The String Breaks!

Day 36, awaiting the call for Anna's double lung transplant.

Remember that string tied on Anna's wrist by her friend Emily minutes before she received the call that she was finally on the transplant list? Remember that it was supposed to be that when it broke her wish was to come true? Well, today, all of a sudden, the bracelet string broke! The little red string with the diminutive lotus charm is now a straight line, no longer a circle. And, yes, it was a surprise. And, yes, it created chaos of an emotional sort, "OMG is the transplant to happen today? The string broke. Am I ready? Yes, I am ready." And there also was a little woo woo with some serendipity in its timing. It was about exactly, to the minute, shortly after 2PM, 5 weeks since the knot was tied onto her wrist, a very specific time. What does this all really mean?

Superstition can be fun. It can be fun when you are sure not to take it too seriously, but lightly, with as they say, a grain of salt. But, we have to attach our meaning onto these events to create the superstition drama. What did this mean? Emily gave this to Anna for her dream to come true. I am sure Emily meant this to be for her transplant to happen. The instructions said, when the string breaks, new beginnings and your dream comes true. So what came true? The transplant call did not yet arrive. Could it have been the answer to another dream desire?

Today, Anna placed the order for 126 Tshirts! These are her Anna Banana's Bunch Tshirts ordered by friends and family to show spirit and support. Wow, thank you all. It will be fun to dress alike. It won't be hard to pick you out of a crowd. What this really means is that so many people have rallied to Anna's side. This means everything to her. She has a healing community of caring people. Now, there are more of you out there who are also in the Bunch without Tshirts, and you are just as important. But not all of us are as willing as you all to go topless or feel comfortable that way. Those of you in the Bunch who are willing to conform, be part of the crowd, and order a shirt, we are very grateful. It will be two weeks until the shirts arrive. So, you have to wait. When you finally get yours it will be so exciting. So, was this a part of the meaning of the string breaking now?

Anna admits it is her dream to have a healing community while she waits and goes through this journey. Ordering the Tshirts today, just before the string broke, was a big milestone for her in the establishment of this group. So, unless we get a call in the next few hours, let us say, that the dream has indeed come true, Anna has a warm supportive healing community, Anna Banana's Bunch........ the superstition of the breaking of the string and dreams coming true is real. The spell was cast and it worked. Thanks Emily for helping Anna make this special dream come true.

Healing Flags, Tablets and Prayers

Day 32, awaiting the call for Anna's double lung transplant.

Needing to send prayers and thoughts of hope, love and healing to those that we love is such a universal human expression. When in Japan at the Meji Temple with my friends Ana and Isa we saw a display of hundreds, no, thousands of small wood tablets inscribed with prayers from people world wide who had visited there. During a ceremony the priests of the Temple take the tablets and offer them to fire and flame changing their composition to pure energy, releasing them to the world. We wanted to be a part of this too and inscribed our own tablets leaving them at the Temple.

I took a few photos of these tablets to show the variety of languages and the simplicity of heart felt feelings that were expressed on them. I am sharing some of them with you here.

This type of activity has no boundary. Anyone can partake in it. The same is true for numerous projects that I have been involved in called, Healing Flag or Prayer Flag projects. My first such project was at Lucille Packard Children's Hospital. Hundreds of flags made of cotton with a simple sleeve at the top were decorated by patients, their families and health professionals. The result was an exhibit on the top of the hospital in a roof garden. There the flags flew sending their messages out to the universe.

Other projects included small private and personal ones commemorating a special event, including one in the surgical waiting room while Isa's lung transplant was being performed. Another was for a family in my neighborhood with an extremely ill child, Sophia. That project grew with a wonderful and supportive community to being very special.

I also organized a project at Ronald McDonald House in 2006. Flags were designed and decorated for about 9 months by members of the House and other volunteers making a display of over 300 flags. And this year, there will be another one at the House for a very special guest. In October the Dalai Lama will visit Ronald McDonald House at Stanford to give a special blessing to the children. Because I am so involved with caring for Anna I have not been able to participate very much but I did help with offering the structure and knowledge I had gained in my prior projects. It is really quite exciting. It will be a lovely event I am sure with the Healing Flags of Hope decorating the House.

I made a flag to be flown at the House for that exhibit with my prayer for Anna. May all the prayers from the tablets to the flags be released and heard. And if you are so moved you too can devise a way to decorate a stick, a flag, a tablet, a paper and hang it in your garden. Watch it as it interacts with the natural state of the weather and elements. Let it be and change and release its message into the world. It will be a better place because of it and you will be too.

Update

Day 31, awaiting the call for Anna's double lung transplant.

Weeks ago I wrote about comfort food and goat yogurt. I am measuring my residency of the apartment by the number of goat yogurts I consume while living there. As of today I have completed 11 goat yogurts! mmmmmm and there were many peaches, blueberries and bananas that went with those as well. The apartment has been home away from home for part of my week for about 2 1/2 months now.......... all going well. By the way, my neighbor upstairs who I have introduced to you continues to amaze me with more connections.

We went out to dinner Tuesday eve for a lite repast and chat. In following the thread of our conversation we were lead to another friendship connection that is so random. She knows our most dear friends in Murphys. She went to high school with them and was a best friend to Peggy's sister. It was another OMG, this little apartment complex brought us together with such interesting connections. Besides that she also knows from years ago another special friend who is from another part of my life during her days as a flight attendant. How could this be for me to meet this interesting woman who has been weaving into my life with these mutual connections that is creating such a wonderful and sticky gooey glue to bind us together.

Last night I wanted Anna to meet this new friend of mine. It was hot so not a good night to cook. Sushi was in order. Before we left Anna said, "Just wait, mom, she is going to know our favorite Yakkos and it will be her favorite too." Laughingly I said, "No way, that would add to this ridiculous serendipitous mesh of connections making meeting this woman a mind blower!"

You guessed it, in the car we said to Dorian, "We are taking you to our favorite sushi place in Mountain View." She replied, "Is it on Dana?" (Mind you there are hundreds of sushi places around here.) In unison Anna and I said, "OMG, you know Yakkos!" Dorian coolly told us, "it is a favorite that I go to with my friend. It is the best." Hmmmmmm. Now to you readers this may not sound so amazing but the time I am spending with this woman is kind of magical in all of its serendipity that continued that evening to open up other long past connections as well.

We had a great time together and Anna loves her. We are obviously fast friends, the three of us. Our conversation was filled with mutual interest, openness and newness. What a great new friend to find at this time. As Anna says, "She is not afraid. She understands where we are. We can have good conversations about what is real with her." I am sure there will be many adventures with Dorian.

