Dannie's balcony

May 2^nd, 2012

Dannie’s 22^nd birthday~Ari’s first day back in the United States

Twenty two years ago, at about three in the morning, Dannie joined us after only 45 minutes from hospital door to her birth, with Ari seeing her only seconds old, holding her only hours old. Grandpa Steele cradling her close to his heart, until her jaundice was so raging that she was taken to an isolate, eyes with protective covering, teetering on the edge of transfusion, for the next five days.

Learning  how to “hold” without touching, transmit  love energy through glass, be fully present in the moment  for the ten to twenty minutes each three hours when I was allowed to lift her from her brightly lit encasement into my arms to cradle, gaze, stroke, talk, sing, and feed her. Learning to make each moment precious, to distill, concentrate, project, receive, and then to let go too soon. To wait. To behold and believe in her vitality and health.

A week later, she was surpassing all developmental markers and making up for lost time. Crawling at three months, walking around seven months, jumping off the couch at just over a year… and by eighteen months expressing herself in two words, then three, then sentences. She didn’t chatter… but when she had something to say it was in sentences, then paragraphs.

Happy, determined girl… climbing up the front of bookcases, telling fantastic stories believable by adults who would seek verification from me when she was only three, dancing, singing, asking “mommy, is it funny?” referring to attempts to make me laugh…. What a joyous, rich early childhood. I never helped with homework… she was steps ahead, independent, organized and finished before dinner. Basket ball, horseback riding, kick boxing, dancing  and more dancing, singing, drama, friendships, developing a social conscious and attending to the “least-liked”, while being among the “most liked,” developing child-like faith, her birth name Imani~Faith in Swahili. Strong willed while at the same time anticipating others’ needs and caring for others’ feelings, pushing her physical limits, writing and reciting poetry, loving animals and those she perceived as needing love… being big sister to her older brother, changing her name at ten to reflect her tom-boy identity which I believe better captured for her, her personal identity and sense of power. When Ari became ill, Dannie claimed that she was okay for weeks, maybe months, despite a sprinkling of tummy aches, sore knees, episodes of fuzzy vision, and exercised induced asthma…Eventually, her symptoms were apparent and growing louder. She refused to be sick; she deflected attention for anything associated with being sick or pain… basically pushed aside anything she felt would interrupt her intentions to live fully, anything that might hold her back as long as she was able.

Fast forward… she is still amazingly sensitive and strong… assuring and caring for others in the midst of unbearable suffering, making us laugh, giving words of encouragement, pushing forward, envisioning a future, filling the present with as much love and richness as possible. Faith over Fear.

Recap on last two weeks:

Last Thursday morning, just after breakfast Dannie began to lisp which was an initial cause for laughter between Dannie and Kyler, which quickly transitioned into fear and action, as her tongue swelled to the size of a half apple, face blew up, she was unable to speak at all, wrote a note quickly to Kyler to get help, who had already grabbed a wash cloth to put in her mouth to help her prevent biting her tongue. The several minutes for a doctor to get there and give her IV phenergan to stop the anaphylactic reaction to who knows what, seemed eternal. I walked in with a crowd around Dannie and the antidote already given. The swelling came down with the shower of guesses about causes, no answers. That evening, just after dinner, we were chatting, and suddenly her tone changed and she said her tongue felt tingly again… within seconds there was a repeat episode, faster and more furious. I pushed the call buzzer and ran for help. It  was not as quick coming as I felt it should have been given the morning rehearsal….different doctor, repeat questions, need to get other doctor while her airway became more obstructed.

There are times that I muffle screams of total exasperation at things that seem “common sense” to me but weren’t to others… then times I am accused of over communicating because I am saying the obvious which I want to make sure don’t fall into the prior category, and times when the communication is a chapter written by a half dozen contributors when I think a simple word or two exchange should be enough. And when literally my daughter’s life was in the balance I had little reserve for unnecessary pontification…. Yet needed not to alienate, and needed to be quickly understood. Whew, strategic thinking required when I wished screaming “Help it is happening again!!!” would have brought a prepared syringe… I fought internally to show confidence and calm for Dannie… communicate in a way to get a rapid response without paragraphs… and muffle my exasperation… proclaiming to myself, faith not fear.  Getting tired of hearing my mantra? Couldn’t do this without the strong belief in God’s promise that all things work together for good for those who love God, according to his purpose. I do not believe, nor did I believe in the moment, that it was the Creator’s intention that Dannie die in India… thus no fear, albeit tons of adrenaline.

