up having to take Weds-Fri off from work so we could finish everything before the end of the month. It was 1130 at night on Feb 28, with Adahlia so disoriented that she finally settled down to sleep only a half hour prior, that I sat in the new kitchen to send a final email to our ex-landlord while Joe, back at the old place, completed a final mopping.

In the end, he said the place sparkled.

Adahlia enjoyed the process of moving as much as she could. She helped put things in boxes, even things that weren’t supposed to go in boxes. As I wrote “apt” or “storage” on the box, additionally labeling it “dishes” or “shoes” or whatever, her face would break into a huge smile, and she would reach for the sharpie to add her own series of scribbles and slashes. I wore her piggy-back, strapped on my back with the Gemini carrier we’ve used since she was an infant, and like a momma monkey carries her baby as she swings through trees, I carried Adahlia as I swept and sorted and ferried boxes and paintings and odds and ins up and down flights of stairs.

Goodness.

We love our new place.

Of course, we do miss the old place a little bit. We miss the gorgeous, parklike backyard with its gigantic blossoms and fruit trees, its deer and squirrels and birds. We miss the shiny wood floors excellent for spinning and sliding, and the incredible living room stove/fireplace, with its metal carvings of woodland animals and brilliant flame. We miss the high ceilings with the fantastic acoustics, the windows and skylights across the walls and ceilings, and the monthly celestial display when the moon was full, for it would rise in one set of windows, cross the sky through the set of skylights, and set in the windows on the opposite side of the house. Every month.

Circles.

We will miss the raccoons that climbed our fig tree and munched fruit outside our window while we giggled in the dark, the bobcat that used to climb onto our roof, and the frogs that would sing for spring love in the little pond in our backyard.

We will miss the gartner snakes the sunned themselves on the rocks and ate the frogs.

And we will miss our squirrel friend that we all took turns feeding by hand (yes, even Adahlia!)

Yet…

We won’t miss the high ceilings, because the lower, and still angled, ceilings of our top-level, treehouse apartment are so much cozier. And while she and I will miss the acoustics when we do our high-pitched, happy shrieking contests, Joe is already grateful that they don’t echo and resonate as much as they did in the old place. The home and it’s landscape truly were beautiful, but our backyard here, while not nearly so lush, has a a plot of green grass and a plum tree and a perfect little place for me to plant the dahlia that I bought the day before Adahlia was born.

You see, the truth is that the ‘burbs – while very polite and safe and well-manicured – simply isn’t the sort of dynamic neighborhood where we belong. Our treehouse, only a half-mile from the heart of Misdissippi street and all that the up-and-coming district has to offer, is also only a half-mile to two different neighborhood parks, about a half mile to two different healthy grocery stores (both New Seasons and Whole Foods), a mile to a third, huge park with a neighborhood pool, and just a couple blocks from the restaurants and shops of Williams and Vancouver Ave and MLK Blvd. In the flatlands and no longer perched on a steep hill, we are in easy and enjoyable walking and biking distance to all of the above, and much more! Yet, our actual street is fairly quiet and off the main thoroughfare. There is a strong neighborhood feel, with folks of mixed ethnicity and culture and color. According to our downstairs neighbors, there is even a neighborhood summer block party, and the road is closed. People are extraordinarily friendly, colorful, and slightly wonky in that wonderful Portland way. People walk past with dogs or singing to themselves, and Adahlia watches from the full-length window, her palms pressed against it.

And, to be honest, as much as we enjoyed aspects of the cosmic nature of the old home, we won’t miss the fact that it was, well, spooky, and perhaps downright haunted. This place, happily, has a wonderful cozy, healing, and creatively inspiring feel… minus the spooks.

We are so, so happy in our new place. Strangely, everything about it is a better fit for us. Everything is smaller and yet somehow, more spacious, fitted better to our needs. We have one small bedroom closet to share, but it fits everything we need. The dishwasher is smaller, but it fits our little mismatched assortment of dishware perfectly, without us having to pilfer from it while it’s dirty because we’ve run out of spoons for stirring our tea, or sippy cups for Scooter.

