Light, Life and Sunsets

It is like a mirror. You reach out to touch what appears to be real and it is only an image made of light reflections. When the light is no longer on the reflection, it ceases. It goes away. But, where? Filling the frame is something else in its place. This is what dying seems to be like. The light ceases, the image leaves. What is left is the memory. Or it is like a sunset, the sun dips and the memories of the day are what remain.

I am remembering a young man, Dan, who grew up in the same neighborhood as my children. I know this family. One of the daughters was the same age as Anna. They played together. This 24 year old young man was a friend of Sara's. They were lifeguards together at the neighborhood pool. I watched him many times sitting in that chair of responsibility twirling the whistle on a string round and round on his finger, over and over again. His job was to save the children. His job was to blow the whistle when there was trouble and to act as a big brother who could make the pool safe. But, life was not safe for Dan. Yesterday we learned that he died in Illinois a couple of days ago.

Such a dichotomy. Life is filled with so many personal and poignant stories of sadness and loss. And this sad story touches our family as we fight for the life of our daughter. Some leave the planet early and there is no why, the light ceases. Some are saved only by a miracle and the light increases.

I always knew that I was fighting for the life of my child. This young man's mother never knew her son would have departed at such a young and tender age. In a way, this is a gift that is given in situations like I have had. As hard as it has been, I have been conscious about this path. I have known that there would be an untimely end. It has been a child's lifetime of preparing and seizing the moments and tasting the moments with all the buds in my mouth. I knew that each moment was precious. I hope that she did too. I think she did, as she is a nurse, a caregiver, and a woman deeply interested in chronicling life through photography.

When life is young it only makes sense that life will continue and grow deep into oldness. Sometimes it is taken for granted that the light will never go out until later. How else could we cope if that is something we always worried about for everyone. We have to have faith that it will continue for our healthy children or life would seem meaningless. But when you have a child whose life is truly in danger there is an awareness that heightens and if you let it, an appreciation grows making each moment count. This is a gift given to all of those that have to deal with serious illness, if they are willing to receive it. I hope that each moment of Dan's life is savored by his family. Each smile is remembered, each crazy little thing he did is fondly thought of. My heart is sad for his loss, and goes out to the family.

And then again at this time of struggle for life and the joy that will come with a miracle, another person will die and donate organs. This journey is so mixed with it all. Yesterday I also received an email from a dear friend who has been thinking about this and sent me her words on how she views this karmic situation.

"I have been thinking a lot of your situation with wanting the transplant, but then realizing that someone must die in order to give the gift of life to Anna. But we know that people are dying every minute of every day all over the world. Young and old, healthy and unhealthy and it is the circle of life. These people have all had the grace of life. We are all going to die and we don't know when and that is part of the big mystery.

Someone is going to die in this world who is healthy right now and they will give Anna their healthy lungs. They have made that conscious decision already. They know that if they die and they have healthy organs that they will donate them and that knowledge I am sure makes them happy. Happy to know that when their life is over in some way they can still continue to add to the quality of life in this world. They will let Anna live a longer, healthier life and then she will shower her world on Casey and you and Doug and Sara and untold other friends and family with her love and grace, and then you shower me and Bill and untold other people with your love and grace and it goes on and on and on and on.

We all do that when we are alive and even after we are gone but some people get to give a super turbo charge of grace to the universe by making such an unselfish and loving gesture of organ donation. Wow! What a wonderful person for Anna to receive lungs from. I am going to send that person and all people thoughts of loving kindness." Thank you so much, Peggy.

The gifts that Dan gave in his life will be too many to count for those that loved him. He will always be alive in the hearts of those he was close to. This will also be true of those who are so fortunate in their passing that they are able to offer organs to save lives. May all of these losses have meaning. May all those mothers and loved ones that are left behind receive comfort and recognize the gift of life, the grace of love and the special light in the eyes of everyone they pass by every day.

A Day At The Spa?

We went to a clinic visit at Stanford yesterday, haven't been there in a long time, just kidding..... It is such a familiar place in our lives. I think I will mention in defense of the hospital that Stanford has its drawbacks because it is such a large teaching institution filled with fallible humans making decisions all of the time, but it has also made a lot of improvements in the last few years. Not to sound like an advertisement or that it is a spa, the food is really good, it has become much more patient centered, it has gorgeous gardens, wonderful art to look at, great nurses, favorite respiratory therapists, and has great stats on lung transplant just to name a few things important to us.

