What More Can I Say?

Ahhhhhhhhhhhhhhhhh!
Thank you for the Miracle!

Nine months gestation.................

Today is the day! I am moving out. Sitting here now in the wheelchair (only chair left in the apartment) waiting for Cort furniture rentals to come and take the rest away. This is the day I mark Mission Accomplished. I am moving home to Livermore full time now. And it has been exactly nine months in this apartment. A perfect amount of time to gestate and release a daughter into her second life. The time here covered the period during transplant evaluation, transplant listing, transplant waiting, transplant and transplant recovery. I have been here for three seasons Summer, Fall and Winter. We had Christmas here huddled together in the front room with Anna's recovery bed next to our tiny Target tinsel tree. Sara says it was the best Christmas she ever had. This place held me in my tiredness, in my sorrow, in my anxiety, in my hopefulness, and in my final immense gratitude. It is done.

I am so glad that I am not getting on a plane to some far off city but only driving 1 hour from here. We will find a new normal and ways to be together in good health and for fun. I am so happy to return home. Before I do I am writing my last blog entry for this chapter in my life. I am serious this is it. This blog was to be about my experience being a mother of a 29 year old with cystic fibrosis who needed a transplant. That is not what I want to write about any more. I want to claim other parts of my life. I want to focus on other aspects of who I am. I want to dive into my third chapter of life feeling fulfilled and ready to explore other ways to be. I am considering whether to start another blog so I have set one up in case I can not get the writing bug out of me. I will call it Chapter Three (click on the title to get there). If you are interested you can check in. I give no guarantees how much I will write or even if I will but I thought I should set it up to give me an option.

Before I sign off I want to mention the serious and the silly. The serious is the earthquake and tsunami that hit Japan today. The morning was spent with the TV on. I send love and prayers of protection to my friends in Japan. I am especially concerned about the Adachi's and hope that Akihiro who received his lung transplant in December is doing OK. They live in Sendai which was devastated with the rising water. Part of my journey to Anna's transplant was via Japan where I prayed in their temple. Japan is a very special place and my heart goes out to everyone there.

May Blessings Rain Upon Japan

And here is also the silly. When I moved here I posed the question...... how much yogurt would be eaten in the time I lived here? I reported from time to time on my goat yogurt consumption. I saved every container for this very moment. The answer, 39 containers of goat yogurt, plain and vanilla. Think what you may about this food of choice for breakfast.

So, here it is, my ending to the story. I received hope in Japan that a Miracle would come for my daughter dieing of cystic fibrosis. Many serendipitous things happened along the way. We even met and received blessings from the Dalai Lama. The Miracle arrived. It was tough and grueling for a good part of this journey. Many tears were wept and many wonderful loving and fun times were had too.

We must also always remember that someone we do not know lost their life in order for Anna to receive a new life. We are so grateful. And now, because of this kindness and generosity from another's grief we are beginning new lives, all of us, Anna, Casey, Sara, Lou, Doug and Me. It has been an amazing journey for sure..................

Our Last Supper (Lunch)

Want to continue to follow Anna? Go to Anna's blog.

Visited With Grammy

Today we redeemed a gift to have a pedicure........... fun and relaxing. Thank you Linda, it was great. After our feet were pampered, cleaned and beautified we went out for lunch. Food again, my increasing waistline is glad all of this fun is soon coming to an end. Our restaurant search lead us to Redwood City and a funky little restaurant that in her last years was a favorite of my mother's. As we walked into this late 50's era place we immediately felt Grammy. Mom was here. I took her here to lunch a few times. The lunch was good, not fabulous, but it felt that we were with Grammy. This was a surprise for me. I did not realize that today was a day to include Mom in our day. It was perfect though.

After lunch we decided that Mom would have wanted us to have desert so we traveled up the hill to the Woodside Bakery. Mom and Dad lived in Woodside for 30 years. It feels like their home still. They loved the bakery. We bought a small box of cookies "on Grammy" and coffees. She would have been so happy that we had these cookies. To spend a little more time with Mom, we went to the Woodside Library where a bench was placed by our family in her honor in the beautiful native plant garden. It was indeed time to talk with Mom. It was time to say, "Mom, look at Anna. Can you believe it? She has new lungs!" Mom would have been so thrilled. As Anna said, she would not have done well during the intensity of the hospital recovery and all but only if she could see her now!

We sat on Mom's bench eating cookies and sipping our coffee. We felt her and Dad all around us. They were wonderful people who loved gardens, nature and Woodside. Again, it was a full circle moment of completion. Where I had sat on that bench my self since transplant, Anna had not. It made us both feel good to show Grammy the results of the past difficult year. When we sat there Anna said, "I have a feeling I am going to have these lungs for a very long time. They feel like they are at home inside me. They are happy here." Love that thought!

Let The Show Begin!

Anna with Marc Smolowitz

Finishing up post transplant........

Sunday we all met in San Francisco for the showing of the movie, The Power of Two for the cast and the crew. It was again at the Viz theater in Japantown on Geary. The film is finished and tells the story of twins with CF who meet the challenge with courage and creativity breaking through boundaries, living beyond expectations, and becoming international advocates for organ donation and transplant. Their struggles are told honestly and their triumphs are an inspiration. Interwoven in the story is Anna, their friend for 20 years. While their story is being told, this person who was a child when they first met her has also grown into an articulate woman fighting the same foe. Anna bravely shows her end stage CF and talks about what it is like to be on the transplant list. I am the tearful mother by her side.

