Dreamcatchers & Vigils

I’d be more eloquent but I’m in that in-between place where my mind is full, I’m tired, and I’m just… waiting.

Waiting for dawn to come, her to wake, and motion to begin.

I know there are things I can do. To help me sleep the night before her transfusion. And no I don’t mean medication. There are herbs, supplements, homeopathics, meditation techniques… I know many things that work.

But truth is, I’ve actually been sleeping fine. In fact, I was dead asleep having a fantastic dream until the toes of a small foot gripped onto my calf and flexed rapidly, in spasm, literally tickling me awake.

Have you ever been tickled awake? It was a first.

That happened at 2:39 am and I haven’t been back to sleep since.

It makes me wonder: Does she want me to be awake these nights?

It would seem fitting. To hold some sort of vigil on the night before transfusion.

It’s a mix of emotion that simply cannot be processed and purged. The expression of any one thought or feeling exludes the expression of the other, and its all simply too “packed” to express anything. I feel it all. I’d like to scream-laugh-cry-hit-smile.

I feel trust-dread-fear-peace-joy-gratitude-grief-longing-panic-rage-generosity.

I do wish I’d rested more fully, though, so I’d have more energy and clarity and for what’s ahead.

Last month, I used a numbing creme on her arm. I numbed a good 6 inch diameter circle of area where she typically gets the IV, in her inner elbow area. We had a new nurse; never seen her before. Of course, I was suspicious. Things rarely go well with new nurses. But I gave her a chance. And I kid you not — she “stuck” Adahlia outside the numb area. Practically half-way down the inside of her forearm. Said she felt a valve in her cubit (its not a valve, its scar tissue.) Adahlia screamed like bloody murder… and I had been promising her, the entire car ride there, that it wouldn’t hurt because it would be numb.

I was so damn pissed.

But, unsurprised.

(A string of muttered expletives would like to escape my fingers right now.)

Breathe in, blow out.

This same nurse, when Adahlia later fearfully whined, asking her not to draw so much of blood because she needs it (the amount of blood drawn for labs was actually routine, but I think Adahlia just no longer trusted this nurse), said, “Don’t worry honey, you make new blood all the time. You’re making new blood right now.”

I almost didn’t say anything. I’m just so sick of educating folks who should know better. But it was so blatantly… dumb.

“Um… actually, no,” I said. “She doesn’t make her own blood. She has Diamond-Blackfan Anemia. That’s why we are here.”

Ugh.

At any rate, because I can’t talk about how I’d like to do some sort of tribal grieving-wailing-ferocious dance right now, let’s talk about dream catchers.

There’s chinese medicine, actually, for children with night terrors. Isn’t that cool?

Such things were actually treated with concern back in the day… because clinicians actually cared about the psychological well-being of children, and genuinely wanted them to feel safe, and knew the importance of a holistic approach to health, because mental stress can affect physical health and vice versa.

(Sorry, I’ll try to filter better next time. <mutter doctors mutter mutter nurses>)

Anyway, sometimes I give the herbal medicine to her, and it does work. But she’s got so much going on in that body of hers, that more often than not, I don’t give it to her (she likes it though; she says it takes good.)

We went to Denver Art Museum for the first time this past Sunday. We had a wonderful time. And, while there, we bought a dream catcher for her. Why?

We were in the gift shop. She walked up to it, picked it up, touched its feathers, and asked me what it was. I explained. Her eyes widened. I knew what she was thinking — that it was perfect for her. She asked for it, said she needed it, and of course we bought it.

Guess what.

The darn thing works.

For me, too.

(I’d been having a run of intense dreams myself. The other night, I was in an airplane crash, was burned alive, drowned, and had maze of concrete tunnels collapse with me inside it, all in the same dream.)

Anyway, moral of the story is: for bad dreams, while of course I’ll tell you that you should consider a chinese herbal formula for settling the Spirit, there’s also the dreamcatcher.

We’ve had it for two nights now and I’ve grown quite fond of it. I really do feel like it zooms around at night, collecting dreams, and only the “good ones” know how to find their way through the web.

I think my “New Baby” gift ideas for friends now has a new item.

Well, I think that’s all I can write right now. Adahlia will get blood in about 5 hours, and will live an extra month, if all goes well.

I am grateful. Sad. And very tired.

There are things I can do for it — powerful meditations with Reiki to gather energy and clarity.

I know this. And I know the dawn will come.

It’s just been a long night. Staying awake; holding vigil.

Green “Superfoods” & Oceans

DBA is a baffling, confounding, and all around pest of a blood disorder.

I decided, about a week ago, that we should start making green smoothies. Why? Well mostly because I have this old jar of Amazing Greens Superfood and I thought we should use it. In the past, we’d also noted that Adahlia tested positive for AFA blue-green algae, which is helpful as a blood-builder and also for removing viruses from the blood stream.

So I figured, why not?

I tossed in several great superfoods. Blended well, and she drank maybe a cup once a day for 3 days.

Suddenly, she wasn’t the same person anymore.

When I went to pick her up from school on Tuesday, she lost her sh*t on me. I apologize, but really, that’s the only way I can describe it. I showed up and her smile turned to a scowl. I tried to put her in her coat to go outside, and she began shrieking at me hysterically. Truly. Shrieking. Then she wouldn’t go to the car and was literally running from me. The teachers ended up having to call all the other children back into the school so that I could calm and corral her alone in the yard. It was an incredible regression — absolutely mind-boggling. Probably the worst of all her 3 year old tantrums magnified by at least 10.

The next day we had a play date with a close friend. She’d been looking forward to it all day. But when the friend arrived, again, she wasn’t herself. At first she just seemed over-excited, dashing from room to room, and I could not get her to settle, no matter how I tried. Eventually, once the friend started crafting, Adahlia calmed down, but it was only a settling into a super-bad mood. She glared at us, refused to play, and refused to do, well, anything. I tried several methods of redirection and calming and reframing and nothing worked. Her little 5 year old friend even tried several methods. Our friends eventually left.

That day, I decided enough was enough. I decided to “test” her for her supplements. In the past, we’d flown out to my mentor’s clinic, Heiner Fruehof, to do testing with his MORA machine. My parents paid for flights for awhile, and then I bought tickets for as long as I could, and then, I had to give it it up. Necessity being the mother of invention, and of course there’s the hand of God or Fate, I happened to attend a workshop where the instructor, as an aside, taught Fascia Testing as a technique for choosing which Extraordinary Vessel points would be best for a patient. It’s similar to muscle testing, but relies not on muscle strength but on a subtle fascia response. Since the best and most plausible physical theory of acupuncture channels is through their descriptions as Bon Han channels — channels of flow within fascia, where nodes have been found to correspond to acupuncture points, and where communication happens faster than through nerves — using fascia to test makes sense to me. I have, after all, been developing my ability to sense its subtle changes for a decade now. I adapted this instructor’s fascia testing technique for points to be used to test supplements, and it works amazingly well.

