A Canoe Ride On A Sunday Morning

I have been trying to observe this experience closely. I am watching the thoughts and stories cross my mind about waiting. Sometimes people might say, well, if you just stop thinking about it, then it will happen. Do you really think so? and.... Do you really think that it is possible to not think about this all of the time?

There have been times when I "forgot" about it. Like in the movies when we were absorbed into the story, like when I day dream about "other things". And guess what? Yep, during those times, even though I did not think about it, Anna did not get her call. Makes me think, this has nothing to do with what ever we think or do. It is all about going for the ride. Part of the ride is the anxiety and wishing for it to end. Observe that. This mirror of the mind shows us how we think and process this type of situation.

We have seen ourselves watching our mind streams. It is funny some times how we have moments when we can not stand it any more and moments when it is OK. We have seen times when we have noticed emotions, joy and sadness, triumph and frustration. We have also watched ourselves entertain our minds with humor and the creation of funny connections and signs to fill the air with something to do to pass the time with a positive flair. It is all our minds and our thoughts. Meanwhile the world goes round and the intricate web that connects Anna with her donor can not be seen by us but is it influenced by our willingness? That is a big question.

When you stop to observe this mind stuff it does give you a moment to reflect on the awe inspiring process of it all. When you look at the stream of thoughts floating by you realize that is what they are, just a part of the stream, part of the river. So, we have a choice. We can flow or get entangled with the thoughts that flow along with us whether we want them there or not.

Connected to this are the wonderings about two friends of Anna's on the list. Last week Steve received his lungs with only two weeks of waiting. Hardly a flow on the river from our definition, but it was his flow. He had his transplant when it was karmically the right time for him and his donor. Then there is another friend of Anna's who has been on the list for 8 months. She had one dry run but no viable lungs for her. Last week at her clinic visit it turns out that her lungs have improved so much that she is taking a leave from the list. So interesting. It just has not been her time. Each person has their own story held with a mysterious wrapping. Both of these cases have given Anna more confidence that the process works and has its own justice. It is part of the unseen order that is in nature. It unfolds as it should. There is always spring, summer, fall and winter. There is a pattern, there is a web that we are a part of, collectively and individually. This is what makes life so interesting, intriguing, scary at times, and wonderous. This is what faith is, believing in the flow.......

So, new visualization, I am in a canoe, the water is flowing, the scenery is beautiful, autumn colors splash in the trees, a soft light fills the sky, all is well, we are just a tiny part of this amazing journey through our universe. Peace to my universe. Peace to your universe.

Calm The Mind, Delight The Heart

His Holiness the 14th Dalai Lama
Visits Ronald McDonald House, Stanford
10-13-10

May the peace from these blessings fill hearts and remove all obstacles.
For the benefit of all beings.

A Jewish Blessing

Day 93 or exactly 3 months on the list..........

Today Anna had a CF clinic appointment. The last one was 6 weeks ago. We really did not think she would be going to this one but there we were. Nothing has changed. All her numbers have stayed stable. She is doing great and they are proud of her. We asked Dr. Dhillon (a CF physician and a lung transplant physician rolled into one) if there had been activity around Anna's name. He said that she has been discussed for lungs recently, he did not say how many times but it certainly seemed more than once. The main issue that he said was of concern with the lung offerings was the size. There has not been a perfect match yet. He said that when a patient is being discussed regularly it means that it will be soon. Now there is that word again, soon, such a relative term. Even so he was encouraging. Anna is getting excited. Since her friend Steve got his lungs yesterday she has gotten very excited and more ready than ever. Ready to get on with the show.

Because we have had some very special spiritual experiences during this journey Anna's interest in the experience of healing blessings and prayers has been peeked. One type of blessing that she felt that she wanted prior to the transplant was a Jewish Blessing. She has a lovely prayer quilt from her friend Courtney's prayer group, a special and personal blessing from the Dalai Lama, all of the prayers from everyone out there offering up to their God or spirit energy for Anna but because of her heritage Anna really also wanted a personal Jewish blessing.

When she first requested this I immediately thought of my friend, Chaplain Bruce Feldstein at Stanford. Bruce is a medical doctor turned Jewish Chaplain who I served with 10 years ago at Stanford. He is a wonderful and very healing man. Well of course as our days go, right after the clinic visit as we walked down the hall there was Bruce! I had not seen him for a year. We told him of Anna's desire and he took us to a quiet waiting room and sung the most beautiful Jewish blessing prayer for Anna. He invoked the archangels to give her loving kindness, strength, light and healing for this journey. Bruce also prayed for the transplant in a way that honored the unfolding of life's events and the gratitude that will come through intersecting with someone's life who has the compassion to donate organs to some one who needs them to live. It was sweet and beautiful and a completion in a sense. Ask and it shall be given. As a blessings collector, Anna has collected a wonderful bunch.

So many blessings, so much good energy. We can feel it all and are just excited. We are letting it flow and letting it go.............

P.S. transplant number 6 for October at Stanford is being performed at this moment. Amazing, 6! We are on a roll........ Anna would love to be 7. We shall see............

A Shared Journey

Day 92 going with the flow and awaiting the perfect match for Anna......

Tonight I drove to Stanford Hospital to say hello to friends whose dearest Steve was in surgery for a lung transplant. We have known this family many years, 20 + years. We were all involved in CFRI and Anna met Steve and Stephanie through CF Camp.

It was one month ago when Anna had her last pretransplant clinic appointment that we saw them. Steve who has CF was being evaluated for a transplant. Seeing him concerned and worried us. It just shows that you never know about these things. Steve has been on the list for only two weeks and his perfect match was made yesterday. As I am writing this blog he is in the final stages of his surgery. Last night it was thought his surgery would be at 2AM but it was pushed off to 2:30PM today. He is the 5th lung transplant recipient this month. Who would have ever thought that he would be transplanted before Anna? But, we are thrilled and relieved for him.

It was wonderful to sit in the waiting room with his mom, Barbara, wife, Stephanie and his best friend and sister. How exciting to think of a new life. He is 41 and he and his wife have a 3 month old baby. He now will have the energy to be a dad and live to see his child grow. So amazing, no more crappy lungs.

