A Bump Up to 40.8136

Evening Waterfall at Hakone Garden

Day 44, awaiting the call for Anna's double lung transplant.

We were right. The seasons are changing. In the 60's today, grey skies and a little rain, strange year. September is a different month with a new energy. I always thought of September as the beginning of the year. Of course this was because of school but it has carried over. Yes, September is a great month for new beginnings and transplants.

There was a lung transplant last night at Stanford. It is a relief. This is only the 5th one since at least the beginning of June. We saw Dr. Weill today in CF clinic and he admitted he has never seen anything like this. There have been so few organs available this summer. Even so, the list of people needing organs keeps growing. He feels this is an aberration and there will be a cluster soon.

Most importantly, Anna will not be going into the hospital at this time! Yayyyyy! She woke up this morning feeling a lot better. We knew it would be up to the pulmonary function God to determine her destiny. If her numbers were down significantly then indeed she would go in. If they were stable then no reason to go. Amazing, it has been about 3 1/2 months since she last left the hospital and she still is holding her own and very stable. Anna is so stable that she gained 1% in her lung function. Now that is 1 measley % but it is something. When you are so used to a downward slide any thing a little different is very acceptable. All of our hard work is paying off. We are successfully keeping those lung buggers under control with rest, good food, lots of treatments, a hefty dose of laughter, and the employment of a slave for Anna, in other words, me. I am going to give myself some credit here. I know that Anna can not do all that needs to be done to make life happen on her own. I am so lucky to be able to help her and that we get along so well and have such a great time together. It is all worth it.

Another thing happened in clinic. Dr. Weill said they had reviewed the results of her O2 testing and felt that they wanted to report them differently. She needs 6 liters of O2 when she is walking but her listing says that she needs 3 at rest. They decided to correct that with reporting her O2 needs at 6 liters. This changes her number for consideration on the list from around 37 to 40.8136. This is higher than before and puts her up there with severity of disease making more of a pressing need for the lungs. This took a bit for Anna to process. It means that with the most common blood type, O, and a higher number there is more possibility of the call coming much sooner. September may be a great month for transplant as I already said.

So, no hospital for now and hopefully not until "the call", the call is very likely to come soon (whatever soon means), and we have to be ready. Are we ready? We think so, but the Tshirts come next Tuesday. We will see if the universe allows the Tshirts to be distributed first. That only seems to make sense. The Anna Banana Bunch must be ready too.

Life

Day 43, awaiting the call for Anna's double lung transplant.

While at a personal doctor's appointment in the last few weeks I saw this image on a magazine. I had to take a photo of it. It reminded me of something that happens in life when you are "out on a limb." It reminds me of believing in yourself and your actions and supporting yourself in extreme circumstances. It requires faith and trust, using all that you have, suspending the belief that you will fail or fall when things are difficult. I reminds me to be yourself and to not take your eye off the prize. There is a lot in this image. It also appears to be some kind of miraculous happening.

You know, like this image, life is so interesting. How we believe in and relate to ourselves, like the cat, and how we touch this web of personal interconnections can result in surprises. Every action we take or decision that we make may, in some way, significantly impact another. We usually do not know if we did something that was truly effecting another until time goes by and we see the result. When it does, it truly can make you wonder at how intricately we are connected. I just need to say that there are times when you are involved in things with out knowing and you do something innocent and then you look back and see that your action was significant. Makes you hmmmmmmmmmm..........

Meanwhile, as I leave that cryptic drama and step through the side curtain, I am back in Sunnyvale with Anna on the grand center stage. She has written on her blog that she is not feeling well and is tired. It does seem it may be time for a "tune up" at the hospital. Tomorrow is a CF clinic visit and she will discuss this with her doctor. Anna so wanted to get her lungs before she had to make another CF hospital stay. It doesn't look like that wish will be granted. It is important that she not let her strength dip too much, so IV antibiotics for three weeks is most likely in order.

Ho hum, not fun. She said that she needs the motivation and drive to want to do this. In past times before being on the list she was not working so hard everyday to stay well. She still had some wiggle room in her day, so to go in the hospital and work hard was OK. She knew that when she got out it was over and she could relax. That is not so now. She works hard everyday with her three treatments, etc. and being in the hospital will mean four treatments, plus the IVs, etc. It will be even harder work and when it is time to come home we will not be able to slack off. This is a marathon and we are going to finish it, but it is tiring and can at times feel grueling.

You can do it Anna. You have to do this to get to the prize. You so deserve to have new lungs one day. We must be patient. We must be willing to work hard. We must keep the big picture. It will happen, you must believe as the cat does...........

Ahhh, Salty Air

Here is a CBS news story about a new trend in CF. Everyone is going surfing! This idea must have come from the hypertonic saline therapy that CFers do. They aerosolize very salty saline into their lungs everyday to help get the mucus out. Being at the beach sounds like much more fun. If this was the trend when Anna was little you better bet we may have moved closer to the beach!