The same is true of the bathroom and bedroom (we used to have two of each, now we have only one to share, but it’s totally fine.) The laundry room isn’t in our apartment, but we have our own designated machines in the shared basement laundry area, as well as a spot in a small storage shed. All for under $1000, including utilities! It’s almost unbelievable.

We are the top level of a triplex, and a little girl and her family live in the basement, and that little four-year-old girl adores Adahlia. (She took her by the hands and spun her in circles in the grass of the backyard on the day they met.) And we are actively looking for a fire pit to put in the backyard, so Adahlia can enjoy her fires again (as soon as the rain lets up.)

While there aren’t as many windows and no skylights, this new place is somehow just as bright and beautiful as the old. It was a perfect find, at the perfect price, and the perfect location for our desired lifestyle, and we love it.

And it keeps getting better! Now that we are officially within city limits again, we can utilize Portland’s food composting program, and toss our food waste into the collecting bin for compost. (Washington county did not offer this.). Hooray!

And Portland enjoys some of the best quality, if not the highest quality, water in the nation, courtesy of the Bull Run watershed. And now, so do we. Hooray!

It’s crazy, perhaps, to be relieved and happier to downsize from a roomy home in an affluent suburb to a one-bedroom apartment in the heart of the city (complete with a few rather “shady” neighbors), but we truly are.

Everything is moving.

Adahlia is doing really well, all things considered. While she probably misses the slide-factor of the wood floors, we are grateful for the carpet, especially when she gets low on blood and her balance gets worse. She enjoys the practice of climbing the stairs to get to the treehouse, and of going to the basement to do laundry.

She says “mah-mah” in reference to me now, and while I have often heard kids saying “mama” in a nagging, annoying way that made me cringe, I don’t find it annoying when Adahlia calls for me — it’s very cute. She carries around her little Waldorf baby doll and kisses her, and feeds her imaginary food, and gets too excited and slaps and throws her, standing over her with flapping hands.

Adahlia settles into my lap in the old, deeper bathtub in this new place, and gazes into our reflection in the shiny, silver bathroom cabinet knobs when we get out, pointing and waving at herself and laughing. She enjoys looking at the crows that land on the telephone wires outside our windows. In the kitchen, she picks up her leg and slams her foot back down, sumo style. She slaps her chest with the palms of both hands, as though a native warrior or a silverback gorilla challenging another to a duel, and shouts “ahh! ahh!!! aaahh!!!”

Today, we actually took all our medicines as prescribed. What with the marathon move, and the hospital yesterday, we hadn’t been taking the Chinese herbs, even though she recently graduated to a new formula. The only medicine we still managed to take regularly was her Exjade. I am happy to say that her iron is still dropping, albeit a little slower, even at the low dose of only 125 mg a day, which is about half the dosage per kg standard. Currently, her ferretin is 618 (it was 639 last month, and 800+ the month before that.). Her percent blood iron saturation has dropped to 70% from 92% last month, and 95% the month before that. These are all good trends, and hopefully, in another month or two, we can take a break from the Exjade for a bit.

I do need to find a way to get Adahlia to take blue-green algae though – it tastes awful, but she tested strongly positive for it, and it is helpful for removing heavy metals and toxins from the system. The Chinese herbs aren’t a problem – she loves her current formula, and takes it eagerly. It’s not the first time – she almost always takes the herbs eagerly, even if they smell and taste strongly, if they are a very strong match for her. It seems her body knows what it needs. And it’s not an uncommon phenomenon – many people report that their Chinese medicine formulas taste good to them when they really need them. (Of course, like everything else, that doesn’t always hold true!)

So today, we take all our medicines and eat breakfast and head off to see Red Yarn, Adahlia’s favorite kids performer. She sways to the songs he sings and plays on his guitar, and runs forward to pet the puppet animals he shares with the kids. She discovers a 10-month old baby girl with bright blue eyes crawling and runs over to me, bringing me over the baby and points, absolutely delighted.

“A beautiful baby!” I agree.