We dreamt about the next Transplant Olympics. In healthier days Steve was a swimmer as Anna was. I recruited Anna into this without her there (sorry Anna, an overly aggressive Mom) but we thought we would go together and watch them swim and maybe Ana and Isa and Anna and Steve could form a relay team to compete together. These ideas make you giddy. There is so much hope and possibility in the transplant arena. Yes, there are still dangers and complications and a bunch of yucky stuff our dear and courageous loved ones must endure but the good stuff is so close we can all taste it.

Sharing the journey is very special. We are rooting for them. Go Steve........... and we will continue to let it flow and let it go...........

Be Like A Dog

Day 91 or 13 weeks awaiting the call for Anna's double lung transplant....

So October 23 has come and gone. Our great math magic for predicting transplants seems to have failed. Oh Hummmmmmm. It is back to living in the moment and each day as it comes. Makes you wish you were a dog. There are a number of dogs in Anna Banana's Bunch and Roxy is one of them. You know life as a dog has great advantages. Roxy does not have a clue that we are waiting. She is waiting with us but you know she does not care. All she cares about is wagging her tail, kissing our faces and going for a walk, with a few treats thrown in between. Life as a dog is lived being present, not preoccupied with concern or worry. So it is time to live more like my friend Roxy.

Actually we now have no more future predictions to test out. That is a relief. We will now move forward with our tongue in our cheek our sense of humor attached some where in our minds and our tail wagging while we seek out signs, signs every where signs. Just for fun of course.

And here is an update on the goat yogurt, not sure at this point if it is a sign. I have now consumed 21 containers in this apartment. More has been eaten other places but what goes on here is what is of importance as I gather the vital statistics of this waiting period after 13 weeks have now passed.

And, special thanks to all of Anna's Banana Bunchers. The photos are wonderful as a collage. It makes Anna so happy. So cool to see so many friends and family being so supportive.

So, that is the update for now. All is well and we are waiting. Oh, by the way, there have been 3 lung transplants at Stanford this month with two more happening tonight as I write. Sara is on her way now to get a consent form signed so the old lungs can be researched in the CF Lab. Amazing, all you have to do is be like a dog, be patient, live in the now and lung transplants happen. 5 for this month is a lot. Maybe Anna's will be soon. It requires a match, the perfect match at the perfect time. The truth is no one knows when that will be. It is a cosmic secret never to be revealed until it is time. We will wait. It will happen. There have been enough signs to know that much at least............

Grandma Cody

Day 88....

Tomorrow is October 23. Anna and I have joked about that day as perhaps, "the day" for the call. We need to find the silly and ridiculous in our situation to be light and to pass the days of waiting. Sometimes it all is quite silly. But, I want to share another thing about what tomorrow really is. It would have been my grandmother Cody's 113th birthday. Yes, kidding aside, it is significant that it is her 113th as those numbers do seem to be a recurring part of our serendipitous experience, but also that she was part of our female lineage and an interesting and courageous woman.

Last weekend while I was home in Livermore I decided to help Doug organize more of the garage. We moved here last December 30 and there is still some unpacking and organizing to do. Shortly after we moved in Anna continued her decline, the weather was terrible, the yard needed to be landscaped and we needed to feel settled in so some things have been left undone. While going through boxes on a shelf in the garage, that is to be my art studio one day, I found somethings I did not realize that I had. It may have been that Greg, my brother, had this box with albums from our dad and mom and left it with me, but I am not sure. I had not gone through it. I thought I had already seen all of the photos that they left behind. As I leafed through the photos and pages I found a couple of things that I had been looking for. One was the date of my grandmother's birth. In my father's handwriting on a genealogy form it was written as Oct. 23, 1897. I knew she always lied about her age as she was very concerned about becoming old. Now I realized it would have been her 113th birthday this weekend. The second was an address. Mom saved three letters of correspondence with a cousin's wife in Chicago. I thought I lost all threads of connection with that side of the family. I was thrilled to find a way to contact some member of her family of origin.

I also found some old photos of mom and her mother and father that I may have seen years ago, but I am not sure. Upon finding the letters I went straight to my computer to see if I could also find a phone number. I called the lost cousin and left a message. The next day she returned my call. It was very special, really, to find this lost piece of my mother. She left behind poems and writings about her early life in Chicago and San Francisco that gave me the understandings I had been looking for for such a long time as to why she had such a difficult childhood. Right after her death in 2009 I did some research in old Chicago Tribune newspapers and discovered a lot of information that filled in between the lines. With this information I spent hours and hours reconstructing her early life story and writing a 65 page volume. I shared some of the details with my new found cousin and she shared the perspective that came from her family's side of the story.

What I was told was familiar to me. It is what I remember mom telling me, Cody was never really accepted by her husband's family. She was also blamed for the breakup of her marriage. From the perspective of my grandfather's familiy she took the children away to San Francisco selfishly. From what I understand there was another reason. As I talked with this cousin on the phone I realized that an unflattering judgment about my grandmother that was formed seventy years ago was still alive and part of the family lore. It needed to be enlightened and corrected. What was so interesting about this was that I realized that never at any time was there anyone who could stand up for Cody as a witness to all that she endured, defending and supporting her. She had to do this all on her own. The strength of my grandmother and the courage it took to face her challenges at the time of the Great Depression is very inspiring.

I sent the story as seen from my mother's eyes and from my interpretation to the Chicago cousin. I hope that she is reading it and understanding that shiksa that married Frank in 1919 during the time of the roaring twenties when life was fun and glamorous. My mother was born in 1923 during a time of great affluence. She was loved by both her mother and father and lived a rich life in a vibrant Jewish family with a protestant mother. That spelled trouble from the beginning. When the Depression hit. the family fortune was lost. The power of the money that created the bond between my grandparents was gone. Years of poverty and instability, moving from place to place wore out any semblance of togetherness until there was nothing left between Cody and Frank. Cody was asked to raise her two children in a terrible tenement house in the south side of Chicago. It was humiliating and terrible. Finally when my mother was the age of 14 my grandmother took her two children and moved back to San Francisco for good near her sister and parents. She did not take them away because she was a selfish woman, she took them because she was a hurt and broken woman who wanted a better life for her and her children. My grandfather was also a broken man who never could reconstruct a stable and honest life for himself and his family.