Continuing the update, physical therapy is good. My knee is getting better everyday. This weekend I am going to take a short walk in the vineyard with Doug and Roxy. Anna is strong and enjoying her new project collecting orders for the Anna Banana Bunch Tshirts. This is a great and fun distraction.

We realize that we are just in the beginning of this process and that the transplant could be any time or in weeks or months. We are doing the best we can to entertain ourselves in our limited time slots along with all the must get dones and respiratory therapy. The clock is ticking, the hope is alive and we breathe and live with as much gusto as we can muster everyday.

A Mother Of All Time

Day 30, awaiting the call for Anna's double lung transplant.

As time continues and each sun rises, each moon becomes full, each breath rises and falls, the clock ticks. We move forward closer and closer to the time when the call will come. Meeting each day with a sense of newness and openness is the challenge. Sometimes I think, how can this story still be told without just a flavor of ordinariness if days and days and weeks and weeks continue to tick by? But the story of our life and of yours continues to unfold. We must trust it all to look for those sparks and moments.

Yesterday was ordinary until I "ran into" an old friend. I was out and about for a bit, walking up the street to buy a few groceries. Walking straight toward me was an old friend from our CF community whom I have not seen for many years. She is a CF mom too. Near us was a small table and chairs on the sidewalk welcoming us to sit and chat. We did and we cried too.

When Anna was little there was a group of 5 families with CF kids all about the same age that lived in Palo Alto. There were other families that we were connected to as well near by, but the fact that we were this group in the same city seemed remarkable. We all became involved in different capacities within our community and the building of our local organization. It was truly an important period of time, as when we first met, the CF gene had not yet been found but soon after, it was. When Anna was born, little was known scientifically about CF and why it manifested as it did. Very quickly research began to surface and bring some understanding. One of the biggest new breakthroughs was discovered by a researcher in southern California who had CF himself. He is still working in CF research.

In our group, one of the fathers changed his whole research career as a professor at Stanford and became a CF researcher opening the Cystic Fibrosis Research Laboratory at the university. Each of us found ourselves in a life we did not expect with this disease and the lives of our children threatened. It changed all of us for ever. It was devastating, but having others to fight with and to learn with made such a difference. The thing is that this disease is not only a one gene disease. Each of us have many other genes that interact with each other making us all unique. Some CFers have more destructive CF genes and some have other helper genes. So, the manifestation of CF in each of our children is unique. There really is no book that we can go to to read about what we should do in every situation with specific instructions in how to prevent lung destruction in each of our kids. We all just did the best we could at the time. The results were very different outcomes for each of our children.

My friend that I met yesterday had two children with CF and later had a third child without CF. I watched this family closely as Anna's age was smack in the middle of those two kids. This was a very dedicated family with many close and loving friends. They were very aggressive in their fight against the nasty bacteria with both kids on home IVs and multiple treatments to be given every day. Their friends took turns helping to pound on the children, make meals and support. It was impressive to witness. They were fighting with all their hearts and very intelligent minds to stave off the ravages. Unfortunately CF wins sometimes. It is nasty to the lungs of some children. Even though there are advances, this disease wins and at different ages. Life expectancy has improved a lot yet, young children do still die from CF.

Their daughter received new lungs at such a young age, in her early teens. She had her precious lungs to breathe with for about 7 years and died at 21 years old. She was the dear love and darling friend of her mother who misses her so much. We held hands about her loss, but she let me know that there were some wonderful years. Her other child is an adult, accomplished a PhD., is doing a post doc program and is improving in his health after his parents intervened with some added support. Lung disease is so rough, it takes so much energy to sustain normal life that even if these young adults want an independent life it can be very difficult.

The pain of losing a child who is your dear friend and is the subject of the destruction of lung disease and then chronic rejection from transplant is tremendous. She told me that another mother who I know that lost a daughter wrote to her describing the feeling that her daughter lives in "the air above her head". This is a lovely thought. Our dear ones never leave us as they become such a part of our hearts. They go with us everywhere and when there is a special memory sometimes it is as if they are alive for that moment next to us, speaking to us, telling us what we need to know. They live in that air above our heads.

I witnessed this family, this mother from a distance, but close, as we were a part of the community. I saw a warrior mother fighting with everything she had. When is it OK for a mother to stop fighting for the life of her child? Never, it can never happen. The need to use all that you have goes on and on and can continue even after the war is done. When that happens we must wrap ourselves in the shawl worn by the mothers of all time who have lost their children and become part of this tribe of wounded mother warriors.

I see my friend with a special head dress made of feathers and amulets with a bright purple shawl of triumph upon her shoulders proving that she was a magnificent mother with everything to be proud of. She is a special member of this tribe of the mothers of all time with a kind and giving heart. I pray for her strength and courage as she has this battle to wage twice in this life time. More than should be asked. May this outcome be so much better filled with miracles and life and breath for this mother and her family.

Cupcakes

Day 28, awaiting the call for Anna's double lung transplant.

Cupcakes are a treat. When they are done right they are a very pleasurable treat. Tiffane's Cupcakes in downtown Livermore are really, really good and any fine dinner or gathering of people would do very well by including them for desert. Being a cupcake aficionado, Anna believes they are even better than Sprinkles and Kara's in Palo Alto. Can it be that little Livermore out in the outskirts can have something better than our former city? It appears so........ this is a very good thing. As parents who moved to a new city we need to have hooks for ways that our kids will come to see us. Maybe cupcakes will be one of those things.......

Of course we are making plans for when the transplant is done and I am finally home in Livermore settling in and beginning to make a life for myself. I will want Anna and Sara to come and visit me, not because we are in crisis but because they want to. It is hard to imagine another time than now and our complicated lives, but I am hoping it comes. I love going home to Livermore. I love my house and its position on the vineyard. I love being able to walk to see horses in someone's backyard and a very large bull in another, and the sheep grazing down the block. I also love to watch the grapes as they move through their cycle from bare vines to fully ripe purple grapes waiting for harvest.

Right now, as it has always been, Anna has been a driving and central force as to how we operate as a family. She is definitely the center of attention. She came to our house on Saturday needing a treatment as Casey had another engagement. He dropped her off and came back to pick her up. So Sara came too and we gathered together in our home. Wonderful, especially for their dad who is spending a lot of time alone lately because of this situation.