Click here and check out the video..........

News story about surfing and CF.

Recharging The Batteries

Day 41, awaiting the call for Anna's double lung transplant.

How do you recharge your batteries? Everybody needs a way to do this. If you have not yet figured it out then you are not living with balance. We need to be active and engaged, working hard for what we believe in or for the money that we need to live. We also need to find a way to let go and step back to "recharge". This has always been a value of mine.

When Anna was little, mothering was very hard work for me. It was my 9 to 5. Doug had his 9 to 5 which was actually the providing for the family, Silicon Valley grind of 8 to 8 for many, many days of his career. But my 9 to 5 was also close to 24 hours in caring for Anna for many days as well. It was hard work to give treatments everyday, raise a toddler, expect the 2, 3 or 4 year old to be acquiescent with pill taking and treatments and get up every night with a coughing child for many years. I needed recharging. Doug did too, he also was involved in caring for Anna after work, many times doing the evening treatment, but he was so wonderful to give me the chance to get away. He would take over the and care for Anna while I went away. It was special daddy/daughter bonding time. They needed this space without me to connect in ways that was unique for them. I needed change and quiet. I needed to not talk to anyone, to be able to have my own timing as to when I would get up, eat and fill my day with something just for me. Green Gulch was that place. I would go to this Marin county Zen Buddhist Farm and Retreat Center to bathe myself in quietness and picturesque beauty. The food was so wonderful, vegetarian, simple, and scrumptious.

I craved being at Green Gulch when my energies started waning, the grouch meter started to climb and I was just plain old tired. To this day I do not know how mothers with children with special needs or any mother for that matter does not need time away. I know I was not in the company of many others who would seize this time. Even though I would sing the praises of alone time and a few days without the regular routine, I could not convince some that I knew to do it. Perhaps it was because I had such a wonderful husband and the girls had such a wonderful daddy that I was able to do this. I can not imagine surviving those years without these life saving breaks at lease once or twice per year. I also think that the relationship between Doug and the girls grew during those times I was away. It was very important.

Doug and I would get away ourselves every anniversary and for many of those anniversaries we spent glorious March weekends in Carmel. My mom and dad and other babysitters would care for Anna and Sara so that we could get away once per year. It made such a difference in our relationship and in how we could "recharge" our batteries. Six years ago this weekend Doug and I rewarded ourselves and honored this part of our lives with purchasing a small country place in the Sierra foothills. It is a "recharge" center for us and the girls when they can take advantage of it. What a gift Murphys has been for us, marvelous.

We are in Murphys now and it has been 41 days of Anna being on the list. I felt that when she was finally on the list I would not allow myself to be as far away as Murphys from Stanford Hospital. It is actually about 3 hours away. I thought it would make me too anxious. Now that we are getting into the "waiting" and we realize that even though it may be any day now, we suspect it will still be a while, we have to pace ourselves and be realistic. Anna knows how much I love being in Murphys, in our little house in the country. She knows how it recharges me so she gave me permission and I gave myself permission to go for a day. If the call should come we will close up the house, jump in the car and go. We will get there in enough time. There will be hours before the surgery begins. I am feeling OK about this. I am not too nervous. I am so happy to be here, dinner outside, watching the bats and listening to the crickets........

Change Is Coming

Day 40, awaiting the call for Anna's double lung transplant.

I have spoken about listening. I have also written that there seems to be a recent shift in the energy around me and I am attributing it to the seasons changing. It is a feeling. Summer is when we are in full bloom, fully emerged with the power of the sun. The earth displays its fruits for the taking. Gardens are rich with bounty, trees are laden with fruit. People are out and about meeting, sharing, vacationing. I have been writing this summertime blog about very personal experiences in my life. Not only have I been sharing about the events leading up to Anna's transplant, but I have also offered deep inner musings. This has given me a way to connect to myself, my friends and family and a larger community.

The power of opening up and sharing all that I have has been so good for me. That is one of the rewards that comes from this creative experience of writing and sharing. This personal journey has also had another purpose, to educate about cystic fibrosis and what this disease is like to live with. I did not want to share this for sympathy but rather because CF is such a hidden disease in so many ways. When you do live with it and know its power you want others to understand what it is. Our family has experienced CF in its many facets. We know its destructive side, the side of chronic illness and loss. We also know its empowering side, the part that challenges and forces you to grow and learn. There is also the interpersonal side of the community of people with CF who need each other, understanding and camaraderie. The CF community is filled with some of the most wonderful people we have ever known.

I hope that with this blog and my willingness to be open, I have been able to enlighten readers as to what CF is. This will mean that when you meet someone else affected you will know more and can offer greater understanding. I also hope that by reading my, our, story you will connect on a larger scale to have more compassion for lung disease in general, and even larger than that, the lives of the chronically ill who struggle everyday. And of course, I hope that you are open to the miracle of transplant and the gift of organ donation.