So, tomorrow it would have been Cody's 113th birthday. Mom would have remembered her mom and sometimes on October 23 she would go to the cemetery to honor her. Now that mom is not here I will remember my grandmother. Now, perhaps since I was able to tell her side of the story to a member of the family who had only known another side, she will now see my grandmother in a new light and there will be some healing and some vindication for her. How wonderful to think of that, to think that the telling of the story after all of these years could create some healing about the memory of my grandmother's life. What a gift that is to me. So, October 23, 2010 is a very special birthday. "Grandma, I told them. Carol heard me."

this is something that my mother left behind that she wrote about her mother during their trying times......

"Anyone who suffered my mother took into her heart. I remember two very classic examples of her care for others, first during the Depression and we were living in Chicago at the time in a very large old apartment hotel. It was extremely ugly and had its share of cockroaches and rats, in fact it was a slum, even though it did not seem that way to me. Any way, my story, old people who had very little to eat used to roam through the halls and knock on the doors for food - one very old shabby lady used to come to our door - her name was Bessie Wobedo (that is what I remember her name to be.) She was so unkempt and I remember drooled from the side of her mouth and had stringy white hair and wore a frayed and unclean black coat. Mother would invite her in and share food that we had with her. Mother sensed that I was quite uncomfortable entertaining this lady and she would tell me how sorry we should be for poor old people and she would always welcome Bessie, as though she were always glad to see her. I hope that now I could do the same as well, but back then it was very hard for me to understand her compassion for others. She gave of her time to many others in this apartment building at this time but her heart was very distressed because we had to live there and she so wanted us to have a better life."

Cody in the 1950'5

Coral Lucille Thomas, "Cody" (named after Buffalo Bill who bounced her on his knee) was born in Butte, Montana, October 23, 1987 and was my grandmother, Anna and Sara's great grandmother. Happy 113th birthday, you are in my heart and my memory.

It Must Be A Sign!

His Holiness making an appearance.

Amazing what you can cook up with just cheese and bread.......

Day 86, awaiting the call for Anna's double lung transplant while swimming in signs.......

Today's discussions centered around signs. Anna and I are getting so good at recognizing signs that we think we may have a new profession. We can be sign finders and sign creators. If you are having a hard time, are a little weary, just want to get on with the show, or just want to be in the know then call us, The Holy Cannoli Sign Professionals! We are expensive, we charge by the hour, but we are good at it.

At dinner time tonight we worked on perfecting the famous sign, the Holy Cheesus but a Buddhist version. Pretty good likeness, hey? His Holiness's appearance on Anna's grilled cheese is most definitely a sign, a sign that we know our signs. (and yes we watch Glee.)

We found so many signs today for why this weekend the transplant just might happen. I can list them:
• the date, the 23rd is definitely a sign,
instead of 13 which is Anna's birthday, 23 would signify her 2nd birthday....
23 is equal to 13 + 10 or Anna's birthday plus Casey's birthday......
2+3 equals 5 or, it has been 5 months out of the hospital
Anna's grandmother was born in 1923
Most significantly, 10-23 would have been Anna's great grandmother's 113th birthday if she was still alive. Remember the significance of that 13!
When we were in the book store, the cards with sayings about each day of the month was missing the 23! The absence of the 23 must have been a sign!

There are more signs every where!
• It is also a full moon this weekend...
• It is going to rain so there will be rainbows, definite signs of special events.........
• All of the CF staff is gone at the CFF conference, no one is around so of course that is a sign too.
• Sara is off duty from attending transplants for her job this weekend so is available and the best weekend for her, very much a sign......
• Ana, Isa, and Linda are here, a necessary sign........
• and there is a special sign that is secret, we can not tell............

You see, we are masters at sign finding and creating. Don't you want us to help you with your signs? Everyone has them, you just have to become more aware of them or hire professionals like us.

Are we in loopy land today? You bet cha.........

Another Day on the List

His Holiness The 14th Dalai Lama Blessing Children
Ronald McDonald House, Stanford
10-13-10

Day 84.....

I got a sneak peek with one photo released to me of our incredible day last week. Now I hear that the rest of the photos will not be released until Nov. 1. I know not why but we will wait. Until then here is a little window into our incredible fortune last Wednesday when we got to witness and be a part of this wonderful event.

With a week like we had we are not allowed to say we are bored for another 20 years or so. To be fair, life just has not been boring on the transplant list. We marvel at how our life events have unfolded. In a few days we went from meeting one of the most famous and sought after teachers in the world to, for the first time, seeing ourselves in a movie that will be on the silver screen in a theater near you some time next year. A little too much excitement for a sick young woman having a hard time breathing and her momma sitting on the edge of life, waiting for a lung transplant.

And now, because of all of this we know that we want to put any available energy that we may have toward promoting and supporting the Power of Two film. That is the project that we must adopt. If there is any way we can help with the fund raising and raising awareness about organ donation we want to participate in that. It is the cause of the moment. It is vital to our lives and we know to many others and in fact, could be to anyone anywhere around the world. It is a universal cause filled with the magic of medical miracles, the ending of suffering and the need for compassion and comfort.

Is It Real Life Or Is It A Movie?

Years Ago
The Modlin family with Isa Stenzel and Ana Stenzel behind the camera.....

Day 83........

Yesterday we went to the first cut showing and fund raiser for The Power of Two movie. It was held at the new VIZ theater in Japantown in San Francisco. How exciting! I must say that we all were not completely prepared for how integrally Anna and our family were portrayed in the film. It was a bit overwhelming and took a while to digest. We were watching our life on the big screen in a movie theater! So strange.

Over all we were so impressed with the beautiful and professional quality of the film. It will be a feature film poised for film festivals, the TV and perhaps an Oscar? It is not yet completed. They have another month of editing to do so it is going to be so amazing when it is done. As Anna says, it is going to kick bootay!

