A 3-Minute Drive

As every bewitched mother of a one-year-old (hopefully) says, I adore Adahlia.

She crawls out onto the deck and is examining the balloon-shaped leaves of a jade plant.  She snaps one off for a closer look and is fiddling with it, but I am inside behind the kitchen counter.  I peer around the counter, say “hey there” and raise my hand in greeting, just to let her know I’m here and watching, and she breaks into a big smile, lifting her palm to me.

I swing with her on the swings of a nearby playground.  She is facing me, her legs straddling my waist.  (The last time I shared a swing face-to-face with someone was maybe in fifth grade.  Maybe.  And it feels like spring!)  A fistful of my shirt is in her hand and I’ve got one arm  around the chain and her little body, and the other hand grips the cold metal links.  I pump us higher into the air and for awhile she bounces on me, as though riding a horse.  Then she rests her head against my chest and watches the scenery pass.

We’ve taken to practicing vocals.  She’ll shout:  “Dah!”  And I’ll match her pitch:  “Dah!”  Then she’ll do it again, higher, shriller, “Dah-Jah-Dah-DAH-DAH!”  And I’ll do the same.  She does it again, ecstatic, and even screechier, and my echo rivals the frequency of a tea kettle going off.  She giggles and I whisper: “Dah-Jah-Jah.”  And she says softly: “Dah-Jah.”  This goes on and on, varying pitches, varying volume.  It’s awesome.

But there are times that are less than awesome.  Some times are difficult indeed.  A day ago, I ran errands with her all morning and she was happy to ride around to the different grocery stores, watching people, riding on my hip or in the cart in the store, sitting in the car seat entirely content.  Tonight, however, when Joe and I took her out with us to get frozen yogurt, she was not in the mood to be in the car.  She growled on the way there, a low, discontented murmur.  Things brightened considerably at the store: she was psyched to taste little licks of yogurt and was fascinated by the fake jellyfish “swimming” in a tank.  We could see she was riding some sort of delicate emotional pendulum, though.  Like in a old cartoon, when a bird lands on a tottering Wylie Coyote, sending him over the cliff, things were precarious.  Eventually, the time came when we had to get back in the car to get home.  It was simply necessary.

Of course, we can’t explain this to her.  We also can’t explain that we are just going 3 minutes down the road because we plan to stop at the park to play with her before heading home (it was actually our second trip to a park today.)  For all she knows, she is on a 1.5 hour trip to Mount Hood and she’s not having it.

Her screaming knew no limits.  Howls that would send shivers down a werewolf’s spine.  Tortured agonies to turn a vampire’s blood to ice.  Giant tears rolling down her face.

My eardrums whined a high-pitch ring when she stopped to gather breath for her next big one — it was that loud.

For a 3 minute drive to a park.

For her.

Naturally, by the time we got there, neither Joe and I were really in the mood to play with her.  She, however, realizing we’d stopped and she was being unbuckled, took one look around, was instantly fine, and was ready to pick flowers and play chase.

Joe had to go walk around a bit to burn it off.  I sat down and hung out with her, but I wasn’t really feeling up to making silly faces with her.   She offered me a pine cone chewed up by a lawnmower.  I examined it.   Truth was, Joe and I were both a little peeved.

We talked about it as we swang on the swings and she sorted through the wood chips.

“It’ll be easier when she is older and understands us when we say that it’s just 3 minutes down the road, and that we’re going to a park,” I say.

But I as speak, something is feeling false, and the words are coming out hollow as soon as I speak them.  The sentence dies flat.   I’m not sure what was wrong with what I said, so I let it drift down into my subconscious to sort itself out.  The conversation changes directions as though catching a passing breeze, and we flow with it.

A little over an hour later, we’re headed back to the car.  It’s another 3 minutes to the house if there’s no traffic, and immediately upon setting her in the car seat she begins to arch her back and howl.  But this time I don’t sigh.  My face is a little looser and maybe there’s a hint of smile as I kiss her long on the forehead before going up front.

“You know, I don’t think its about her getting older and us explaining anything or her being treated as an adult.”

And there must be something about what I’m saying, because as I speak, she calms down.  She doesn’t try to scream over my words.  (She’s like that. She knows when something true is being spoken, and she listens, too.  Or maybe its just the energy behind the words, I don’t know.)  I reminded Joe of the following story, which I will relate here:

It makes me think of a friend, I said, who said her daughter, in her 30s, was really stressed about something that she shouldn’t be.  She said that from her perspective, in her 50s, she could see that everything would be fine.  But of course, her daughter wouldn’t believe her!  The daughter was upset and making herself depressed over nothing.

My response, at the time, was to say:  ‘Its all relative, of course.  There are things you are stressed about…’ (I named a few things)… ‘and surely, someone in her 70s would shake her head and smile and say that you were wasting your energy and worried about nothing.  That it would all shake out fine in the end.’

