arianddannie

Archive for May, 2012|Monthly archive page

Late Entry from Ari 5.7.2012

In Ari on May 27, 2012 at 7:58 am

May 7, 2012

Hello!!!

I am home, tired, grateful, and optimistic. I was excited to be greeted at the airport by Michael, with balloons and much missed “American”snacks. Thanks to Sheila and Denise, I was also welcomed by Lily, Wes and Tori,(our dogs and cat) who had all been taken care of with great care, to the point I am not sure they were as pleased to be home as I was to see them! I came home to a house, though”empty” without Dannie and my mom, full of love! Silva was there and had received the dogs and cats and a delivery from Whole Foods early in theday, aired out the house. Barbara, Denise, Janae and Wayne collected our mail,and Janae has been making sure my mom is up to date with important stuff…. So many people have been a part of our being able to make this trip to India, and me coming back.

 

TheCentral Peninsula Church had done a “home makeover” which is Amazing!It was very meaningful to come home to a “home” that is filled with newness and a place to continue not only healing, but LIVING.

The whole house has a fresh feeling, organized, clean, and different. This means alot, as thru the illness… Dannie and my incapacity and mom’s over extended schedule and resources, some things just couldn’t get done or be kept up with. My room has a new masculine look… paint, area rug, head board, bedding,chairs…(mom’s and Dannie’s room are still a secret!). The garden is amazing…with new plants and much added color.  So many times in India, I just craved being in my garden, as it has been a place of relaxation and fruitful enjoyment. I will be back in it soon…with the new plants, order and tan bark reflecting God’s love through many “strangers” from Central Peninsula Church! It will always be a richer experience and reminder of God’s faithfulness.

Oh,and I can’t forget that there are now two cars in the garage! May sound insignificant to those unfamiliar with our “before” garage, but certainly is significant… lots of stuff gone and the rest of the stuff organized .Being the ‘car person” in our family, and moving here from a home with no garage, I had wanted a second car in the garage for the whole time we have lived here, and now it is possible. Thank you so much.

So…

It’s a bit overwhelming being here, not having had any time to recover before throwing myself onto a plane and back to the real world – exhausted and fee lthat I am unable to adequately communicate the complexity of my experience …I feel both excited, some sense of loss leaving India (the warmth of newfound friends and a different way of life) and not quite sure what to do with myself in this period of transition. I am so grateful for the stem-cells and needing time for rest and quiet reflection. Please pray for me that God listens and speaks to me louder that I might hear. I know that there are great things ahead!  Dr Geeta has told me that it will take about two weeks for me to recover from the travel, and I  CANT WAIT to see again all the improvements I have experienced and those yet to come!

I am so grateful, not only for my opportunity to receive stem cells and begin ahealing process that is changing the course of my life, but for my sister, who has waited faithfully for healing for so many years.

 

Thank you all so much,

 

AriSteele-Baker

 

 

 

 

 

Late Entry from Kyler 5.14.2012

In New Delhi on May 27, 2012 at 7:22 am

Thank you for everything! Last Thursday  (May 10, 2012) we were able to make it to a restaurant, Out Of The Box, for dinner. It was absolutely magical. We had tuna melts and greek  salads- boy do we miss fresh vegetables! Dannie did have to push really hard,

though. The next three days she was stuck in bed, the cost for pushing. Dannie said, however, “I was thrilled and elated to get out.”

We never take anything for granted. After being stuck in bed since Friday she was able to take a shower Sunday night, quite a big deal when it is the 4th since her arrival to India.

Yesterday we were able to make it to downstairs for yoga. Sara, and Heidi two fellow Lyme patients from Germany, and wonderful caregiver, Abah, also joined in.

“Despite our many trials and tribulations,  within such a great challenge-fighting for our lives, we still

manage to laugh” Dannie said, refering to herself, Heidi and Sara.

Today Daannie had an Epidrual Catheter procedure and will be suck in bed for two to three days, on bed rest receiving stem cells injected through a tube inserted in to her spine.

