Signs, signs, everywhere signs

I’m lying next to Adahlia tonight as she’s already fallen asleep and I can’t. I’m too ramped up. I’ve been exchanging emails with her latest hematologist and as I’m lying next to her, in the dark, I hear myself vowing aloud to the room:

“I am determined to help you. I will find a way to help you.”

Signs. You see, one of the first things you learn in medical school – of any medical tradition – is the difference between signs and symptoms. A sign is something observable, that the doctor detects, like a fever, and it’s typically considered objective. A symptom is something the patient reports, like “I feel hot and cold and loopy all at the same time” and it is typically considered subjective.

There have been a slew of recent signs regarding Adahlia. First, at the last transfusion, in January, her Ferretin was back up from 750 to 900. Ferretin is used as an indicator of iron overload, but it also rises in cases of inflammation. There are no conclusions to be drawn yet – it could be that the Exjade medication isn’t working, or it could be that the fresh juicing we are doing with our brand new Champion 2000 juicer (Merry Christmas from Mom and Dad) is temporarily raising inflammatory markers as it clears out her system. (The juicer matters, apparently, when it comes to juicing. It makes sense now, but a year ago, I thought juicing benefits were juicing benefits. Nope! Big difference. The juicer matters.)

Second, we did another nutritional analysis on Adahlia. Some good news: some nutritional deficiencies were corrected. Others seemed not to change. Others worsened. And: new deficiencies appeared.

It’s most frustrating.

I’m still trying to discern a pattern. One interesting thing to note is that most of her vitamin and mineral deficiencies can be sourced in her current favorite foods.

??? I know. It means that she’s either not absorbing her food properly, or that she is drawn towards the food her body needs most, in an unconscious attempt to correct her problem, or both. Either way, she’s eating mostly what’s she’s deficient in, and yet, she’s deficient.

The most intriguing sign, however, right now, is the one that says that she is still deficient in vitamin B12. Her nutritional analysis last year said the same thing, and so for the past year, we have been supplementing her heavily with B12. For a year. I’m talking heavy. And she’s still deficient!

This is bad. B12 is necessary for building blood. A chronic lack of B12 can lead to permanent nerve damage. It’s an absolutely vital nutrient on a systemic level.

What’s interesting is that Adahlia’s red blood cells, the few she does make, are macrocytic, meaning they are extra big. Macrocytic red cells are caused by B12 deficiency. So is her anemia partly due to a lack of B12?

What’s confounding is that macrocytic red cells can also be a trait of DBA. And the difference between the anemias is supposedly pretty clear when looking at a sample on a smear.

What’s also interesting is that I was B12 deficient after several years of being vegetarian, and required monthly B12 injections for awhile in order to get my body back into balance. I suppose I would again become anemic if I don’t eat properly — ie, foods rich in iron and B12. And Adahlia is a self-imposed vegetarian. She simply doesn’t like red meat, and barely touches poultry, though she will occasionally eat fish.

So we have a bunch of signs, a lot of them flashing “doom” and “look at me!” and “get worried!” But I’m not. Yet.

I’ve asked her hematologist to consider IV B12 administered before or after transfusion, since she might have an absorption issue, and it’s such a vital nutrient. He’s baulking a little, and has agreed to retest her systemic B12 and go from there. I think he’s just a little intimidated. That’s ok.

The bottom line is that her cells don’t care what we call it. Macrocytic anemia, Diamond-Blackfan Anemia… The bottom line is that she appears to be chronically deficient in a vital nutrient, a nutrient necessary for building heathy blood cells, among other things.

Would adequate B12 help her produce her own blood? Would it normalize her cells? Maybe. But the DBA issue isn’t actually my focal point. I want her nutrition analysis to come back normal. I want her to show adequate amounts of everything vital in her system and then, if she still has DBA, if she still needs transfusions, okay. Then we can look at fixing that. But there is no way you can expect anyone to produce their own blood and be healthy if they are chronically deficient in vital nutrients like vitamin B12, calcium, selenium, and serine. Without such things, you simply won’t be your optimal you. You have to have the nutrients you need in order to well… umm… live.

And so that’s my goal. I want her to be nutritionally healthy, to have everything she needs to build what she needs. So that even if she has anemia the rest of her life, and needs blood transfusions, she will still be able to be her optimal, healthiest, happiest self, because she has the necessary nutritional building blocks.