Anyway, I did fascia testing of perhaps 30 supplements that she’s taken at one point or another. Not surprisingly, her body DEFINITELY DID NOT WANT the super greens. Nor did it want the algae.

Surprisingly, it also did not want any of her probiotics. Nor her B-6 multivitamin. Nor her B-12 with folate.

But it did want the pure folate. And fish oils. B3 (NADH) and DMG… and two Chinese herbal formulas — one for children to help digestion, and one for settling the spirit. (I give her the one for digestion in the morning, and the “settling” one at night. Let me tell you, her quality of sleep is remarkably improved.)

There were lots of other things we tested.

Oh, here’s something interesting: she wants Oxygen-Infused Water — Seriously. I bought it as a curiosity, even as I was highly skeptical of it and figured it was a “snake-oil” sort of medicine. Her body reacted extremely favorably towards it, though. I tested it multiple times to be sure, and then just shrugged and accepted it. (It basically tastes like salt water. She loves it.)

On one hand, of course, it is a blessing to be able to do this testing. Within 24 hours, her behavior was restored to normal.

On the other hand, it only serves to indicate just how aggravating this bone marrow failure / blood disorder can be. Green “Superfoods” are packed with healing nutrients. But her body doesn’t want them. In fact, it reacted violently against them. As well as to the methyl form of Vitamin b12, the “best” form there is. What gives?

What am I supposed to do? Test EVERYTHING we eat? EVERY vegetable? Fruit? Meat? Cheese? Tea?

These things can change every few weeks. I cannot imagine CONTINUALLY retesting everything.

But I suppose I must?

Recently, another parent posted how her child has happily gone into remission. She credits “healthy” lifestyle: Fish oils, goji berries (those are chinese herbs friends — gou qi zi), using essential oils instead of chemicals, and the like. I’m very glad her son is in remission.

But I think this story pretty well indicates that if a parent achieves remission for their child while stumbling through “heathy” lifestyle, it’s really luck. Luck and timing. When they try to mimic the success, most parents don’t get such results. It is not because the parent who got lucky “knew” more. It’s just that they just tried the right something (or a combination of somethings) at the right time and it worked.

I want to know why its working, or not working.

I am seeking common threads from these stories of both success and failure, and trying to come up with an understanding of what should be used when.

But in the meantime, it has become BLAZINGLY clear to me that these things are highly individual, both in terms of place (the child) and time (in the child’s healing journey). There have been times when Adahlia wanted the things her body no longer wants. Treatment is not static. It’s kind of a weaving process — certain base threads must remain the same to provide stability, but the pattern may shift dramatically, as one moves through the design.

Overall, the trajectory of the herbs and supplements Adahlia wants is encouraging. She has moved from “seriously medical” and strong herbs to more “nutritional” and mild herbs. We just had her annual hearing and vision test, and her chelation medicine has still not harmed her. We’ve been able to preserve her sensory function and health on many levels.

I do think I have an overarching big picture of what’s going on. But the details are still being sorted out. My hope is that when this story is done, I’ll have something truly valuable to offer people struggling with this illness — actual understanding of what’s going on and a roadmap to restore balance to the system.

While getting something out of a drawer this past week, a small slip of paper fluttered to the floor. It was a fortune from a fortune cookie — who knows from how long ago? It said:

Faith is knowing there is an ocean when you can only see the stream.

My darkest moments with this illness have been when I lost faith. Not necessarily faith in God, but faith that this was happening for a reason. A purpose.

I have explored this sort of work with myself in the past, as my life has not been, well, “happy” since at least young adulthood. I did not, for example, “enjoy” West Point and my military service. It wasn’t until I started working through this, and living in Portland Oregon, that I finally achieved true happiness, feeling peaceful and good about my life, who I was, and my future. I thought I had come through the worst. I began working with other people on this, who were also struggling with purpose and light in the darkness, and I truly thought I had learned the lesson. But then, Adahlia was struck with DBA, I nearly lost my kidneys post-partum, and I realized that there were still deeper levels to it. My faith was struck.

Having this depth of challenge has forced me to go even further and deeper into what I thought I had already understood. It pushes me to know it fully, so that I can become truly centered in it, so that nothing can sway me.

I am grateful. I have learned much on the soul level, the medical level, and the relationship level.

I am not sure what the ultimate lesson will be, or if I will be able to offer anything to anyone else of any great importance.

But, because of her need, I have learned how to balance out my five-year-old’s moods so that she is happy, friendly, and creative again. Sure, I would have preferred her to simply be happy and healthy without this incredibly taxing song-and-dance of medical stress, intervention, and supplements, but the bottom line is that I’ve learned a song-and-dance that is working.

Is there value in learning? Is there value in the journey?

I think so.

While I’d love to be in the destination, I think that the old adage is true, and the journey has value.

Yes, we are certainly in the stream. But I do know that there is an ocean out there, a whole water cycle.

And I’m rediscovering the power of that, on a deeper level. To know that the water cycle exists, and that we are small, but vital players in it. To not despair when my own stream runs dry, but to dive into what I do know of the water cycle, of the many other expressions and paths of water, to creatively seek answers and alternative courses of action.

Lov,e.

PS: Here’s a fun picture of me and Adahlia at her transfusion right before Halloween. We dressed as wolves and went to the hospital for her transfusion on Oct 30th, howling through the halls.

The tip of the spear

There’s a saying in certain elite military units, and for some, it is their whole motto:  The tip of the spear.   

It means that they are leading the charge, and it is a point of pride that that they are the First.   They break into uncharted territory.  They cross the boundaries.   They break into the unknown. 

Everyone else follows them.  And for the following units, as with almost all breakthroughs, the path sometimes seems self-evident afterwards.   

Of course, they succeeded because of x, y, and z.    

Once the logic has been established, once the path has been cleared, it is easy for the rest of the spear to follow.  

But when the path is not premade, the way is anything but self-evident.   It might be logical according to theory, history, common sense, or other traditions or philosophy, but since it has never been done before, there is a huge amount of inertia blocking even the conception of it.  No one thinks to do it.  The truth is, we become easily entrenched into our cultural, societal, familial, or other ways of doing things.   

It is not easy to be the tip of the spear.  It requires courage, creativity, and fierce determination.   It is dangerous.  It is vulnerable.  It is always a risk to be first.

There are so many sayings:  

Necessity is the Mother of Invention.

The Simple Genius.

Like with those 90s digital 3-D images:  It is obvious now, but I could not see it until I saw it, and now I can’t stop seeing it.  

Sometimes, gaining a new understanding can be very chicken-and-eggy.

Do I sound a bit off?  Truth is, I am a bit of a wreck right now.  But probably not for the reasons you suspect.

Two weeks ago, I would have told you, I wanted to shout from the rooftops, that I had FINALLY figured it out.    I had found a cure for my child, my obsession of the last 5 years.  There were signs that her body was shifting.  I saw it and noted it, and I felt it in my bones.

Then I learned that while she was not “burning through” her donated blood, and could go another week before transfusion (making it 5 weeks instead of 4), her blood lab results were not showing healthy baby red blood cells.  