My friend smiled and said, ‘Yes, I suppose it is a matter of age and experience.’

‘Well, not exactly,’ I said.  ‘Although that’s what people like to say because it makes them feel better.  But I am younger than you…’  I raised my eyebrows with a slight smirk.

‘You’re right!’  She laughed.  ‘Oh, we all get caught up in things and none of it really matters!’

‘In a way,’  I said.  ‘But to the person in the thick of things, it is all very real.  It goes deeper than any rationale or professed belief and touches them at a very raw level.’   I paused.  ‘It’s their journey.  And that has to be respected.’

Back in the car, headed up the hill to our house, I related the story to Adahlia. “So you see, it’s not about telling her that its only a 3-minute drive.”

“I have to disagree,” Joe said.  “There’s a big difference between her and us.  She has two people who care for her, and carry her around all day, and feed her, and do everything for her.  And we don’t have anyone like that doing that for us.”

“Maybe, maybe not.  That depends on how you see it,” I said.  “Weren’t we just talking about the slip-stream and falling into the flow and how things are unfolding for our growth and healing?  The way I see it, there has been something carrying me, and feeding me, and helping me do everything.  And even if would end in death, well, it has to happen eventually, doesn’t it?  It’s the final step.”

Adahlia was silent.

“Sometimes things get rough.  They don’t go the way we’d like.  Like Adahlia, we have no way of knowing that its just a 3 minute drive.”

And its all for us.

***

Later, Adahlia and I have finished taking a bath and I am putting her pajamas on her.  Her hand is in her mouth and I tug a little on it so I can put it through her sleeve, but she is clearly deep in thought (likely about her mouth, for she is teething) and she resists.  Suddenly I stop tugging and wait.  She feels me waiting for her and looks at me, offering me her arm, helping me as I guide it through the sleeve.  The motion itself is nothing new.  She has “helped” me put her jackets on countless times before.   But the quietness in which we are moving with each other feels extraordinary.

I’ve got her feet in the little footies and I’m starting to zip it up from her ankle.  Still staring quietly at me, she does something unprecedented.  She grabs the material on both sides of her hips and pulls it together so that it meets in the middle and is easier to zip. Astonished, I continue to zip as she moves her hands up to her chest, and grabs the fabric to hold it together so I can finish zipping.  Where did she learn this?  She lies quietly while I snap the button under her chin.  Her eyes have not strayed from mine.

I scoop her up in my arms and our faces are close.  My heart swoons.  I know that somewhere we have made a pact.  I know we are here to learn from and teach each other.  I am overcome with wonder at her, at me, at this strange and beautiful life.

“How many worlds have we lived in together?”  I ask softly.

“How many roles have we played for each other?”

“How many times have we been in this place.”

***

Thanks to Joe, for you could easily have flipped our conversation around and he would have been the Teacher.  It has happened before and will happen again.

Thanks to Adahlia, for all she illuminates.

Thanks to That which Flows through us and moves out through our lips, creating Itself over and over, again and again.

Transfusion #16… set to music…

… and complete.

Adahlia was a hero, naturally.

“She’s so serious,” several nurses said at several different times, as Adahlia gravely watched them apply a tourniquet to her arm, or push buttons on the infusion drip.

It’s true.  She can be like a large body of water at night:  very calm, very serious.

“She’s teething, again, too, though,” I said, not sure what else to say, and because they seemed a bit taken aback by such a serious little person.

And because it’s also true.  Teething is no joke.

The IV nurse was amazing (one poke).  The IV never once became occluded and didn’t start beeping until the transfusion was complete (first time).  As it had turned out, Adahlia’s Hb had dropped, but after 5 weeks, the number really wasn’t so bad.  Yes, it definitely qualified for a transfusion, but its been much worse.  All told, it means that she is making red cells.  Her response to anemia is still no where near enough to keep herself alive as her red cells naturally die.  But really, she’s not doing too shabby.

Today, for the first time, a “Musical Rx” volunteer came by.  She walked from bay to bay, with her guitar, taking song requests.  I was walking around the floor with Adahlia in one arm, pushing the IV drip with the other, and we stopped outside a young boy’s bay to listen in on “Amazing Grace.”  The volunteer’s voice was light, playful, and resonant.  She both looked and sounded like a fairy singing… (a fairy in a purple t-shirt with hiking boots, tattoos, and uneven pixie haircut… very Portland).

