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.