We pounded on Anna, Sara did afternoon treatment and Doug did the evening one, ate way too much food including cupcakes and loved being together. But what will it be like when those time consuming CF rituals end? It has been the magnet that has been so much of our family dynamic. What is it going to be like without it? Things are going to change so much. I know that we love being together, so I do not think that will change, but what will this new freedom and lack of impending doom and crisis one after the other be like to live with?

Anna started to talk about that a little today. Before today she has been unwilling to venture into the unknown of the future with new lungs. She just felt like she had no idea yet what it will be like, but today I heard that Anna would like to go white water rafting.......... really? And for a moment she asked, will I want to go to work? She is dreaming about the future. A very good sign. I know that she is ready to get on with the show. May all of her dreams come true. And, may all of our dreams come true with out the constant yoke of CF and its yucky lung disease. And girls, please come and see mom and dad, sometimes............

The Transplant World Of Amazing People

I want to say thank you to Steve who left a comment on my tee shirt blog post. He is a CFer lung recipient 10 years out from surgery. He has a very good story to tell and over flows with effervescent joy. Thanks for your kind comments.

If others are interested go to http://www.climbingforkari.org/ to learn more about Steve and his journey.

Define Heaven

Day 27, awaiting the call for Anna's double lung transplant.

Yesterday Doug and I walked into a little bit of heaven, an orchard of peaches, plump, juicy and warm from the sun. Biting into as many as I wished, juice poured out with sweetness washing my chin with sticky yummyness. Yes, if there is a place that is heavenly it would include an orchard of peaches.

It is day 27 and tomorrow marks the 4 week mark since being on the list. Wendy has suggested that I say we are awaiting the call rather than waiting for the call. I think the difference is that waiting is more stagnant. Awaiting implies that there will be an anticipated event or result making it more dynamic. I am all for making this period more dynamic, rich and full of new moments of experience.

Being in the peach orchard yesterday gave me a new sense of moment and what a scenic heaven would look like. As I stood there, I knew what I wanted and needed to find pleasure and comfort in this life, in this moment. Warm juice filled fruit on the tree and the ability to share it with those that I love is truly heaven. Doug and I delighted in our country excursion to peach land together and I instantly thought about all of those others that would have loved that minute of tasty pleasure. I imagined my friends and family in ecstasy mmmming and ahhhhhing at the fruit delights. I had to call, "Anna, I am in heaven and I wish you were here." "Sorry, Mom, well, I'm not there." "Yes, but next year I am going to bring you here, you would love it so much!"

I am awaiting peach heaven with Anna and Sara and anyone who wants to join us breathing deeply and breathing in the warm fragrance of summer time in a California peach orchard.

Join Anna Banana's Bunch

Make custom t-shirts at CustomInk.com

Make custom t-shirts at CustomInk.com

There have been a lot of friends of Anna who have shown great support. It has uplifted her and been wonderful. When a tee shirt was mentioned many jumped on the idea. Many other transplant patients have done the same, rallying their supporters. So, with a lot of deliberation, Anna and Sara have designed a tee shirt with long or short sleeves to band Anna's supporters to hang as bananas with a mission.........

An announcement from Anna:

Well, we finally did it. We designed the shirts and they are available to order!

So here is the process...

I will place a bulk order Please EMAIL ME at A13@aol.com with your order.
In your email Please include:

Full Name
Address
Number of shirts (Long sleeve or Short Sleeve)
Sizes. (Long sleeve: S,M,L,XL,XXL) (Short Sleeve: YS,YM,YL,S,M,L,XL,XXL,XXXL)

There will be one set price of $25 that will cover both types of shirts as well as postage. I ask for you to please pay me through PayPal at A13@aol.com. To guarantee your order I ask for your payment to be received before the order is placed on AUGUST 30th. If you do not want to use paypal you can mail me a check but it must be in my hands before I place the order. Please let me know with your order that this is the best means for you and I will give you my address.
I do ask for the people who are local that they can pick up their shirts. Due to the size of the order the overall cost may vary, therefore if it turns out there are extra funds at the end, I will donate them to the United Network for Organ Sharing.

Directions for Paypal: Go to website HERE
The link should take you...
Send money Tab
Send to a13@aol.com
Select the Personal Tab for type of payment, Click on money being sent as "payment owed"
From your paypal account, if you have a balance or your bank account is connected there is no fee. If you use your CREDIT CARD, a ONE DOLLAR fee with be charged. If you choose to pay with a credit card, please click on the option for YOU to cover the fee.
Follow the rest of the directions and the transaction will be complete.

I hope you guys enjoy the shirts!

I can't wait to get your orders...

Mission Anna Banana's Bunch shirts commences: August 30, 2010!

My Knee Is Healing, My Mom Was Kneeling

Still day 24, waiting for the call for Anna's double lung transplant.

Today I am writing again because there is time. The day feels so open. Anna painted and I cooked lentil soup, spinach quiche and artichokes to last into the weekend. We picked up Jack in the Box for a high calorie lunch for Anna. Not a usual event, but she is needing to gain a few pounds after the almost blockage event last weekend and her having to lighten her diet. Now that that crisis is past she needs to eat. Tonight I will go home to Livermore.

There have been a lot of feelings this week that have come up having to do with my knee situation. The week began with me on both crutches and today, I am much better. Yesterday I had my stitches taken out and was given a knee "massage" with patella manipulations. Whoa, that was a little hard to take but it relaxed the muscles around my knee and I am walking much better. It has been hard to get a physical therapy appointment schedule set up but next week I will begin. I am already doing some exercises to work on flexibility and strength. I can not wait until my knee is functioning well again.

I have been walking so slowly, deliberately, step by step. It has reminded my of my mother. Mom had terrible arthritis in her knees. She was desperately afraid of falling, so combining the fear and the lack of stability, she did not move very fast at all. In fact a snail may have been able to run rings around her before she ever got where she wanted to go. Sorry, mom, a little sense of humor is needed when you are disabled. If only she could have had that sense of humor. It was all so serious.

As I have sat with my leg up, gimped around and waddled to and fro I have thought a lot about Mom. What would she have said if I told her that I decided to go ahead with knee surgery instantly and had it performed less than 24 hours from when the Dr. proclaimed its necessity? Mom would never have done such a thing. We wanted her to have surgery on her knees. We wanted her to get new knees to improve the quality of her life. She refused. And when asked why she would say, "I don't want you to have to take care of me, Robin. You have too much to do already." I think that she thought this was a way to be humble and to be with less ego, a goal for her spiritual self. Instead, I had to worry about her feebleness and her constant pain. She kneeled in homage to the pain at times by denying herself relief.