After singing for the boy and exiting his bay, she turned to us in the hallway and asked us if we had any requests.  We didn’t really have any, but I told her that Adahlia’s father plays guitar for her, and that she really loves it.  After a moment’s deliberation, she sang the following song:

If you ever find yourself stuck in the middle of the sea,
I’ll sail the world to find you
If you ever find yourself lost in the dark and you can’t see,
I’ll be the light to guide you

Find out what we’re made of
When we are called to help our friends in need

You can count on me like 1 2 3
I’ll be there
And I know when I need it I can count on you like 4 3 2
And you’ll be there
Cause that’s what friends are supposed to do

If you toss and you turn and you just can’t fall asleep
I’ll sing a song
beside you
And if you ever forget how much you really mean to me
Everyday I will
remind you

Ohh
Find out what we’re made of
When we are called to help our friends in need

You can count on me, like 1 2 3
I’ll be there

And I know when I need it I can count on you, like 4 3 2
You’ll be there
Cause that’s what friends are supposed to do

You’ll always have my shoulder when you cry
I’ll never let go
Never say goodbye

You can count on me like 1 2 3
I’ll be there
And I know when I need it I can count on you like 4 3 2
You’ll be there
Cause that’s what friends are supposed to do

you can count on me cuz’ I can count on you

The song is by Bruno Mars.  I have very little exposure to popular culture (I’m just not very interested in it) and it was the first time I had heard it.  It’s called “Count on Me.”

As Adahlia stared transfixed at the guitar, her eyes moving from the frets to the hollow chamber and back, my eyes filled with tears.  I couldn’t help it.  It was the lyrics, summing up how I feel for Adahlia.  Or the sweet, encouraging way the girl sang to Adahlia, her mouth breaking into a smile around the words, a palpable joy and connection forming.  Or it was Adahlia’s complete absorption in the music.   Or maybe it was thinking of all the folks who have really showed up for us and all those who have made a different decision.  I’m not sure.  I wiped the tears away quick but I’m sure the girl noticed, she was just kind enough not to say anything.

After she finished singing an encore of “Three Little Birds,” by Bob Marley, I thanked the musician on behalf of Adahlia and I.

“It was my pleasure,” she beamed, and I could tell she really meant it.  “I’ve never had someone so interested in my guitar.”

Adahlia, you are so special.  I know its been so difficult for you here.  Thank you for accepting everyone’s gifts.  Thank you for touching our lives.

Countdown…

These days are tough days.

As I said a couple days ago (in Undaunted, we progress), I’ve re-discovered a much healthier way of being in this situation.  I’ve found a way to love without worry or fear of losing.  Its something I’ve believed in for awhile.  Something I figured out how to do (after many years) in relationship with a partner.  (A huge deal.)  But this has been even more intense.  Its been very in-my-face, exhausting work, without a break.  Being Present.

We are at the point where Adahlia “loses it” very easily.  She gets tired and goes absolutely crazy if she doesn’t get her way… a tricky thing, when she doesn’t actually want anything, she just feels bad.  Frustrated, she starts biting things, throwing things, throwing herself… sometimes, its for no discernible reason at all.  Other times, its as though she needs to wind down and can’t, or is reluctant to, on some level.  She is fighting to be here.

After trying everything I can think of that she might want, I just hold her and sing or hum low tones to her.  Eventually she stops howling and throwing herself around.  She nurses, and passes out.

She really isn’t like this when she’s not low on blood.  When she is, she gets desperate.

Or, she was this afternoon, anyway.  This morning, she was fine.  I took her on errands with me and carried her on my hip everywhere, and she was entirely fine until about 2 pm.  We had a nice time together and I was even wondering if perhaps her blood was recovering, if perhaps she is not going to be much lower than 8.5 when we go back to the hospital this week.

But from 2 pm on, she wanted everything and nothing and alternated between joy and irritation like an on-off switch.

We went to the Sauvie Island beaches and did have some fun.  She loves water and it was our first time there. She crawled around in and examined the sand, and played at the river’s edge, and got to pet a dog.  (She adores dogs.  She points and says something that sounds an awful lot like “dahg.”  She seems to like larger, black dogs best.  There’s no logical reason why she would prefer them to other dogs, but I used to have and love a big, black dog when I was younger.  We got him when I was in 6th grade and he died while I was in college.  Perhaps there’s a link there.)

She still refuses to eat pureed baby food.  She pretty much started and stopped eating pureed baby food over a period of a month or two, back when she was about 9 or 10 months old.  Today, she enjoyed taking teeny tiny bites of my sandwich (she has four teeth and is working on a couple more.)  She wants to be a big person.  Its clear as can be.  Something we’ve known since she was first born.  She’s just not psyched about being a small baby.  She wants to do all sorts of things herself, and gets very frustrated when she can’t figure something out, or isn’t strong enough.

Sometimes, I feel she is so adamant about things like this because of the anemia, and what happened when she was so little.  How she lost all that weight when she was 4-6 weeks old because she was too tired to breastfeed and wasn’t getting enough nutrition.  How she howled and howled and howled for us to help her, but no one seemed to think anything was wrong.  And then how I wasn’t allowed to feed her for 9 hours at the hospital after she admitted that first time (its because her hemoglobin was so low that they feared any digestion would divert blood to her stomach, and cause instant heart failure), and she screamed and beat her fists upon me and bobbed her head hard against my breasts, looking for the nipple I wasn’t allowed to give.  All those hours when she was so hungry, and I didn’t feed her.  How they poked her like a pincushion, and drugged her and biopsed her, and scanned her, and put tape on her skin and pulled it back off, and have done all these things to her over and over and I haven’t intervened.  I haven’t stopped it.  I’ve held her, and kissed her, and been with her when people hurt her, but I’ve allowed it.  In her mind, most likely, I haven’t protected and cared for her.  Perhaps, in her mind, she must fend for herself.