Adahlia chirps her consent and enthusiasm.

The concert over, we head to the car but stop first in the gravel outside the cafe, where Adahlia grabs it by the handful, lifting it up over her head and showering it down in front of her like snow. We play for awhile and then I hoist her onto my shoulders, and skip down the sidewalk to our car, bouncing her happily above me. I drop her down and she runs – she’s got a fast little run now – and then stops at the curb, pointing at the pooled water.

I offer my hand to help her step down and after she manages it, she lets go to stomp enthusiastically in the puddle, splashing filthy water everywhere. Good thing she is wearing her boots! I laugh.

I ask her if she wants to go home and she shakes her head no. I ask if she wants to go to a park, to a playground and she nods yes, her eyes lighting up.

So we drive to Laurelhurst, where we settle on the swings. But she doesn’t want me to push her – she wants to ride on my lap. I lift her out and sit down myself, facing her to me, and pull her hoodie up to cover the back of her neck and head. The day had started sunny but the clouds are gathering.

In her light, little language of babbling rhythmic inflection, she points out a motorcyclist passing behind me, a truck, and up at a bird in a tree. I say, “Yes, a bird, a very loud bird. He is a crow, a type of bird.”

She says, “bhirrd.”

“Yes!” I exclaim, for it is the first time I’ve heard her say that word. “Bird! And how do you say ‘bird’? In sign language?”

She makes the sign. I confirm and kiss her temple. Then she leans against me, resting on me. For a few moments, I relish everything, committing it to memory. The smell of her skin. The feel of her breath, her rib cage moving. The sight of her hair blowing in the breeze.

Everything is moving.

Life is movement.

“Do you want to go home and go to sleep with me? Take a nap together?”

She lifts her head and meets my eyes. Her lips part in a pleased smile and she nods once in a strong affirmative:

Yes.

Happy 20th month, Adahlia. I’m so glad you’re still here with us; so glad we’re all moving onward, together.

When you start living your life from a place where you accept that everything is happening as it must, because of how it is, whether or not it is “good” or “bad,” you start realizing that everything is therefore also happening as it should, and, therefore, that you are always just in time for everything.

This isn’t a new concept to me, and probably not to many of the folks who read this blog.  But it is a challenging concept to embody and live from, if your life isn’t necessarily what you would like it to be.

It challenges you to accept.  In accepting the people and events around you (those things you cannot change), and accepting that they must be that way for a reason, and it is likely for everyone’s highest good, it empowers you to feel grateful.  It can help create a stabilizing, peaceful place within you, even if a storm rages outside.

If everything is happening as it must and should, based on factors and patterns that you may or may not be conscious of, then you are also happening exactly as you should.  You are always exactly where you need to be given where you are at. Isn’t that comforting?

Now, if you don’t like where you’re at, it doesn’t mean you are stuck.  It simply means you’re someplace not particularly pleasant.  And sometimes, it is possible to create change by merely bringing your consciousness to where you’re at.  By facing and accepting unpleasantness, even the things that may not be pretty or flattering, by bringing your consciousness, by saying “yes, this exists, even if it is not the full picture, it does exist,” you create room for things to shift.  The storm doesn’t need to blow at you anymore — it has your attention.  Perhaps, now, it can blow over.

Its not easy.  If life is flowing through cycles, then most of life follows a pattern.  Most human patterns are, in the end, habits.  And habits are comfortable.   It requires great presence of mind and strength to break a habit or pattern and create a new path within oneself.  Add other folks into the mix, say, you want to break a habit or pattern in a relationship, and well, that’s a different and much tougher subject altogether!