It is a movie and a portrayal of our family within it that we can all be proud of. I hope that the film offers all of us an opportunity to be vocal advocates for organ donation. We know that everyone wants to see it but there is an official process that must happen first. How to market the movie is first on the agenda. We were promised that this year there will be a gala event in the bay area for family and friends and all interested to come and see the film. That will be very exciting. If you are interested you can stay in touch through Anna's blog, facebook, the Power of Two web site or (not really announced yet) my new blog. When there is a local date for it to be shown we will let you know.




Notice, Casey, Doug and I (behind the camera) were wearing masks. Anna shared her little stuffy nose with us so we were very careful at the movie. It was eye opening to have to wear a mask like she does. It is warm with your hot breath filling it but it is also a feeling of safety. We were not sick but we wanted to be very careful to not share any germs. There were a number of transplant patients at the showing.

One more comment about the film. It was striking to see Anna pre-transplant. In the film we revisited the sounds of coughing and the tightening of the stomach as you watched her fight for clearance. CF is such a hard, hard disease. Those that have it and fight it are remarkable.

Among our other CF friends out there are Steve and Akihiro who both also received lungs recently. We understand that Akihiro is doing well in Japan. We are so pleased. His father is portrayed in the film with photos and childhood video of Akihiro stressing the differences in CF care in the US and in Japan. He is the first CF double lung transplant recipient ever in Japan.

Steve is still on some IVs and working with his meds. He has had a rough time in his recovery since rehab and we think of him all of the time. We look forward when he gets better and this summer he and Anna can meet in the pool for a swimming fiend duel.

And, there is another friend of Anna's from CF Camp and Retreat, Katrina. She is in San Diego and has been on the list for over a year. Katrina is severely ill at this time. There is a call out for a living lobe donor for her because she can not wait any longer. It is a small number of lung transplants that come from a living donor but it does happen. Those that are a match can offer a lobe of a lung to someone on the list. In this case you usually need two living donors so that both lungs can be replaced with lobes. For Katrina, they see this as a last chance for her.

I know that Anna is struggling with how unfair this seems for Katrina. She has been watching her since she was listed long before Anna was. Patients wait much longer for lungs in other parts of the country and even in this state. Northern California has a very good record for organ donation. There are patients on the Stanford list who have been there over a year and are still waiting but the statistics are so hopeful in this area for them to finally receive their lungs. This just underscores the great good fortune for Anna that she was able to receive her gift after little over 3 months. We are so grateful.

And again, it was poetic justice that as we are wrapping up this phase of the transplant experience we got to see the final film. The sense of full circle is real. We are moving on.

Refinishing, A Very Good Project

Week 15 post Anna's double lung transplant......

How to begin to write this week? I will write daily until I give up the keys to 1513. This is the last week of blogging about a Miracle On Order and being "the mother of a 29 year old daughter with cystic fibrosis" edited to: "the mother of a 29 year old daughter who received a double lung transplant". I took up this project to blog about this experience because, 1. I needed a creative project for me to do while I worked to support Anna; 2. I wanted to share about this miraculous and exceptional experience of resurrection and medical technology because it was so extraordinary; and 3. It was simply therapeutic for me to write it down especially knowing I had an audience that included my family, close friends and new friends who could witness this life event with me. So, to end this blog I will write as I began it, just telling the story.

Last week Anna and I went to lunch and chose PF Changs. After we sat in our seats Anna's eyes lit up and she reflected, "Mom, we have come full circle. This journey started here. Remember it was during my transplant evaluation that we went out to lunch at PF Changs and you got that fortune?" I remembered, "Wow, you are right, Anna. We then swore that we would not have another fortune cookie after that, but today we should."

That fortune in early July said, "You will soon witness a miracle." It was stunning. Finding a miracle was exactly what we were looking for. Anna was at the end of her life with CF lungs and the only miracle to save her was new lungs. We mused on what "soon" meant, such a relative term. Now we know, soon meant 119 days on the transplant list. We could not know this until the time had passed. All that we could do was to trust and have faith that our miracle would arrive "soon".

After we enjoyed a lunch of lettuce wraps, hot and sour soup and pot stickers the check arrived on the ceremonial little black tray with two cellophane wrapped fortune cookies for us. Anna chose hers and I opened the other first. My regret is that I did not photograph it right away. I slipped it into my wallet, it is not there now, but it did say, "Good things come to those that wait." Perfect. Yes, when you are patient and you wait for "soon" to arrive, good things indeed do come. Anna's said something about the exotic and traveling to the tropics. That was really perfect for her too. From crippling pulmonary disability to being able to realistically dream of a tropical vacation is where she is today. So, we came full circle, miracle received.

After that lunch I returned home to Livermore for the weekend. It still feels novel for me to be home. It has been suggested that Doug and I need to go away, that we need a vacation. It is just that I have not been "home" hardly at all in the last year and that going on vacation is what it feels like when I go home. I just want to be home for more than a weekend now. I want to get up in the morning from my tempurpedic mattress (ahhhh) with a greeting from my sweet Roxy dog. I want to go into my kitchen and make my coffee there not here in this Sunnyvale apartment. I want to do this day after day after day after day. Then I might think about a vacation to some far off land.