Its no wonder she is so independent already.  She screamed, tonight, when I tried to help her brush her teeth; she yanked the toothbrush away and threw it to the floor.  Twice.  Now, she loves brushing her teeth.  She loves the apple-cinnamon-flavored baby toothpaste and she loves to chew on the bristles.  In days past, she’s let me help guide the brush.  But not tonight.

Of course, I’m just feeling particularly tired right now.  And so is she.

It helps for me to remember what I know:  Her challenges she chose for herself or were prepared for her because they are what she needs in order to grow into her highest, truest, self.  With our hearts in the right place, and our decisions made consciously, never dismissing her or ignoring her, our words and actions done in respect and compassion, we are doing all we can.  And such are the challenges prepared for me.

A week ago, after my revelation about how I suffered last month and about motherhood (my thoughts put down in the aforementioned post), I told Joe that if we can be happy in this situation, with everything falling apart that we had ever wanted for ourselves (including, at times, our relationship with each other), then we have made the leap.  We are free from conditional happiness – even from the really big conditions of health, and love, and career, and home, and money.

To be simply joyful in life for absolutely no reason.  Isn’t that wonderful?

It’s time to send love and healing light to Adahlia in my belly, and as a newborn, and when she was at the hospital, and to the present.  And time to rest.

FUN-raising for Adahlia!

The first of many celebrations to come is tonight! Adahlia has gone OVER A MONTH since her last transfusion, and we’re pretty sure that all your love, support, prayer, and understanding is helping to open the gates to health!

SunlightAdahlia

Come celebrate with us at Rooster Rock State Park tonight as we join OMSI’s Star Party! We plan to get there around 8 pm for lunar and Saturn gazing that starts at 9 pm. Friends can email, call, text, or contact us to join us!

Adahlia LOVES being outdoors. While this outing may be a little late for some little ones, we do think she’ll enjoy it. Future events will be varied: splashing in fountains, hiking, river walks, and more. We’ll keep you posted.

Come do a little FUN-raising for Adahlia! She’d (we’d) love to see you!!

PS: The attached photo came from a recent impromptu celebration of Adahlia’s health. On Thursday of this past week, a day we thought we’d be spending in the hospital getting a blood transfusion, the doctors cut us loose and told us to come back in a week. What to do?

We came home, gathered some quick supplies, and drove to the Mt Hood area for a short but steep hike to Mirror Lake. With a few hours of daylight left, we continued onward, doing an unanticipated jaunt up the Tom, Dick, and Harry mountain ridge line. This is Adahlia at the top, surrounded by the peaks of Mt Hood, Mt Jefferson, Mt St Helen’s, Mt Adams, and Mt Rainier. She loved it. What a reversal of fortune for the day!

Undaunted, we progress

At this point, readers are aware that a lowered hemoglobin makes for an uncomfortable, unhappy baby, which makes for increased demands on stretched parents. For the past few days, Adahlia has showed increased distress, so we knew her hemoglobin was slipping.

It’s a very demanding time. But, actually, like anyone who has had a sick loved one, there are options in how to deal with it. Some might (understandably) lose their temper in what is an extraordinary exercise in loving patience. Some might delegate the care-giving duties to someone else, so as to accomplish other tasks. But there’s another way to approach these times, which we’ve tried to do since the day of her birth: embrace them.

These times, difficult for everyone, can be a time of renewed closeness and creativity. New games, new distractions, extra cuddling, more singing, more field trips, more snuggling, more randomness, more connection. Its a great exercise in presence, as well as a wonderful reminder of the lesson of Jon Muth’s children’s book, The Three Questions, an adaptation of a tale by Leo Tolstoy, in which the main character learns: “Remember then that there is only one important time, and that time is now. The most important one is always the one you are with. And the most important thing is to do good for the one who is standing at your side.”

Last month, I did not handle her decline and transfusion well. I felt like I couldn’t help it. I was extremely depressed that the therapies I was dedicating myself to weren’t working. I felt miserable every time I looked at her sallow complexion and felt in my gut how sick she was. I felt like a mother animal that can recognize when her baby is not viable, and Nature instructs her to abandon it. But of course, I couldn’t and wouldn’t want to do that. She and I have been in this together, our health failing together, riding the beauty of our days and nights together, determinedly hanging in there together, since the beginning.