We are looking forward to Sheila’s arrival in a day.

Thank you everyone for all your prayers.

Kyler

If home is where the heart is…

In New Delhi on May 11, 2012 at 9:18 pm

A peaceful moment… sitting in the lounge at the Delhi airport with a latte, waiting for my flight, the first of three that will bring me home to Belmont late Thursday night.
A sprinkling of what look like business men in the lounge, one blonde woman who just left when the flight to Moscow was called. Hushed voices, clicking of computer keys, vacuuming in the background~ it is 3:30 a.m.
A tender, sweet parting leaving Dannie to continue her treatment at NuTech, as Kyler slept. She insisted of wheeling herself down to the front of the hospital to see me off.I hope she is sleeping by now. Such a complicated intertwining of thoughts and feelings. Amongst the most difficult moments. I notice that I am choosing to only give voice to the affirmative thoughts. Period. We are both strong women, and we are anchored in our faith. Clint, Ari’s constant companion in India, stepped in for Ari and offered to accompany me to the airport. Though only the travelers are allowed in the airport, having him in the taxi, and walking me to the entrance was comforting and gave me the opportunity to express to him my great appreciation and love… and to affirm that he has a wonderful life ahead.
I am anticipating a joyful reunion with Ari and excited to listen as he sorts through this most amazing experience and the changes and choices ahead.
Praying constantly for healing, for peace and a time when I will not feel divided.

Now in Abu Dhabi, I took advantage of the lounge shower… warm water… scrubbing off dust….clean big fluffy towels… good smells…latte, computer, no phone until SFO… time to breathe. Amazing amenities. … returning to my wage-earner role, despite the magnetic pull to continue to be by Dannie’s side as advocate, hair washer, listener, history keeper, voice, case manager, and general overseer running interference, paving the way, softening the blows when ever possible… which has not been nearly enough. Pull to be present with Ari. Onward.

Later: 25 plus hours, three planes , three countries. I am waking in Belmont this morning. Fifty degrees colder. Greeted by Wayne at the airport, Ari at the front door smiling, hugging, flanked by wiggly dogs, a beautifully welcoming home make over by Love Works, a quiet, fluffy, newly covered bed to settle into… instant connection with Ari’s experience, so difficult to put into words, the oriented, disorientation. Here and there… not here or there… Heart divided, no, heart expanded…. where is the resting place…. travel too long, no too short to capture the real change across the miles, the experience. It is all in process, no final conclusions to arrive at, where is the resting place? between breaths. notice the moment between breaths. There won’t be a conclusion… string of awarenesses, themes, glimpses of transcendent truths and a lot of unsorted stuff…
I am needing sleep. Dannie just called. Garbled, couldn’t understand most word..sleepy weak voice, but warm, connected. Understood feelings: love, tired, going forward, strong. And get to the bank for more money!

What habits broken not to resume… what to do with the caregiving hours, which pile to tackle first…. And Monday back to six day work week. I think I will watch a movie and go back to sleep. Brunch with Ari later. Maybe some chosen aloneness to breath.

And Sheila, Dear Sheila will be on her way to Dannie in a week. Blessed Sheila. My heart rests.

Psalm 139:9-10
“If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast.” NIV

Not here, not There…

In New Delhi on May 10, 2012 at 10:39 am

I am sitting in Abu Dhabi, awaiting my second flight of three, home. … returning to my wage-earner role, despite the magnetic pull to continue to be by Dannie’s side as advocate, hair washer, listener, history keeper, voice, case manager, and general overseer running interference, paving the way, softening the blows when ever possible… which has not been nearly enough. (more update later)

Equal pull to be present with Ari as he sorts through his trek to India and moves forward.
A tender, sweet parting leaving Dannie to continue her treatment at NuTech. Such a complicated intertwining of thoughts and feelings. I notice that I am choosing to only give voice to the affirmative thoughts. Period. We are both strong women, and we are anchored in our faith. I am anticipating a joyful reunion with Ari and excited to listen as he sorts through this most amazing experience and the changes and choices ahead.
Praying constantly for healing, for peace and a time when I will not feel divided. As I am in between Delhi and Belmont, I recognize God is in all places… working through so many.