IV phenergan given, swelling subsided. After the MD’s determining that it wasn’t safe for her to be at the clinic that night she was ambulanced to Apollo again, an experience that I had pledged to never never never happen again. Dannie was courageous, relaxed as possible, agreeable, and amazingly strong despite the pain of transport, waiting in emergency room for admission,  being stuck with needles, rehashing her history… her chest x-rayed, and no allergy testing or determination whatsoever of what caused her experiences. I survived a night trying to sleep on a step stool, then a chair that got dragged from who knows where that caused my back to be arched forward about eight degrees, and Kyler slept in a crescent moon shaped corner of Dannie’s bed. We were grateful, quite honestly, for both, as the strict rules were no night visitors in the very crowded six bed ICU unit, with beds separated only by curtains. When they said for us to leave, I simply said no, I am not leaving… and they allowed us both to stay. (Thank you thank you thank you) Not one cell in my body was prepared to even stay in the hallway.

waiting for ambulance for second trip to Apollo

my "bed" at Apollo

Apollo Stay Number Two

The next day she was discharged, (a two hour process for me, and three different departments)  sent to another hospital for a spect scan since she was “out,”  then back to the clinic with no more information than we had about the episodes than when they happened… essentially no change except a night of ICU level medical help close by, and instructions for her to eat only fruit and egg whites. To date no allergy testing… will revisit tomorrow.

ambulance ride from Apollo to Fortis Hospital

Egg Whites and Fruit!

Dr. Shroff was wonderful, ordering a special Indian diet for Dannie with medication on standby. So far, so good… and Dr. SHrofh also made special arrangements to have Dannie’s eyes tested here by an ophthalmologist to find that the eyes themselves are healthy, but her vision is as bad as she had been reporting. Special arrangements have been made to have an optometrist visit here since going out is not an option,  to order glasses so that her brain is able to perceive visual stimuli more clearly, as the stem cells begin to take root and develop.  She is very excited, as reading has been essentially impossible. This will remove one obstacle!!!

So today, her birthday we will focus on what is working, feeling good, giving hope. She just received a birthday cake from Dr. Shroff, and though she can’t have the gluten, we carefully scraped the sugary fudge frosting off of it for her sampling, after blowing out the candles. This was followed by a stylist being transported from Asian Roots to wash her hair (the third hair washing since arrival) and  to give her a facial, and she fell fast asleep during the facial. Tonight she will have acupressure and we are hoping, with a bit of pharmaceutical help, her pain may be quieted to allow her to go to dinner with Kyler…. Not sure yet.

22nd birthday wish

Avoiding Gluten... frosting only!

Abha and Dannie on Birthday

Dr. Shalinger celebrating Dannie's birthday

Asian Roots makes visit to NuTech for Dannie's Birthday

She steps into her twenty-third year full of hope and anticipation, believing in things yet unseen.

In an hour or so it may be late enough  morning in California for me to call Ari… He safely landed in San Francisco about twelve hours ago. It is taking as much self control as is needed for waiting on Christmas morning , to postpone calling!!! We had a wonderful day out for lunch his last day. His two new friends, SanJay and Pawan came over to wish him well. Clint stayed the night and we took him to the airport with the sunrise lighting his way. I will write more when I speak with him… and he will have to post pictures. All day the sisters have been telling me how they will miss him, what a positive person he is, a model patient, kind and generous, always with a smile. I feel his absence.  I think this was the time when the balance has shifted to him being “a man” to me… I drew strength from his presence here, a fuller reciprocity that has been developing for some time. Sigh. Joy.

SanJay and Ari at lunch at Amour...

Pawan

Clint and Ari

At lunch, caught thinking, Ari's last day.

more to come