Archive for the ‘home’ Category

October 26, 2012

In home on November 15, 2012 at 4:24 am

I’ve just arrived home, one of a dozen Fridays since Dannie returned from India, bringing us all together again.

Productive workday. Putting my feet up, settling in for a night of knowing what needs to be done, and not doing it. Rest. That will be my only goal now. Simple rest,  until Dannie awakes and starts her semblance of a day at midnight—maybe a half hour of eating something, swallowing supplements, checking in, washing up, and trying to sleep again. I will push sleep aside for the precious time with her. Her pain, sleeplessness and chasing sleep, can lead to days of not being with her awake more than a moment or two. I miss her.

Sitting in bed, the heat from the laptop is better than an electric blanket. I have conversations in my mind, often edited to nothing before committed to writing. Too much, not enough facing the formidable task of closing the gap between India, the note on August 5th, and the present.

Someone said to me, of being asked that simple question riddled with complexity for those of us who face on-going struggle: “How are you?”  that she committed to tell the truth, and if they dare to ask again she would tell the truth again. This, her own personal commitment to educating others about the impact of her illness, the moment to moment “in your face reality”. I believe her to be courageous. The temptation – the interpersonal cultural imperative, is to make light, tell only the good. Soften it. Minimize, deny. Who wants to hear that the struggle continues? There seems to be some unspoken timeline that we are afforded to resolve tragedy. Unless, of course we are viewing the voyeuristic reality shows, that make profit from pain and suffering—on and on and on, at arm’s length, not real, not up close and personal. Up close, personal, we want to herald the good news, diminish the not so good, take care of those who care for us and are weary with no new responses. We want to spare them from our pain. We want them to see who we are, independent from the pain, remember who we were, who we were to become. Not want to pull back and shrink from us. Most of all, not to go away. Don’t go away.

Half full, claim optimism, focus on the positive. Yes, and genuinely, we do. Every day. Every moment, segments of moments. Celebrating each filament of light with gratitude. Each gift of lightness, love, freedom, comfort treasured.

Yes— and unveiling the challenge is important as well. They both exist, the tragedy and the triumph, side by side, inextricably intertwined. Both need to be spoken. And every time I write, I face this delicate balance. Please bear with me. Know we are joyous each day, blessed with so much love, blessed with people coming along side us, helping us to keep going.  And each day we are challenged, sometimes to the edge of the abyss. Each day there is loss, each day there is victory. And Sadness. And Joy. And falling. And climbing. And soaring. And sinking. Moments of utter darkness. And white sparkling light. And faith, hope and love hold all the disparate dimensions together. We keep going.

Big deep breath. Here it goes~

Ari just sent in an English paper on line, five hours prior to the deadline. Now rewarding himself spending some time with Mike. His first season home from India, stem cells developing, he has been guarding his health while gingerly testing the limits of his new found capability a bit. Ari is an expert at pacing himself, necessitated by his illness. He has learned to step forward some, paying close attention to the “some” not becoming “too much” landing him back in bed. The unmatched sense of wellness he experienced in India is a bright and clear memory, now the ruler by which all other days are measured. His energy has subsided some, some pain has returned and he experiences a diluted array of his former symptoms. The dramatic surge forward has now retracted and settled at a place somewhere in between his baseline in bed, and the dream-like days of freedom from symptoms which he filled with adventures on the streets of New Delhi in early 2012.

He is “working out” his brain with a math and an English class, engaging in gardening therapy with dozens of plants starting up about the house and in the yard. I have long since given up on having everything in its place and instead, have welcomed new life of sprouting dates, bonsai pines, a “grove” of start-up avocado trees, fledgling plants in the corner of the living room, sprouts lining window sill in the kitchen and any surface that gets adequate sun, spray misters donning the countertops, seeds soaking in glasses, the coffee table hosting a miniature green house, and frequent reminders not to throw out any seeds yielded from store-bought fruit. New life surging forth daily, carefully tended and loved. Some thriving, some shrinking and dying, not quite taking hold. Yes,  the metaphor of Ari’s and our family’s life. Not surprising that he has taken to bonsai. Bringing forth beauty from life that has been forced to grow under constrained and bound conditions.