My poor dear mother did not know how to stand up and seize what she needed and accept that those around her loved her and would gladly help her heal. The surgery I had was not so bad. I am getting better, she could have gotten better too, with my help. It makes me sad that she did not take advantage of surgery for herself. She could have had a much better quality of life. Note to myself: if I need knee replacement, get it! No guilt allowed.

The sadness about mom and her knees makes me want to touch her and hug her. I miss her. It is not the suffering that I miss, it is the great person that she was. It is also the encouragement that she gave to Anna. She could not accept cheerleaders for herself but she loved to be a cheerleader for her children and grandchildren. She supported us all with a lot of love, maturity and insight. We all depended on her wisdom.

Looking through a journal of writings that she left behind for me, there is a passage about our struggle with CF and about the possibility of miracles we are hoping for today. It is dated February, 1983, Anna was admitted to the hospital in critical condition beginning our CF journey on my dad's birthday, January 29, 1983.

"I must record the following, this occurred during the night of Jan 30, when our precious baby lay gravely ill - I was awakened from my sleep by feelings of anguish. I felt great discomfort in my body. I tried to rise above this feeling - then slowly it faded and was replaced by this beautiful, calming sensation of peace - My eyes were closed and accompanying this feeling of calm that enveloped me I saw points of light like stars blink in and out - it was wonderful - out of this dark despair and fear for Anna's life I felt that she would live, that she would be well - I lay with this magical feeling for a long time - I was fully awake, but this beautiful calm remained with me - the telephone rang - I ran to answer - it was Robin - she had to talk, to cry, she was heavy with despair - and because of this experience I had just been through I was able to give to Robin the knowledge that Anna would be well, that she would live - I was given this huge gift of light at the moment most needed. Two weeks have gone by since then and many times I have felt great anguish over the sight of my precious daughter in such suffering over the critical illness of Anna - at times I felt despair - but was able to reconnect with this great insight that night of darkness and pain. May I be worthy of this insight. Shanti - shanti "

Oh Mom, even you in your self effacing way, pushing away healing and help for you could have this experience. Even you, a mature, wise, grounded woman could have a magical moment with seeing stars and having a warm glow in your heart. I am so glad that you could have the joy of feeling you had a special gift to give me. I remember that phone call I made on the pay phone in the hospital to my mother. I needed you then, Mom. You helped me. Thank you. And you were right, it all turned out and I know your blessed vision will continue to be true and the lungs will come, at the right time.........

Mom also wrote, April, 1983, "I became aware that we indeed carry within us, The Divinity." Yes mom, with strong hearts we can kneel with respect like you did to this energy. May each of us see it with humility and with courage, knowing we are all worthy of care and healing.

Waiting, Poolside

Day 24, waiting for the call for Anna's double lung transplant.

Every two weeks is cleaning day and another "Ana" enters our life. Ana Flores has been a part of our lives for many years. She is loving, dedicated, trustworthy and reliable. And she gives us one of the greatest gifts, a clean house. Grammie knew how hard it was for Anna to function, living on her own with all that she had to do to battle CF, so she paid for Ana to come to the rescue with her trusty mop. It has made such a difference for Anna. That tradition continues with a little inheritance left after Grammie passed.

Thanks Grammie, your kindness and love is remembered every day.

So what do we do on cleaning day? This is the third time that we went on vacation by the pool. We get no real summer vacation this year. We are working for Anna to stay alive and waiting for the big event. So to pretend for just an hour or two we go to Diana's Poolside Cafe. Yes, brunch on the deck in the sunshine, watching the glimmering blue waters of a hotel pool, palm trees waving in the breeze. This could be anywhere, the Bahamas, Hawaii, or California. We order something delicious, me being mindful of low calorie with dry toast, and an omelet with no cheese and Anna being ever mindful of her need of high calorie with eggs, bacon, pancakes and maple syrup. The one advantage of living with CF is you need to eat. The calorie needs are at least double what they are for a "normal" person. Anna in her cute 5'3" stature has been known to eat more than the largest man at the table with her Dr.'s orders. Lucky.... Many are the envious.

So, we make sure that we have a little time to play, and do not suffer much everyday. In fact we have not been really mentally suffering since Anna was finally listed 24 days ago, but that seems to be changing a bit. Sitting by the pool we realize that we do talk about the same thing, "so when do think it will happen?" The same question arises a couple of times a day, lately. We go over and over about our "feelings". We talk about it happening soon and wonder what soon means. Each of us has chosen a day that we think the call will come, like it was a game. We also talk about it being "not for a while" and sense that idea may be too unnerving, but it might be the best for us to keep in our minds as we cope with " the waiting." It is again beginning to feel like waiting, thus the creeping in of mental suffering.

In the Power of Two movie filming Marc asked about what it is like to be waiting. At the time, I think, I said, "to be able to wait you must just live. You do not want to regret your time waiting, so you live." And yes that works while you are distracted and involved in living events but when the whirlwind calms down and there are little distractions, the living begins to feel like waiting. Waiting is waiting, lets be honest. To wait means that you know there is something in the future otherwise why would you wait? If there was nothing in the future there would be no need to "wait". So if you wait then you are not living in the moment, you are living for the future. That is indeed a source of suffering. Seeking something that is not here now, wanting something that we do not have, "the call", causes us to be uncomfortable, feeling tight and nervous. But, guess what, "That is what we are doing......." we are waiting. That is the nature of our task. So, is it that the defining existence of"waiting" is that it is inherently infused with tendrils that grab the neck and heart and squeeze for recognition of its real nature? That must be so, otherwise, waiting would be being. Are you following this logic?

So, waiting is what it is, not being here. If we are waiting, then we are not fully enjoying the crystal clear turquoise pool water, the taste of the coffee and sweetness of the syrup. Waiting means that we are focused on that future event. What are we doing if we are not waiting. We are just two curly haired women, one with a plastic tube leading from her little nose to a container of liquid oxygen and one with a gray crutch, matching her gray hair, propped at her side, both enjoying dry toast and dripping maple syrup pancakes. A sorry lot....two gimps by the poolside.

Now, wait a minute, speaking of waiting..... That is all we are? If we are in the moment, that is all that we are, two gimpy women? No, no, no, as I say with a deep nasal French accent, and again, no, no, no. That is not all that we are. We are a daughter and a mother on vacation for a moment to enjoy life during the grueling wait for a double lung transplant. I like the "waiting" part. The waiting part is not just about suffering because it is in the future and not happening now. The waiting part is not just about the repeating conversation about "when". The waiting is the hope.