Ana and Isa are so engaging, articulate and fun to watch. Their message is poignant and universal. They were courageous children and teens who met their challenges battling CF with creativity and determination. Their lives as adults have shown them able to beat the odds with miraculous events occuring in their lives. It is very inspiring to hear their story, in and of itself. The movie also discusses the international need for organ donation and the power of transplantation. It is riveting and emotionally engaging.

Anna Modlin plays herself. She is fully transparent with what it is like to live with this disease choking her and stealing her breath. It shows CF out of the closet. I am so proud of her willingness to share her life pre-transplant with the world. It will help people to understand CF, lung disease and the experience of waiting for transplant. I play myself too. I am the mother by her side who won't give up. We are fighting for her life together. The movie focuses on our role together as another power of two, but, everyone is really involved in this struggle. Doug, Sara and Casey are also equal partners in this too. You will not see them on the screen in the film but we are all playing necessary parts at this time and always have as we meet the challenges of CF.

The feedback was tremendous. I did not quite know how to let this all in. It is a bit daunting to see yourself on the screen for the first time while in the company of so many. But, this is about the issue, not me. This is about what it takes to participate in the miracle of transplant. It is a test of the metal. So, once again, I dedicate all of this to the mothers, fathers, sisters, brothers, friends and lovers who are by the side of someone they love fighting for life and hoping for a miracle. Anna represents the patient on the list, all of the patients on the list. May a miracle come for all of them.

If you want to be a part of this there are two things that you can do. One, my friend, Wendy, just emailed me to tell me she finally registered officially as an organ donor. You can do this too, easily as you sit there reading this. Go to Donate Life (click) and find out how in your area. Now that you have stopped putting that off, talk with your family and friends. Discuss the hard parts of "if I should die". We all will, you know. Some of us will be able to leave this life with the lucky opportunity to offer life to others upon our passing. This was even true for my 85 year old mother whose skin was donated to burn victims upon her death. This is more likely to happen if you sign up as a donor and make your wishes known to your loved ones. Encourage the important people in your life to do the same.

The other thing you can do is make a donation while you are still here! The Power of Two movie is in need of more financial support to complete the film They still need about $300,000. If everyone chips in a bit it will make a huge difference. Or if you or someone you know wants to make a major contribution to ensuring the distribution of this powerful film then please do. All donations are tax deductible. Go to The Power of Two Movie (click) and then click on the donate button.

Thank you, Thank you, Thank you.................

Hearing the Song of the Ancients

Day 80.....

Today we rested and integrated. Our visit with His Holiness was so powerful, the afterglow stayed with us all day. It was as if we were still with a foot in another universe. Many times we said to each other, "did that happen?" Yes, it did it was real and so very special. The day's conversations included philosophical discourse and trying to share what it all meant.

Most of all I think one of the greatest teachings was how everything is interconnected and how the movement of our lives toward a transition can be seen all around us. The other thing I told Anna that is very, very important is even though we are in this critical time with her health on the edge there is still this magic. As His Holiness said, it is sad when there is illness but there are so many facets to look at in one's life and find what to be grateful for and what is truly beautiful. This experience is a bit of everything. We experience danger, fear, hope, magic, sadness, laughter, love, friendship, loss, pain, confusion and clarity of thought.

When you have serious illness threatening your life you are challenged. When you are the mother of a child turned adult who has fought disease all her life with you always at her side you are challenged. When the edge of the precipice is dangerously under your feet and the time comes after so many years of sickness and care giving and you are so very tired of it all, you begin to hear the ancients in your bones. They begin to sing to you and beckon you to listen deeper and deeper. The ancients know how you feel. They are the ones who through all the ages of time have fought illness and loved and cared and made beds and cooked soup and held hands.

My experience meeting the Dalai Lama yesterday helped me to hear these ancients and the "mothers of all time" more clearly. Being in his presence and touching his hand, I heard them sing to me through my bones. It is a song of longing and a song of sorrow with a sweetness that lulls you into a peaceful acceptance of what is. The song wraps you in wise threads that strum a familiar human melody about a path of understanding. All you need is to listen.

Touching His Holiness

It is the ancient place where the earth beckons us
It overflows with an ancient ooze
It is the light
It is the heat from the center
It is the ancient place of the mothers of all time
Lift the boulder that hides the way
Lighten the boulder that resides in me
Lift the burden in my bones
Release this tight hold I have on the edge of the precipice, fearing our slip
Let us drop, let me feel the release
No fear, there is nothing to hold on to
Let me travel deep into this core where the spirit heart is beating, never stopping
The drum beat of the earth mother sounding her cry
Where the song of the ancients is humming
Melt away, melt away this burden
Incinerate all vestiges of restraint, all chains that bind me to a place of unbecoming
Let me burst forth with a newness that knows this song of the ancients
And the mothers of all time
Deep in my bones
Reaching your hand to me, reaching my hand to you
All benefits must forever benefit all

The Magical Mystery Tour

Day 79, awaiting the call for Anna's double lung transplant...

Today was truly a remarkable day. It is 10-13-10, very auspicious, of course, and Anna and I received an amazing gift this afternoon. We both had the great honor to have an audience with and personal blessing from His Holiness, the Dalai Lama.

It is truly remarkable how we were given this unusual opportunity. Five years ago I organized and implemented a healing flags project for the Ronald McDonald House that was a great success. This Spring I received a call that the House wanted to do another such project because His Holiness was coming for a visit to bless the children. I was only able to help with getting this project started because of not having any time since I am helping Anna with treatments, etc. Two other wonderful women, Bri and Mary and I am sure, others, took the ball and made it happen. They did a wonderful job. On Friday we hung the Flags of Hope.