Ari is anxious to return to India for his next treatment. We are joyfully watching some of  his India “family”  Blake and Shannon, on Facebook having returned to India for their next treatments. Good news, improvements to celebrate. Initially Ari hoped for December 2012, which was recommended, yet there are still sizeable bills from the first trip, and fundraising needed for the next. The Santa Rosa crew helped so much ~Golf, Picnic, and Auction, LymeLight Foundation grants, challenge grant from the National Transplant Assistance Foundation, an individual donor through the Harvest Church, events organized by Yoga of Los Altos and Crossroads Fitness,  and many individual donors launched the first trip, followed by dozens of individual donors through the website,  and Central Peninsula Church’s amazing home makeover welcoming us home. All giving sacrificially to help. Pure love. We pray that each and every person who prayed for us, donated time and talent, as well as funds, offered hugs and smiles, sometimes tears, would be blessed by God as they have blessed us.

Santa Rosa fundraising team!
Row 1 Nancy, Robert and Micky
Row 2 Joan, Jan, Robert, Sheila, Denise, Geoff and Shelly
Row 3 Wayne, Glenn and Chris

We are curious about how this next chapter will unfold. Ari’s experienced improvement has solidified his confidence in the HESC treatment, and he is the best he has been since he was on the far side of this illness. Our faith, though, is in God, and we remain ready for Him to lead and us to follow. So onward with gratitude, faith and love… .oh, and more patience.

Dannie in her room, sleeping or trying to sleep, the latter more abundant. Did you know that Dannie’s birth name is Imani, meaning Faith? She changed it at ten, a mind of her own, claiming her tomboy identity and hasn’t let it go. Her toughness has remained… though beautifully and femininely held.

I saw a young woman who looked like Dannie, perhaps 19, in the coffee shop where I got a smoked salmon omelet for lunch today. Reading, computer set up on the table, a tea at hand. Focusing on the screen, the book, the screen, seemingly a student.

My eyes quickly darted away, rejecting the image before my mind formed a thought. Pain flashing from my heart to my fingertips in an instant… deep cleansing breath~ one, two, three. My gaze slowly returned to her, as a flower to the sun, without conscious choice. It was as if I was looking into a movie scene in slow motion, a dreamlike depiction of what should have been. The surroundings muted and blurred. Heart ached, at one moment in time I almost heard it, as if my heart moaning audibly with each beat, for the deep deep longing to claim such a day for my dear dear Mani. Repeat: Deep cleansing breath ~one, two, three. Calm washing through me, ushering out the wave of uninvited sadness.  Returning to faith, to FAITH, to knowing that God loves her more than I. Claiming :  “I know the plans I have for you declares the Lord. Plans to prosper and not to harm you, plans to give you hope and a future.” Jeremiah 29:11. The verse Dannie and I have repeated in concert, arms grasping each other, locked eyes, our mantra through countless dark nights riddled with pain, nearing death, and clawing, crawling back toward life again.

This quickly captured picture of a stranger sitting just so, lost in her world, catapulted my heart, my mind into a universe not bound by time, a gestalt of a full life I had attempted to set the stage for…Holding my dear girl in my heart- at once glistening images blasting through me on a cellular level:  a student, engaged in intense conversation, laughing from her belly, pushing too hard, demanding A’s of herself, cramming in social time anyway, dancing with abandon, rushing to kickboxing coaching sessions with Tommy Winston, squeezing in studying at the beach, balancing a student budget, forgetting to call me, struggling to decide whether or not to come home for Thanksgiving as her full life has competing pulls, finding those friends that speak to her heart and mind…feeling the warm fall sun on her skin, spontaneous joy, and not knowing that it all was anything but normal… not anything to take notice of really…just a day, followed and preceded by more, and more and more, stringing together to form a life, a LIFE. Scribbling a “to-do” that springs off the page into reality, not destined to live only in ink waiting endlessly, a time when the embodiment of the written intention, would be possible.