I have thought often about something that I say, "I can not wait until I can have my life back or start my life again." When I say this it makes me stop and reflect, "if this has not been my life, then what...... is". This constant statement goes back to one of my first blog posts on June 17, 2010 when I wrote, "I do not want to do this. There is something inside of me that rebels." I would never choose to have to fight against the most formidable foe of end stage cystic fibrosis. No one wakes up one morning and says, "oh, today, let's see, ah yes, I want to spend my time fighting for my daughter's life and wait for a lung transplant while I watch her suffer and nearly suffocate from thick crap in her lungs." I had to do what I had to do. It is now done. Now, I want to wake up from more creative dreams. Enough of this type of struggle.

So this weekend I started a project, refinishing some chairs. I found them on craigslist for $12. I think they are kind of cool. So, symbolically it is really therapeutic. I spent hours taking off the finish. I worked with steel wool rubbing off the old worn and ugly to reveal the beauty of the wood underneath. I am not sure if in the end I will want these chairs for my new, old round kitchen table. I am not sure how they will end up. But, there are possibilities that they will be great. It is fun to have this project to get me started again. It is just what I needed to begin to say, I have my life back. I am getting up each morning to do what I want to do. And my dear Anna, she has been "refinished". Her old veneer has been taken off and the beauty of the new is glowing.

At clinic yesterday Anna's PFT was 78%. It is continuing to climb. She is watching herself get better and better and better. All is good with just a few med adjustments. She graduated to going to clinic monthly now. Amazing. She is very, very happy and there is so much time in her life now, she does not know what to do with it all. Projects. Yes, she needs projects too..........

Tendrils

It happened yesterday. We were clear. The time has come. We are done with this phase. Sitting together with "nothing to do" Anna and I recognized the signs we were looking for. I wanted there to be enough cushion of time to find them. I wanted us to find them together so that it was mutual.

Anna currently has a small cold in her nose but she is handling it. She immediately had a swab to check for any bad viruses. There are none. This is just a little cold in her nose. I must note this is a very unusual event for her. No cold that I have ever remembered was "little". All colds went directly to her lungs for a protracted CF event. And, I mean all, since the beginning of time. Without CF lungs being vulnerable to the whims of viruses she is handling this one like a normie. It is a sign, a sign that this is working.

Other signs are the obvious such as, she is driving, she is cooking, she is getting on with it. What is left are the tendrils of holding on to each other. This is why we needed this cushion. We have held on to each other so tightly so lovingly, with such respect and care through this year that finding those tenacious binds and releasing them is difficult. Our desire for our own lives and discovering who we are now is our push. Excitement about how to live a "normal" life (albeit as a transplant patient now) is an inspiration. But, the love, the friendship, the companionship we have had with each other to have made it this far through so much pain, fear and just plain "Hell" is so sweet and sticky like glue. Time has come to dilute the glue and separate into our lives. We will find a new normal for our visits and time together as mother and daughter and as a family.

Many people have commented to me that they have enjoyed reading the story that I have told in this blog. I am so grateful for all of the positive comments and compliments to me. I am so grateful to have been able to write about this extraordinary experience and to have a way to so freely share it with others. Modern day technology is quite astounding. The phenomenon of blogging about ones life and sharing with others is an amazing opportunity. I believe that it must be most valuable to the people out there who are suffering from some difficult fate and need community and information. It is very lonely to live with life threatening diseases and situations without knowledge and community. It is an incredible world that is so open today.

I will complete this blog next week. I hope to gather my thoughts and reflections as I finish emptying the apartment and handing in the keys. That will be a monumental day of liberation for all of us. May our dear Anna be blessed with good luck in this journey. May she be blessed with good health, good medical care and opportunities to fulfill her life's dreams. May all who have been there with us also be blessed with goodness.........

Blowing In the Wind

Week 14 post double lung transplant......

Well, this past week we went with the direction of the wind, so to speak. From art to science, and with country friends visiting and luncheoning in the city, we did many different things. The week ended with Anna passing another milestone of independence and good health. Anna had a dinner party for friends! A simple thing to do but for her it was a very difficult task in the past. Her energy level, time constraints with busyness due to treatments and regimens and cross infections concerns made it so difficult to simply have friends over for dinner. Saturday she had 4 women, all great supporters of her and connected to her CF life for a birthday celebration for dear Linda. Wonderful, life is getting even more normal.

Thanks to Sue and Peggy for visiting. Here is Peggy's coffee reflecting an image of the sweet hearts of these two special friends...........

After visiting the art museum with Peggy and Sue we met Sara at the CF Lab for more research of Anna's CF sweat.

And thank you to Dr. Wine, a long time friend of ours on this CF path. We started this journey together when our babies (only days a part in age) were diagnosed. It has been such a life time of experiences, changes, trials and miracles.

Only two more weeks with the apartment............ and I think this goes for the blog as well......
I will say more soon.

Celebrating, Do You Know Happy?

Celebrating February 22 2011, three months post transplant, November 22, 2010

We had heard the magic of three months. Well, we also know that this magic is not for everyone. There are others who are continuing the struggle after three months to get their feet under them. Our friend, Steve landed back in the ICU about two weeks ago with a terrible infection and is home now on continuous meds. He is four months post. We think of him every day and send good vibes. Anna constantly reassures me, "Steve will get better, it will happen. He has to and when he does he will forget about these hard times." Steve we can not wait to see when your magic timing of turn around will be.