Unlike animal mothers, who have no hope of helping their young, we have therapies that can postpone a natural death almost indefinitely, in some cases. Grateful as I am to know her, given the depth of my love for her, and knowing all I have and will gladly devote to her, I am so thankful that biomedicine exists, that we have these technologies and transfusions. The idea of taking her to the hospital and not taking her back home, a home full of baby paraphernalia, drops my stomach into a sickening abyss. Yet, because of the blessings of technology, I also have the curse of watching her slip towards death, month after month, ever since she was born, like a sad, personal hell version of that movie Groundhog’s Day. I have thought that, in a way, perhaps it is easier to lose the person you love once and for all, and mourn them like crazy, and then do the tough work of healing from the loss. Yet, of course, I don’t want that. To lose her would wrench us apart and to pieces, and leave me like a stripped, hollowed tree. These dark thoughts, as well as the impotence I felt, as the herbal therapies didn’t seem to be working, were unshakable. Last month, in particular, it drove me into an empty depression.

Of course, it wasn’t always doom and gloom. Even on the worst days, there were moments of joy. But if you’ve ever sat with someone you love as they slipped away (of any age or relation, parenthood does not have a claim on love), you know what I am talking about. There are highs and lows in any relationship, and last month, the days leading up to and around her transfusion left me very low.

After her transfusion, though, I was able to clear my mind a bit and realize a few things:

  1. Adahlia needs her mom at such times
  2. If I am feeling sorry for myself or caught up in my own drama, I cannot be the center, the solid rock, that she needs. Nor am I the playful friend she needs.
  3. It may be easy for me to “shuck off” prideful ownership of Adahlia (ie, the way some parents view their beautiful or successful children as a reflection of themselves), but it is much harder for me to not become attached to her in her decline. I’ve often said that a child’s story is his or her own story, and that the parent doesn’t really have a right to make it a drama for themselves. Adahlia’s beauty is her own beauty. Her intelligence and kindnesses and successes are also her own. None if this I have ever wanted to claim. But, there have been times I have been very depressed about her illness. I have “assumed” her pain as my own, becoming very distraught. Yet, she’s the one near-to-death. Where’s my mettle?

Why do we become so dramatically attached to our children? Contrary to popular belief, its actually not natural — not in the animal kingdom. And in the human kingdom, it can quickly, unconsciously, become a tool for the mother to manipulate or guilt her own child into behaving in certain ways, even restricting the child from becoming what is his or her destiny. It is not helpful for the mother, either. It distracts the mother from remaining focused on her own life, as well as from actually BEING a good mother (she’s too caught up in how she feels about things to respond appropriately to her child’s needs.) In its extreme form, the mother becomes the child, and the child takes on the role of the mother, telling mommy “its okay,” and that she/he loves her, etc. etc. You see, it is absolutely VITAL for a woman to be confident in herself and to not see her child as “her” child in order to remain a rock of support, in order to actually see the child as a separate person and to help them to be themselves instead of something which pleases or reflects highly upon the mother. (You can insert father for mother anywhere you like.)

Its extraordinarily difficult to do, because we are some darn vain, self-absorbed creatures.

It made me remember an amazing teaching, one that I believe in as heartily now as I did before I was pregnant, when I had no intention of becoming pregnant. It is a poem that many future and current parents could use a reminder of:

“Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.” ~ Kahlil Gibran

***

Needless to say, this past month has been much better for me. I just needed to realize how far I’d fallen from all I know to be true. Adahlia’s situation has been like the fire, the crucible, through which all my beliefs have become tested. It is great. I owe her a large debt for helping me to make my intellectual understandings become a part of my deeper being, and my way of life. To walk the talk, so to speak. To know it in one’s bones.

So now, you might be wondering, exactly how Adahlia is doing.

Adahlia has been taking her Chinese herbs almost like clockwork (we have missed a dose here or there) three times a day for the past month. She has taken them willingly, even eagerly, which has been a big relief. She was also so lucky as to spend five days in the Hawaiian sun right before her birthday (the story of how this came to be may be told later.) She got lots of natural VitD from the sun and she went almost daily into the healing salt waters of the pacific ocean. For the past month, we really haven’t done much of any other therapy, except Reiki. In the past week, when I have noticed her skin is rough or otherwise lacking sheen and vitality, I have done shonishin infant massage. But really, this past month, up until the last week, her skin has been outstanding. Lustrous, and not dry, like it had been in the previous months.

She has been in great spirits. She has been practicing standing and has been repeating words after me (“behr” for bear, “iraf” for giraffe, “itty” for kitty, and of course, “ma” “da” “jah” and “bebe”). She waves to people all the time. She claps her hands and clicks her tongue and plays games.

In other words, there were reasons to believe she was doing better. There were also reasons to believe she wasn’t doing super (paleness, loss of balance, sudden weakness…)

As it turns out, Adahlia’s hemoglobin was 8.5 yesterday. This means she will go another week, and we are looking at another 5-week transfusion window. This is only the second time she has gone 5 weeks (the other time was back in April.) The doctors recommend transfusion at 8 and below. (A healthy child’s hemoglobin is typically between 10-12.)