So she was not cured.  It was a tough blow, but I realized, somehow, that I still felt the same sense of confidence and love that I had felt when I was convinced she was cured.  

You see, I had had a strange realization one night, when I was pre-celebrating in my mind how this was finally IT.  (I couldn’t help it; I just felt it to be true and was so very, very excited.)  Out of nowhere, I began to feel sad, thinking of how much joy was lost when she was in infant.  I don’t think I could have done it differently; my feelings were entirely natural.   And, to be fair, I actually did a pretty good job of remaining as much “in the present moment” as I could.  But it’s hard, truly hard, when you see your child slowly decline before your eyes every two weeks, and also, I was very physically ill myself.  That night, I realized that I sincerely wished I could go back in time, and lift my sorrow.  To tell myself: “just celebrate, and love her, and be happy, because it will all be okay.  She will be fine.  You will navigate these waters well; No permanent damage will be done.”    

Something clicked that night, something shifted.   I stopped worrying.  I felt… happy.  Peaceful.  Grateful.  

I felt, for the first time since my 3rd trimester, when I went into kidney failure and her little baby pulse dropped out from within mine (we can feel the baby in the mother’s pulse in Chinese medicine), that she was safe.

Somehow, even though the lab results came back negative, those feelings remained unchanged within me.    At her friends’ birthday parties that weekend, I was able to talk abut her condition without my eyes tearing up, even as my friends’ eyes welled with compassion.  I rejoiced with my pale little pixie; and I played with her without the familiar weight and tug of grief.  Something had been lifted.  

Then, some more test results were released a few days later.  These results said she was making red blood cells, but they were not ideal; they were ovalocytes and microcytes.  They were not healthy baby red cells.  

It was not great news, but I took it as good news:  To me, it meant that her body was trying.

The next week, on the day of her most recent transfusion, October 30th, the lab report said that she was now making healthy baby red blood cells, as well as a few ovalocytes.  There were not enough healthy baby RBCs (reticulocytes) for the doctors and I to feel comfortable skipping the transfusion.  But they were there.

And I can say this:

This is the first time I can positively say that her blood production is DEFNITELY related to what I am doing for her.

In the past, it seemed that there was no discernible cause or effect.  Or that there might be correlation, but I was not sure.

This is no accident.

I see now.  I understand the therapeutic order that has brought us to this place.  I see how it fits together, and I see how it makes sense.  

I see how obvious this blood disorder is, and how equally obvious it is that it can be cured.

I see how different medical perspectives are arriving at the same conslucions, or even using different approaches, but talking and walking in circles about the same darn thing.  

It is RIGHT THERE.  

Now, what I’m doing is not steroids.   Natural medicine can take awhile for the body to register.  But, we’ve made it past the biggest hurdle.  We’ve passed the inertia of NO baby RBCs.  My hope is that now she will begin make a TON of them.  That they will grow exponentially.  And they might.  Now that her body is coming “online” it might decide to “gear up” quickly.  Children do that.  They get ill fast, and they recover fast.  My hope is that our Thanksgiving and Christmas present will be her being able to skip the next blood transfusion.  A high hemoglobin with a high reticulocyte count.

But I am also prepared for a much slower road.  Her counts may grow slowly, over months.  There may be some dips before we finally find ourselves in “The Happy Land of Freedom from Life-saving Medical Intervention.”  

The best part?  By getting her body to do this on its own, to make its choice to repair its DNA and correct its cellular processes, we wont be applying a band-aid.  It will be a true cure.  She will finally have a truly healthy, functioning, independent body.  

Here’s the thing:

From any medical tradition’s perspective, it is a miracle that Adahlia is still alive.   By all rights, by any medical explanation for the body and vitality and life, East or West, her life is in dire jeopardy and she should soon be dead.  Humans do not live without blood.  Not making one’s own blood cells is about as severe as it can get.   Her body is about as sick, and about as close to “shutting down” or termination as one can get.

(Even the “undead” need blood to survive).

The only reason she is not dead, is that we continually bring her back from the brink.

The only problem with bringing her back is that the only ways we can do this are toxic and incredibly destructive to other parts of the body.  Blood transfusion, steroids, and even bone marrow transplants are not sustainable solutions.

What we need is to turn the body back “on.”  We need to get our kids’ bodies to “choose life” on a subconscious, cellular level.

And gosh darn it, but I think I may have figured out how.   Naturally.  Without the drugs and interventions that cause growth problems, adrenal failure, precocious puberty, diabetes, osteoporosis, sterility, and a host of other problems.

And if that wasn’t BIG enough:

If I can do this for her…. for someone whose body is not even functioning on the fundamental level of generating its own blood… someone this close to death… and whose body was formed this way, such that we are fighting against the programming and patterning established by embryonic cells in the womb….

Then we can do it for anyone.  

Everyone.  

There should be NOTHING we cannot reverse, no life we cannot restore.  

If I can cure Adahlia, it is no “fluke,” or happenchance.   It means we need to WAKE UP to the reality that we are limiting ourselves  by limiting our understanding of the human body and its capabilities, its ability to heal and self-regulate. 

I owe my daughter’s life to the modern medical interventions of sterile procedures and safe blood transfusion.  

But I owe her HEALTH — and indeed, she is amazingly healthy and robust, and has dodged every “bullet” of side effects and complications that come with this blood disorder —  and I owe her future quality of life, and the fact that she still has the unlimited potential of every “normal, healthy” child to experience all the good things that a mother hopes for her healthy child to experience, and I will owe her CURE to natural, integrative, East Asian, and energetic therapies.

And this is why I am a nervous wreck.

I feel like Cassandra of Greek mythology, who can predict the future but is doomed to never have anyone believe her.

What is my prediction?

The future of medicine — the true Golden Age of medicine and mankind —  will be one of Integrative Medicine.

Western pharmacological and surgical medicines will continue to save lives, especially in emergency situations.  But lives will be RESTORED and side effects and complications that ruin Quality of Life will be avoided because we will be using herbal medicines, energetic medicines, acupuncture, and homeopathy, and diet, and home therapies, and supplements, too.  

So many children will be saved.  So many parents will be relieved of the burdens of guilt and sorrow over having to choose between “the lesser of three evils” for their beloved baby.  So many, many, people will be so much, much more happier, and productive, and creative, and powerful contributors to the world.  

If I could blast us all into 100 years from now, I would do it, I truly would.

But alas, we are here, and it is up to us to do the work of making that Golden Age a reality.

Please help me.   Please, for yourself and your loved, ones, know that we need to change up our thinking.  We are going about medicine all wrong.  We need to work together.  

No one has ever combined Japanese mosibustion with pharmaceutical iron chelation therapy to remove iron overload from a child’s heart.  I was the first.  And I was wildly successful.  

No one has done what I am doing to restore her ability to make her own red blood cells, and I do believe I will soon be sharing news that she is in full remission, and I shalln’t be afraid to say that she is cured.

I live on the tip of the spear.  I invite you to join me.  I BEG you to join me.

We can do this.  

Yes, God creates and provides miraculous healings every day.  