Without the waiting it would be really so much harder. Without the waiting there would be no possibility of Anna breathing deep or being able to dive into that gorgeous pool and come up for air between breaths. Waiting is not our enemy, it is our gift. We get to wait. We are so lucky.

The Ritual of The Holy Oil

Day number 22, waiting for the call for Anna's double lung transplant.

Rituals are funny things that we all have. Rituals are habits or ways we get things done and think about things. Think of all the ways that you do your life with conscious ritual from brushing your teeth to praying and being in a church. It seems to be such a human thing to create ritual. I am not sure if animals have rituals. They may have routines, but I think rituals are a little different. Rituals offer comfort and meaning to us. They can be simple or they can be loaded with profound meaning. It all depends on our intention. It is our intention and the meaning that we ascribe to our rituals that make them powerful in our life.

Today Anna and I did a little ritual with Judith's gift of blessing herbs, or our nummy nums. What was important is that we allowed the time we used to be focused. We ceremoniously offered the herbs to ourselves with conscious intention. We verbalized our gratitude and dedication of compassion out loud before placing the incense tasting herb balls on our tongues. As they dissolved we thought about the ending of suffering for many other people. It was a lovely moment. We can all find time and ways to create rituals to accent events in our lives. It is a good and balancing thing to do that reminds us of what truly matters while quieting the mind.

I have always loved some creative, spiritual ritual in my life. I have made up rituals for transitional times and in the context of women's groups as ways to connect to qualities that were needed at the time. I liked ritual so much that at one point I thought that I should be a minister so that would be my job. I became an interfaith chaplain to pursue this vocation. My training was through a small interfaith institute and the Clinical Pastoral Education program at Stanford Hospital and Lucille Packard Children's Hospital.

At the beginning of my year as a chaplain resident, I learned the true essence and power of ritual in a very unique and kind of funny way. Each chaplain resident took turns being on call for the weekends at both of the hospitals. Being on call meant that we went to every hospital death, calls to emergencies or requested visits by patients. I was reassured that during my first weekend, with no prior training, mind you, nothing would happen. All would be quiet. That was the farthest from the truth. It was trial by fire and the ritual queen had to step up.

We were authorized by the catholic priest to offer communion and the sacrament of the sick to patients. On the weekends if this was requested by patients we were to first find an on call priest to come to the bedside to offer the ritual, prayers and comfort. If no one was available to come, then we were to perform the ceremony. And, of course on that first weekend, for me, more than one request for the sacraments was made and no priest could be found. I had no training in this, let me repeat, I had no training for these specific rituals. I had to serve the patients by myself that weekend and figure this out.

I went into the chaplaincy office and found the "book of rituals" on the shelf. I leafed through to find, the holy sacrament of the sick. It could not be too hard to do this, all the prayers were there, I only had to read them. The other tool that I needed was the holy oil which I read, must be applied liberally. "Ok, but where is that oil kept?" I asked myself as I frantically looked high and low. I looked in cabinets and bookshelves and finally found a small jam jar with the holy oil. I encouraged myself, "Ok, Robin, you have done many rituals in your life you can do this." Off I went to the bedside in the step down unit from the ICU with my "how to" prayer book and jam jar of oil.

I introduced myself to the nurse, a woman sitting by the bedside and a very ill man laying in the bed. The nurse left and pulled the curtain to give us some privacy. The woman was a worried sister and told me how her brother was to have heart surgery. They were very frightened. The poor man had little animation. They were life long Catholics and wanted the sacrament in case the patient might die in surgery. This would save his soul. Oh boy, what a responsibility it was to deliver this comfort that I had never before performed.

I opened my prayer book and followed the instructions, reciting the prayers. When it came time to apply the holy oil I took the top off of the jar and slowly poured the oil on the top of his head. The oil dripped down onto his brow, over the top of his head and "liberally" bathed him in holiness. I did not know what in the heck I was doing, but boy was I going to give them a sacrament that would fill them with grace. Tears began to stream down from the eyes of the woman, her head bowed. The man looked relieved. I wiped the excess oil so that it would not run into his eyes, finished the prayers, said my good byes with good wishes, opened the curtain and departed. As I walked down the hall completing my duty as a chaplain all alone in that massive hospital filled with illness, patients suffering and people dieing I could not believe what I had just done. It felt good. The grace was there, it was palpable.

When the new week began I told the stories about the weekend. I shared how I could not find the oil until I found the jam jar. The other residents stared at me, "Jam jar?" they questioned. I was not supposed to use the jam jar. That was a reservoir of extra oil used to moisten the little felt pad in the tiny box that was to be used for the rituals. OMG, how mortifying, I made a salad out of that dear man's head! Those patients really got thier money's worth with my "liberal" application. No little cotton application from me. No one ever had such a sacrament as I delivered. The laughter lasted about all the way through my year as a resident. It "lightened" our load a bit.

What was important in this was yes, to laugh at our self when we are naive but also that the most important element in ritual is intention. It is not how well you follow the instructions but rather, are you able to offer good intention and an open heart. I think I did that and from the reaction of the patient and her sister it was successful. I just wonder if they are still thinking about that silly chaplain and her crazy sacrament or what..... I hope they were comforted. I think they were. I know I was comforted today as Anna and I made up our ritual with the blessing herbs. There were no specific instructions to follow, just what was in our hearts. That is what is important and the most powerful.

As for the vocation of being a minister? Well, I let that one go.....

Lama Gangha Nummy Nums.........

Day number 21, waiting for the call for Anna's double lung transplant.

Today Anna received a letter from a dear friend of mine.

Dear Anna,

You may not remember me, but I've known you since you were a very little girl. Today I'm thinking of your efforts to obtain a lung transplant and am sending you my hopes and very best wishes that your health insurance decides to cover it. You're on the prayer list at our Buddhist meditation center, so know that the community has you in their hearts and minds.

Enclosed are spiritual Dharma medicine pills, a few large, many small, that I've received from very high lamas called Rinpoches You can take them any way you wish - one or more at a time, chewed or not chewed, just as long as your mind is focused on love and compassion for yourself and the world, with the idea that all who are sick may be healed or, if you want to be more specific, that all who suffer from CF find a cure that liberates them from their illness. Be sure to include yourself in these thoughts.

With fond regards, Judith

In other words, Anna received some Lama Gangha nummy nums by mail. Yes, that is a lead into a story I must tell.