As for the patient centered part, Anna and I had the opportunity in the last year to join a few other members of our CF community to help create a CF Adult Patient and Family Advisory Council with the urging and blessing of Dr. Weill, the Adult CF director and the director of the Lung Transplant Program. At the same time I was able to serve as a liaison to the larger Stanford University Hospital Patient Advisory Council and assist in its formation. This is the first time the hospital has had this type of group formed. It is a testament to how things have changed. The administration listens to the patients, and actually makes adjustments to make the hospital and clinic experience more supportive and healing for the patients. It is quite remarkable. Unfortunately Anna and I have had to resign from the CF group because of our new task at hand and I have taken a leave from the larger council. I hope to return to it in 6 months. It has been a very rewarding experience to serve on that board.

But yesterday, we visited the CF clinic. Anna is stable. Good news. Her PFT (pulmonary function test) revealed a FEV1 of 28%. In past visits, this dreaded number would have brought tears, denial, and fear. Now that she is on the list and her listing number is determined by such statistics we applaud it. Now it is, "Yes! a 28%! I am still in that window!" It is a different attitude to say the least. In fact, there is even openness to if it slipped just a little because maybe that will up the score a bit. But, we don't really want that, staying stable at this level is just fine and not too scary. This is just what it is like on this side of the fence. We want to get on with the show.

Anna wanted to know what her transplant profile looked like. In asking her doctor she learned that she has so much in her favor and she is in the "sweet spot". How sweet it is, that is if she can stay this way until the lungs appear. She is so proud that there has been no serious down slide and that she is not headed for the hospital for a tune-up at this time. She has made a goal or a wish to not enter the hospital until it is time to get the new lungs. I hope she makes it. She is so done with CF care.........

Since we know that hospital so well we realized that the "massage clinic" should be up and running in the afternoon on the third floor. Chair massages are available for out patients, staff and other hospital visitors for $15 for 15 minutes. It is a special and needed treat when dealing with the tough stuff that goes on in that place. Anna's favorite masseuse was there. So, another advertisement for the hospital and how it has become so hospitable.

I also did a little Flip Camera filming of Anna in what may be the "last" CF Clinic visit of her life. Another appointment was made in 6 weeks, but we will see where her CF lungs will be at that time, in the lab or in her chest........... So, this was a monumental visit. I was filming because we have been invited to tell our story at this crucial moment on film to be included in the documentary film, the Power of Two. This is an honor for us. The film is centered around our dear friends Ana and Isa and the results of their miraculous lung transplants and their advocacy for organ donation and transplant awareness in the US and internationally.

It is different to share naturally on film. We have to get used to the camera eye. We will see if there is anything useful to add to the film. I will share more about this in future posts. But for now, all is good, and we wait.

LISTED! And Other Serendipity-Do-Dahs.....

It has happened. What we have been waiting for is now here. I am getting my feet under me. Anna is adjusting from the adrenaline rush and is excited about this "Holy Shit" moment. We have been waiting, fretting, preparing and now the energy has shifted. Anna is listed in the lung transplant registry with a number, 37.7074 and is the 13th on the current lung transplant list at Stanford. Did you hear me, she is number 13! That is her number in life, born on July 13th it has been a number that she always identifies with! It is also on my apartment door, 1513. I knew this was the right apartment when I saw the address, of course, the perfect place to wait for Anna's transplant. Could anything be more perfect? Of course there is more as you might say, serendipity-do-dah.........

I found out today another reason why this apartment was so right for me. When I first rented the apartment, over 1 month ago, Doug suggested that I should first know who the upstairs tenants were as maybe they were noisy or..... "How am I supposed to do that?" I questioned this seemingly tricky and impossible task. The day before I signed the lease I decided to walk over to the apartment in the early morning to listen for noise, especially train noise. While walking around I stopped a man walking his cute Tibetan Terrier. I asked him what the complex was like and he was positive, a good place to live. A little while later I ran into him again and we talked a bit more. I told him which apartment I was going to rent and of course he said, "I live above that apartment. I am your neighbor." OK, this is the way things have been happening since day one on this journey. I should not have been surprised, but I was........

He continued to tell me that he was so glad the young guys who had been in there left as they were partyers and very noisy. I assured him I would be very quiet. So, today, a woman stopped me and introduced herself as his wife who lived upstairs. She told me that her husband was very disturbed by the former tenants and their noise so that now he thinks that "that woman downstairs is a miracle!" because I am so quiet. Can you believe it, I am the miracle! And to top that, after I poured my heart out with why I was renting the apartment to be near Anna she told me amazing news. She knew all about lung transplant because her nephew received a heart-lung transplant at Stanford 13 years ago because of, you guessed it, CF! He is doing great! She lives above me! She wants me to come over for a glass of wine and if I need anything she wants to help. My question, who is directing this play anyway! Who ever it is is in love with magic and connections and making this feel like a storybook.