Because I was not able to do much to help with the project I was unsure if I and Anna would be able participate in the event. We did "hope" so. It seemed that we could attend but yesterday morning we discovered that we were not going to be able to. There was only enough space for the residents and the RMH donors to be present for the blessings. Of course they could not accommodate everyone into this event. Many people were disappointed, including us. I could tell this was a very disappointing blow to Anna. The rest of the day, yesterday, was kind of blah. With our wish unfulfilled to have an audience with His Holiness we did our best to let it go and move on. Even though we both had a feeling that it would happen it was not going to and we had to accept it. We did, but then, at 7PM last night I received a call, the Executive Director, Honey called to say that she was going to break the rules and we were invited. She wanted to give us the special gift to come because, "I want Anna to know that people care about her, even people whom she does not know. Because she is so ill I want her to have the chance to be there and to have everything she needs to be able to get her lungs." Wow, how kind and compassionate. I was speechless. I did not expect this to happen after this morning's no. It was a miracle....... The magic mo jo was still happening........

The way this happened, to hope for months that we could go to this event and then not being able to go because of a huge hurtle and obstacle we could do nothing about, that was instantly dissolved by Honey's phone call was astonishing. It felt that we belonged there. It was meant to be. It was such a gift. It was so special to receive that call from Honey last night that we dared to believe it. I knew that Anna desperately wanted to see the Dalai Lama. She so wanted to receive his blessing before the transplant. Ask and ye shall receive, an invitation to attend, imagine that.

We were told that he was coming to bless the children and not the adults so it was important for Anna to realize this and know just being in his presence was a blessing. We understood this. We understood it was a miraculous gift that we were even able to attend. We did not take this lightly. We knew the magnitude of fortune that we had been given to be able to meet with him.

We arrived at 1PM. He was scheduled to arrive at 2PM but as it turned out he was over an hour late. We enjoyed being with the House residents, singing the songs of Nancy Cassidy as she strummed her guitar and talking with the lung recipient's mother that I met last Friday. Then, His Holiness arrived. He entered the room reaching out to the children asking some what ailed them. He stopped, in front of us sat an Indian man and his little son. They told him that they gave up having his liver surgery today so that they could have this opportunity to see him. The surgeons agreed and rescheduled the surgery for tomorrow. He spent some time talking with this couple and offering some of his knowledge of Tibetan medicine.

His Holiness was introduced and gave a short talk to us all about the sadness of children who have such serious illnesses. He said that this may truly be sad but there are other aspects, one being the beautiful facility we all have to receive care from. Things are not all bad, there is always another side. At one part of the talk he turned to talk to our side of the room. We were sitting within six feet of him on his right side. For a time he looked right into Anna and my eyes talking directly to us.

Following the talk His Holiness decided to offer his blessings to the children. Instead of the "planned" process of each child walking up to him he went up to them. Anna stood up and moved into the space. His Holiness was offering blessings and placing white scarves, kathas, around the necks of the children. When he came to Anna he stopped, took her hands in his and looked directly into her eyes transmitting an energy that took her by surprise. He then came to me offering his hand which I took into mine. It was so sweet and made me melt.

It was all so surreal. Here we were in the presence of the Dalai Lama! Here we were receiving blessings from the Dalai Lama! Wow, so special. At the same time it felt ordinary as if it was so natural that this was happening. We know this is not a common place event. A father that we met while waiting was from Nepal. He told us with his blind son by his side that this type of audience never happens in India and Nepal. This was very auspicious. We know this and we are so grateful. The Flags of Hope did their magic.

This evening all we can do is integrate the power of the energy and blessings that we received. It was so powerful. Anna says that she is "zapped". She knows that she needed this blessing and healing energy that he transmitted to her prior to her surgery. She now feels ready (for transplant), more than ever before. The depth of this man and his spiritual power is so remarkable. We are humbled and in awe that this happened at all. It is one of the many miraculous, serendipitous and magical events and circumstances that have come to us during this pre-transplant experience. All I can call it for now is the Magical Mystery Tour.........

(We were not allowed to have our cameras but there were professional photographers taking many photos. When the photos are released we will post them......)

Numbers and Memories

Secrets
By, Bill Dougherty, Dad

Day 77 awaiting the call for Anna's double lung transplant.....

10-10-10 has passed us by. What Anna thought would be a cool date for her new lungs to appear was a cool date for another lung recipient at Stanford yesterday. Day 77 is pretty cool of a number too but this day is nearly gone. I know the day that she does get the call will be the coolest day ever, I just do not know what day that is to be. I can not guess.

I remember as my mother was dying I looked at the calendar on the hospital wall. It said April 11. I thought, "of course!". My father died on 11-13. It seemed poetic that mom would die on 4-11 (please note that 4 is equal to the 13 or 1+3 in my dad's date). They were the opposite, 4-11 and 11-4, but it karmicly made sense in a strange only I can make these things up way. Mom just wanted to be with Dad. She missed him so much. I do not know what special number Anna's transplant date will be. Maybe it won't be special at all until we decide that it is and how could we not think that any date would be special?

Speaking of Dad, my dad and I studied some numerology together many years ago. He was so willing to explore different ideas and meanings to life. Dad was quite special. He dove into an exploration of metaphysics and spirituality with an intelligence and openness that allowed us to have fun and deep and meaningful discussions about life. Eventually he decided that all of that stuff was silly and not right for him but he did let himself have a fanciful imagination with his daughter for a while. Dad really was grounded most of all. He was a man of the earth and plants. He had a special way with gardens and growing and was connected to nature. He was also a fabulous artist and sculptor.

Coming up next month will be the 13th anniversary of Dad's death on 11-13. There are those numbers again. The number 13 is significant for Anna too as her birthday was on the 13th. It has been a long time since I spent time with Dad but he is forever with me in my heart and mind. I have conversations with him when I question what I am doing in the garden. We go over the problem and he tells me what to do, most of the time. He was such a loving and supportive father, I am so very lucky to have had him for so many years in my life. If there are other places that spirits go when the body dies I wonder if he is helping to decide the best numerology for Anna's life giving gift. I have no idea on what this number will be but what ever it is, indeed as I have already said, it will be numerologically significant to us.