Its very interesting. The formula she is has been on is, again, the one aimed at removing hidden pathogens, called gu, from the body (certain pathogens, like viruses, can inhibit RBC production and even change DNA.) Doctors don’t think that she has a pathogen because she does not exhibit established symptoms, but this, if it is what I am speaking of, is something much subtler than what biomedicine or western medicine typically encounters. It is something that would require multiple books, or lectures and discussions, to explain, because it shakes up the ways we view and understand the world. This isnt the place.

The point is that between April and now, we had switched her formula, perhaps prematurely, from the a gu-removing formula to a tonifying formula. Also, the herbal supplier we were using were perhaps a supplier of inferior quality herbs. (We were doing it because it was cheaper.) But the supplier of higher quality herbs has graciously lowered its price to meet that of its potentially inferior counterpart, and so she has been having the benefit of the best herbs. (Why might it make a difference? That’s another subject altogether and this post is already much too long.)

The bottom line is that I still have hope that we are discovering a natural, herbal, remedy to an extraordinarily rare and devastating condition. The theoretical implications are enormous, as well as the potential benefit to other people suffering similar blood disorders or who have what is understood, at present, to be a condition due to genetic mutation.

Adahlia’s story is her own. The heartbreak and joy of it reflects God and all of mankind. As we insisted we were pregnant, she is not mine, and if she is not mine, she certainly is not anyone else’s either. She belongs unto herself and to God. As her guardians, tested to our depths, we raise up this knowledge we’ve gained. We are not giving up.

“Your presentation will be inspirational for anyone actually listening.”

You may have noticed the newly posted slogan (motto? caption?) for Adahlia’s website.  It  used to be: “Life is miraculous” – which is true. But the new slogan is more specific to Adahlia, to the day of her birth.  It is a very interesting story, a bit of synchronicity, which I now wish to share.

I created this site back in March of this year.  It was 7 months exactly since we first rushed Adahlia to the Peds ER in August, our hearts pounding but our exterior calm, because we are the sort of people who have been extensively trained for crisis situations, and after stopping at home to grab the breast pump, extra diapers, and organic swaddles, because her pediatrician had just gravely told us she was in danger of heart failure at any moment, and we know nothing but the fact that our own hearts are in throats, and so I am packing bottles of frozen milk and a couple changes of clothes for us all, because something deep within me is whispering that this, whatever it is, won’t be solved in a matter of hours, that the terrible thing I had suspected since her birth (“something is wrong“) is true, and then we are in the ER, and immediately rushed into a room because they are expecting us (her pediatrician had called ahead to warn them of an incoming infant with a hemaglobin of 1.9), and teams of nurses are coming at us from all angles, and placing monitors and IVs on and into Adahlia and she is screaming, screaming, screaming, and we stand like the eye of a hurricane, if the eye of a hurricane had yet another, invisible eye within its still eye, where it blinked both watchful and swirling, overwhelmed by the furious activity around it, feeling more than a little bit scared, yet strong, and very protective.

Yes, it was seven months since that incredible, life-altering, life-saving day. And approximately six weeks before that day, Adahlia was born on the full moon of July. Her birthstone? A ruby. The color of blood. When Joe went back to work, two weeks after Adahlia’s birth, his coworker brought him a page from her little desk calendar for the date of Adahlia’s birth.  The coworker’s calender offered various quotes or sayings that were supposed to be business-related and inspiring to the businesswoman.  But the page from the date of Adahlia’s birth seemed particularly interesting to her, so she kept it, and wanted us to have it.

The picture accompanying the saying depicted a scholarly scene with an ancient, traditional Chinese elder acting as a teacher.  It was interesting because I am a practitioner of Chinese medicine, an acupuncturist, and I had spent the last four years learning from ancient Chinese texts. But what she thought was most interesting was the message:

“Your presentation will be inspirational for anyone actually listening.”

Being a very spiritual as well as religious woman (Christian), this co-worker found the quote significant, a sign of something profound about Adahlia. She gave the page to Joe, who gave it to me, and I, naturally, also found it interesting. But, at the time, Adahlia was only 3 weeks old.  Sure, she was beautiful, but she was only a tiny baby.  What could it possibly mean? At what point would she become “presented” to the world? And why?  How would her “presentation” inspire others?

Six weeks later, the hospital.

Seven months later, this website.

Amen, I say: Let this beautiful child be an inspiration to all those who are listening.

An Experienced Nutrition Consultant!

Fantastic news!  We have Diana Wright on our team!  Hooray!!!!

If you’re a friend of ours, I’m sure that right now you’re thinking “Hooray!” immediately followed by: “umm…who is that?”