That said:

 

Long overdue, tribute to Kyler…

Stop for a moment and remember your twenty fifth and sixth years… or look ahead to what you imagine they will be.

In a 2010 NY Times article the decade twenty’s were likened to the pluripotent characteristics of the human embryonic stem cells (near and dear to our hearts)… directions and possibilities  abundant, and  decisions once made, and actions taken, have lasting ramifications. This is the decade in which adventures, experiments, relationships, travel can be embarked on with a freedom that will, for most, never be revisited. What Is It About 20-Somethings? By ROBIN MARANTZ HENIG;Published: August 18, 2010

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Many are curious how in the world a young girl, bed bound for so many years, has a significant other who is so clearly present…

The shortish version: Ari and I were surmising how to help Dannie stay connected to the “outside world”. Well-intentioned friends had fallen away… the teens and twenties are a time for self exploration and adventure. Sitting bedside, bearing witness to suffering, is not a path that the average developing teen/young adult chooses to commit to. It is not for the faint of heart, it challenges the belief in immortality that is the framework for the abandon and adventure that is sandwiched between episodes of extreme discipline to education and career development. School dances, trips to Tahoe, a regular school day, or just a night out had long been impossible for Dannie, and often she did not have the stamina to even have a visitor sit with her. Then there was the dimension of not having shared in the common experiences… what to talk about, if there was even energy to talk. For a teen to hang in there would require personal sacrifice at a time when mobility and self-directed exploration are promoted and culturally sanctioned in the context in which Ari and Dannie were growing up. It is what they would have been doing, minus a miniscule tick  or two and a few zillion mold spores somewhere along the line…

So, enter Facebook… Ari and I decided to build a page for Dannie, so that she might have some peer contact. Bittersweet and risky… largely not helpful for her to witness all that she was missing as her childhood friends went on to college, realizing the dreams that she had on hold.  She rarely, then and now, finds this a place to go. That said, on a rare visit to her FB page, a conversation was started with Kyler,  when he “friended” her (a friend of a friend), and she was sufficiently intrigued to answer. The little energy she had to text, slowly over months, built a friendship without the demands of keeping time agreements, no need to be able to get up and get dressed, or acknowledge her illness. She got to just be Dannie, without the strain of cancelled plans, explanations, experiences of being left out,  pressure to be “normal.”  The relationship that emerged was based on a sharing of hearts and minds.

Then one day, after a period of treatment re-evaluation, Dannie decided to embark on a repeat regime of IV antibiotics… and as we drove to San Jose to have her second passport inserted into her arm, she was texting… and when asked by the “texter” who I later found out to be Kyler, what she was doing, she answered candidly. Hours later after the surgery, a follow up text from Kyler revealed that he had been on the internet learning about Lyme, asking intelligent and caring questions, and most notably to Dannie, not moving on…

Months later he drove from Loomis, where he was living, to Belmont for them to meet in person for the first time…the air was “electric” … cliché, but true. Kyler survived meeting me, the interview, the record check, the photos of his driver’s license, and license plates…That was just short of two years ago.

In the months that followed he relocated to the bay area and dedicated much of his life to being beside  Dannie actively supporting her passionate pursuit of health. His ardent commitment to her through all that has transpired contradicts all that is “normal” for this stage of self-pursuit… he has often been selfless, tireless, digging deep “one more time”. Their first meeting, he held her hair out of her face as she was throwing up, stuck laying on the floor in her friend’s bathroom as he sat by, eventually carrying her to the couch… the “not pretty” dimension of  her illness immediately unveiled, REAL.