Two nights before my birthday, I had a sign of a different sort, the sort of sign my very spiritual, and mystically inclined friends, would appreciate. And so to balance all the scientific mumbo-jumbo, I’d like to share it with you now:

I dreamed I was at West Point, the me I am now, but I was in my Firstie uniform (Senior Cadet, high ranking), so no one bothered me. I was looking for two of my friends, and of course, everyone there were the cadets of today. Companies were in various formations throughout the Cadet Areas. The companies in Central Area were in Battle Dress Uniform (fatigues), and so was I. They were loading trucks, wearing kevlars, wearing LBEs, apparently getting ready for the field. Bamboozled plebes were standing in formation as upperclassmen shouted orders at them. Walking briskly past the groups, I passed a solitary Army Major walking the opposite way – I almost didn’t see the little gold leaf insignia on the Kevlar that identified the active duty officer from cadets. I had already taken a couple steps past the officer and cringed inwardly, then executed a quick, if sloppy, about-face before the Major could decide that he was annoyed and should correct me on my lack of observation. I saluted. “Good afternoon, sir!” I said automatically. “I apologize for not seeing you!”

The stout major had a pretty face.

“And I apologize, again, ma’am.”

She looked like someone from my more recent years, a mentor from a different school.

“Do I look like a man to you?” she said.

“I’m so sorry, ma’am.” I grimaced. “It happens to me, too,” I added.

She grinned in camaraderie and waved me on. I entered the nearest grey granite entryway, which should have opened into Washington Hall, the Cadet Mess Hall, but instead opened into a barracks, the interior walls painted the familiar, oddly-chosen bright, blue-green of Pershing Barracks.

The stairwells were full of cadets, and these ones were in Full Dress, as if about to go on parade. Strangely, they stood in formation on the stairs, row after row, locked at attention while the senior cadet training officers combed the rows, looking for anyone even slightly out of place. I was in my Full Dress too, complete with my Training Officer stripes. I passed by without anyone noticing, naturally. A glance told them my rank and status. They had jobs to do and more important matters on their minds, like the respectability of their companies. They assumed I was on some errand.

And I was. I sought my friends. One of these friends was Joe, and one was his friend (actually, a mutual friend) from our WP days. I had just left them, or rather, they had left me, after I told them I’d catch up.

I was sweating in my Full Dress – I had forgotten how hot the wool gets, how the stiff, starched false collar cuts into my neck, how heady and muggy the non-air conditioned hallways get, especially when the plebes are stressed and the upperclass are hazing. I wiggled my arms inside their wool sleeves to encourage airflow.

I took the stairwell up to the roof, and was astonished to find myself outside in another North Area. The sky was pink and orange like sunset.

“How did they put another North Area on top of North Area?” I wondered.

But this North Area was different than the other one below. Instead of a sea of asphalt, the large area surrounded by granite barracks was a field of grass encircled by a sidewalk. The grass was fenced off by a single rope, more of a suggestion than a barrier. Inside this barrier, there were goats and llamas and strange similar beasts, grazing on the grass. An older woman tended them. She wore simple, heavy, clothes, a native or indigenous woman from a time long ago, or a place far away.

As I gazed upon the animals, she spoke to me.

“Ahh, but he’s the pretty one,” she said, gesturing to one of them.

A strange llama-like goat-like animal tossed his head and stepped towards me. He was no bigger than a large dog, with very large eyes, and a large alien-like head, and his fur was brown except on his head and neck, and there it was green. He was odd. But pretty, yes, in a strange way, with a strong spirit.

I suddenly realized I could ask this woman for help. I turned to her.

“How will I find my friends? Which way is my quest? Which way is my path?”

I knew I would ask the first question, but the second and third spilled out of my mouth, surprising me.

She smiled and began to move, but I could not hear or see her. Everything was turning white.

I became aware that I was lying on my back in the dark, a point of pressure on the tip of my nose. Eyes still closed, I came fully awake as I realized that Adahlia was touching my nose with just the tip of her finger. Her even breathing told me she was still asleep. After a while, she dropped her hand to my chest, just under my neck, her fingers and thumb making a natural “v” at the base, on my sternum. As I lay there amazed, barely able to believe what was happening, and not wanting to break the spell, she somehow slid her other arm effortlessly underneath my back, palm directly opposite her other palm. Energy flowed between her two hands. She had answered my questions. She was strengthening my heart. This tiny little being, in so much need herself, was helping me.

Now, I don’t know a lot.

But there are signs everywhere.

We just have to notice them.

Hee hee, ho ho, and important things like that!