But the point of this entry is to say that our family has experienced several “in the nick of time” moments recently.  Joe got a job a few days before Christmas, allowing us to stay in Portland where I can access to the best medical care for Adahlia, and hopefully, a cure.  We found an apartment we could afford just when we had no money left, and barely the ability to put the deposit down on it.  We got a gift of money to pay for the herbal treatment for Adahlia just when I was having to decide what to do about it, since we couldn’t afford it.  I was alerted that my kidney was severely swollen and received emergency surgery the day before Adahlia’s transfusion.  Adahlia’s transfusion was luckily, miraculously, the day before the snow began to fall, and when it fell it fell so much that it took Joe nearly four hours to get home from what is typically a 30 minute commute.  We were safe and warm, having just come in from playing in Adahlia’s first magical experience of swirling snow, when Joe finally left the parking lot that used to be a freeway (I405) and took his truck up Cornell Road, watching as cars slid left and right as they tried to climb the hill he also needed to get over if he wanted to get home.  After watching for awhile, he and two other trucks in 4 wheel drive roared slalom through the abandoned and stuck cars with tires spinning, and as he looked behind him in his rear-view, the passage bottle-necked, and no more trucks were able to get through the pass.

And on a little level, it applies, too.  Because of Adahlia’s transfusion happening right before the snow, she was able to play in the snow happily, and warm, with cheeks flushed.  I had began a chicken soup stock the morning the snow began to fall, Thursday, and made chicken soup yesterday, and as the snow’s been falling since, we can’t really leave the house, but that’s okay because we just got stocked up on firewood and food… and Adahlia loves chicken soup.

And if I hadn’t obtained emergency surgery to save my kidney, I wouldn’t be able to pack up for our big move in a couple weeks.  If it weren’t quite so emergent, the doctors wouldn’t have moved so fast and I probably would have started to decline pretty rapidly in a matter of days or weeks, possibly making us miss our move altogether, even though we’ve already given 30-days notice on our house.

Adahlia was transfused at a Hb of 7.3 at 4 weeks, which is about on par for her recent pattern.  She was 8.7 last week, so it fell pretty fast this final week.  But the good news is that the Exjade (iron chelator) is working.  Her ferretin has dropped from over 850 to the mid-600s, in just one month.  The doctors were not expecting it to work quite so efficiently — they were thinking that it might just help her iron levels stay stable at 850 and not get any worse.  (Organ failure becomes a risk around 1,000).  But it worked very, very well!  Hooray!

Again, I attribute this to her state of relative good health, all things considered.  Perhaps the chinese herbs are working synergistically with the Exjade to help her body clear the iron.  (I started Adahlia back on the chinese herbs about 1 week after her last transfusion, and she’s been on a hiatus from the homeopathics since that time, too.)

My hope is that after another month, Adahlia’s iron levels will be in the 300s or 400s.  If so, we may do another month, or I may ask to take her off it for awhile and see how long we can go before it rises up again.  You see, the dangerous side effects of Exjade (loss of hearing and vision) become more possible when there is less iron in the system.  And Exjade is actually not approved for children under 2 years — its never been tested on them.  So, I don’t want to run her down to normal (which is under 100).  And I’d love to give her a break from it, as it does clearly upset her digestive system.

Adahlia’s transfusion went really well – one poke, and the IV was in.  She barely cried.  She is, quite simply, the toughest, most observant, and beautiful little 19 month old I’ve ever seen.  She watched the technician and nurses the entire time they worked on her.  When the doctor felt her belly, he commented on how he could tell she was “paying attention” and indeed she was — her eyes were clearly internal, paying attention to what he was feeling in her.  Like before, we went down to the first floor of the hospital to listen to the piano while we waited for the Red Cross to bring her blood, and Adahlia danced.  We were there at 0830 and we left at 3 or 3:30 pm.  It was the smoothest and quickest transfusion we’d ever had — no small thanks to the amazing nurses, and to my friend who came to help me, since it was the day after my surgery, and I had pain coming in waves.

But we were present for her, and it was — for a transfusion — absolutely great.

Fun facts:  Adahlia enjoys creating correlations between things.  I started this with her when she was very young, and now she does it on her own.  She will bring me a book with a picture of a cat, and make the sign for cat, and I will say “cat,” and then she will go to her stuffed animals and bring me her stuffed cat, and I will say, “yes, cat!” and she will make the sign again and point again to the book.