To date they have been on four dates, and as Kyler says, “they have been magical.” Both say that they will never take anything ANYTHING for granted. They do know how to be in the moment, don’t need ‘entertainment’ to enjoy just being in each other’s presence, and grasp the precious meaning that is inherent in each moment of human life.

Last year Kyler, Dannie and I ventured to Santa Monica for her to receive rTMS, repetitive transcranial magnetic stimulation, an intervention intended to reset the pain center in her brain. This was six weeks of agony for Dannie, and Kyler provided care throughout as I traveled back and forth to work… sleepless nights, massage for hours, soothing, practical/hands on care giving, preparing food, lifting and carrying her, providing distraction from unbearable symptoms, looking for ways to insert “normalcy” where ever, whenever possible, keeping a supply of movies on hand, cheerleading, praying, reading aloud, encouraging, showing no disappointment for hopes unmet, celebrating any moments of positive change no matter how small, empathizing, holding, learning energy medicine and using it,  sitting quietly in the dark for hours, breathing, and repeating all of the above, day after day after day. We tag-teamed for part of the stay…nights when I sat behind her, bear hugging her, while he massaged her legs…midnight, one, two, three….

Many days and nights he and Dannie went it alone. Without him, she would not have been able to receive this treatment. He contributed his presence, fully. No complaints, tireless.

How many 25 year old men could live in such close quarters with their significant other’s mother under such stressful circumstances, with such expectations and demands? I am known to be certain what my daughter needs and deserves 😉 …and I am comfortable expressing myself. Let’s just say that Kyler is able to really “hear” without defensiveness, and to be a part of a team, to make sure that he manages to take care of himself so as not to crash and burn himself and to roll with ever-changing circumstances.

He has given tremendous love, tested, tried, and often devoid of any perceivable self-serving motivation.

After a week in India, Dannie’s health declined and she was transferred to another hospital ICU. I had not slept for days. I knew that it was not wise for Dannie or me, for me to continue to go it alone as her sole caregiver. I was dedicated to protecting Ari’s healing and not allow him to become a caregiver, amidst his own healing, despite his readiness to do just that.  I prayed, called home, explored the possibilities for reinforcement, and with the help of Wayne and Lorri finding flights (donated miles by Harold) Kyler made his personal arrangements was here in two or three days. He remains at her side.

Dannie found that being loved separate from her illness, and including her illness, having a present and future that included a meaningful relationship, that healing could be a tangible real thing. She acknowledges the love of her brother, mother, family friends that have stayed in her corner, and Kyler, have saved her life…. You are among that group.

Thank you, Kyler.

ari’s camera nu tech april 19 2012 021

In New Delhi, Uncategorized on May 10, 2012 at 10:10 am

ari's camera nu tech april 19 2012 021

May 2nd, 2012

In New Delhi on May 2, 2012 at 11:09 pm
Dannie's balcony

Dannie's balcony

May 2nd, 2012

Dannie’s 22nd 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

waiting for ambulance for second trip to Apollo

my "bed" at Apollo

my "bed" at Apollo

Apollo Stay Number Two

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

ambulance ride from Apollo to Fortis Hospital

Egg Whites and Fruit!

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

22nd birthday wish

Avoiding Gluten... frosting only!

Avoiding Gluten... frosting only!

Abha and Dannie on Birthday

Abha and Dannie on Birthday

Dr. Shalinger celebrating Dannie's birthday

Dr. Shalinger celebrating Dannie's birthday

Asian Roots makes visit to NuTech for 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... last day

SanJay and Ari at lunch at Amour...

Pawan

Pawan

Clint and Ari

Clint and Ari

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

more to come

more to come

Photo RETROSPECTIVE of Ari’s India Sojourn A DAY EARLY

In New Delhi on May 1, 2012 at 8:09 am

As Ari sits at the New Delhi airport, awaiting his flight back home, I am posting these pictures from his four months in India. More to come from Ari when he settles back in at home.

Random selections from a thousand choices…

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