Post Five

April 1, 2012 Palm Sunday

Spring. New beginnings. Celebration of rebirth.

O Christ our God

When Thou didst raise Lazarus from the dead before Thy Passion,

Thou didst confirm the resurrection of the universe.

Wherefore, we like children,

carry the banner of triumph and victory,

and we cry to Thee,

O Conqueror of Death,

Hosanna in the highest!

Blessed is He that cometh

in the Name of the Lord.

Little baby stem cells making their way to their new homes… ready to burst into life. True healing. Rebuilding…

We are grateful~ God-designed life… not a drug,  but the basic element of human life. Billions in Ari’s and Dannie’s bodies, programmed by their/our Creator to evolve perfectly into what is needed.

Each day we are dying to old things and giving birth to new. It is required here. Letting go, if only temporarily, to old and familiar ideas, old comforts, food, smells, sounds, sights, concepts, ideas, ways of being…. Opening to new, changing, perplexing circumstances, requirements, causes and effects, rhythms…  Open to each moment. Sometimes feeling like we are free falling, but with the comfort of knowing that we have a safety net woven of faith and evidence of so many miracles.

Dannie has experienced some progress!!! Thursday she muscled herself into a wheel chair to get outside her room and see, at least the building, where she is… we sat outside NuTech for a few minutes before going back inside. It was celebrated by the doctors… taking pictures, making them the screen saver on the community computer… joyous. No holding back with “professional distance” but clear celebration and proclamation of their excitement. Friday she sat in the shower by sheer force of will, for the first time in months, perhaps four, and Saturday she was able to tolerate having her hair combed out by Abha, who was a miracle worker. We anticipated that the mats would need to be cut out, leaving her without her long hair, so this was also a cause for celebration.  

Abha and Dannie

Abha’s handiwork

Intermixed with these milestones, she is experiencing continued pain every waking moment. The pain is changing and we are wondering if it is evidence of “retracing” a phenomenon wherein Lyme patients receiving stem cells re-experience past symptoms as the stem cells settle into areas of injury. For Dannie there are 12 years of very painful and difficult symptoms… Wednesday and Thursday she had myoclonus, and a long episode of seizure-like experiences which were very painful, straining, every muscle tensed and rigid, hands locked in fists, and completely exhausting. They seem to have passed, leaving the pain of the extreme straining in their wake. Her most recent searing burning pain seems to have been traded out for migraine, auras, nausea, and deep deep pain encapsulating her whole body. Her vision is much compromised, making seeing difficult. And noise is, at times, painful. We must be very careful not to accidently bump the bed sending waves of sharp pain through her body. Her veins are protesting holding IV lines and she has been accessed more than 20 times in the past two weeks. Her picc line came out, we believe due to her being moved by well-meaning nurses/MD’s at Apollo trying to get her on a gurney. Sleep has been elusive. No complete sleep cycles since Wednesday when she was able to sleep for four to five hours for the first time in months.

As I sit here, in the dim light of room with shades pulled, the hissing of the air conditioner, and ever present honking horns, she is now sleeping, or appearing so. Often it “looks like sleep” but she is not … just lying as still as possible so as not to stimulate any pain by movement. When the pain is at its highest, she does not even dare move her mouth to speak. Sometimes the only evidence of her wakefulness is a tear on her cheek and a soft, almost inaudible moan. Her pain visible: the sweat on her face, a furrowed brow.  Later she will report awareness of being awake… having been trying to disassociate from pain, meditate, breath. Like the relief that comes from a baby finally falling asleep after hours of crying: walking, patting rocking- we don’t dare verify if the stillness is sleep or another less restful state… we guard the door to minimize interruptions, do not disturb on the door… with the exception of the sisters bring medication.

Ari and Kyler are having a home cooked lunch somewhere in Delhi with a new found friend of Ari’s, Yudhisthir.  The heat is penetrating, sneaking up on those of us not familiar, requiring quantities of bottled water and mindfulness about hydration that surpasses our already practiced water consumption. After lunch Kyler hopes to shop to find some “pajama pants” to allow for a cool alternative to jeans, which really have no place in this weather.  Ari has acquired the traditional dress, which delights the MDs and sisters. He will move back tomorrow.

My heart is full.

in our bathroom today