Its hard to say how Adahlia is doing.

She is giving signs of already being low in blood. In fact, she lost her “pink” as early as a week after her transfusion. She does not look waxen yet, though, and as of 2 days ago she could still turn bright red when angry, which is always a sure sign that she’s at least at 8. (They transfuse below 8.)

Watching her like this makes Joe and I crazy. Every month we witness her gradual decline, and in us builds up a powerless agony to stop it, which then culminates in the horror of needles and IVs and four hours of transfusion. Following that is the day of adjusting to the blood, during which she’s out of her skull, so hyper its more nearly manic. After that, we have the joyful days of health, and they last a week or two. Then, the slow decline…

Her skin is dry. Of course, Chinese medicine would relate this to a lack of blood and nourishing yin fluids. We lather her in coconut oil rubdowns, which she loves, accepting them like a naked beauty on a beach.

She had a very rough evening yesterday, as I was getting treatment from friends and colleagues, and this morning we probably had the worst diaper change in recorded history. She screamed and fought and twisted and screamed. I would hold her close, cradled in my arms, creating the nonjudgmental, patient space for her, to get it out. When she started to relax, I began to change her again, and she’d tense and freak out again, murmuring between her sobs as if praying for deliverance. Eventually, we made it work. I fed her, she napped, she woke up smiling. We were able to get her to agree to take the Chinese medicine without tears, but she didn’t want it. We never know with her. The next diaper change could be all smiles. She might suck down the herbs later today, pausing to look up at me with a “this is gross” expression on her face, which then bursts into a smile to see the love in mine. We never know. I just work to hold the space.

Its hard, beautiful work. We are so weary of tears. Sometimes it is so hard to remain joyful. It is so easy to get scared. (Fear is the emotion of the kidneys in Chinese medicine. Coincidence? I think not.)

“I just don’t see how this is going to end well.”

“Thats ok. Its ok. It might be that we are moving through something and we will all heal from this. Or maybe not. We don’t know. We can’t know. But we also do not know what’s beyond this life. People experience ghosts, light, god, nothingness. But no one knows, not really, what happens after death. And no one really knows, no one can know, why we are here.

Yesterday, with Leilani, I felt how I am not in my root chakra. My spirit is going up the chakras, as we know it does (in eastern medicine and spirituality) when separating from the body. I felt my lack of self in the lowest chakra. I can see how this is a part of what is happening.

Perhaps, at some point, I became afraid to be here. Perhaps I became too afraid for my daughter. Perhaps, awhile ago, I began to start the process of leaving.

Yet I also felt my heart chakra opening, and the warming of my pelvis and root as my spirit went down to reinhabit the area, and i breathed and opened myself to entering the areas of pain in my kidneys and pelvis. Then pain left me. I felt as vigorous in my body as a teenager or child, my body free and open and humming with energy. I experienced a transcended state of consciousness. All was bright and free and revitalized.

No, I do not know how this will end. I gave my life to the universe, to god, to serve the highest good awhile ago. And many times, for many people, such as Lennon, MLK Jr, bob marley, saints, and countless others who chose to live for a message of love, death comes early to claim them back.

If it is up to me, I do not want to die yet. I want to stay here, with my beautiful family, in a love very true, very pure between us. And I do not want Adahlia to die yet, either. I see such a wonderful future for us all, together, playing, and giving back to this world. Is that the highest good? Or is this life a vehicle for something else, and that would be better served by our early departure? Perhaps to reach more people? I do not know. I hope we get to stay here. To play and love and contribute to healing our world.

I feel I can heal from this, whatever is going on. Adahlia, too. Chinese and natural medicine is very powerful. If we are meant to stay here, we will.

All beginnings come from endings. All transformations come from death, figuratively or otherwise.

Witness the Phoenix. The Cross.

I believe we are here to play and to learn. To evolve into our highest selves. To become free and beautiful, divine incarnations on earth.

We must trust this process because we do not understand or know anything. I trust it. It is beautiful. What is happening is supposed to happen. Trust it.

Trust it.”