Anna was diagnosed with CF at 18 months old in a very dramatic way. She lay critically ill in ICU for 5 weeks on a ventilator. When she came home we had to learn how to care for her to regain her strength and how to battle and live with this disease. It was not only Anna that needed to recover from the traumatic time spent in ICU, it was also me and Doug. It was a grueling and very difficult time. It was a time when I felt that I had passed through a dark night of the soul. I was not interested in anything spiritual any more. All I cared about were the medical procedures, drugs and machines that kept Anna alive. I did not know if I would ever have a lighter, more spiritual side to myself again.

Before I had Anna I was a spiritual seeker. I devoured many books about mysticism and when I entered my masters program in East West Psychology at the California Institute of Integral Studies in San Francisco I was introduced to Buddhism. This became my path. I was able to design my master's program so that I could have experience with Buddhist practice as well as learn about other eastern religions and western psychology. I completed my course work just before Anna was born. Before she became so critically ill and diagnosed with CF I had begun my master's thesis research on American Buddhist families and discovered a small Tibetan Buddhist meditation center in Los Altos Hills.

During our period of recovery I received a phone call from the woman who oversaw the Buddhist center that was only a few miles from where we lived. She had heard from my mom about Anna's illness and diagnosis and called to ask, "There is a very wonderful Lama here now. Would it be alright if he said prayers for Anna and your family?" My starving spiritual soul immediately responded, "Oh, yes, thank you. And could we come to meet him?" The next day Anna and I went to meet a man who would become very important in our lives, Lama Gangha.

Not long after we met Lama Gangha we discovered that he shared the same birthday as Anna but was born 50 years prior, July 13, 1931 in Tibet. He escaped from Tibet during the Chinese occupation but not before he spent 12 years in solitary meditation practice. He was a very humble and kind man who missed his Tibet so much. He did not speak English so we used a few common words and sign language to communicate.

For weeks I brought Anna to see Lama Gangha at least twice per week. He did traditional healing pujas (rituals) for her while she sat in my lap. I could feel my empty vessel begin to fill back up with positive and hopeful energy and Anna seemed to always be up for the visit and ritual. Lama Gangha would do a laying on of hands healing along with the Tibetan prayers, and he would offer Anna herbs. These herbs came in the shape of little dark colored pills like the ones that Judith sent to Anna. We gave them the name "Lama Gangha nummy nums". Anna loved them and always treated the offering with a reserved respect and finished the healing time with a large hug for Lama Gangha. As time continued to pass we both grew stronger.

It was at this time that I also received another important and life changing gift. In the years before Anna was born, as I studied eastern spiritual teachers, I became enamored with Sathya Sai Baba in India. I had my own personal, quiet conversations with him. In these conversations I would ask that he magically manifest vibhuti (Hindu sacred ash) for me and place it next to my bedside so that I would know that magic exists in this world. Well, this never happened, no vibhuti by the bedside. It was just my little, funny, personal request of him. He is still known today as a powerful spiritual teacher who has siddhis (extraordinary powers) and performs miraculous things to happen on a regular basis. A little vibhuti for me seemed not much to ask for at that time.

One day at the Tibetan center following a session with Lama Gangha, Barbara, the center director told me of a visit to India. I asked, "When you went to India did you ever see Sai Baba?" Barbara looked deeply into my eyes. She must have seen my keen interest and said, "Oh yes. I saw Sai Baba. And, wait, I have something." Barbara abruptly left the room walking to the back of the house. She returned with a small package. "I have been keeping this for about 10 years now. I knew it was for someone. It is for you." Taken aback I opened my hand to receive a piece of paper that had been folded in a special way to hold a precious cargo. "What is it?" Barbara told me of being at Sai Baba's spiritual center and being present for dharshan, when a teacher comes out to be with his admirers and students. Just being in the presence of such high teachers is an honor and healing experience. Barbara recounted the moment when Sai Baba walked up to her and magically manifested ash and placed vibhuti in her hand. She knew it was to be kept as a gift for someone, someday, who would come into her life. And that someone was me.

Deep breath........ Sai Baba heard my silly request and at my darkest hour, when my soul was wounded through the trials of a sick child, he gave me this gift in such a mysterious way. Amazing. Too good to be true. Instantly my faith in goodness and light and miraculous events returned to my being. It is a gift that has stayed with me and sustains me when things are rough and tough. There must be another reality beyond this dense physical realm where high beings and evolved souls do dwell and listen to our hearts.

The last time that Anna was in the hospital in May I was quite scared by how sick she was becoming. She was very vulnerable. I remembered that I had kept a few Lama Gangha nummy nums after all of these years in my ritual belongings. I brought them to her. She immediately wanted to ingest them and their positive energy and she did, but she wanted to keep at least one for a day that she would need it the most, the day of her transplant. I have also been given other tiny pouches of vibhuti (not obtained in the same miraculous fashion as that from Barbara) from Sai Baba devotees over the years and included that in my gift to Anna that day. We decided to keep it for that special day as well.

Today I remembered that we want to keep these precious substances near by for the transplant event so I brought them with me to place in the "go to the hospital bag". And, today, more arrived from Judith. We are well supplied. I am feeling that serendipitous coming together of forces again with these corresponding happenings. It makes me wonder if the manifestation is near. Perhaps but we know that time is relative. For this time, now, thinking of these things and appreciating events of the past that have given us strength and hope helps us.

Lama Gangha continued to be in our lives for about 5 more years. He died in Tibet in 1988 just before Sara was born. We had some special time with him. It makes me smile remembering when we brought Lama Gangha to Anna's kindergarten class for the children to meet someone who came from such a far, far place. Anna was happy to introduce him to the class. In his ever loving sweetness he brought candies (another form of Lama Gangha nummy nums) to share with the children. I hope that some of them remember this kind man and how special it was to meet a Tibetan spiritual person of his humble yet enlightened stature. He is someone I will never forget and today feel that he is here comforting us yet again in this very critical time.

Honor Your Path

Day number 20, waiting for the call for Anna's double lung transplant.

Yesterday started off different than it ended for two women on the Stanford transplant list. Anna awoke with tell tale signs of an intestinal blockage. These nasty events haunt CFers and arise with little warning. Her abdomen was in pain and there were no bowel sounds up high. Uh oh, we thought it may be time for the hospital. And of course it was a Saturday and the way you are supposed to enter the hospital on the weekend is through the ER. Been there, done that, no thank you!

After communicating with the CF team, Anna began to gently cleanse and hopefully release this developing concrete wall in her colon, at home. In the past we have experienced disaster when these symptoms arose. As early afternoon came around it seemed that perhaps she was safe for the day as the hard abdominal knot seemed a bit softer. We resumed our plans and Anna continued her regimen. By early evening things were moving. Thank the goddess of poop! No, really, we all must thank the goddess of poop, where would any one of us be if that function was not functioning. Another thing we all take for granted but well understood in the CF world.