And it will be. Dreams are the seeds of our future, and Dannie is resplendent with dreams. Doggedly stubborn, persistent. Writing her lists nearly daily. Starting again tomorrow.

I believe, God, through the HESC treatment in India saved Dannie’s life. She was spiraling down at such a pace, and we had nothing more to try. Then, when I faced the wall of my human capacity, the doors began to open, and paved the way to New Delhi. The Rapid Decent slowed yet was interrupted with dramatic and angry medical crisis of great proportions. Near death. Ineffable.  The mind pictures make my body flash cold, tremble, face flush, seize my stomach ~ and I actively release them from my thoughts, from my cells to make room for good. No spontaneous healing. No rapid recovery.  Yet. The decent slowed and then stopped. Now there is a modicum of discernible movement in the right direction, toward life.

That said, her suffering remains the challenge for each day, each moment.  Good news, bad news. The tide has changed but she is still gasping for air, trying to right herself, and straining to identify the shore. The waves are still pummeling her, tossing and turning her. And she is still fighting. Some days she catches the current and flows with it. She has been able to get dressed once every week or week and a half. This is tremendous compared to prior to India. We celebrate. She fought to get dressed for Ari’s 25th birthday dinner, and did, and hushed me from telling Ari what a feat it was, wanting him to experience her being there for him, free and clear from concern about her.

Ari’s birthday dinner with Dannie. First time she has been able to get dressed and out of bed to celebrate with Ari in years.

There is no freedom from pain. Yet. ..

She has been taking a hiatus, trying to rest, allowing rest, to recuperate from the trek to India, the challenges that filled every day and her concussion upon returning; to position herself to welcome the next step when it arrives.

The initial vision was for her to be freed from pain fairly early in the process though we were fully informed and expected that she would need a series of treatments, perhaps four or five. While she has gotten better from her first treatment, freedom from pain was not to be had. Her brain is clearer; some of the cognitive symptoms have subsided. She has, by pure force of will, courage and grace, reduced her pain medications as they are ineffective and she wishes to free her body from their presence. Her pain doctor was startled at her success, not feeling it possible outside the hospital. But Dannie girl was determined and beat out the odds. She feels a myriad of symptoms all the time, and at times is discouraged, sad, and angry. Justifiably. Hope runs thin at times. She is prayerfully listening and following her sense that she is to rest, just rest at this time. She continues to treat Lyme, is practicing mindful meditation,  stretching, following a protocol from Amen Clinics to help her brain heal and continuing to work with her Lyme MD.

We have found with much prayer and contemplation, a multidisciplinary comprehensive program in Arizona to help her with the pain, the most disabling of her symptoms. I have spoken with them several times since before India. Dannie feels drawn to this program because of its philosophy and treatment modalities. It has been recommended by her pain doctors (here and in Los Angeles) and the hospital pain teams she has been seen by. We are placing it before God as the means to get there are not yet evident. We strongly feel that a therapeutic environment, outside the walls where she has lived out her illness, is the next step, and required to promote healing. Equally as important, to introduce her to a life that she has missed. Essentially home bound since ten, this would be an amazing step toward her fully embracing the next chapter of her life, learning more of life, to prepare her for the time when she is free from illness. To be in a place with new energy, expertise, opportunity to learn and practice new coping, to try new approaches, with help at her ready disposal reducing the extreme isolation she has lived with. Access to physical therapy, acupuncture, counseling and more to retraining her brain, her body and her spirit to learn to live more fully, to move beyond the pain. Then, with more readiness, and in a stronger state, her next trip to India can be planned.

I close with a deep sense of gratitude, of expectation that none of this will be unharvested for good.

In a spirit of Thanksgiving,


August 5, 2012

In home, Uncategorized on August 6, 2012 at 8:46 am

I should have known better than to promise to write more “tomorrow,” now over a month ago. Whew! Every moment is vied for. How I would love to sit at the computer, sorting through this adventure, committing to writing the complexity, the gifts, the miracles, the revelations, the steep inclines, the mogul covered hillsides, the storms, the droughts, the deafening silence, the pounding thunder… It does not seem real, yet too real. Santa Rosa hometown simple girl. Nothing simple now. Yet, in many ways, more simple. For me, I have narrowed my focus to this: The most important thing is love. If, in a day I love God, if I love others, if I remember that is the most important calling and act congruently, it is a good day. To me, loving is not limited to a feeling, but is a verb, is not contingent upon circumstances, health, intelligence, memory, resources, plans, not even shelter or food. Love is possible independent of anything, free, unlimited.