Diana Wright is the amazing nutrition consultant in the UK who worked with a boy with a mysterious blood disorder, similar to but not exactly like Adahlia’s, and helped get him transfusion independent.   I first found out about her back in the fall, when Adahlia still didn’t have a diagnosis beyond “mysterious blood disorder,” and I was on the internet daily, either while pumping milk in the deepest hours of night or while lying next to her, ready to comfort her when she was moaning in her sleep, digging up anything I could find on blood disorders.  Read the article that inspired me to contact Diana and learn how she successfully treated a young boy using leucine and other supplements here.

If you’ve been keeping up with my posts you know that I recently contacted the researchers of the leucine clinical trial starting soon in the US.  Adahlia is too young to participate; researchers don’t know how high doses of leucine would affect an infant at this time.  But the researcher wrote me back, answering all my questions, and included the Czech Republic study on leucine from which they are basing their dosages.  Very helpful people, these scientists.  I love being part of the medical community.

On June 8th, I finally sent an email to Diana.  And then waited.  And then today, I experienced a huge amount of relief when I checked my email, and discovered the following response:

“Bless you. I would love to help you. Can I read this and then can we arrange a skype call for next week?”

Elation!!!

I have no idea what she’ll cost but I don’t care.  She’s the only nutrition expert I know who has successfully treated a child’s blood disorder with nutritional supplements.  If you want to help us out financially, we could still use all the support we can get.  (See our exciting, new fundraising page here… and thank you to everyone who has already helped us out!)

I am just so darn jazzed about this latest development.  Diana will be a fantastic addition to our team.  In the meantime, we are still doing chinese herbs with Adahlia, and no, I have not given up on them.  I will write more about Adahlia’s current health status, as well as mine own, soon.

If you haven’t visited it recently, pictures from Adahlia’s 1st birthday are now posted under “Pictures” on this website.  Joe and I are also kicking around some zany and kid-friendly “funraising” ideas for Adahlia in addition to the “fundraising” … we’ll keep you posted because we’d love for you to come play with us.

If you’re curious, my email to Diana follows below.  Love and blessing to you and yours!

***

Hi Diana,

I am writing to seek your professional assistance with the nutritional care of our daughter, Adahlia, who has been diagnosed with Diamond-Blackfan Anemia.  She just turned one year old on July 3rd.

I read about your success using leucine and other supplements in treating a boy in England who suffered from a mysterious blood disorder.  I wanted to contact you because I do not know any other nutritional expert with your experience.

Adahlia was first taken to the hospital at 6 weeks of age, with a hemoglobin of 1.9.  She has needed a life-sustaining blood transfusion approximately every 4 weeks since then.  The doctors have found a “mutation” in gene RPS 26, which they have identified as a marker for DBA.  She is slightly neutropenic but is capable of mounting a successful response to infection on her own. She is otherwise healthy and developing according to all milestones.  She is a beautiful, bright, active, and inquisitive little girl.

We live in Portland, Oregon.  Her doctors want us to start her on a trial of steroids to see if it increases RBC production.  (She is capable of making normal RBCs, the problem is that she doesn’t seem to make enough, in an appropriate response to the natural, timely death of RBCs. Her erythropoietin levels are high, so that is not the issue.)

Researchers in the US are starting a leucine clinical trial for DBA this year, but Adahlia is too young to participate.  The minimum age to be included in the trial is 2 years, and as I said before, Adahlia just turned 1.  They apparently have concerns about side effects of high doses of leucine for someone under 2.

Personally, I am even more concerned about the side effects of steroids – she is absolutely fine other than the blood issue, and I don’t want to impair her growth or risk the cognitive issues associated with steroids.  I believe the potential side effects from amino acid supplementation are less severe, correct?  I do not wish to start her on steroids and then learn that I could have treated her with leucine.  My intention is to keep putting off the steroids a little longer, as long as it seems to make sense, anyway.

I would like to consult with you about her condition.  I would love to do phone or video conference call and we could possibly fly to England if absolutely necessary.  Or, if you know someone in the US, we could potentially work with them.   We could get nutritional and other tests ordered through her doctors here in Portland, which have been relatively accepting of our attempts at natural healing methods to date.  I am an acupuncturist with a fair amount of nutritional training, and have been working with a trusted professor to administer appropriate chinese herbal therapy.

Please feel free to get in touch via phone or email.  My number is xxx-xxx-xxxx.  Thank you!

All the Best,Erika Marie

City Blood Shortage!

The Portland Chapter of the American Red Cross has announced a blood shortage of all blood types.  (We just heard it on the radio.)  Adahlia has been exhibiting signs of low blood and we expect she will need a transfusion next week.  Apparently donations have been down recently.  Blood is a priceless gift.  Make an appointment now, while you’re thinking about it, to do something wonderful for someone!

BE A HERO!  GIVE BLOOD!