But I believe that God did not miraculously heal my daughter on purpose.  I believe he withheld a miracle because he wanted to provide a miracle of a different sort.   With my western, scientific, eastern, energetic, spiritual, and West Point background, I was in a unique position to do this work, to lead a charge into the medical unknown. It is almost too coincidental that I became the mother of a child with a blood disorder so rare. I had the perfect tool-kit.  

I am a trained scientific researcher and I understand Wesetern biology, chemistry, physiology, etc.   I have also been educated and am experienced in natural, East Asian, and energy medicines.  If I had not learned what I learned, and had not had the life experiences I have had, I would not have been able to even know where to begin to cure my daughter.  I would have not known any better than what her doctors could tell me, which, to be honest, wasn’t very encouraging.  Ever.  But because of who I am, I knew a cure had to be possible.   I knew there were missing pieces.  I knew it could be done.   

God didn’t provide a traditional miracle for my family because, as they say in the military, that would have been “too easy.”   We, as a people, wouldn’t have learned anything new, and there is a massive take-away from this story:   

(And I am a nervous wreck because if Adahlia is indeed cured, then my work is just beginning.  I am exhausted, and I often feel overcome. And yet, I must proclaim it):

The miraculous cures we all seek and pray for are all around us.   Look at our plants.  Learn about them.  See how these different East vs West medical philosophies ultimately all come around to the same truths.   Become curious about how they fit together, how they confirm each other, how one picks up where the other left off, like a wonderful, old couple that finishes each others’ sentences.  See how our minds, our inventions and tools, are powerful, and complement each other, too.   

It’s all here.  It’s all RIGHT here. 

All we have to do is bring it together.   It’s a big, beautiful puzzle.  All it wants is for us to apply ourselves to solving it, to come together in a spirit of mutual curiosity, creativity, respect, and courage.   

The miracle we seek, it’s been given to us.  

It is within and all around us.  

It’s RIGHT here.

***

Yeah, it’s tough out here, on the tip of the spear.  I could really use a vacation.  But it is a great honor and I wouldn’t have it any other way.   Join me.  Follow me.  We can do this.  It is such a privilege to serve.

Lucky ones

If I made an objective list of things that have occurred in my life since adulthood, I don’t think that most people would say that, as an adult, I have been lucky.

As a child, yes, people would say I was rather fortunate.

But as an adult?

Have I had really different experiences?  Yes.

Have some of them been really cool?  Definitely.

But, by and large, they have been really tough.  Tough in the way few people would volunteer for, and even fewer would endure.  Earned in every imaginable way — and, if I were fair, I’m not sure I can say that the payoff was equal to the amount of pain.

(Here I am mostly talking about my West Point and military days.  It is not, actually, a “smart” idea to go to West Point.  It requires extraordinary dedication and a willingness to suffer, suffer, suffer for an ideal or belief for the future that you refuse to let go of, for years, while your friends mostly just play at adulting in their collegiate nests.  If your goal is to give yourself a comfortable, “happy” life, avoid West Point.)

Once, during my senior year at USMA, I was in New York in my cadet uniform for an official function.  A well-dressed New York socialite approached me, and brazenly attacked me for having been given a privileged, “free” education, while so many poor people can’t afford college.

I raised an eyebrow and replied, “Ma’am, people ‘pay’ for things in many ways.  I assure you: there has been nothing ‘free’ about it, nor will there be, over the next five years.”

Her mouth fluttered open a few times and she walked away.

When I think about the incident, I find it even more absurd since it happened post-911.  We were the first graduating class that would be sent to units going directly into war in many, many years.   What a stupid woman.

Even so, I can’t complain.  I am proud to have actually experienced what most people just sit around fireplaces and speculate on, getting drunk and opinionated about, without having any real, first-hand, experiential, or “root” to their knowledge.

I don’t have much patience for such types.

Truth is, even though those nine years took an extreme toll on my body and mind, I knew that I actually was privileged.  Because I knew what I was capable of, and I had found my breaking point, and balanced on it, again and again, only to discover that I could continue on, and do more and more, and that I wasn’t, actually, broken.

Very few people have any idea of their true strength, or even what it means to be strong.

Flash forward five years, and I have a child born with a blood disorder so rare that it is the equivalent of winning a super lottery.

Except the prize is a little different.  It is more like an un-lottery, a vacuum that sucks everything away, and makes everything much, much harder.  It’s a cruel vacuum, one that sucks a (usually) completely unsuspecting, unknowing couple’s joy and plans into a void that they will have to fight, tooth and nail, to retrieve scraps out of.

But again, I can’t complain.  Not really.

In Adahlia’s early years, I had a mom-friend who, while pregnant with her second baby, looked at me while we stood in her kitchen, and it suddenly dawned on her.  How much I had given my child to try to help her, not just physically but also emotionally and mentally, to wash away all the trauma of her hospitalizations and needle-sticks.

“Oh my gosh,” she said, “I just realized that you have never had the experience of putting her in a crib, coming downstairs and pouring yourself a glass of wine, and drinking it while listening to her cry it out.”

I’m not sure if it was my expression or her own conscience that corrected her.

“Not that that’s an experience, of course,” she quickly added.

“Oh, it’s an experience,” I affirmed.  But no, not one that I would value, I mentally added.

You see, people value different things.  People’s lives mean different things to them.

No, my life doesn’t mean suffering to me.  I certainly don’t consciously want to suffer.  I want the good things that most people want.

And no, I don’t think life is about suffering.

I do think that life meets you where you’re at.

And that your life experiences will challenge you to define your values.

No, there isn’t a sane woman alive who would trade her life and her child’s life for mine over the last five, six years (if you count the pregnancy, which was also harder than most.)

But I have absolutely zero regrets about how I’ve handled it.

I have priorities; I have values.  I have these values because I have come face to face with them and made a conscience decision about what is important in my life.

And no, my priorities don’t include drinking a glass of wine while my child cries herself to sleep alone.

I am better than that.  I have the tools and the ability to provide comfort, love, and a sense of security to a defenseless child when she is scared and doesn’t want to be alone at night.

I know who I am.  I know what I stand for.

It isn’t flippant or cruel or selfish or stupid or vapid.

It prioritizes the people I love over both temporary pleasures and even over more respectable dedications, like a career or bank accounts.

It pivots around a love so deep and profound that it surrenders sacrifice after sacrifice after sacrifice.

I know what goodness I am truly capable of.

And yes, that makes me one of the lucky ones.

 

Strangeness and Peace 

Driving through the national park while the little one sleeps in the backseat.  We are not only camping tonight; we are camping with the cat for the second time this summer.

The cat is not pleased.

Snow drapes the mountainsides already, like making the mount and look like big women wearing heavy shawls.

Are they trying to tell us something about the coming winter?

I always feel happy driving into the mountains.  Of course, we can’t outrun what actually bothers me, what’s on my mind 24-7 it seems, but while driving, it seems like maybe I could.

There’s nowhere to go that can give me what I’m seeking.