For the last few months, when we go to the hospital, I get her a temporary tattoo from the nurses station.  I always put it on her left hand, since her IV is usually on her right hand.  The first month, back in November, I gave her a ladybug.  In December, it was a butterfly.  In January, it was a frog.  This time, it was a red dinosaur.

Adahlia has a stuffed, blue, long-necked dinosaur, a brontosaurus, I believe, which I gave her after her first extended hospital stay at 6 weeks old, when this whole blood disorder drama exploded.  His name is “Hut-Hut,” which is the phrase she often said at the time.  This time, I did not give her the tattoo at the hospital; I put it on her hand the day after her transfusion at home.  I then brought her “hut-hut” and showed her how they were the same.  At odd moments throughout the rest of the day, she would point at her hand with the tattoo.  When I would say “dinosaur,” she would then point at Hut-Hut.

To this day, when we read a book and there is an illustration of a ladybug, or when she flips over one of her alphabet blocks with the line drawing of a ladybug, she will point at her left hand and squeak, saying, “eh-eh!”  It blows my mind.  That ladybug tattoo was on her left hand for all of 24-36 hours, and it was months ago, but she remembers it.

Adahlia’s most favorite activity these days is to spin in circles.  She is like a little Sufi, twirling around and around in ecstasy.  She tucks her chin slightly, her head canted downward as if to give her momentum.  Then she pivots, sliding her feet and laughing until she falls over.  I twirl with her, and we spin around and around together until we collapse to the floor..

She also still does “Fast Feet!” — which is something we began with her back when she still couldn’t even roll over.  As a very small infant, she would kick her legs super fast, sliding them back and forth on the or carseat or in the swing or on the bed, and I would say:  “Fast feet! Fast feet!  Fast feet! …” super fast with her until she stopped or I ran out of breath.  She does this now while standing – stomping her feet on the ground while holding onto my leg and grinning – or while seated, sliding her legs on the floor.  And I still chant: “Fast feet!  Fast feet!” until my words are garbled and we are both laughing.

The snow outside still falls.  It is so beautiful and we are all safe and warm. We had all our necessary, life-sustaining medical procedures just in time for the worst snowfall to hit Portland since at least 2008.  The winds swirl and we turn and turn and turn with them, and mark the passage of time by staying still.

Like with all babies and toddlers, Adahlia’s life is a wonderful series of “firsts,” and there have been a lot of “firsts” for Adahlia recently.

This past week, she saw her first earthworm. We were walking up the hill from checking the mail, and it had recently rained. Squiggling helpless on the sidewalk in the sun’s warming rays, vainly trying to burrow into pavement, was an earthworm. He was medium-sized, maybe even on the skinny side. He seemed a bit dehydrated.

“Adahlia, look!” I called, for she had let go of my hand and was a few paces ahead. I squatted and pointed. “An earthworm!”

True to curious form, she came over to investigate. After peering at him for awhile, she broke into a smile, pleased. Carefully, I picked him up and he flexed himself in my palm, nosing the air for answers.

“Be gentle,” I warned Adahlia, as she ventured an index finger forth.

I didn’t let her touch him (she’s not yet mastered the concept of gentle), and she came with me as I put him down in a little area of dampish soil. She squealed happily as he began to move.

“They till the soil,” I told her. “If it weren’t for earthworms, plants wouldn’t be as healthy, and our food wouldn’t be as good.”

We watched him for awhile. Then she took my finger as we continued up the hill, and I felt an immense rush of joy in being able to share such an important, yet humble, member of our environment with her.

Fun fact: In ancient Chinese texts, humans and earthworms are said to belong to the same family, for we are the naked creatures. Isn’t that interesting?

Another first:

Also this week, Adahlia had her first high-speed “fly-by” from a hummingbird. Going at top speed, and at her eye level, the hummingbird zoomed right past her, leaving her agape and somewhat startled.

“A hummingbird!” I said, excited. We were at the park at the top of our neighborhood hill, Lost Park. Years ago, while pregnant with Adahlia, Joe and I had watched a hummingbird climb dozens of feet into the air, hover dramatically, and then plunge straight down, pulling out of the dive at the last moment. He did this stunt many times over, making the hummingbird’s unique whirring, almost metallic-sounding call. He was showing off for a nearby girlfriend… and hopefully, she was impressed. We were! Maybe this was the same guy, or perhaps it was his own baby.