But, for Anna, the magic of three months is true. This week seems even more different. She is more in touch with getting on with it. The beginning of driving, spending some time alone, building confidence is strengthening her. This week I will only spend three nights in the apartment. We are weaning. It is hard as we are such fast friends enjoying time together, lunching, shopping, Oprahing, healing. But, we need our independent lives and new directions.


We had to celebrate this date so of course Anna chose lunch at Yakko's, our celebration restaurant this year. Temptation roll, a bento box, and a big smile for Anna. We then drove to pulmonary rehab at Sequoia Hospital. Anna's getting so strong. Steve is not there any more as he is home healing but today a new rehab buddy appeared. He is three weeks post transplant after his second double lung thransplant. He rejected his lungs that he received 5 years ago. Amazing to see how incredibly well he is doing. He is a CFer too. So now as I slip away even more, Anna has this new buddy to keep her entertained.

Update on my "other knee". Remember the HELP button in the elevator at the orthopedic surgeons office? It was still there staring at me. I did not have to push it this time as he declared, no surgery at this time! His conclusion, there are tears and degradation with arthritis as the main culprit for my knee swelling now. He told me to lie down while he drew his syringe of orange stained fluid from my sweet knee and shot in some cortisone. "Rest the knee for ten days, use ice and then get back into exercise slowly." OK, will do. A much better outcome than last August.

It Is Done............

THREE MONTHS POST TRANSPLANT.......


Anna says it all! Please click here to read her own words......

Anna at Three Months...

Changes, Moments

Changes, changes
Last weeks 70's has shifted to cold and snow....

Sunday, tomorrow marks 13 weeks post transplant........

The gift and curse of time. Time heals and passes during those times you say to your self, "this too will pass." That is sure, that is something we can count on. But as time passes what is, is no more. There are constant new moments. The moments of promise you have already touched have slipped by. They will not return. So now as this is a moment I do not wish to let just slip by, I notice. I notice the waining moon that lit up the morning sky as I woke up. I notice the snow melting on the deck outside the window. I notice that now I am in a "better" place. I cherish this moment and this noticing.

I think this is why we love the country. It slows us down. It makes us notice. Less zooming cars, less slow cars backed up at each stop light waiting for the train, less concrete covering the soil that accepts the fall leaves, the winter snow, the spring shoots and the summer dry grass. Back to Murphys again to ponder on our new possibilities. Nothing needs to be cast in stone. No decision has to be made that can not be changed but when you are at our age,we seem to weigh things far more carefully. But at this age there is also an advantage of that time that has passed. As it has passed, our experiences have gathered. We can draw on what we have felt, seen, been through and dreamt to find a direction of sorts. Where has our hearts led us? Where do we resonate? What is most important now? How do we create our lives? What flavor is most delicious?

Coming out of the intensity of the last year can be greeted as a rebirth of sorts. I think this can apply to many such experiences of intense human living. Whether it is a death of a loved one, a divorce, a transplant and saving a daughter's life, an accident, a job loss or other extraordinary times, one can feel the pain, the transition, and open to new possibilities. They are always there. They exist in those moments that you begin to notice. I know that Anna is also listening, noticing, realizing that this is an opportunity, a new turn in her life. She must also draw on her past, what she knows and now what other things she wishes to learn about. The world is open. Where does she resonate? What nurtures her? What nurtures anyone of us in our lives? Are we living the life that we want? Can we make even small changes that can lead us to our preferred life direction? Is there something now that speaks to what you want? Can you notice it? Can you acknowledge it?

We passed a milestone last week. Anna drove with me in the passenger seat. Things are getting better. Each week there is a level of strength that is growing. Independence is not far away. She continues to do well. I feel more "normal" too. I am less tired. As Vincent, the acupuncturist told me, "as you rest more and more, you will feel better." Rest helps us to restore. I am restoring. This is all good and my mind is on the positive today but Tuesday I go back to the orthopedic surgeon. An MRI on Wed showed a significant meniscus tear in my "other" knee. The right knee has the tell tale signs of intense swelling, stiffness and the general inability to get me around properly. Oh boy. Well, what a way to end this journey, the way I started it, but this time Anna has agreed to be my caregiver as I recover from the next knee surgery. I guess it will be poetic justice and a karmic payback. My turn again to be vulnerable and now I will let my newly made daughter with gorgeous lungs shop for me and bring me tea. May this time pass too but not without noticing as many moments as I can.

Updates and Dreams

Ahhhh, healthy lungs, suflowers and the country life....

12 weeks post transplant.............

I have been bogging down on the blogging. The energy seems to be waining as we relax more. Time is proving to be the healer as Anna gets stronger and "weller". She still is some moon faced due to the prednesone, a true tell tale sign of a transplant recipient and there is a sense of the delicate. It is like if you see the strong limb of a tree you may reach out to grab it and hold on like its the arm of an athlete but if you see the pink plumb blossoms opening on its stock your inclination is to approach it gently. Anna is a plumb blossom aspiring to be the strong limb and athlete one day.

At clinic yesterday Anna's PFT (pulmonary function test) proved to continue to go up to an FEV1 of 71% and the marker for her small airways at 133% of what would be expected of a healthy person. Wow, to see growth in the PFT instead of decline is a real gift and an oddity still. All is doing well, still some adjustments in meds but all signs are of recovery. Anna was given the go ahead to drive and her sternal precautions were lifted. She was also given the go to be able to travel a bit and go to Murphys! Things are starting to get normal. So I need to back off a bit and start handing over the reins to my plumb blossom.