If it sounds familiar, its because it’s a line from the holiday classic, Rudolph the Red-nosed Reindeer.  A week or two before Christmas, while I was making dinner, Adahlia walked into the kitchen and much to my amazement, said:  “hee-hee, ho-ho.”  I giggled.

Our Christmas was amazing, and we discovered that Adahlia absolutely LOVES Christmas.  She loved the fact that everyone was celebrating a baby, and she loved all the lights, and reindeer (which she already loved because of the movie Frozen).  She loved that the reindeer could fly and that Rudolph had a shiny nose.  (She still loves to put on her fairy wings and fly.)  She loved making ornaments to put on the tree (reindeer ornaments, naturally, amongst others).  She loved baking Christmas cookies on Christmas Day and listening to people sing in the church and eating the snow that miraculously started to fall on Christmas afternoon.  (She pronounces it as “schno.”)

Eating Christmas Snow

Eating Christmas Snow

Every day for the last month, Adahlia’s asked to watch “Rudoff – schiny- nohse” and “Frahtee schnoman”.   She is starting to talk more, and everything she says is just about adorable.  A couple weeks before Christmas, we went on a walk of the lights strung through the large park near our house.  There was a tent with Santa inside and I lifted her up to show him to her through the plastic window.  To my surprise, she immediately tried to squiggle out of my arms and began pointing to her chest, saying “Adah-da”, meaning that she wanted to meet him.  We stood in line in the cold for over an hour.  It was the first she has met Santa, and Joe was surprised she even knew who he was.  But she definitely did.  She was so excited!  She walked right up to him and let him lift her onto his lap. “What a pretty coat you have!”  Santa exclaimed.  He asked her if she wanted a doll for Christmas, and she said yes.

Talking with Santa

Talking with Santa

I was not expecting him to ask such a thing, and I was thrilled.  You see, six months ago, I had ordered a hand-made doll from a lady in England that makes waldorf style dolls.  On Christmas morning, Adahlia found her new baby sitting up on a chair next to the Christmas Tree, and she immediately hugged her to her chest.  She spent the next few days telling me how she now has two babies, and holding up two fingers.  Unlike her other baby, which looks like a swaddled infant and is called a “heavy baby” because she is weighted, this baby’s eyes are open, and she has little fingers and toes, a diaper that can be changed, a little yarn bow in her hair, and an outfit that includes booties and a hat.  Adahlia loves hats, socks, counting and doing diaper changes on her other baby and stuffed animals, so I knew she would love her new doll.  But it won’t be until tomorrow that she learns what makes this doll extra special — she has a little felt blood bag, with tubing and a velcro armband attachment, so that her baby can get a transfusion too.  When I told the lady in England about Adahlia’s condition, she offered to make it in addition to the doll.  I hesitated — I didn’t want to Adahlia to be the girl who has a doll with a blood transfusion bag now, much less in six months or a year.  I was — and still am — struggling a bit with accepting her condition as permanent, as incurable.  But I knew that to refuse the offer because I didn’t want my daughter to be transfusion dependent was not only being willfully blind, but unkind.  I didn’t want my daughter to be transfusion dependent, but she was.  A baby to receive transfusions alongside her would allow her to have a friend also going through it, and would help normalize her situation for her.

The doll certainly did not come cheap.  But she is soft, and made of natural material.  Like with all waldorf dolls, her face is sweet but intentionally minimal, so that the child’s imagination can supply the details.  Of course, there are moments when I wonder if Adahlia would prefer a gorgeously detailed doll, or even just a cheap, plastic, realistic one.  But then a father on the playground tells me that his daughter’s doll “poops” jewels… and a six-year-old girl with multiple plastic dolls asks me:  “where do you get a baby like that?” (she was referring to Adahlia’s infant baby), and I feel fortunate that we were able to choose to limit plastics, and go the natural, handmade with love, route. Besides, the following photos say it all:

“Hee hee, ho ho, and important things like that.”

If you recall, the elf in question (Hermie) wants to become a dentist, and the elf-in-charge is telling him that he’d better learn to do the important things in life, because the desire to be a dentist is ridiculous.

It’s very funny.  And it’s meant to call attention to the fact that so many in the mainstream aren’t thinking about why they are so darn sure they are right about what’s important.  In our culture, many parents would applaud a desire to be a dentist, while they would mock (gently or otherwise) a desire to make toys.  In the elf culture, its the opposite.  The line is meant to show us that we believe what we believe because we are told its what to believe.  Because its the accepted path.  Its not necessarily right.  It might not even make sense.  And it certainly doesn’t make everyone happy.