Our house has lots of flowering plants around it. After Adahlia was born, hummingbirds used to come to the large picture window of our living room and hover, watching her. Hummingbirds are good signs. They are considered spirits of the southern direction; they are representatives of laughter, joy, and warmth.

Another first:

Tonight , Adahlia brought her very first firewood to our fire. A couple days ago, at the park, she had found a large piece of wood amongst the wood chips of the playground. It was about as long as my forearm, thin, and maybe four inches wide. She carried it over to me, her face alive with excitement, holding it up with her right hand as she signed “fire!” with her left. I laughed and agreed and put it in the stroller to bring home.

She also found a wood chip about the size of a silver dollar. I could tell she wanted to keep it, too. But both were wet, so when we got home I removed them from the stroller and set them in the garage to dry.

Tonight, I went with her into the garage to get some boxes to pack away some books. When I turned around, she was holding both the large and small pieces of wood.

“Your firewood!” I exclaimed. “You want to build a fire?”

She nodded.

“Ok, you bring your wood.”

She carried both pieces inside. I tore up a brown paper bag and together we opened the stove. She tossed in the small piece, and set the larger piece in next. I added some more kindling and lit it.

Up til now, she had only seen us purchase wood at grocery stores. This was the first time we had collected wood, and she did it on her own initiative. She had found wood to feed the fire, and she had fed the wood (put it in the empty stove) to the fire herself.

It feels important.

I should go to bed now. This is a big week for us: I am having an emergency surgery to stabilize my kidney (the last surgery didn’t hold) on Tuesday and Adahlia is due for transfusion the next day. Meanwhile, we are packing up to move — we are downsizing to a one bedroom apartment. (It’ll be cozy — like living in a treehouse. Unfortunately, however, the treehouse doesn’t have a fireplace. Boo! Adahlia will miss it!)

I can’t say I’m particularly looking forward to this surgery. It’ll be the 3rd one in less than a year, and I’ve never so much as had a broken bone before. Between kidney failure during pregnancy to giving birth and my subsequent kidney issues…. well, my poor body. It’s amazing. It’s doing an absolutely amazing job of hanging in there. God, I love it. Don’t give up, kidneys!

I think I’m going to do general anesthesia again, this time. Though I hate how it feels — it is like liquid ice being poured into your veins… Positively eerie — the spinal that I received the first time was just sooo painful. Plus, the spinal takes longer to wear off and I can’t leave the hospital until my legs and bladder are no longer numb. That means an extra few hours before I can see Adahlia. So though I feel anesthesia was rougher on my body and vital force as a whole (it took me about a week to feel warm again after the second surgery), and there is always the risk of the anesthesia getting into the breastmilk, I am leaning towards general anesthesia.

Then again, since this is just an emergency stabilizing surgery, and I will have to have a bigger, more invasive one after it to “fix” the root problem, and I’ll definitely have to do general anesthesia for that one, maybe I will go with the spinal after all.

But goodness, the idea of that scares me. It took them 7 pokes into my spine last time. By the time they got the right spot, I was crying and begging them to please stop. And there’s always the possibility of spinal fluid leakage post surgery, or loss of sensation dye to nerve damage.

Decisions, decisions. Truly, both options have benefits and risks.

Yet, I have hope. Even with this recent kidney emergency, and my fears for how much of my right kidney could possibly still be functioning at this point, how much might have atrophied, I am much, much stronger and more vital than I was for my first two surgeries. I attribute my relatively good well-being to the excellent care (acupuncture and supplements and herbs and diet) I’ve received and given myself over the last year.

God, these last few years have been so tough!

But that’s ok. Adahlia and I and Joe are even tougher.

We will just keep on looking out for hummingbirds and earthworms.

Light a fire for us, and toss in a piece of wood for Adahlia, if you get a chance.