Doug, Sara, Lou and I went to my brother's house for a party. Yay, our plans did not have to change to an excursion into the bowels of the hospital, praying to the goddess of poop to come to Anna's rescue with all that that entails. Instead, we got to have a fun time at a lovely place with lovely people. Except for our dear Anna who made the best of it with her wonderful Linda.

While at the party we found out that Anna's friend, also on the transplant list at Stanford was called! Rhea has been waiting for about 5 1/2 months. Her day began as same old, same old, and then she got the call. In an instant it became the time. Wow. They had to travel from Sacramento to Stanford. But after a few hours the promise of new lungs on the 14th of August was dashed. It was what is called, a dry run. Before the evening was out the surgeons decided the lungs were not good enough. What a let down. All of the heroic souls that wait on the list know this may happen, but when it does, such a let down, heart breaking. Hopefully, next time.

This story is about a very specific life path with events that occur in the day to day of a person with CF and their family. But, we all have stories and paths equally capable of providing major challenge, disappointments and just what each of us need. We all have days when we wake up to one reality and it quickly changes into another. We do learn from observing each other's lives and knowing their stories but do we only compare ourselves or do we honor our own as we should? Would it make a difference if we truly honored our own with rituals of embrace?

Our path is our path. Simple but true. But can we do better in honoring our path? Do we compare ours with our friends and loved ones? "Yours is better than mine." "So glad that is not mine." "Can I change mine? I want to go another direction." Some people seem to have an easier path than others. But, it is really about what we do with ours that counts. It is about our personal relationship with our path that is our story. We can not write that story for others we can only write our own.

We must travel our own heroes journey filled with our own mistakes, life's gifts of challenge, surrounding sorrows, and our own self made triumphs. We must see what is in our personal path that is offering us an opportunity for success, learning and growth. We must honor our own path so much that we embrace what ever arises and use our experience and our foundation of self understanding to take each step with awareness and be proud of how we walk.

I am hoping that Rhea will embrace this disheartening part of her journey with transplant as just part of it, proud of herself and what she is doing and that she will rise out of her disappointment with new hope and readiness for the next call.

And for all of us, can we light a candle in our hearts in honor of our path? It is ours, the only thing that is truly ours, forever...... may we all walk with self respect and in beauty.

Savor The Bouquet

Day number 19, waiting for the call for Anna's double lung transplant...

This was a longer week in Sunnyvale. Sara needed a break so I have stayed until Saturday morning. Casey is going on a long bike ride, such a man, to Monterey today, amazing. Linda our dear one comes this afternoon to spend time and treatments with her friend. I will be back on Monday morning.

Doug and Roxy are with me. My sweeties fill the apartment with comfort, hugs, slurpy dog kisses, and my life. We miss our day to day life with each other, "normalcy", what ever that means. "How are you doing, Doug." "OK, it is hard." "I know it is" "But, we have to." "We are so lucky to be able to make this work. There is no other way." "It is our darling's life we are saving."

Some people in our situation have a really difficult circumstance. People travel long, long distances away from home and familiarity to live near the medical center that provides specialized care, like transplant. Families can be divided by expensive traveling, airplanes, and months and months. It is not that way for us. We have to be apart more than we would like but the benefit is that it brings it home how much we enjoy being together and how much we need each other. Doug is my ground. I need him to give me the stable earth, the sustaining love and support to do what I do. And Roxy, I just love her doggie-ness and I need her to hang in there until we can be together every day walking in the vineyards again.

My knee is getting annoying. Time for that trial and challenge to be over......... patience needed again for yet another thing. Darn virtues, they keep raising their heads, asking me to transcend and smooth out the rough edges of my soul. Sometimes the soul gets sore with all that polishing.

But, as my mother, Elaine, said in her writings........

These are experiences you must have to grow from and learn from before passing into transition. You must always ask what can I learn from this? This is a class room – What has this experience taught me? What have these lessons meant to you as you walk the path? Are you stronger, surer of your destiny as a soul? Think of this my dear one, think of this. Share only the joy with your loved ones. Keep the sorrows secret within your heart. Spread moments of joy – like a banquet before your beloved – sip of the nectar together savor the bouquet.

There was a lot to learn from Mom......

We Are Part Of The Story

Day number 18, waiting for Anna's call for a double lung transplant...

Ana and Isa have been our friends for 20 years now. We met them when they moved to Stanford University as students. They were 19 years old. I saw them as mentors to Anna. Here were two young women who had made it through all of their struggles and years battling CF with numerous hospital visits and they made it to Stanford, quite an accomplishment.

During one summer break we invited them to live with us until the Fall semester resumed school and their housing arrangements. They both took up residence in our smallest bedroom, a postage stamp size room. They slept in the same bed to save room. Being identical twins and used to the close quarters ever since pre-birth days it made sense that they could do this successfully. It was a very fun summer for both Anna and Sara. Ana and Isa became a part of our family.

All of the CF visitors that lived at our home did so with some precautions. Cross infection between CFers is a concern, but a manageable one. We asked Ana and Isa, Sandra and Mette to submit their sputum culture results to Anna's doctor for review. If they had an organism growing in their lungs that was particularly virulent and dangerous we would not have invited them to stay. As it turned out each of them had their own variety of pseudomonas as did Anna. At that time it was generally understood that once you were colonized with a strain of this destructive bug and it had not been eradicated, then it was yours. We were not worried that the other CFers were in our home but we did have other guidelines. Everyone did treatments in their own bedrooms. Anna was not allowed in their bedroom and they each had their own bathroom. We were very lucky to have three bathrooms, so that made this element work very well. We were also diligent about hand washing and generally being hygienic. It worked for us.

Anna was colonized with pseudomonas at 4 years old, long before these invitations. At that time it was not believed that aggressive treatment at the beginning of colonization was wise. There is a different approach to this now. But, this living arrangement did not change the cultures of any of these CF patients. They kept their own bugs and did not acquire new ones as a result of opening our house and hearts to them. Pseudomonas and the other nasty bugs that CFers get are generally acquired through the environment. They live everywhere. At some point you just do the best you can to be careful while setting a limit to this fear. You have to decide to just live your life not being afraid of every "no-see-um" that could be around every corner. Otherwise, you go nuts!