I have misplaced my camera. I think that word is kind of like "misspoke". Did I misplace it or did I loose it? I can not find it so perhaps the truthful thing to say is that I lost it. I have thought of one more place to look but I can not get to it. I have missed having my camera. I have enjoyed taking photos through this experience and sharing images with the words. Hope I find it soon or I must buy another camera.

I wanted to share photos of yesterday when we went to Jeff Wine's Cystic Fibrosis Research Lab at Stanford where Sara is the research assistant. Anna volunteered her CF sweat for an experiment. It was great to see Sara in action. They are studying various ways to collect data about the sweat response in CF. The sweat test was the original test for CF. Now with genetic testing one can have their blood tested for the gene. I believe any positive sweat test is also followed by genetic testing as well. Because my camera is "misplaced" I used Anna's but it quickly left my hands to meet the floor with a crash. I broke it. I may be having to buy two cameras now. Oh hum.

There will continue to be more updates on Anna as there are still more procedures and tests for her in the next month but I am finding my mind wandering to other things like, do I want to be a farmer? Or more accurately, do I and Doug want to finally end up in a few years "retiring" from Livermore to live full time in more of the country (expanding Murphys) with some acreage, a barn and a few animals, a pond, a country garden, a few grapes and the sounds of the creek and frogs? Is this Livermore home an interim to be followed by a more rural life? On this we are pondering. Could it truly be that what was chronic illness as the center of our decisions is now gone and we can think about ourselves as the center of our own universe now? It is very hard to make this shift. Our minds are so ready for illness and care giving. Can our minds now accept Anna's improving health and growing independence? We do need to make some attitude adjustments so that we can expand our horizons.

........The thought of a cute red barn with a split rail fence holding a miniature horse or two, designing a new home that compliments the surroundings and opens to the western sunset, walking into the country garden to harvest the sunflowers and fresh English peas, sweet and crisp, is very appealing. Just dreaming......... It is a very different place (mental space) than where I have been. I think my mind just needs a vacation........... Could I really do this as I enter this older stage of my life? I must think, why not? All dreams are possible, don't you think?

Happy Valentines Day

My Valentine!

12 weeks post transplant.....

I am home or am I? Today I was in Murphys, Livermore and Sunnyvale. I have a bed for my head in all three places. Which is home? I crawled in this Sunnyvale bed tonight with my partners here, my MacBook and my IPad. They sleep next to me after I enjoy a little program presented by one of them with my head propped upon my cushy pillow. They are my companions while living a solitary life in the apartment. But, wait, I did give notice! March 12 is not far away so long as Anna's body cooperates and she continues to do well. Then it will be Livermore and Murphys. Hooray! And then my partner will be Doug, my valentine! That will be great, indeed.

Tommorrow morning is clinic, bright and early, got to get some shut eye and hopefully Anna continues to pass with flying colors............ An update will be coming soon........... Happy Valentines Day.

An Update........

11 weeks post transplant.........



Monday morning I wrote a blog post that some how was erased. So annoying. I did not have time to redo so now, I am. I can not remember what I wrote, if it was clever or whatever. It is funny how things change all of the time. What you feel like writing about one minute will change after a period of minutes, hours or days. When you sit to compose it depends on what is on your mind at the time your fingers hit the key board. The words I wrote on Monday are now long gone but because of the photos left in this space I know I did talk a bit about nests.

Last Friday my brother, Greg, my niece Erin and her handsome Ben came to visit us for lunch. Following lunch we went to see the new sculpture at the Palo Alto Art Center created by Patrick Dougherty. Patrick is actually a cousin of ours. His father and our father grew up together on farms in the Hinton area of Oklahoma during the "dust bowl". They were part of a large Irish family with many close cousins. I never met Dr. Ray Dougherty, Patrick's father but when we learned that Patrick was creating these wonderful sculptures in the bay area a few years ago we introduced ourselves to him. Patrick has become quite well known for these marvelous "nests". He uses sticks, twigs and tree cuttings to build fantastic whimsical structures. We are so lucky to have one near by. It is at the corner of Newell and Embarcadero for anyone to visit and walk into. It would be an absolute dream for a child to have one of these in their backyard to play in.

Today we are doing something completely different. Anna and I are spending the day at Stanford hospital waiting for hours while Anna is having a gastric emptying study. They are looking at how long it takes for food to leave her stomach. Slow emptying is a common side effect of this type of surgery as so many of the nerves necessary for normal function are cut and it takes a while for them to repair. Sitting in the second floor B and C waiting area has been the perfect place to see "the team". This is the passage way for the lung transplant doctors, nurses, and others. You do not have to make a clinic appointment. Just sitting where we are you can visit with your health care providers as they make way down the hall......

All is continuing to go well. Anna is improving everyday.......... Life is so good. She wrote such a sweet blog entry about how it feels like the greatest Christmas gift, Click Here.

Visit Patrick Dougherty's web site to see more of his incredible work by clicking here: Stickwork

A Poem and More Reflections

ten weeks + post transplant.....