It would not be here if not to walk upon

this mystery that is earth
It would not support you
or take you on the journey to the end of time
For time ends here
It would not matter if not part of
the Plan
Remember
as above
so below
Energies from the soul to the heart
Spirit in matter
Roots in the sand
Branches in the sky
These many earth thoughts shrieking to be born
Part of the planet we walk upon
part of the matter we all are
Try not to escape this earth being
Your free will feels the pull of earth’s energy below
Your soul will feed on the energy of power above
They will meet and synchronize and coalesce into one becoming
But fires burn slowly
Wait and learn and understand this spirit in matter
Earths song

By, Elayne Dougherty, Mom

Flags of Hope

Day 76, awaiting Anna's successful double lung transplant.......

Well, it must be another one of those encouraging gifts from the universe. My day on Friday was spent at Ronald McDonald House at Stanford. The Healing Flags for Hope project that was begun in June was ready to be hung. Even though my life did not allow much involvement in the project this time, I was able to help with the hanging of the flags. Once again the families and children of the House made inspiring and touching flags for the exhibit. There are about 300 flags. Not all of the flags are in the front of the House. There will be strings of the cotton messages about hope and prayer in the internal gardens and patio as well. This is all in honor of the special visit next Wednesday by the Dalai Lama.

I attended the House meeting where the families were told about the event and who the Dalai Lama is and why this is so unique and special. Not everyone really understood who he is or what a precious opportunity it is to be able to participate in this event. I could see that some did.

I know that for everyone who is lucky enough to attend this blessing of the children, it will leave a lasting impression and touch upon the heart to be able to be in His Holiness's presence. Anna and I hope to be able to also be there on Wednesday.



Sitting with the families while they make flags is always a special experience. This is a group of people not brought together by choice. In fact I am sure all of them would wish they were never there. They live at the House because they have a child with a serious illness or they are carrying an at risk pregnancy and need to be near the hospital when their baby is born. Children with cancer, rare diseases, and transplants are able to wait for care, receive care and recover in the House. It is a very warm and wonderful place.

During my visit in June at the kick off of the flag project I met a 10 year old little girl from Washington state who had just had a double lung transplant. She was not a victim of CF but had another rare lung disease. It was very inspiring to meet her and her mom. This time I had the gift of meeting another lung recipient who did have CF. He is 17 years old and received his lungs three weeks ago. Both he and his beaming and exuberant mother were doing fantastic. It is just three weeks post surgery and he is already walking 4 miles per day! His mother said that he can not sit still and needs to move and feel his new lungs. His muscles are suffering with the exercise and he needs to build his strength but his lungs are amazing. It is difficult for him to fully describe what it feels like to breath deeply and normally.

Last week I drove Anna from her condo to Murphy Street, downtown Sunnyvale. It is exactly 2 miles. I set a goal for us to walk there for lunch one day after transplant. Returning home will make it 4 miles total. It will be our first walking goal. She was hesitant saying, "Now Mom, I won't be able to do this right away." In fact it is hard for her to see that this task that is completely impossible now for her could be so easy when she has lungs that work. In a way it does not compute. Meeting the boy at the House demonstrated the possibility that she can accomplish this soon after her transplant. I know she does not want to keep her hopes too high and she knows that everyone has their own story of recovery but this is what I see for her.



I am so grateful to meet this teen and his mom at the House. It was a shot in the arm for me. He waited 6 months for his lungs. I hope that we do not have to wait a long wait but as his mom said to me, "It happens when it is the right time." Yes that is true but a mother's heart wants so much for their child to be relieved of suffering right away, with no wait. It is hard to suppress that desire but it is true, it will happen in its right time.

The Bunchers

Jack Johnson's Band
Anna Banana Bunchers

Day 74.....

Anna has been posting photos of members of the Bunch community on her blog. It looks great on everyone. She has also heard a number of stories about how it is stimulating conversations. Here is one group that you might recognize, all be it that one member "forgot" his shirt. That member is our dear Adam, our cousin who we love............ Adam is the drummer for Jack Johnson. The whole crew donned the shirts for a photo shoot, except Adam. I think he looks a little guilty in the photo, don't you?.......... but that is Adam!

For the first time yesterday Anna forgot her phone when we went out. The crazy excitement of it! That means that she will get the call when no one can reach her...... we went back to get it. Then the interesting magic of her shirt. Anna decided to wear her Banana Bunch shirt yesterday. While we were shopping a lady said, "Can I ask you something? Are you a lung recipient?" Anna turned to her, "No, not yet." She then explained that she is on the list. The inquiring woman with beautiful long brown hair told us that she had been on the list once. She moved to California and then no longer needed new lungs. She has an extremely rare disease called Alpha Gal Disease. It is related to her inability to process animal products. I am not sure how coming to California changed her disease status but she was another one of those people who needed to talk and the shirt offered her the opportunity.

The lady in the store told us that lung transplantation is her new cause and she was just involved in helping an east coast patient with a fund raising effort related to his transplant. She wanted Anna's blog address and said, "You will get your lungs. It will all turn out well." So nice to receive that reassurance even from someone out of the blue.

One of Those Mornings and Addendum

Day 73..........

I am going out to look for feathers..............

Yesterday there were "signs"................. They made me laugh.

Yesterday I could not believe we are still where we are................

Today I woke up hungry for cereal............What about my goat yogurt?

Today I woke up knowing I need to walk.................

I am not going to lie. I am beginning to not like this wait even though my mind has given me many reasons to like it. Something is protesting deep in my innards..........I said I would tell the truth.

Last night I thought, "what if we are waiting until Christmas or even worse, until the Easter bunny comes?" Anna said we could have an egg hunt................ Yes, we will be living fully, chocolate and jelly beans will abound!

I am going out to look for feathers..............

Tell me when you find something funny..............

******************************************************************
Very early on my walk a flock of black feathers in the sky cawed to me.

I looked up at the top of the redwoods. At least 30 or more black winged ones with deep calling voices sang a morning song. Sun rising pink with lavender at my back. I found the feathers I was looking for. They were not placed on the ground for me to pick up with wonder. They were doing their magic in the sky causing me to be picked up with wonder. That helped. Another "sign" that made me laugh......

Life Time Reminder

Day 72, awaiting, and awaiting.........