Ari and I have been enjoying our house and garden every day. EVERYDAY, thanks to the Central Peninsula Church makeover. I awake in a bedroom that feels cozy yet tailored and orderly like a hotel room (a good thing), bright and cheerful… evidence of such love. Ari and I have had evenings sitting in the garden, though not nearly enough with the windy Belmont pseudo-summer.  The love invested in our home, welcoming each of us upon our separate returns is lingering…permanent, and still causes us to feel surprised and reminded daily that we are not alone. The transition home is hard to articulate, and the newness and warmth of our home, infused with love, eased the re-entry.

Ari is slowly, but surely, moving forward. While his sense of well-being has not returned to the level he experienced in India, is pain continues to be less, and his “productive hours” are improved. He is holding at about 30-40%, getting dressed every day, facing the challenge of figuring out how to start from scratch to engage more fully in life. We are all working to listen for God’s voice and direction… He is teaching himself bonsai, spending time in the garden, and spent some time in the outdoors last week. He marveled at the water bugs, the sound of wind in the trees, birds singing… celebrating the amazing world we live in, from which he had been cut off from for so long. Pure joy!We are so grateful, encouraged and fully anticipating his continued healing as the stem cells mature. We are still planning for his next trip in December, funds permitting. He has registered for classes in the Fall, confident that he will be able to work away at his General Education requirements. Yeah! It is no longer “light at the end of the tunnel”~ there is now light IN the tunnel.

At long last, Dannie and Kyler are back! After weeks of them waiting in 115 degree heat in New Delhi, managing her illness, while Lorrilynn and I worked to arrange the trip back— to find a doctor to travel to India to  monitor her condition and manage her pain on her flight back; and then, to coordinate return flights for the doctor, Kyler and Dannie became a challenge of larger proportions than I could have ever imagined.  Getting a visa for the doctor took weeks; attempting to use air miles while having very specific needs and timing,  proved a puzzle not to be solved. After six weeks of daily checking flights and prayers for direction, it was clear that saving the air miles for the next trip and getting Dannie home needed to happen imminently. With the visa in hand, flights purchased, and without medical clearance, the doctor, with gentle but firm persistence, negotiated Dannie onto the flights, and they all arrived safely home on July 16th.

We are celebrating that Dannie’s neurological functioning and vision have  improved and expect that it will continue to improve. However, the bone joint muscle and skin pain are not yet relieved. While it was anticipated that she would need a series of treatments, we still anticipated some remediation of her pain sooner rather than later, which would have the most dramatic impact on her quality of life. This is tough.  While being so grateful for the cognitive improvement, it has come with her increased awareness of her experience of pain and clearer focus on her “situation.” Needless to say, this is a challenge in and of itself.

Last week began with a start. Saturday Dannie’s pain continued to escalate into Sunday, necessitating guidance by two of her MD’s, praying to find some way to help, outside the hospital. She was having a very difficult time, requiring attentive loving care and support.  She started a new pain approach last weekend and continues to believe that as the stem cells heal the damaged areas in her brain, when the pain center heals, her pain will subside. She has made incredible progress in eliminating the most concerning medications from her protocol. We are considering/researching many alternatives to help her with the pain and physical therapy, in the interim between trips. Most decidedly, this is the preeminent issue right now as she is in 24/7 pain… on the pain scale a 9-10… nearly all energy/attention demanded to cope with the pain.One tough girl!