It is amazing
How it all changes
Each moment
Aware of the textures
Aware of the tastes
Arising
Falling
Opening
Closing
Here I am

I am feeling better now. Working through with my emotions. It has been a week of easy tears. That tends to be more unusual for me but when I have those times it is a relief. Letting some of it out helps so much. It makes me feel more vulnerable with very tender spots that I want to care for. Since I can be a tough one on the exterior most of the time I kind of covet these times of vulnerability. It is nice to feel a bit softer.

But, as I said, I am feeling better now. A letter of notice has been sitting on my table for a day or two waiting for me to act. I think today I feel ready to hand in the notice to vacate this apartment on March 12. That gives a bit of a window past our three month mark of February 22. That gives a little wiggle room for our transition to launch. I have the willies about this because when you go through this intense of an experience you can not believe it is truly lifting. I wonder if there will be another crisis just around the corner hiding from us. Could be, but I am going to vote for this is a go and Anna is just going to continue to improve. No more obstacles, just healing and restoring for us into a new Spring.

More Reflections and A Poem

Ten weeks post transplant......

If I am being redundant then I apologize. Anna continues to get better. There are still a few issues like regulating her blood pressure to a lower, more consistent level; getting her blood sugars in better control; the very slow healing at the top of her incision; continued sternal precautions; a resolving blood clot and the need for coumadin but, she breathes. The lungs are perfect. Time will give her what she needs to open and expand her new lungs but they work well and she loves them. Because she is doing so well, at the next clinic visit in two weeks we will talk about her being able to start driving. She is on track to the magic three months when she will not need the constant companion. I am deciding on a move out date from this "crash pad". We are talking about that a lot.

I think the recognition that she is truly a survivor is allowing the past year to come into clearer focus for me. You know how when you are so engrossed in a task you can only see what needs to be done and not the bigger context? Once again, to risk being redundant and boring you, I am recognizing the obvious, we escaped the bullet. Anna survived. Anna is surviving. Anna is beginning to thrive. I gave it my all. I have written about my weariness, my tiredness, my loneliness for home, my husband, and my creative life. Each day I am feeling this. I see this as healthy. This is the way it should be. Heaven forbid if I wanted to just continue this path as the ever involved doting mother. How gross, really. It is much better that I feel I want this to be done so that we can both have our separate lives and our own adult paths.

But last night the grief bubbled up. The pool of grief now is barely under the surface. The new healthy ground is allowing me the luxury of realizing what really did happen this past year. We fought to save her life. It was a pointed determination and conviction that knew not what was to come but was willing to overturn all obstacles including the haunting notion that she was dieing. To fight this fight it was better to set our sites on the outcome we wanted, new lungs, a successful transplant and a new life. What was happening in our midst and under our pounding hands was, Anna was dieing. That's the grief, that is the recognition that is finally here in a deep way. I was a mother in battle. We were a family in the most profound challenge of our lives. Last night's cries and sobs began an emptying of that grief and a deeper recognition of my own personal story. Each of us has one. That is what we are creating and writing as we move one step at a time.

One At A Time

Oh the sands of an hour glass
we watch them falling
one at a time but in a stream
marking time

The gravity of life forces the falling
One pile of passing opportunity with each grain
One pile of mounting experience with each touch down

There it is, the before and after
in front of you
Yet, never the same even in each second
of the passing,
tumbling,
falling sands

Turn it over
don't let it end
the new knowing will usher more grains
building another pile.

May All Continue To Go Well

The cold weather has returned. So glad we went to the beach when we did. Week 10 is about to begin. The tiredness is not as intense. I started some acupuncture a week ago and have now had 4 treatments. There is something about this Chinese medicine. I know that there are studies that show it not effective but there are others that show it to help with pain. I guess I am going for the pain. It is the pain of tiredness, soreness in the legs, and general pain of life. Wanting to get through this final period with a sense of rejuvenation, ready for an energetic Spring and year to come. I have sought out acupuncture at certain periods of my life for about 30 years now. It seems to work for me. What I do know is that that hour on the table with needles inserted, a room darkened, gentle music playing and a kind soul caring for me does the trick. I always leave with a sense of deep, deep rest. Just what I need.

This week will include a clinic visit, rehab and the continued process just begun of cleaning out Anna's cupboards. She is starting to reclaim her home and its contents. Even after going for "an hour" walk she can recover and keep at it. The young woman is starting to act like a "normie" like you and me. We take our ability to have our day and all the things that we do definitely for granted. To someone with serious chronic illness the normal things can not get done like they do for us. But now, Anna is starting to getting them done. Wonderful.

At clinic we will talk about our transition to normal. I will have to give 30 days notice to leave my apartment and I am hoping that I can give notice this week! That means that hopefully in this month Anna will begin to drive again after a year of not being able to while taking over or rather, taking back her life with me shrinking back into the shadows. I will always be there when needed of course, of course but it is time for new life and more time with our honeys. Less time as a tied at the hip mother daughter team. It is time. It is time. I am only thinking positive for Anna's continued healing and recovery to move forward. May all continue to go well..............

A Day At The Beach

January at the Beach, Ahhhhh......

The weather in California is unseasonably warm. Yesterday we went to the beach. Sorry to those who live in other parts of the country but it was gorgeous in the 70's here. Another outing that is reminding us of healing and why it is so good to be alive and to breathe.

Every where you look there are treasures to be found.

9 Weeks Post

Mother Sculpture

On Saturday it was 2 months and today it is 9 weeks post transplant.....