It is October 5, evening. Wow, when I think about it, I spent the entire summer in this mode. I was hold up all summer either in Sunnyvale with Anna or at home in Livermore. That was different than other summers and it went by....... now it is Fall. Anna reminded me that it was such a coincidence that even though I was "locked up" with her all summer, pretty sedentary, it was a summer that I could not have done much any way. Long walks in Murphys and treks up Skunk Ranch Road would not have happened due to my knee surgery. I had to hang low. And now, this week, I got my second set of stitches out of my cheek completing a second period of recovery. I have needed rest and recuperation for months now. So strangely it all makes sense and the time was used most efficiently. I was not able to hike or travel any way.... Guess I should be rather thankful that this all happened in this way. But now that the cheek is healing and the knee is so, so much better I am eager to finally get the exercise I am missing. Early morning walks every day, a spin on the stationary bike and weekend visits to our exercise swim club is to be the new norm, while we are still waiting.

Yesterday I received a kind email from someone who was concerned that Anna and I may have sounded a bit down. He was also concerned that we are counting the days to the transplant and not living more fully each day. I really appreciate this. It is wonderful that there are people who care about what is happening with us. The thing about blogs is that they show a slice of the experience. There is no way someone reading this blog can know all of our story. We are sharing parts, parts that we feel we need to express because it helps us and because we believe they are integral parts of what it is like to wait for lungs, new breath and new life while we live fully each day.

The predominant experience is that, we are indeed waiting, we are counting the days. When the transplant doc looks you in the eye and says, "be ready!" you must be and are in the mode of, any moment now..... I have philosophized about this waiting in numerous ways. I can have days when I am OK with it, days when I am feeling so Zen, and days when it is not OK and I really would like to jump out of this page and into another blog about recovery. So, I and Anna can not be one way about this. The mood changes, the seasons change. Summer has given way to a new change in the air and cloud cover. We are trying to share intimately about all of this the best we can to chronicle what it is like for ourselves and for others who are interested, those that already know this experience and those that may come to this point some time in their own lives.

Anna and I have a very special relationship. One of the things that we share is an intense interest in what it is like to be a person in all of our situations. We are both psychologists with Masters degrees and formal study. We chose this field in college because we were so fascinated with people, behavior, the meaning of life, and what makes us tick. We are very introspective and love to explore our inner workings. We talk a lot about this with each other. Among the many things we have learned is to not take things too seriously so we find ourselves very, very funny at times and enjoy spontaneous outbursts of laughter where ever we are. Once you look hard enough at yourself it becomes difficult to keep it all so serious even in life and death moments and serious illness. The only way to hold our own craziness, neurosis, mistakes, misgivings, wierdnesses and triumphs is with lightness. We have learned this pretty well but it takes a life time to do the work.

Holding it with lightness and being honest about what is arising is key, I think. This is what I am working on in my life. I don't think you can keep it light unless you first release it. Releasing it is being honest about your emotions, your feelings and not holding it in. Holding makes life feel stuck and hard. Releasing uplifts. I have a long way to go with this. I can feel it in my body, the holding, the stuckness, but I am working on it. That is why I like feathers. Whenever I see one I pick it up. The lightness power of the feather allows the bird to lift up and soar. Amazing. This is what we need to do as humans. Lift your head up, feel, let it go, lightness like the feather. This is why my life time reminder is on my ankle............

An Orchid Sits By Me, Smiling

Day 71, awaiting the call for Anna's double lung transplant, or New Lungs, New Breath, New Life and all with gratitude.....

An orchid sits by me...... tight blooms waiting to open. Is it a sign? Is the orchid smiling?

We are starting on week 11 of Anna's lung transplant wait. 10 weeks down, how many more to go? Doing our thing. Anna has moments that she does not feel well. Needing oxygen is no joke. I come and mother, pound on her back and chest, listen to the coughing, wash dishes, shop and cook. There are many others who have been waiting a lot longer. We have nothing to complain about, it just is, what it is...............

We think we know how our life should go or look like. Mine is not supposed to be like this for very long. It is OK with me for a while, but as I know about myself, I am very patient, up to a point. Yes, I am a very patient person, Mom always told me that. But then, there is this point. When does the point arrive? When I have had enough, not when the event is ready for me but when I am ready for the event. So, does this mean that I am patient? Or, does this mean that truly I am a very impatient and controlling person who seeks to manipulate and barter with the universe to make things go my way in my timing? Makes one think about themselves.

That is what this is about, patience and faith. Virtues. This is about virtues. I guess I have a lot to learn here. We stretch to our limits and then we find that we can stretch some more. I am stretching. The muscles are resisting at times, they hurt where the stretching can go no further. Then I must accept the pain and move on with it...........

We are in week 11 and we are waiting..............

One of my dear Peggys gave me two new books to fill my head in times like this. They are by Brian Andreas. He says many things that speak to me at this time as I create this story about transplant and my daughter who is waiting for this miracle.

I used to wait for a sign, she said,
before I did anything. Then one
night I had a dream and an angel in
black tights came to me and said,
You can start any time now and then
I asked is this a sign? and the angel
started laughing and I woke up.
Now, I think the whole world is
filled with signs, but if there's
no laughter, I know they're not
for me.

It is week 11 and I am looking for a sign but only a sign that carries laughter, no other ones are worth it........... says a mother whose daughter needs new lungs.

One Year Ago.....

Day 68, awaiting the call for Anna's double lung transplant.

Woke up this morning before 6AM knowing it was time to write. Strange that for me the very early morning especially in the Fall is a time the voice within my mind seeks expression. When I am involved in a creative project I awaken around this time with inspirations. I am full of ideas, colors, images, metaphors, poems, things that I want to say. It is like someone taps me on the shoulder while I am sleeping and insists that the flood of ideas must not be forgotten. Today is different though. Today I knew I should get up and write but I am not sure of what I need to say.