Illness is a huge part of our human experience. In our society of preference for the young, healthy and beautiful, illness and disability is not easily embraced without a lot of aversion. No one wants illness for themselves or their loved ones but it is out there and the more we understand, the better we can cope. The less we fear it and accept it, the better off for everyone affected. Through sharing my personal thoughts about it all I hope you recognize that through assigning meaning, finding spiritual gifts and looking deeply into yourself, the disease, disability or hardship that has come into your life can be a force for growth rather than just destruction. At least that is what I have come to believe is possible.

As I said, the energy is changing. Fall is coming. It still is warm like summer but the autumn equinox is not far away, less than 20 days. During the Fall leaves turn color and are released to the ground. Life starts a path of dormancy leading to winter. People go inside and make soup and warm bread. I feel this pull to begin going inside, inside of my own personal space. This blog has been a tool for me to experience summer openness and now I sense that it is time to pull back. I am not sure yet what this means.

Drums

Day 39, awaiting the call for Anna's double lung transplant.

Listening for the winter sparrow brought me the sound of drums, Japanese and American Indian drums. At the last minute a call from Isa invited me to hear taiko and native American drumming in honor of the Smithsonian Institute's American Indian Museum in Washington DC presented by the Foundation for Hakoni Garden in Saratoga. What a combo!



The evening was perfect with a warm temperature and traditional Japanese surroundings. We were treated to the heart beat of the native drum and the lilting sounds of the native flute. Then we were awakened with the pounding and energized taiko drums that made our bodies move and shake to the rhythm. Such a deep penetrating sound into the bones, through the soles of the feet securing the connection to the ground and earth beneath.

Drumming is something I love. I have done a little of it. I never joined a drumming circle even though at one point I was part of a native American medicine circle. It was there that I had my own drum made. Recently drumming has been a therapeutic exercise of friendship with Peggy and Ron in Murphys. They have a fabulous kettle drum. Sometimes we beat and beat that drum sending its song into the valley. It feels so good. It opens you and energizes you. Such a powerful and ancient form of music connecting to that which is bigger.



Actually, Anna and I drum everyday on her back, front and sides. This rhythm is different, the rhythm is life giving, the rhythm is regular and the rhythm will end with transplant, truly what a relief that will be. Then, only the beat of the drum and not the sounds of hitting of my daughter's chest will fill my ears with that echoing rhythm. We are so ready for that day to come.

Listening For The Winter Sparrow

Day 38, awaiting the call for Anna's double lung transplant.

Waking up on yet another day "awaiting" I clicked on the file, "Fragments". This is a collection of poetry left behind by my mother. We found poems in baskets, in files and on notes stuck in books on shelves in her apartment. I was starving to know Mom better and devoured each hand written morsel with ravenous hunger. I spent hours copying them onto my wonderful MacBook. This collection of "Fragments", and her other journals of writing about time and thought, capture an inner mom that I can go to and still find tastes of.

October 1986 "We stumble along over the long road seeking to avoid the ruts and juts yearning for a path through a leafy glen that shields us from the false promise of spring from the heat and passion of summer, the cold winds of autumn and the winter freeze - yet on we go beloved, by a promise we wish to keep - winter sparrow sings along the way."

The wonderful wrap of warm mother arms in the morning with my coffee is the gift her words give to me. I am listening for the winter sparrow as he sings along the way. This is a journey of listening and listening deep.

The wonderful connection of close and dear family members who want to listen with us is such a treat at times. Family holds our history and knows some of the path we have traveled. They have listened before. And, we have listened to their steps upon a worn path too. Aunt Lenell, a great listener came to meet us today at Dinah's. She is such a sweet and caring one. Lenell is one year younger than Doug but she is his aunt. Her mother and my mother-in-law were pregnant together. Lenell in many ways is more like a sister to Doug. She is always kind and reaches out to Anna. It was great to spend time together, to listen together.

Even so, perhaps we have had enough of Dinah's. It is September now and that treat at poolside seems old and passe. The final push of summer heat is here, yet autumn is coming so we need a new place to land to listen for the winter sparrow brunch bird and what the next season will offer to us. The days are beginning to meld and look like each other. Change is needed.

Perhaps that is the stirring that Anna and I were feeling yesterday. It seemed that suddenly on September 1 the energy stopped. We took an assessment. OK, we may still have a long way to go so we need to shake things up a bit in order to not go stir crazy. Now, I understand it is the coming of a new season, the Fall that is begining to beckon to us. Not far away are the Autumn sounds of wind in the chimes, the new feeling in the air and the dimming of the sun's light. Ahh, now I see and hear with the listening ear and the gift of my mother's poem. We feel things changing. We will go with this. We will listen and find the changes in routine that we need.

Today is a special day for listening. Can you hear the Birthday song for Uncle Gary Modlin and Cousin Adam Topol? And tomorrow for Cousin Abby McCallum! Our hugs are sent to you......