Phoenix

Today, down by the Saturday market, next to the rock sculptures, near the cherry trees, a young wedding party took pictures. They were in a different kind of wedding attire – perhaps traditional for their culture – the women wore tight, sexy black dresses, the men wore red shirts and black pants, with black cowboy hats. The bride wore a full-skirted, red gown bedecked with iridescent sequins, some of which created a shimmering, purple-blue-red river cascading down the front, brilliant in the sun, a sparkling gold bouquet in her hands. It was anything but tacky. She was a fire goddess, a beautiful young phoenix in human form.

We had been playing with Adahlia in the grass several yards away. But Adahlia is at a stage where she does not necessarily want to actively play with me all the time. I know she loves to be with me, but sometimes, when she is not low on blood, I can leave her for a time in the company of her father and all is well. So, after several minutes, my curiosity could no longer wait. Leaving Adahlia in the grass with her father and grandmother, I walked toward the wedding party. I skirted them, drinking in as much as I dared, not wanting to offend or stare. On my way back, I skipped lightly on the rocks. In such tiny moments, I still find great pleasure in the freedom and lightness of my body, the memory of the heaviness of pregnancy and the weariness of my illness still so fresh.

I was strolling quickly, and I was probably gone no more than 3 minutes. But apparently Adahlia had crawled after me, as far as she felt she could, and then gave up, crying. Her father then scooped her up and was trying to console her as I returned.

I had no idea.

I had not heard her.

And when I found out, my heart sank. My stomach followed. And I wished someone had called out to me, so I could have turned around, seen her, and gone back to her. It breaks my heart that I kept walking away.

***
She still reaches out for me in her sleep, seeks my skin with her fingertips. I curl my arm over and around her head, kiss her face when she moans and cries out in her sleep. She rolls away, her back to me, and then rolls closer, her arms flung over mine, her leg hitched up on my waist, as close as she can get.

***
Fire phoenix, jewel of summer
Shimmer on the tide
Do not turn my eye.

Leave me to the moonlit shadows
Let winter settle softly in the night.

Happy First Birthday, Adahlia!

Yesterday, Adahlia celebrated her first birthday. She has witnessed one full revolution of the earth around the sun.

It was a wonderful day for her. She loves being outdoors, so we took her on a short hike to a waterfall. Then we returned home, opened presents, and shared a pie crust filled with fresh berries. Her grandparents and her uncle were in attendance.

I can happily say that she adored her birthday, and all the amplified attention and love she received. She opened each gift and all her cards (I discovered that tissue paper is easier than wrapping paper and fun for little hands to tear). She clapped her hands with joy and examined each of her gifts with bright eyes, handing books to me for me to read to her, kissing stuffed animals on their mouths, and laughing. We blew paper noisemakers, which she found strange. She pointed at her Happy Birthday sign several times, saying, “bu!” When it came time for dessert, she sat erect in her high chair, and we presented the pie of fresh berries in graham-cracker crust, with a number 1 candle nestled into some Tru-whip. She looked a bit solemn while we sang, until Joe and I blew out the candle, and then she reached for the pie, grabbing a raspberry in one hand and bringing it to her mouth, and then taking a blackberry in the other. It was the perfect first birthday cake for her! Kicking her legs and giggling, she squeezed and mashed and ate berry after berry, and a little graham cracker and whip, too. She made a huge mess, smearing bright links and purples all over her face and hands, and despite her bib, eventually all over her beautiful, simple, white cotton dress. When she was full, she eagerly fingerprinted large swirling colors all over her tray. The entire time, she engaged her various guests with her own “raspberries,” babble talk, waving and head tilting. (She likes to look at people sideways sometimes, these days.) It was absolutely fantastic. And I while some first birthdays are awkward events for the child, and in some ways, may be more for relatives than for the child, I can assuredly say that she LOVED her birthday celebration. I will post a couple pictures soon.

Everyone left after we ate the pie, and as she was born in the evening, Joe and I were left to enjoy her in peace and reflection of what had occurred 365 days ago. It was a phenomenal day. There is absolutely nothing like birth, and we gave birth in the most amazing setting, at the Andaluz Waterbirth Center, under the care of some rather extraordinary midwives. The birth was incredible. It was a sweeping, romantic experience, supernatural, in every connotation. And so it felt like destiny that as the hour of her birth arrived, I stepped into the tub with her and washed all the berry juice away. After dressing her for bed, and while talking with Joe, she fell asleep in my arms, breastfeeding, about five minutes before the moment of her birth.

As a commemoration and celebration of her life thus far, I could not have wished to give her a better day. I wish to thank everyone who has sent prayers, love, and light. I wish to thank everyone who has given blood to her her, and those who remain anonymous, who had no idea that their blood would save the life of an infant girl when they stepped forward and offered their arm. I wish to thank all midwives, doctors, nurses, and other medical professionals who have brought her to this day. I give thanks for natural, modern, and spiritual medicine, and the love and support of friends and family. I give thanks for Joe and for myself, for my strength and the inner resources which carry us through the toughest moments. And I thank the supreme mystery of this extraordinary, beautiful young being, of the path we walk.