It is SO important to break through that in oneself.  To learn to become one’s own master when it comes to one’s own beliefs and thoughts.  There are a lot of movements within our society that I feel are positive, that advance our humanity and push it towards it’s highest expression.

There are also an awful lot of movements in society that are just plain awful: ignorant, foolish, wasteful, and sad.

Why are we so afraid of the different?  Rudolph and Hermie are lovable characters because they so clearly represent something that nearly all of us can all identify with, at least to some degree.  You can switch out the characters and location, but the story remains the same across cultures.  The question remains:  Why is Rudolph’s shiny nose always rejected?

Why is it that so very few people in positions of power have the ability to say, “oh, okay.  hmmm.  interesting.  run that by me again?  ok, well, that’s weird, you know.  but, let me see how i can help you.  let’s see how we might integrate you.”

Perhaps it’s like Christmas.  If everyday was Christmas, it might cease to be appreciated.  If everyone was enlightened, it wouldn’t feel so fabulous to have someone believe in you, to back you in your endeavors.

Or perhaps, the truth is, that we are all growing here.  We are all learning here.  Some people play the role of bullies, and some people are in the role of the bullied.

I believe in the importance of integrating differences together, in finding how we all fit together, to coexist together.  In the same way, I believe in integrative medicine.  It only makes sense, because we are integrated people.  We are people with bodies, minds, emotions, and spirits.  There are multiple dimensions to who we are, and when one part of us falls to the wayside, the rest of us eventually suffers, too.  We cannot ignore any aspect of who we are.  Why would we think that we could ignore aspects of our health or treat only one part of us with one type of medicine?  Think about our homes.  We cannot stop doing the dishes.  To run a healthy home, you’ve got to attend to all parts of the house, not just the roof, no matter how important the roof is to the structure of the house.  You’ve simply got to sweep, eventually.  It’s the same with medicine, society, and the globe.  You cannot hold onto one thing and say: “This.  This is it.  This is the key.  This is what’s important.”

It’s all important.  And quite possibly, we oversimplify because we can’t quite wrap our heads around the complexity of the ways in which everything interrelates.   So we come up with a few axioms and we decide that this is right, this is wrong, this is love, this is not love, this person is good, this person is bad, this time was happy, and this time was sad.  And we hang up our hats on phrases that couldn’t possibly encapsulate anything real.

Before Christmas, Adahlia could count to five.  Now, she can count to ten, and she can apply the numbers, too.  For example, she can get me two apples from the refrigerator, or four celery, or five carrots.  She will ask for three more treats for the cat if I’ve only given her two, so that the cat can have a total of five.  She knows all her letters and can find them.  Today, for the first time ever, she drew a “0” and told me it was an “o”.  It was the first letter she’s ever written.  She then drew a backwards “c” and told me it was a “c.”  She “reads” books to herself out loud, although I suspect she’s actually memorized them and isn’t actually reading.  She says small, full sentences.   Up until this week, she had difficulty with her pronouns — she referred to herself as “you” and would say things like “hat, you,” meaning it was her hat.  She still does that sometimes, although she’s recently started using the word “me” to refer to herself.  She loves to draw and color.  She has two “imaginary friends,” and she invites them into the bathtub with her and helps them step over the edge of the tub.  She breaks off bits of her food and gives it to them before she eats it.  She will put her boots on and pick up a purse or bag and tell me that she is going to their house, and leave the room.  She then comes back and tells me that she couldn’t visit them because there was too much snow at their house.  She loves Toothless from How to Train your dragon and calls him “Hamiya Da-dawin”, because he looks like Hamiya, our black kitten, who we adopted mid-October and she named.  She carries Hamiya and dances with him, and tries to share with him everything that she loves to do, like putting him under a blanket so he can “hide” and then lifting it up to “find” him.  She loves to play hiding games, and will “hide” in plain sight, inside the bathroom, curled up on the floor, or in the pantry with her back to the doors, covering her eyes.  Its been a whirlwind of winter firsts:  first time on ice skates, on skis, and sledding.

And tomorrow she will have her up-teenth transfusion, and her new baby from Santa will have her very first.

And its all important.  Its all beautiful, crazy, sad, wonderful.

And very temporary – our opportunity to experience and impact it.

Love, love, love, love.

It’s the hee-hee, ho-ho, and important things like that.