Having a child with DBA is a strange state of stuckness – there are people who get out of the maze, but usually they can’t quite explain how, and so you’re left wandering it, rechecking paths you’ve checked 10 times before, looking for new ones, wondering if the risks of that path are worse the possibility you’d find an opening in the hedge, a way to escape, and to finally move forward.

It can be especially daunting when you know that many time, the new path  it just leads you into a new circular stuck lrpattern.

And yet people do get out.  Knowing that, how could I stop seeking an opening for us?

Adahlia just woke up.  

She doesn’t realize she’s in a maze.  It is the only thing she’s ever known.  

So let’s play in it, shall we?  We’ll find all the wonderful things we can… And I’ll keep my eye out for secret passages.

(I’ve heard of one I think I’m ready to try…)

The kitchen and the freeway

There were other things I was going to say on my next post — I have a list of about 50 things.  Stories about how cute Adahlia is, little excerpts from our lives together.

Last week it was 4 weeks since her last transfusion, and her Hb was somehow 11.8.  It was all I could do not to write about it.  I felt we had been granted some sort of miracle.  But a week later, we retested and it was only 8.6.  It’s okay.  Of course, I’m sad about it.  But I am growing to accept it more, and handling it better.

Humans are actually really good at adjusting to things… for better or worse.

The reason I am posting now is because a 14 year old child with DBA died today.

There is a sense among the general population that this blood disorder “isn’t so bad.”  By general population, I mean the billions of people who don’t have it and don’t live in the same household of someone with it.  To give you a sense of perspective of just how rare of a group I belong to:  there are just 600+ people in the private Facebook DBA Support Group open to only DBA patients and the immediate family of DBA patients.  And its a world-wide support group of people of all nationalities.  Some don’t speak English very well, but we try our best to communicate support and advice.

When Adahlia was an infant, I actually had a well-intentioned but completely ignorant family member tell me:

“At least she doesn’t have Down’s Syndrome.  That would have really changed your life.”

People think that because she looks healthy (and that’s because I’ve worked so hard to keep her that way and invested every penny I’ve had and borrowed against both what I didn’t and still don’t have) that she’s fine.  But she’s not.

Having a child with DBA is like living next to a freeway and being told that once a day for 30 minutes, you have to leave your child unsupervised next to it while you sit in the kitchen with the curtains drawn.  She’ll probably be okay to play in the dirt while cars and semi-trucks race by at 70 miles per hour, right?  Of course, you also could get a knock on the door at any moment to tell you she’s not.  But don’t worry! Just go into the kitchen and make yourself a pot of tea until her time by the freeway is over.  Same time, same place tomorrow, right?

To cope, some of us DBA parents tell our kids things like:

“Some kids have to wear glasses.  Some kids can’t walk.  You have to get blood transfusions.  Everyone is different.”

But of course, there is actually a big difference between wearing glasses or receiving blood transfusions every 3 weeks because your body isn’t making its own blood and is constantly on the verge of shutting down.  While I can’t imagine how difficult it must be for a child unable to walk and run and jump, there is even a big difference between being unable to walk and being unable to… well… LIVE without regular intensive medical intervention that your body builds antibodies to and is actually toxic to it (ie, iron overload).

As a DBA parent, we love hearing news of children and adults who have gone into remission.  But it seems like we more often hear news of the opposite.

And let me tell you, hearing that another child has died, at 14, is a pretty big burst to the “it’s not that big of a deal” bubble.

Adahlia is 5.  So, we’d have 9 more yearstogether?   Some children die much earlier.  But we could get lucky, and she might die in her 20s?  But of course I’m being dramatic.  Some live much longer.  A DBA woman in her 40s just recently died.

There are some people with DBA who are alive beyond middle age.  There’s not many of them, and I’m not sure how old he was exactly, but the one I’m thinking of was a grandpa.  Actually now I’m thinking of two of them.  One of these guys told me a year or two ago that I have a wonderful mind and sense of humor because of joke I made in the DBA support group to lift some spirits.  Both of those guys are now dead, of course, but still.

DBA is a big deal.  It’s an F-N big deal people.

My prayers and love to the DBA families that have lost people this year.  They always handle it with such grace and thanksgiving for their loved one’s life.  Saying things such as, “I’m grateful that she had her childhood, even though it was difficult.”

This is a picture of Adahlia after her last transfusion, the one in which she got blood all over her princess dress.

And here is a picture of the path we all three   (Adahlia, her dad, and I) finished just a few hours ago for our backyard.  Adahila and I have been working on it all summer.

I know its hard to “get” something that is completely outside your realm of daily reality.  I’m not asking for pity nor anything else.  All I am asking for is for folks to just let me be who I need to be.

If I seem odd to you, untalkative, less jovial, less interested, or otherwise disappointing to you, remember my beautiful child plays unattended by a freeway everyday, and I’d love to change the situation and I’ve tried, but I can’t… so we’re just waiting, praying and holding our breath, to find out what will happen next.

Does yours?

Blood and Stuff of Dreams

“Mom.” she says.  A statement of fact.  We are at the Children’s Hospital and she is receiving a blood transfusion.   

Or more precisely, as understood amongst certain medical circles, she is receiving a red cell infusion.

I am sitting next to her on her bed.  I turn my head, and there is a stream of blood flowing down the surface of her left arm, not into her vein like it is supposed to be doing.  Her right fingertips are bloody.  Her rainbow “princess dress,” the dress she wore for her 5th birthday party just a few weeks ago, is smeared with blood.

I grab paper towels from the in-room dispenser.  “Hold this to your arm,” I instruct.  She hesitates, not wanting to touch her arm.  

“Mom.”  She says again.  “Its bleeding.”  

She’s only 5, after all.  

“Hold this to your ARM,” I command.  “I need to get the nurses.”  I grab and press her unwilling right hand down on the paper towels, pressing the mass of them to the leaking IV.

I slide open the glass door to our transfusion room.

“Blood is leaking out of our IV,” I say.   Our nurse jumps up from the nurses station and into our room.  Shuts off the transfusion pump.  And luckily, after examining it, we realize the problem is not the IV.  It is securely entering the skin, and there is no blood around the insertion site.  The blood is flowing out from a part of the tubing that was not twisted tightly enough shut, just near where the sticker holds the IV in place.

We don’t need to re-stick her.  The remaining hour of her infusion can go forward.  

Adahlia’s lips are a deeper pink than I’ve seen in years.  The blood vessels of her eyes are even red.

After wiping the trail of blood from Adahlia’s arm, the nurse leaves. 

I gather more wet paper towels and carefully clean the blood from the palm of her hand, from her fingernails.  

I am wiping someone else’s blood from my child’s hands.   How odd.

Whose blood is already dried underneath her fingernails?  A man’s?  A woman’s?  

Whose blood is now flowing through her body?  Whose red cells will spend the remainder of their days being pumped by her heart?  Picking up oxygen in her lungs, and carrying to her tissues?  Eventually to be cleared from her blood stream and dismantled by her spleen?

Everything about this is surreal.