The days are passing with out crisis, with continued healing and more and more indications of "normalcy". Yesterday Anna said, "Remember when Breath'n Steven wrote that it is amazing to breathe every day with his new lungs? He is right. It is hard to believe this. Every breath is amazing."

We are at the 9 week mark now. 12 weeks has been the magic number to us and so we are getting closer. It is at 12 weeks that most transplantees can begin to drive again and are not in so much need of help and constant care giving. Soon we are going to have to think about our transition so that it is not too abrupt in my absence. I imagine we will go a little at a time. Anna talked about her needing help her entire life and how strange it will be to not need help if that will really be so. It is true that we made choices with Anna that centered around her need of support for her entire life. I am sure she will still need some but the thought of a healthy, independent Anna who can finally strike out of the binds is quite wonderful.

As we are getting closer to this time of transition it seems it is harder and harder for me to continue doing this. It must be because we are coming to an end to this part of the journey I am unraveling the tight holding on. The call to be "at home" with Doug is so strong. I miss my life of tootling around the house, coming and going on my own schedule and long periods of aloneness where I can concentrate on my creations. This morning I thought that instead of resisting these feelings or feeling bad about them I should dive into the "I have had enough of this program". I should not ruminate on it but feel it. What does it feel like to want this chapter to be over and to get on with my life?

Perhaps it is that there is something bubbling inside that wants to burst forth. The bubbling is lapping at the walls of my restricted life. It is reminding me that there are other things to do. This makes me anxious in some ways as I am fearful that more complications or family crises may arise preventing or delaying me from this uncorking. I am also weary, weary and weary. It is not that the healing, the joy of Anna's new found health and the breaks and times at home now are not rejuvinating. It is the weariness of the length of time of all of this. It has been a long haul for me to give and give and give. The weariness comes from the part of me that needs change, freedom to move and create and periods of deep inward time. It will take a while in my own space for the weariness to leave.

And then I taste the weariness. The first thing that comes to me is how it connects me to other women. It is the feminine, the mother that holds the sick child and nurses with every drop in her breast. Every mother has felt the weariness, the tiredness that comes with the infant up at night and the lack of sleep. The worry about your child from early ages into the teen years. There are times when you just want to shake it off for just a moment but the love and connection is so deep you never, ever would. This mother earthness is apart of us and necessary to keep it all going.

And here we are. It is a good week. The sun is shining and we are in our schedule of pulmonary rehab, blood draws, walks in the lovely weather, eating out (and eating too much). We need more winter but this taste of Spring has been so nice. Anna is wondering how her life is to unfold and is learning a new way to be. I am carrying my restlessness and weariness in a bundle at my side, reminding me to keep stepping forward. We are getting there.

We Are So Blessed

Five Women, Blessed By Life and Its Gifts, Japan, Oct. 2009

Our week began with celebrating the January birthday of our twin friends, Ana and Isa. We were treated to a traditional Japanese new year dinner made by them. It was fun and delicious. It was also Anna's first evening outing. And even more importantly, it was the first time after getting out of the hospital that Anna and Ana and Isa did not have to be concerned about CF cross infection issues amongst each other as there were no infected CF lungs in the room that could pollute the party atmosphere. This is a very monumental shift for them and their friendships.

Our gathering was a celebration of the miracle of becoming 39 years old for Ana and Isa and the miracle of new life and a new year for Anna and our family. In the photo above I am in Japan with Ana and Isa and two other CF moms, Rumiko and Mrs. Adachi. Sadly, Rumiko's daughter was unable to receive the blessing of transplant before she passed away from CF. Rumiko celebrates the miracle of her daughter's life everyday and is involved in the CF community in Japan carrying the beauty of her daughter with her as she reaches out to others. Sitting in front of me in the photo is Akihiro's mother who on Christmas Day, 2010 was the first CF patient to receive a double lung transplant in Japan. The Adachi family is experiencing this miracle now and we send our love and prayers for continued healing.

At the party we learned more about the completion of the the film, The Power of Two. (A powerful and excellent documentary about Ana and Isa as double lung recipients, organ donation, Japan's cultural issues about transplant and the miracle of transplant). Ana and Isa just returned from a private showing for the music artists whose songs are in the film. Most of the artists did not know anything about the film prior to the showing. The feedback was very, very positive. It was considered engaging, moving and informative. Anna Modlin was considered a central figure in the film as she is shown pre transplant suffering from her lung disease waiting for her miracle gift. Everyone wanted to know how she is doing and they want her to travel with the film as it goes to film festivals. Time will tell if she will be able to do so.

I wish I could say, it will be opening on a certain date and time to direct everyone to see it but we must wait for film festivals and other opportunities to open up for its debut. But, please watch for it in the next year. At the private showing two artists performed songs that are in the film. One is by Sara Melson. We were emailed this song while Anna was in the hospital. We had heard it once before when we saw a preliminary viewing of the movie but did not remember it all. It is an amazing song that is tied to Anna's appearance in the film. When we could really listen to the words we realized it sounded as though it was written just for her. We had deep cathartic cries while the IV's beeped, the nurse interrupted and the hospital thing kept going on. We could feel it coming...... She is so honored to be able to associate her story to this song. I have included a link to the song for you to hear and see the music video. Click on this link.

Sara Melson, Feel It Coming

To learn more about the movie, if you have not seen this before, here is a link to the current trailer for the movie.

The Power of Two Movie Trailer

We are so lucky and so blessed by life's gifts........... Isn't it all so amazing?