For those who asked: All the funds raised have been spent on the treatment and associated costs and credit cards nearly are  at their max. With three unanticipated admissions to the hospital including 11 days in ICU (not covered by insurance), and an extra month of treatment for both Dannie and Ari, extended stays, additional caregiving required, and unexpected purchase of airline tickets…. The only card with a balance available for the return flights and extended lodging was American Express. With the full knowledge that there not being sufficient funds yet secured to fully pay for the necessary expenses, had I(with an amazing community around me) stepped forward in faith to secure Dannie and Ari’s treatment. While the funds were not fully present, the clear direction was~ results of the prayers of many, clear road signs, doors opening just as we stepped forward, but many times, not until we stepped forward in faith, with confidence not in ourselves, but in God.

So last Monday, I checked the American Express balance, uncertain as to how this would be covered, due in three days.  As has been the case throughout this journey….Tuesday I unexpectedly received an email letting me know about the receipt of an extremely generous donation to help with Dannie and Ari’s medical care. I was able to pay the American Express bill on time. Miracles upon miracles… God is Good… and thereare so many amazingly loving people in our lives, without whom Ari and Dannie would not be turning the corner toward healing.

I am humbled and not sure how to fully express my gratitude. I have always been grateful that God entrusted me to be Dannie and Ari’s mother, yet at times, I have not lived with the certainty that God will provide for the challenges that have arisen in meeting this responsibility and joy.  I have missed times of peace, when I could have been resting in the knowing that God would provide. How different it is to know, not just hope. There is more freedom now.

Ari and Dannie are on their way. I believe Dannie’s life has been saved, and Ari is solidly on his way to restored health.  Onward.

Next week my high schoolmates are having a fundraiser: golf tournament friday and barbeque saturday to help us raise funds to continue to pay for the treatment provided thus far, and to look forward to the future trips to complete the transplant process.  Thank you to Glenn Pope for leading this amazing initiative!

Just before posting this, for the first time since she got home, Dannie was able to get up and get dressed! This is a very big deal, taking several hours. She is amazing!

Golf Tournament Flyer

Ari & Dannie Picnic Flyer

Love and faith…patience… more love, more faith.

In home on June 27, 2012 at 6:13 pm

Saturday morning, sunny, windy, a bit chilly Belmont. I’ve been awake for hours~meditated, took  a walk while reading Healing Code, sunglasses over reading glasses, the morning sun washing me in memories of simplier times, the crisp air on my face,  bringing me to other days, other walks…

A simple walk, savored… years upon years of being bedside, not outside. Nothing simple, nothing taken for granted, a miracle moment… feeling the air, seeing a squirrel on the power line, smelling bacon from a house as I passed by, hearing  the slapping of feet on the pavement, breath in and out. Each and every awareness provoking an intensity of life. LIFE!

I haven’t written since returning home. It seems so complicated. Words, written words… my inability to capture the textures, contradictions, vacillation, so many layers to everything…and my unwillingness to put anything down that doesn’t seem to depict  the real “it.” The Joys and Demands of work back in place, halting time to reflect. The freedom of a schedule/the bondage of that same schedule. It has been daunting to approach writing any of “it”, so I have remained silent.

The  dilemma:

How much is too much?  How to be true to the essence of it all?… so many dimensions…. There is not one thing only.  I believe in the healing happening, of “things not yet seen.” It is complicated, in light of this, to find the place between amplification of the positive that is tangible vs in the arena of faith, and minimization of the “bad stuff” so as not to give it energy/power.  It is both/and, not either/or.  It takes resolute faith and the tolerance of ambiguity wedded to each other,  to move forward.


Who has the courage to see/feel/accept and not turn away?  Who has the strength and love to continue to care and invest—to feel the horror in observing our struggles, to face one’s own fears,  to be willing to have one’s beliefs challenged, comfort zone breached… To take the risk to keep bearing witness, to relinquish the comfort  of not knowning, to really look upon this thing…to resist the sugarcoating and clichés,  to keep loving, to keep standing in the gap with us until the healing fully manifests?

For now, I will simply catch up, simply.

Dannie and Kyler remain in India. Knowing  before embarking on this journey that with the depth of healing needed, she most likely will require undergoing several episodes of treatment,  still didn’t dilute our optimism that Dannie would have extraordinary, supernatural even,  results right away. Each of us have taken turns restating this for the others, “it takes time” “often the change doesn’t happen until after the second or third visit” “we knew this going in”…. and we celebrate each moment when debilitating symptoms are at all kept at bay just enough for something other than managing, coping, to be possible.