I blot the blood from the rainbow panels and layers of her dress.  

I remember our friend’s “Dead Princess” Halloween party last year.  Little girls in party dresses smeared with blood.

Except this is real.  

Someone else’s blood.  A stranger’s blood smeared and speckled across the front of my child’s dress.  Turning wet paper towels pink.  Sticking to my hands in the unique way blood does.

Does that make it better or worse?  Am I more, or less, nauseated?

Sometimes, I don’t think I feel things quite properly anymore.   But perhaps, I never did.  I’ve always been good at the 3rd party observer way of handling unplesantries.  It’s quite useful, actually.

There are so many things I could say about what’s been going on the past few months, but I find it difficult to voice any of them.

The good, the bad… the hope, the progress, the setbacks.  

The next steps.  A big step, looming close.  Will we take it?  

I am not keen to speak any of it.  Even through my fingers.   

Instead, I will tell you another story.  

Another true story.

A few months ago, I decided to do something of a soul retrieval.  Please understand I am not a trained shaman of any sort.  I would never profess to be and have never performed — nor even received — what folks call a “soul retrieval.”   I just know that they exist, that certain healers offer them.  

But I decided, one night, lying next to her in the dark, that I would try to call in any parts of her that perhaps got lost while in the womb, or in a spiritual realm, or in another life… because well, I know what I don’t know, and I know that that’s a lot… and because, just in case, such were the reasons why she is not making her own blood, since, by all accounts and even modern scientific understandings, she should be able to.  She just…. isn’t.

In my mind, without speaking a word aloud, I began doing something.  In this something, I called for all of her to return to her, and to collect all of her across all space and time.

I went deeper and further and broader, calling for all of her to return.  

Meanwhile, laying next to me, she lay breathing softly, asleep.

Suddenly, she spoke aloud:

“Arms, Legs.  Hands, Feet.”  

Damn near scared the death out of me.  

In the past, she had certainly spoken aloud a few times in her sleep, but never intelligibly.  

These words were not only clear, but also surprisingly reflective of what I was doing.  She was assembling herself, just as I was calling for all of her to return unto herself.

I decided it was encouraging.   

So I continued to do what I was doing (which I fully admit I have not been very specific about).

Then, in her sleep, she turned her head towards me.  Moved nearer, as if about to confide in me.  All while asleep.  

“Stop,” she whispered.  

I stopped, waiting for her to say more.

“Don’t do it,” she continued, “He’ll find me.” 

***

Which of course, begs the questions:  Who is he?  And, is DBA some sort of spiritual witness protection program?  

Make of it what you will.

And for my part, I will try to make my next update a little less strange.

No promises, though.  It’s not really something I can control.  I am just telling the story of what happened.  And there is nothing about this situation that is not strange.

Be well.

Mountain Climbers

There’s been a lot that’s happened and there’s a lot I could say.  And I will.  I promise.

But first, I needed to post this.  Because there’s a California hematologist who’s been giving white-coat curses to mothers of children newly diagnosed with DBA and he needs to be taken down a peg.  Because what he says is cruel and crushing and just plain wrong on so many levels.

My initial response was more colorful.

But this still gets the message across.

And I hope it finds its way across his desk.

Tenacity and Timing

One of the things that is so unnerving about DBA is that is unpredictable.

5-weeks between transfusions.  Then only 3.  Children that don’t respond to steriods suddenly responding.  And vice versa.  Iron appearing “suddenly” in organs that shouldn’t be overwhelmed yet, and then “suddenly” disappearing. Children with DBA across climate zones doing better around Christmastime; doing worse in the spring/summer, and then suddenly, it all switching up.

Or is it unpredictable?  Is it, perhaps, that we have yet to find the pattern?

Chinese medicine is all about patterns.  Connecting the dots between seemingly “random” symptoms is kind of the hallmark of what I do.  It is what I do best, and it is what I really enjoy doing.

But DBA is a puzzle fit to confound the most tenacious puzzle-master.

To let you in on my world a bit, let me give you my latest puzzle.  Like all DBA puzzles, it is a wait-and-see game.  It WILL resolve in time.  Positive or negative, we eventually find out if the child needs transfused, if the medication worked, and if things are currently “really bad,”  “really good,”  or somewhere in the middle.

It is the waiting that is the hardest.  Like much of life, it is the not knowing that is most difficult.  And this is why, when people come to me with their health puzzles, they feel so satisfied working with me.  I show them why it all makes sense.  I don’t take away any mystery or miracles, but I do help them complete their connect-the-dots.  It actually makes the miracle and mystery all the grander.

I only wish I could do it for my own daughter.

And perhaps you have some insight.  So here it is:

Adahlia is due for her t2* MRI.  Actually, she is overdue.  She was due to be scheduled for this examination back in September of 2016.  As of mid-October, she was overdue.  This is the radiological study that (imperfectly) measures the amount of iron that has built up in her heart and liver from so many blood transfusions.  (We do not have a natural way to rid ourselves of iron.  Because it is so valuable, our body stores whatever iron it cannot use immediately.  In someone who is chronically transfused, who receives a massive influx of iron monthly, this creates a problem.  Iron stored in the heart can lead to heart failure (ie, death) and so goes the story for the liver and other organs.  And so Adahlia takes a chelation medicine, which pulls it out of her organs for her.)

Typically, iron is stored in (more-or-less of) the following sequence:  Liver. Pancreas.  Heart.  Pituitary.  But this is not always true.  Some DBA folks store it in other orders.  Adahlia, for example, seems to preferentially load iron into her heart.

Because of hospital costs and limitations of equipment and software (not all hospitals can “read” all organs), most DBA patients do not receive full studies of all organs.  The hospital takes a reading of the liver.  Or if lucky, the liver and heart.  Extrapolations are made about guess-timated levels of iron overload in the rest of the body.

This is obviously an imperfect system, since the children do not load into all organs the same across the board.  A pancreas could be bursting with iron and no one ever know until it shuts down and the child is suddenly diabetic, or worse.

I’ve been trying to schedule A’s t2* MRIs since August, and to no avail.

There are scheduling difficulties.

Adahlia needs her t2* exam conducted prior to blood transfusion, reportedly so that it is the clearest reading possible.  This means we cannot transfuse her a week prior (and certainly not the day or morning prior) to the exam.

We need her t2* and transfusion to be conducted on the same day. First, so as to minimize emotional trauma, and second to save her veins from unnecessary needle sticks (they are beginning to form scar tissue and may become unusable).  When conducted on the same day, Adahlia receives only one IV stick for both procedures– first the IV is used for the sedation necessary for the MRI, and second it is used for the donated blood.

These scheduling requirements mean that we need the earliest possible MRI appointment in the day.  First, because the MRI requires a couple hours and the transfusion requires a few hours and the hospital won’t start a blood transfusion after 2 pm.  And second, because the MRI requires sedation, and to be safe, the child cannot eat or drink ANYTHING (including water) for something like 6-8 hours prior to sedation.  Denying your child food and water is tough.  So most parents, like myself, try to schedule the “MRI Under Sedation” first thing in the morning, so as to minimize the child’s hunger and thirst.  This means we have a lot of competition for prized appointments.