Happy Birthday Ana and Isa and again, Happy New Year Everyone!

Working on Chapter Two

now eight weeks, two days post transplant....

The idea of normalcy is growing, like a plant. A plant? Yeah, the roots are there from the past, the shoot is coming out of the ground where it was dark and dirty. We are wiping our eyes of the residue and the leaves are unfurling, like a plant. Some times poetic metaphor sounds kind of dumb, like a plant or like a lotus. But it is useful when you want to convey an image. I think that is why we do it even though sometimes it seems so trite.

Anna is now transitioned into her condo. After a weekend there it did not make sense of her to move back to the apartment. She is mastering her stairs and that is making her legs stronger and her stuff is there. So there she is like a Sees candy in a box. A Sees candy in a box? Yeah, she is a sweet thing surrounded by her sweeties (cats, Milton and Jack, and her Casey) like a Sees candy in a box.

Being back there is awakening the routine of old. It was in Anna's condo that we were doing the waiting, the treatments, the O2 etc. No more and being there it does feel so strange. Now our normal is a new routine. There are times in the day when a bell goes off and you say, "time for treatment!" Wait, no, no more. And yesterday, another remnant of the past was found in the cupboard, her pill boxes with the regimen of CF gathered for the day to day. All pills were removed to their former bottle homes and the old boxes were dumped. The new pill routine has its own new box. I have not been dumped yet but I am looking forward to the day. I told Anna, "when you are making dinner for me, I am leaving. That will be our marker." We will see what week 12 will bring, hopefully more independence and Anna being able to drive.

We came back from our weekend break to this routine with other musings to think about. Anna and Casey are making plans for future adventures and Doug and I were thinking about other real estate, buying rugs, planting gardens, miniature horses to raise, and other fun things. As Anna said, "thank God we are moving on and thinking about other things!" And, early yesterday she declared, we are now in Chapter 2, "Play Hard"! OK!

Now, we all have to tone and get fit to do the Playing Hard part of chapter 2. On Tuesdays and Thursdays Anna and Steve work out together at rehab. Each time they are stronger and improving. I am trying now to get into the act and starting to stretch and care for my poor old sore muscles and bones. I am going to have to catch up to Anna who I am sure will surpass me at some point. And won't that be great like a dream come true............. (my favorite metaphor).

Normalcy

Just short of 8 weeks post transplant......
I changed the heading to the blog.........

A little bit of normalcy. What are the reminders of normalcy? Is it the coffee brewing with the aroma of fresh grounds waking up the morning? Is it the little things around the the house that make you smile and remember where they came from? Funny how seeing a little thing on a shelf can flood the mind with a story. Did it come from the garage sale two years ago when you were just out and about or from your favorite store that had a clearance sale? Maybe you got the best deal ever and will never forget that moment.

I see the little pig on my stove in Murphys. Happy times fill me. It was at a garage sale not far from here. A pig collection was on display spilling out of the open garage. Ladies who knew each other greeted each other with, "haven't seen you for a while." That is when I saw the smiling pig. He said, "take me home". A woman a little older than me told me that everyone gave her pigs because her husband was a cop! Funny, her friends kept giving her these gifts with a chuckle in their hearts. I thought that was so cute. I just had to have the little pig that made me want to do a little jig. Now I see him sitting there always to greet me when ever I am so lucky to get to Murphys. That is a type of normalcy for me.

Being here with my hubby is normalcy. Anna is home with her honey caring for her. That is normalcy or the way it "should" be. We have a weekend away. Anna is now well enough with no more home IVs or aerosols or any other appointments until Tuesday morning. It is as though the sun came out and offered a reprieve to the darker days. We know we are not out of the woods yet but things they are a changing. They are changing for the good with movement toward normalcy.

Things will always change. This is the one thing we can all be sure of. When we are in our darkest moments, that is one thing we can think about to give us comfort, "this too will pass". This is one of the foundations of Buddhist thought. All things change, all things are impermanent. This idea and this truth of nature and the way things are helps one to go the full circle. Some times the change is not what we want it to be but it is change. Alongside one undesired change will be another that is desirable. We just have to look for it, recognize it and it helps to accept it all. It is like the winter we have outside our windows. The beautiful leaves are gone making all things look barren yet the silhouette of the the tree's limbs reach out to the sky in such an intriguing sight. It is beautiful in its own way.

I love the winter and being in nature where I can see it, feel it and hear it. When I stand outside I can hear the silence filled with a swollen creek. The flow of water over rocks that have been there for many, many years, perhaps even hundreds of years. I listen to the swoosh and constant movements of each drop and think of the Miwoks who lived here and ground their acorns in the holes beside the creek. I can imagine the little children up to mischief splashing near their mothers.

I can imagine the hundreds of deer that once roamed on the hills. I sense the peace of the ancient ground of this place. That was normalcy for the peoples that used to live here. So much time, so much destruction, so much pain and sorrow, so much rebuilding, so much change has come and gone and yet I get to stand here and revel in the beauty and love this moment. I am grateful, grateful for it all because it just is the way it is. I will try to be kinder and gentler than my peoples' history that contributed to the pain and destruction. That is all I can do about that. I can not change what happened then. I can now honor the story and seek a better way, a better way to preserve some of this for others to come. For sure I am part of the change and impermanence this place represents. I am here now but will not be one day. Once again, I love this moment.

Normalcy is a personal and very relative term.