When Anna got the call I was in SF getting my hair cut. After morning treatment I zoomed up to have Isabel cut my hair as one other thing to get off of my to do list. while I was gone Anna's friend Emily visited Anna. They celebrated Anna's July birthday and she gave her a gift of a sweet string bracelet with a tiny lotus. The card that came with this special jewelry titled this piece as "New Beginnings". Out of the mud the lotus grows in the sun to a new day. Emily tied it on as they both made a wish for Anna's new beginning. The card says that when the bracelet falls off or is removed over time the wish comes true. They said their friendship good-byes and just two minutes later the phone rang. Anna was officially approved. She was listed at 3:10:59 on 07-27-2010. The power of love from Emily helped to empower Anna to accept this news and shift to the new position, LISTED!!!!!

So, now that means, any time, really, any time. Am I ready? No, wait, I have some adjusting to do. I need to settle into this mode, this is as Anna says the "Holy Shit" mode. Doug and I still have to set up our phone and email lists.......... anything else? We are all excited, scared and energized. Well, maybe that is all we need to do. I guess we are ready. My hair is cut, the bills are paid, we have many options for Roxy. So, it is any time. That feels so immediate, so now, but I know it could be months from now. I know I am not in control, or am I? Am I the director of this play? Who is? Is it energy follows thought? Or is it thought follows energy? Do we create our own realities? Are we at the mercy of another creator? Such questions to ponder......

And, to complete this monumental blog post I want to send love to the donor family. It makes me stop, this is serious and a somber moment as well. We are traveling into a confluence, a circumstance with many emotions and consequences. One tragedy will turn another tragedy into a triumph. One grief will turn to joy and hope, and one new grief and woe will begin for another. Take a moment to contemplate this. Take a moment to hold this gently, seriously, consciously, gratefully, respectfully. I take this moment and feel the rawness, the piercing emotions, the deep meaning, the profound opportunity. Om Mani Padme Hum....................

The Possibilities Are So Amazing

Note: photos shown are of Sara swimming. I do not have digital photos of Anna swimming....

Got an email yesterday that the swim team in our former neighborhood won its league championship for the first time in 22 years. Such a poignant time to remind us of that day 22 years ago that was so very special. It also gives me an entree into telling you a bit about Anna's childhood.

Anna discovered swimming when she was 5 years old. I will never forget when she first learned to put her head under water. Once she did, her curly top would surface only as air was needed. She fell in love with the water. Not only that, on that first night of head bobbing, she slept all night for the first time ever. I had never had a full night's sleep with Anna until swimming came into our life. Anna would waken every night coughing. I had to get up with her, do a percussion treatment and serve milk and cookies before returning to bed. We both also napped every day to make up for lost sleep at night. Swimming changed that and helped her lungs to get clear of the mucus, thus also improving her health.

We moved into a new neighborhood that had a community pool down the street and Anna's childhood consisted of her "pool rat" activities, silly antics and her deep love of of our community and swim team. 22 years ago not only marks the anniversary of the last championship for the team but it also marks a miraculous time in our family's life. The day before the meet Anna's dream of having a baby sister came true, Sara was born. Because I had just given birth, no trivial event, I and Sara did not attend the all day swim meet with Anna and her team mates. Doug went with Anna and has a video to prove his pride. Moving video shots show Anna's skill as a little whipper snapper swimmer and the sound is filled with a father's screams of encouragement and delight at her winnings. Anna won the championship high point in her age group along with the team winning the total championship after many years of defeat. It was thrilling to say the least.

Only a handful of people really knew the miracle that that day was for Doug and I. Five and a half years before Anna lay in the ICU at Stanford Hospital for 5 weeks on a ventilator. That is when she was diagnosed with CF. We could have easily lost her at that time but she survived. It was not clear what course her disease would take especially with such a serious presentation of pneumonia. As she grew into her young life we learned the ropes of CF and she recovered from her serious acute event. When she discovered swimming we recognized that she was a natural and beautiful swimmer and fast. The record for the 6 and under girls butterfly at the pool is still held by Anna. She is very proud of that.

Growing up around that pool was the best and healthiest antidote for CF that she could have had. When Anna was about 11 her desire to compete waned. She could no longer keep up with the other kids her age because of CF. After being such a powerhouse it was hard to fall behind so she stopped swim team but continued loving the pool and later became a lifeguard.