  • With her first round of treatment completed, Dannie’s spect scan showed improvement…  some cognitive improvements noted, with the hoped for  improvement in pain and other symptoms lagging behind…not happening yet.  We await the surfacing of the healing that is happening inside Dannie over the next several months. Quite exhausted from the treatment and hospitalization ordeals, Dannie and Kyler moved from the clinic to a hotel to rest and to reevaluate whether or not Dannie would stay on and receive more treatment before coming home, or come home and return after a more extended rehab/rest period. The weeks of hoped for rest and relaxation have been challenging, coping with continuing pain and myriad other symptoms. Happy moments have emerged in the midst: ~a few visits to the pool, and leaving the hotel twice to be a “tourist” with pure JOY. Rare and precious photo opts. Soak it in, make it more real, bigger, louder, brighter than the days, months on either side of it. The golf course, visiting a monkey down the street.

In two years, Dannie and Kyler can now herald four or five “dates.”  In the spirit of full disclosure of the “it” , these celebrations of “normalcy” which are anything but normal for Dannie and Kyler, are sandwiched between heroic efforts on Dannie’s part to get up and moving, override symptoms taunting her resolve to do it anyway, starts and stops, often hours of trying… adrenaline, courage, insistence, faith,  she pushes forward… as fully as possible she doggedly pursues the target activity that she set out for , working through pain, nausea, hot flashes, dizziness, sensory overload and sensitivity that she masks beautifully to reduce any discomfort her pain would cause those around her…..then  followed by days of “paying for it” with punishing symptoms…. On the outside she can make it look nearly effortless. Those of us who have been there to observe this process, behind the scenes, are exhausted just observing her ,  and in awe.  Kyler  by her side.

I just received a text from Kyler that it would be better to wait to call Dannie until tomorrow, as she is having a tough time right now.

Dannie has decided to come home, after much contemplation and prayer, she is guided to rest, recuperate, and gather strength before returning for more treatment.  We have been trying to get flights for three weeks, with no luck. Securing flights with the donated air miles  has proven a bit like trying to do a Rubik cube. Lorrilynn Conely, an amazing woman that we have never met, has donated literally tens of hours arranging all of the flights from the beginning of this journey. We have a doctor who will fly over to bring Dannie back, whose visa, for some unknown reason, has not come through, a full two weeks, plus, of waiting. Another test of faith. I can hear in Dannie’s voice and Kyler’s silence that they are growing weary.  115 degree heat,  no “second string” they have bravely navigated this part of the journey, the two of them.

·         Kyler’s Facebook post this past week:

Dannie Steele, this is for you. Love Kyler Chris Medina

Music video by Chris Medina performing What Are Words. (C) 2011 19 Recordings, Inc.

“What Are Words”

Anywhere you are, I am near
Anywhere you go, I’ll be there
Anytime you whisper my name, you’ll see

Where every single promise I’ll keep
Cause what kind of guy would I be
If I was to leave when you need me most

What are words
If you really don’t mean them
When you say them

What are words
If they’re only for good times
Then they’re done

When it’s love
Yeah, you say them out loud
Those words, They never go away
They live on, even when we’re gone

And I know an angel was sent just for me
And I know I’m meant to be where I am
And I’m gonna be

Standing right beside her tonight
And I’m gonna be by your side
I would never leave when she needs me most

What are words
If you really don’t mean them
When you say them

What are words
If they’re only for good times
Then they’re done

When it’s love
Yeah, you say them out loud
Those words, They never go away
They live on, even when we’re gone

Anywhere you are, I am near
Anywhere you go, I’ll be there
And I’m gonna be here forever more

Every single promise I’ll keep
Cause what kind of guy would I be
If I was to leave when you need me most

I’m forever keeping my angel close

Says it all…


Now June 27, 2012 at five a.m. Sunrise here,…no answer in India as evening comes on there.

I will update on Ari tomorrow.

Hoping for news on the Visa and Flights today.

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