What did your baby cost you?

There are all sorts of answers to this question.

Some women will say that their bodies were never the same:  their breasts, their abdominals, their hair, their hips…. the list goes on.

Some women will say that their relationships with their partners were never the same:  something shifted, something got lost, something became less important, something became more obvious, something became more stressful… and the list goes on.

Some will say that their professional lives, financial lives, and personal goals were never the same:  they dropped out of education, they left practice, they had to take out a second mortgage, they couldn’t afford the vacation they wanted, they were too tired, there were too many demands… and the list goes on.

The sadness, bitterness, and even resentment about all the things women lose in motherhood is tangible, even if its cloaked in a joke or wry smile.  But then, nearly all women will immediately insist that it was worth it.  That the experience was and is worth it.  That this person that they are bringing into the world was worth all the sacrifices and the many more to come.

I always thought women were kind of mean, and kind of stupid, and kind of sad, and kind of brainwashed, and kind of crazy, to say and think such things.

Because I thought that the cosmetic changes of pregnancy and post-partum were superficial and missing the point.  Because I thought that a true loving relationship rooted in mutual respect and understanding would simply expand to include a child.  Because I thought it possible to live a healthy balance of professionalism and motherhood, because I believed in the importance of my own contributions that come from my heart, mind, and hands, and because I had a solid financial foundation and few personal material desires.

Because of these things, I did not think having a baby would be much of a sacrifice.

And then my pregnancy became complicated.  And then Adahlia was born without the ability to make enough red blood cells to survive.  And then my kidney kept failing.  And then the VA failed to do anything about it.

And if you look at all the losses, they are staggering.  I lost thousands of dollars in savings and all the future plans for it (both personal and business) when Adahlia and I got sick and Joe lost his job.  Joe and I’s relationship has been stretched to a breaking point.  I lost my scholarships and had to quit my doctoral program when I could no longer pretend to be able to keep pushing forward, when it was clear to me that Adahlia needed me and that my health wouldn’t allow it.  And though I tried numerous times to re-start it, I never was able to reopen my healing arts practice when I closed it 6 months into my pregnancy, to give myself time to enjoy the last months of my pregnancy.

I would have never guessed I was closing it for the foreseeable future.

And I would have never guessed this latest loss:  my surgeon informs me that the kidney function test says that my right kidney is only contributing about 10% to my overall kidney function. Therefore, they won’t operate on it.  They won’t try to save it.  They want to remove my right kidney.

So, in addition to all the above, I learn that my pregnancy has cost me a kidney.

They tell me not to worry:  my left kidney is functioning fine.  I will have to be very careful not to get an infection, but lots of people survive just fine on one kidney, and I won’t necessarily have to go on dialysis anytime soon.

Yet, for someone who was climbing mountains and scuba-diving and rock climbing prior to pregnancy, someone who enjoyed traveling to remote (i.e., dirty) parts of the world and was planning on being a world traveler again, this is NOT okay news.

Moreover: my left kidney doesn’t FEEL fine.

Would this be any less upsetting if I had birthed a healthy child?  A child able to make her own red blood cells, who wasn’t always teetering near death?  Would it be easier if, at the end of all the tallying, I could at least point to Adahlia, and like the aforementioned women, smile somehow wanly and blissfully at the same time, because at least a healthy child has been brought into the world, and a child is a world of possibility unto itself?

It appears pregnancy demands sacrifice, and if one doesn’t find the typical road very sacrificial, a road will be created so as to test one’s ability to withstand it.

Of course, this is not the end of the story.

There are second opinions to be obtained.  There are battles to be waged in consultation offices.  There are losses to be cut and there are new directions to be explored.

There is a time to push onwards, because it is one’s truth, despite any and all obstacles.

And there is a time to cut free, and move in an entirely new direction.

And perhaps, as they wise woman in my dream said, the point is this:  “How low can you go?”

How low can you ride the tide?  Can you ride it until it hits bottom without losing yourself?  Without falling into despair?  Where is your center?  Because if you cannot ride it down, then you cannot ride it to the top.  You must find serenity of mind and integrity of purpose.  Let the waves come.  Let the hurricanes blow.  In the center, beauty and joy awaits irrespective of outrageous fortunes.  But, it requires work to find the center.

Meanwhile, Adahlia is amazing and is doing well at 4.5 weeks post transfusion.  I took her to the oriental medicine physician and herbalist I trust, and we tested her, and her inflammation is significantly less.  The auto-immune reactivity is almost gone.   We tested the homeopathic spagyrics I was using to flush her system last month, and they tested beneficial for her in addition to the chinese herbs.  It appears the therapies are working synergistically, and so I will start using them together.

I cannot speak for all children with DBA, but I know that I have been right about what is going on with Adahlia, and that whether or not she has a genetic marker associated with DBA, she also has a deep-seated intracellular infection that spurred an auto-immune reaction and systemic inflammation.  We are resolving these things little by little, month by month.

There is no doubt in my mind that Adahlia will be fine.  She will eventually be cured.

Can I regain my right kidney function?  Doctors say no.  I say yes.  I say that with the right and consistent application of acupuncture, moxa, herbs, and energy work like reiki and qigong, if they will just fix the kink in the ureter and leave me my kidney, that eventually, it will start participating and contributing more to overall function.  If this surgeon won’t do it, I need to find a surgeon that will repair the obstruction and give me a chance to heal my right kidney.  Because I completely agree:  a non-functioning kidney will be a potential seat for infection.

After all, what happened during my pregnancy?  My right kidney became blocked by a preexisting (congenital) but previously unproblematic obstruction in my ureter.   The urine backed up into the kidney, causing it to swell (and become rather painful.)  It stopped functioning.  It failed.  And (my theory):  an infection then went wild, unchecked by my immune system because it was suppressed for pregnancy, infecting Adahlia and triggering Adahlia’s bone marrow failure, causing systemic inflammation and auto-immune reactivity in us both, and well, that’s our story.

And I will need a report saying that I only had 10% function at a certain point, if I want to show that that these natural medicines truly are amazing, as we all know that they are, and that my kidney has recovered, and is now contributing 20% or 30% of function, correct?

Meanwhile, healthy or not, I have the most amazing little friend.  She has big, wise eyes and she strokes my face and wraps her little arm around my neck, pulling my forehead close to meet hers, and smiles.  She pats my back when we hug and she wraps her neck close to mine, as if we were giraffes giving a neck-hug.  She climbs onto my lap and stands, jumping up and down, holding onto my hands and swings herself side to side, singing:  “laddle, laddle, laddle!”  She gets on her wooden rocking horse, rocks it to its extreme point, and then climbs up onto the back of it, balancing there, taking on the risk of falling, standing on its back like she’s the lady on the white horse in an old time circus tent.

She steps down to thunderous applause.

Adahlia and the HI Life: 4 Weeks – No transfusion!

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.

first roasted marshmallow

Adahlia’s First-Ever Roasted Marshmallow!

Keep sending love and positive vibes!

Love and light to you and yours.

Warmly, Erika

Itsy Bitsy, it’s all about surfing! Riding a high Hb

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.

Today, 6-20-14

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

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.