Now Ana and Isa are 38 years old! Ana has had two double lung transplants and Isa has had one. They are very well and living a full and exciting life. They have written a book about their lives, The Power of Two and gone on book tours. This year they have been filmed for a documentary about their lives, organ donation, transplant and an international call to action. The filming is now coming to an end and the editing is being done to prepare for next season's film festivals. As it turns out, since we have had a very close friendship and have shared the same struggle with CF, Anna and I appear in the evolution of the story.

It is really remarkable that this film would be made about transplant at this time while Anna is waiting on the list. Marc Smolowitz, the director, invited us to share our experience at this time on camera, alone, together and with Ana and Isa. Yesterday we did the filming. As I said in a previous post, this is not comfortable territory. It is difficult and very vulnerable to sit in front of a camera. We did it and it did seem to be OK. Our participation seems to make sense in the grand scheme of it all. Anna is in such a poignant and teachable time which coincides with the goals and objectives of the film. http://www.thepoweroftwomovie.com/

Wherever the Power of Two goes, so does sushi!

The one part missing for the film is Anna being wheeled down the hall into the O.R. smiling and waving to us and then hours later the surgeon emerging in his long white coat, name officially inscribed on his left pocket, telling us, "All is well, Anna will have a new life with new healthy lungs." So, let us put that in this order for a miracle too. It would be fitting wouldn't it?

Have you read Anna's blog too? http://annabananasvarietyshow.blogspot.com/

Sending Love To Sandra

This morning I received a message in broken English on facebook from Sandra in Barcellona, Spain.....

dear robin.
"How are you?.
Anna I know, I would like to know as this, if you need the courage to not be afraid ...
I can be her friend if she wants. I think I am better but I have bad days, my spirometry is 27% PV1 ... horrible ... but my lungs are still good and strong, I start taking more exercise goes wrong .... the loop, but I get tired less ...
transplantation is a different world to the cystic fibrosis ... I can hardly understand.
but you'll notice that it is a miracle of unconditional love.
I love you friend and pray for your daughter and your family.
I have really wanted to do meditation with you:)

I think it was the summer of 1993 that we met Sandra. She wrote to our local organization, CFRI wondering if there was a CF family that was willing to welcome her into their home for a short time so that she could fulfill her dream of coming to the U.S. Sandra was 20 years old and had cystic fibrosis. We had invited another international CFer to live with us a couple of years before so we agreed to do it again. The original letter Sandra sent was eloquent describing herself and her dream. I wrote back and received other equally inspiring letters and a date was set. Sandra was to live with us for one month in August.

As the date drew closer for Sandra's arrival I received a phone call, "Hello, this is Jose in Madrid. I am calling for Sandra." "Yes" I said, "Is everything OK?" Jose gave me unexpected news, "I am calling because I am the one who wrote the letters to you from Sandra. Before she arrives she wanted me to call and confirm everything and to let you know that she only speaks and writes in Spanish. She speaks no English." I stopped, the excitement about Sandra's upcoming arrival seemed to start slipping away into terror. I did not speak Spanish. Because I was born and grew up in California I had some Spanish in school and knew a few words and phrases like, commo esta, and adios, and hola..... but, I could not communicate with a newbie to the U.S.

Whoa, slow things down. My mind was racing, should we cancel this? Wait, no, it will be OK because after all we do live in California and there are plenty of people here who can help us. We decided to do this so, no stopping now. "Jose, let's go for it. We will find each other at baggage claim and we will figure it out." I can't believe that I did that, but I did. That was a wonderful and crazy month of August with the Spaniard from Barcellona.

The entire month both Sandra and I held our Spanish/English and English/Spanish translation books close but the major form of communication was sign language and love. Sandra was a firery, emotional, energetic, loving, and spiritual person. She was so grateful to come to the U.S. We did the usual tourist jaunts to the Golden Gate Bridge and the beach and Santa Cruz. It was fun and it worked. Where ever you go in California you can find someone who speaks Spanish so there was always an interpreter.

That was a very special summer as our Norwegian CF friend who had lived with us for a year, Mette came back for a quick visit too. August was also time for Camp. That year Anna, about 12 years old, and our international family members, Mette and Sandra went to CF Summer Camp together. By that time we had also recruited Ana and Isa Stenzel as part of our family. They spoke Spanish and promised that they would help Sandra at camp. They all had a ball.......

At one point in the visit Sandra's diabetes flaired and caused her trouble.Unlike when Mette lived with us with the wonderful health insurance from Norway that paid for everything, for her cystic fibrosis, IVs, enzymes, port flushes, everything, for some reason Sandra had no coverage from Spain in the U.S. She traveled here with a chronic illness and no medical insurance. She needed to see a CF specialist. As it turned out, a wonderful Fellow in the Stanford CF clinic spoke fluent Spanish and invited us to make an appointment. He took exquisite care of Sandra and gave her free samples of drugs and helped to stabilize her. There was no charge. That was a true healer and physician with a commitment to patient care and compassion. I will never forget that.

Sandra was also a spiritual seeker. It turned out that she had fallen in love with a spiritual teacher in India that I felt very close to as well. That was a special connection that seemed to bring meaning to how we found each other and felt so close to each other. Sandra visited again a few years later with her husband, Oscar. While she was with us that first summer all she could do was talk about Oscar. Sandra would sigh with his name and place her hands on her heart, she was so in love. When she visited the second time she also came with new lungs. Sandra was pretty ill with her lung disease when she so boldly first stepped foot on U.S. soil and entered our family. The second visit she was full of breath and life with her new lungs.

As you can read in her facebook post, Sandra is not doing as well any more. She has been in chronic rejection for a while now. This is truly sad for her. Transplant is not a cure. It does not mean that once they artfully place these lungs in you that that is forever. Most transplant recipients enter chronic rejection after a few years but not without a blast of breath and life and fulfillment like they never had before. Each transplant recipient has their own story of chronic illness and transplant life. No one knows how well they are going to do with their new lungs and how long they and their immune system will last. Time and survival is lengthening every year as the physicians and scientists learn more and more. Our Anna has a great shot at a long run with her new lungs when they finally arrive.

I am telling the story of Sandra to let you know that this disease is experienced around the world and the miracle of transplant is found around the world too. It is also not for the faint of heart. It takes courage and tenacity and gumption. Sandra has gumption. She seized her dream to come here and nothing was stopping her, no language barrier, or no lack of medical insurance. Sounds crazy, and it was, but her spirit and her willingness to live and squeeze every drop out of life is so inspiring. We send our love to Sandra.

Sandra, you are a jewel.