The problem is that this combination of requirements allows us a window of approximately one week per month to schedule the necessary procedures. In January, we were all set-to-go, but Adahlia came down with a wicked chest and upper respiratory cold.  It is unsafe to put a child under sedation when she has a cough/mucus, and so, confounded by yet another requirement, the t2* MRI was cancelled and reschedule for — you guessed it, March.

But last month she burned through her blood at record pace.  So instead of going an easy four weeks between transfusion (transfused at the upper-end of Hb range), she barely made it 3 weeks (and had a shockingly-low Hb count).

To make it to her March MRI + transfusion, she needed her blood to last 4.5 weeks.

Not impossible in the past.  But…

She hasn’t been looking so good.

And there’s another requirement to the MRI Under Sedation:

It is reportedly unsafe to do if the Hb is under 6.0 due to the risk of heart failure / not waking up.  (Some hospitals actually say they won’t do it under 8.0.)

So last week, I called her hematology team and told them she wasn’t looking so good.  I said I doubted she’d make it to March 14th, and asked if they could check to see if anyone had cancelled their morning MRI this week, so we could bump it all up by week.

They were not pleased.  As if I was somehow foiling their plans, instead of making sure the plan could go through. They told me they’d call me back.

And quite honestly, I don’t think anyone even checked.  I heard nothing back from them.

(I can’t call Radiology myself.  Because Adahlia is a Cancer/Blood Disorders patient, all requests for appointments must be made by her Hematology Scheduler.  Trust me, I’ve tried to go around this system in the past — it would just be so much easier if I could arrange it myself, as I care more about getting her appointments set up correctly than any scheduler ever could.  But it didn’t work out well and it didn’t make me any friends.)

I’m not entirely sure why Adahlia’s hematology team is dropping the ball on this so hard.

It may be because her last t2* MRI was entirely cleared of cardiac iron and liver iron was down to a moderate range (back in October 2015).  Six months prior to that, her hematologist was conferencing across the country about her, as her cardiac iron was extremely high and they were worried about heart failure, as historically, the heart is the toughest organ to remove iron from.  They even managed to schedule a repeat ‘critical’ t2* MRI exactly six months later for her. But, at that second MRI, after intense chelation and some of my complementary Japanese moxabustion and Shonishin therapies, the iron was completely gone from her heart.  Her heart was functioning at a very high level.  Like the problem never existed.

Their reluctance to push for Adahlia may also be because a few months ago, I had a relatively illuminating argument with Adahlia’s lead hematolgist about steriod treatment.

A paragraph or so into his steroid pitch, A’s doc made the mistake of saying that ultimately, he just wanted A to have the “opportunity” to try steroids.  

As if insinuating that I was not doing the proper job of a mama.  That I was refusing her “opportunities” in life.  

Now, I had been expecting this conversation.  It is A’s doc’s job, after all, to make sure his patients follow current protocols, or at least that he is strongly recommending them.  I was sure his bosses, whoever they are, who track these rare DBA cases, were all over him about why we hadn’t put this particular child on steroids.  And I was sure that somewhere in her file, like the Seinfield skit, there was also mention of how troublesome I am as her mother.

Knowing he has a job to do and medical license to protect, I was willing to tolerate what I knew would be his every-3-months steroid pitch.  And I’m perfectly fine with having a cost-and-benefit, logical, and analytical discussion about steroids and whether or not we are ready to try them (I’ve explained my reasons to him.  And we arent’t “against” steroids.  But we haven’t been ready to try them.)  

To use this particular angle — to put such a coated and manipulative and salesmany spin on the disagreement — well, it was not acceptable to me.   I lost it.

“Opportunity?!?”  I retorted.  “The only reason you are looking at the little girl that you are looking at is because I REFUSED the so-called “opportunity” of steriods that was so strongly pushed at us when she was just 9 months old that her doctors stopped speaking to me.  Had I taken the “opportunity” you all medically recommended, you would NOT be seeing the developmentally normal little girl you now see before you.”

I paused, glaring, and he obliged me and looked at her.  And I watched his face change, as he and I both knew what we would have been seeing, what her chart would be reading, had she gone on steroids.  And what we’d be looking at it in just two more years — a 6 year old little girl going through puberty.  A 6-year-old the size of a 3-year-old.  

“And now, NOW you say that you’d never recommend steroids to a child that young, that the ‘guidance’ has changed, but it would have been too late for her, wouldn’t it have been?  It is MY JOB to sift through your medical recommendations — recommendations that I understand you HAVE to follow or you will lose your license — for things that actually make sense.  And it is only because of MY OWN medical training that I have any ability whatsoever to do so.  My intention is provide her the BEST POSSIBLE opportunities in life, and the way to do that, in my opinion, is to keep her as healthy as possible.  To NOT forever alter her future. My job is to minimize any LASTING and IRREVERSIBLE effects.  And so far, we have done that.”

He did not argue with me.  He knew I was right.  While he may not volunteer the information and connections between steroid use and diabetes and osteoporsis and precocious puberty and severe growth stunting and 8 year olds with joint degeneration when he “sells” steroids (his word, not mine), he knows the effects of them.  

And so he replied, “You have to understand,” he said, “my job is to sell the steroids.”

His posture changed and his energy grew somber and reflective.

“At night,” he admitted, “I think about the girls and boys who I have physically altered with steroids.  How I’ve destroyed their bodies and changed their futures.”  And then he looked up.  “But for some of these children, there was no choice.  They would have died without the steroids.”

I was astounded.  It is not everyday nor every medical professional who can admit that he or she “destroys” the bodies of children (again, his wording, not mine).

“But that is NOT her situation,” I growled.  “She HAS another option.  And it is not perfect.  And it is dangerous.  But if we are vigilant and lucky, it will not PERMANENTLY change her body. It will not destroy her own natural hormones and endocrine system, and irreversibly alter her chance at a ‘normal’ future.  If her situation changes, and we must use steroids to save her life, or if I feel there is a chance that the steroids might ‘jump-start’ her system, so that she needs them only temporarily, then we may try that.  But I will not let you leave her on them.  Even if they work.  And it will kill me to administer them to her.”

***

Back to the present — storytime over…

Whatever the reason, I’m not super thrilled either way about how Adahlia’s medical care has been over the last 6 moths.

Last month’s conversation with her team was a little stilted.  Adahlia’s heme team expressed “surprise” that she still hadn’t had her necessary yearly iron overload t2* exam.  And they were “upset” it was so overdue.  (And of course, it was their own / the hospital’s fault for not prioritizing it.  So I found their expressions of shock unimpressive.  If its so damn important, SCHEDULE IT, people!!  I should think that she’d get some sort of priority.)

So what’s my point?

My point… my point….

My point is that I’d rather not have Adahlia’s heart stop while under sedation.

And I’m a little upset that the hospital doesn’t even seem to care to find out if the procedure will be safe for her.  (They don’t test the Hb prior to sedation.)