In my email there is a message from Ana Stenzel. Now I know what I must say today. It was 1 year ago that I had the gift of going with them to Japan. I stayed only a little more than a week but it was so special. I was able to witness the power of truth being told and myths being shattered to help change cultural obstacles to the miracle of transplant in Japanese society. Much work had already been done by very dedicated people in their own country but Ana and Isa arrived with their strong voice, confident spirits and beautiful message that helped to transform the conversation. Today because of everything that happened, there are new laws allowing for more donor organs and transplants and necessary medications for the struggling CF families in Japan. The Power of Two Movie is close to completion with this amazing story to tell about our friends, Ana and Isa, CF, transplant and the strength of a community of people fighting for their lives. On Oct 16 we will be able to see for the first time the first official cut of the film at a showing in San Francisco. It is poised and ready to be entered into many film festivals, exciting.

Finding The Power of Two Book in Japanese in a bookstore!

One year ago when I went to Japan I did not know that my Anna would now be waiting for a lung transplant herself. I knew that one day that would happen. I knew that it was not far away but it is not that easy to predict the decline of CF. I went to Japan to support my friends, to learn about another culture, and to support the CF families of Japan that are so few in number. I dedicated the trip to my daughter and all other families with CFers who would need a transplant one day.

Prayer Flags for the Families of Japan.

The trip was filled with enriching and deep experiences that have stayed with me. I met another CF family, the Adachi's whose son Akihiro is also waiting for a transplant like Anna is. May they both be blessed with this miracle............ And Rumiko whose daughter died without the opportunity to receive this miracle is still a friend who I feel everyday and I know reads my blog. I send love to all of you beautiful friends.

My Sister CF Moms in Japan

Here is an excerpt from my Japan trip blog in honor of being there one year ago......

Ana and I burst out onto the streets of Tokyo to visit the Asakusa Kannon Temple. We found our way on the Genza subway line. Now I know how to do this and feel confident I could get there again on my own, Yaaayyy.

Approaching the temple was a street of traditional Japanese trinket shops. I love the tinkling sounds, the colors, the miniatures, the fans, the good luck kitties, the little bags, the bells, the chopsticks, the rice crackers, the smell of fresh cooked waffles with red bean pastries everywhere. We were so excited to be there together. My sweet, sweet friend Ana told me this was her dream to go to Japan with me one day. We celebrated that we have been friends for almost 20 years now. What a wonderful place to be. We missed Isa and hoped that she was resting and restoring her energy.

Approaching the temple I became overwhelmed with the history and vibration of this sacred Buddhist place of prayer. Over the centuries Senso-ji has burned to the ground, and parts had been bombed and destroyed during World War II only to be rebuilt and remain a center of culture and worship in Tokyo since 645. The temple celebrates the worship of Bodhisattva Kannon, the deity of mercy sent to relieve human misery on earth. This Bodhisattva of compassion is well known in other sects of Buddhism around the world as Kuan Yin and forms of Tara.

From the flier about the temple: “Faith in the Bodhisattva Kannon, which has supported Senso-ji and drawn many people to this temple, consists of opening one’s heart and living by the merciful spirit of Bodhisattva Kannon and at the same time showing mercy to others in daily life. We hope that visitors to Senso-ji will join their hands in prayer, receive the merciful spirit of the Bodhisattva Kannon into their hears and pray that they can bestow that mercy upon others.”

The spirit of this intention was clear with out reading about it. I felt the warmth and compassion embrace me the moment I smelled the musky smoke of the incense and watched as people placed lit stick bundles in the cauldron to mark this place, allowing the smoke to cleanse them of impurities and negativity. I felt deeply, deeply connected with emotion to this place as it sent me into my Buddhist study and faith that has been with me my whole adult life. I resonate with these teaching to my core and deep within my heart. Warm tears and incense smoke touched my cheeks as I was overwhelmed with the feeling of privilege to be in such a place of compassion and mercy.



Inside the temple Ana and I lit and placed candles dedicating this Japan trip to the film and the work about transplant awareness to benefit all beings everywhere, ending suffering, and my daughter Anna. With a small offering, I also shook the box of sticks, an ancient way to receive a fortune.

My stick led me to number 42: “When spring comes, Katsura tree flowers are in full bloom, smelling so well. Your fortune will open wide when your season comes. If you get the chance, open, you will get fame and honor, climbing the way to top of the sky. Also you meet a great person with honor who helps you. The moon in the dark sky will get bright again, in the clear sky, you can meet the fortune soon. ‘Your request will be granted. The patient gets well soon. ‘” What more can I say?

Lunch was in a very small and traditional restaurant. (Please excuse me, I try to remember how to spell the Japanese words for foods but by the time I am at the computer it is a jumble.) Ana was so excited to share this with me, she and Isa ate this style so many times when they lived in Japan in the 90’s. In the middle of the table was a hot griddle.

We were given a piece of pork, bacon, to cook and then chop into pieces adding it to a mixture of green onions, cabbage and batter. Next we poured the mix upon the griddle. A large Japanese pancake sizzled in front of us. Ana’s grin was ear to ear as the aroma excited our bellies. Finally flipped on both sides it was delicious with sauces available on the side of the table. Must say I was stuffed as we had had a fresh red bean pastry just before we arrived at the restaurant. I got a little shopping done. With more to do another day and we headed for the subway back to join the others, change our clothes and attend another event.

I will briefly tell you about the final event of the day. It is difficult to tell much as I really, really do not understand Japanese. Yes, my heart is open but my ears, well, they are not catching onto much. The event was not as well attended as was hoped and it was thought that it being a Monday evening and rainy at that, was a reason.

Speaking in fluent Japanese......

Always looking for fun.....

The interview went well and Andrew and I learned afterward about some of the things that were said. Most importantly was the contrast between cultures such as that less than 10% of Japanese people who can, donate organs for transplant in comparison to California where over 70% do. The interviewers were amazed at this statistic. We are in a transplant community here but what is significantly different is that all the people we have met have either had a living donor transplant of a kidney, lobe of a lung or section of a liver or had to go out of the country to receive a cadaver organ. It is this situation that Ana and Isa want to address in this visit. They would not be here if it was not for the generous gift of life following the tragic death of someone in the U.S............



May the Power of Two Movie continue to be a force of compassion, education and awareness opening minds and hearts and ending the suffering of many.

The food was so important too...Thanks for taking me along.... I will never forget it.......

click here......
The Power of Two Movie