arianddannie

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! http://www.montgomery73.com/3/events.htm

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

  1. Always a blessing to read your updates! Praise be to God for progress! Will cont. to keep you all in prayer.

  2. Kathy,
    Will miss the picnic, but will be thinking of you and your beautiful children. Your inner strength is truly amazing… Corine Stachel-Bollinger (sent support through NTAF)

  3. always thinking of you all…keeping you close in prayer.
    xo
    Paula Osorio

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