And so I must —- again —- be the Tiger-Bear Mama.

My plan?

Well, her t2* is scheduled for Tuesday.  The day before, on Monday, I’m thinking of taking her to get her Hb checked via finger-poke at a closer hospital branch (we go to the Main Campus near Denver for transfusion).  I’ll call the main hospital that afternoon to get the results, and if its too low, I will cancel the MRI.

Until then, Adahlia will continue blade-running her hemaglobin.  She’s low, but I think she can make it to Tuesday.  It doesn’t make much sense to check her before Monday if they aren’t able to alter the plans to see her before then, anyway.

I just refuse to let them sedate her, and have our story end with:

“We are so sorry.  We tried everything….”

I just refuse to let that happen.  I’m not going to let the stupidity of medical protocol / medical error destroy my child.  She’s MY charge.  She’s my Light Being to Raise Up.  And I take that duty and honor seriously.

So, does everyone agree — Good plan?

Alright then.  On the count of three, let’s do this.

One-two-three:  TEAM!

The Stuff of Dreams

Last night, I was able to attend the Functional Forum (Evolution of Medicine) filmed live in Boulder.

The subject was the Evolution of Psychiatry, and it was a fantastic forum.  The focus was the elusive connection between trauma (emotional wounds) and physical illness (physical ailment), particularly with autoimmunity.  The most riveting speakers were a pair of MDs from the Wholeness Center, who use Integrative Medicine techniques to heal psychiatric issues in a profoundly effective way.

And of course, this subject is fascinating to me because I am working on a book that ties together the physical and emotional/mental aspects of autoimmmunity, and provides an explanation for it.

Is trauma and “mystery” genetic illness connected?  Well, research says a resounding yes.  But since all that info is on the recorded live-stream presented by the aforementioned docs, I wont repeat it.  What I will say is something I have long known, and mourned (for my inability to shield her from it):  Adahlia’s DBA was triggered by my own stress (elevated cortisol) while she was in-utero.

Now as I said before, I’m not about blame. But I AM about personal responsibility.  You can’t forgive yourself unless after you accept that you had an impact. Goodness knows how I wept for how I couldn’t prevent what has happened to Adahlia, and all that she has gone through — despite being an educated medical professional who sought the best care while pregnant.  I did everything possible to mitigate my stresses, but they were numerous:  I was writing a Masters thesis, taking national board exams, and finishing my final (fourth) year of oriental medicine education.  I had significant family and relationship stress.  I was even in a car accident while pregnant (not my fault,  not that it matters).  And, I had suffered both Big-T and Little-t trauma of my own throughout my first 33 years of life.

But I think all that would have been mitigated – it all would have been okay and Adahlia would have been okay – if it weren’t for my right kidney going into acute kidney failure — leaving me bedridden in pain — at least four times during my final trimester.  Up until this point, Adahlia’s “pulse” within my pulse was strong and healthy.  After my kidney failed, her pulse disappeared within mine.  And, surely, it was traumatic for her to experience me being flooded with all the pain signals of a kidney in colic and dying.

But, except for to have her born prematurely, there was nothing I could do but manage my pain as best as possible.  Shoot — at the time, conventional medicine just thought I was having “back pain.”

It is upsetting, though, on one hand.  I tried so hard to give her the perfect gestation!  And yet, if it was not a car accident, it was a big fight with my mother and sister.  If it wasn’t a fight with my family, it was stress over boards.  And even when I was managing all that stress with acupuncture, chiropractic, herbs, qigong, meditation, and breathing — boom.  My kidney fails.

As a wise woman recently told me:  “Erika, you could not have prevented this.  You read this.”

Take that for what you will.

It doens’t negate, however, that my poor child started out life — before she even took her first breath!  –  fearful and nervous, feeling unsafe, flooded with cortisol and inflammatory markers that surely wrecked havoc on her own developing parasympathetic/sympathetic system.

It would mean that I would have some serious “undoing” work to do, to try to get her body to manage its cortisol better.  To purge it of opportunistic infections and pathogenic microbes that take hold in high-stress, high-cortisol environments.  To return her microbiome to normal with “good” bugs.   To help her realize she is safe.

Of course, her actual disorder does not help me in this regard.  Her monthly blood transfusions mean that she has been held down and poked with needles up to seven times in one hour.  She has been forced to drink nasty medicines multiple times a day.  These are memories deep within her.  Not helping her to feel safe.  Not helping her to know that she can relax, that she won’t be wounded.

This is why today, to this day, I am the fiercest mama tiger-bear you’ve ever met.   I am the spikiest, strongest shield that has ever surrounded a child.  And I am a true DBAdvocate.

But its still not enough.

About a week ago, Adahlia awoke whining and wailing.  Her voice tiny and pitiful, the most mournful cry.

“What happened?” I asked, pulling her close and kissing her.  “Did you have a bad dream?”

She sniffled.  “Yes,” she said.  “I dreamed I was a little baby, and I wanted to drink your mama milk so bad, and I tried, and tried, but I couldn’t get any mama milk.”

Friends, this wasn’t a dream.

It really happened.

Before we realized she was anemic and wasting away before our eyes, as a new mom who had never breastfed a child before, without an experienced mother of my own and feeling too awkward and alienated to ask my friends who had birthed and breastfed, I did not realize that Adahlia was too weak to eat.  I would wake to sheets soaked in milk from when she had latched on but was too weak to actually drink, and would let the milk spill out of her mouth and splash onto the bedclothes.  In two weeks, I nearly lost my entire supply, as she drank less and less.

Until finally, insistent that something was really and truly wrong, Adahlia was rushed to the hospital with a hemoglobin of 1.9, barely alive, on the verge of heart failure, and having dropped from the 50%ile to 30%ile.

My baby had nearly starved to death.

I look at the pictures now — and actually, that’s a lie.  We can’t look at her pictures from that time.  She’s so pale, and so thin, and so listless… it’s too upsetting.

So now its about clearing trauma.  Trauma in-utero, where it all began.  And Big-T trauma in her first weeks of life:  starvation and needles.

Yet there is hope.  We’ve done some work on this, but there is much more we can do.   And after talking with Janet last night, it may indeed be possible for some of the therapies used for adults — therapies that actually reprogram the number of cortisol receptors in the brain — to be used by a 4-year-old child.

It will be expensive.  (Sigh.  What hasn’t been.)  Not only can we not afford it, we can’t put anything more onto credit cards or go further into debt.  (The tricky thing about debt is that it needs paid back.).

But we will find a way someday, and soon, perhaps, if I work very very hard and the pieces come together.

Because as awesome as the last month’s blood reports were, Adahlia’s red blood cells plummeted this last month.  She needs a blood transfusion now, and its only been 3 weeks since her last one.  This is not typical — she usually goes at least 4 weeks between transfusions.  But its also not necessarily bad.  I think there is something we are clearing from her system, and it is taking a toll on her system to do it.  But that’s okay, I’m not giving up.

As I told her last night as I held her:

“I’m not giving up on you. I love you.  You’re safe.”