Memories of the gift of swimming for Anna and her miraculous spirit and athletic ability fill the pages of her history. The joy associated with our connection with the pool and swim team fills my heart with so much gratitude. Our life was filled with the worry, constant treatments, days of illness, pills, Dr. visits, and all of that but it was also filled with hope and fun and a community center for Anna and Sara to grow up in. (Sara also won a championship herself at the time of the blog photos!)

And, now Anna is in a new race. This is not the butterfly this time. This is a race where patience, tenacity, will power, modern medicine, courage, karmic confluence, and miracles are needed to win. Anna is poised on the starting block still waiting for the final word that she is listed so that when the gun goes off she can dive into a new life.

And, Anna talks about swimming again with her new lungs. This week is the U.S. Transplant Games. Some of Anna's friends with transplanted lungs are going to be there to compete. It is an event filled with the miraculous stories of transplant recipients and new lives. What a day that will be if Anna decides to take up her form and try butterfly at this event in the future. Wow, what a day that will be if she chooses to go and to kick butt! You bet we will all be there screaming as she swims down the lane just like when she was a young girl winning and swimming her heart out on Greenmeadow Swim Team. The possibilities are so amazing.........
No wonder Anna chose to have this tattoo!

The Full Moon and Two Peggys

Crickets, a long sound and a quick, repeated thousands of times at night. Warm air scented with pine, animal screams and odd sounds in the trees, a skunk, or a possum, or an alien sort, I do not know. A full moon rising from the east soon to lighten the dark. The moon is a woman's ancient measure of time. Lunar light reflects the feminine. Night time gazing at a moon connects women to women where ever they are on the earth. There is a bond unique to the sex, cyclical and mysterious.

I sit on my deck one story higher than the critters crawling around below. I am safe from their antics and they are safe from mine. This is a summer night warm and comfortable but a very different place than in the morning with the sun light upon the shadows after the creatures have returned to their lairs. I am back in Murphys again, now on a full moon.

I did not think we would be able to be here again this summer. I thought Anna would have been listed by now but we are taking advantage of this time. Anna said, " we need to have fun, all of the fun we can, now." So we are obeying. In the light of this moon that we saw rising with the sunset as we drove into the foothills I am enjoying the night and thoughts about two women that I know, that I connect with.

In honor of "we need to have fun", today has been fun. We enjoyed friendship time in Livermore with Peggy and Bill and arrived here late to spend tomorrow on the lake with Peggy and Ron. I have two Peggys. Everyone should have two Peggys. Well if you only have one, you are doing pretty good but with two it is amazing. Peggy "1" and Peggy "2" are the best type for friends. They are special moon time friends, intelligent, sweet, kind, and giving. They also have a special quality that makes for a real friendship, they care and are not afraid to become involved, to ask questions, to learn about me and our situation, to be there. I love to be with them and to listen and to give to them too. Just who they are makes me feel loved and want to love back, like a reflection of the moon light.

When we arrived tonight Peggy "2" left a bouquet at our front door welcoming us home. Wow, so thoughtful (and that means her Ron too). All day Peggy "1" was such a fun and devoted friend (along with her Bill). I am so blessed to have two Peggys especially because I have these different places to live. So, no matter where I am, I have a Peggy!

Full Moon, two Peggys, evening air, distractions from the wait. Life is good. Yes, life is very good when you have two Peggys.............

Definitions

Patient: adj. 1. Enduring affliction or pain without anger or complaint. 2. Understanding & tolerant 3. Persevering & steadfast. noun: Someone receiving medical treatment.

Impatient: adj. 1. Unwilling to wait or tolerate delay: restless. 2. Expressing or caused by irritation at having to wait. 3. Restlessly eager. 4. Intolerant.

Wait: v. 1. To remain inactive until something anticipated occurs.

Restless: adj. 1. Without rest or quiet. 2. Unable or unwilling to rest or be still. 3. Nervous and fidgety.

Intolerable: adj. 1. Not tolerable: unbearable. 2. Inordinate and excessive.

Time: n. 1a. A continuous measurable quantity in which events occur in apparently irreversible order. b. An interval bounded by 2 points of this quantity : duration. c. A numerical measure of this interval, as in years, days, or minutes. d. A number representing a given point, as the present, as determined from a given point in the past. e. A system of numerical measure for this quantity.

Friday: n. The 6th day of the week.

Websters Dictionary

Breathe in, Hmmmmmmmmmmmmmm, Breathe in, Hmmmmmmmmmmm, Breathe in, Hmmmmmmmm........

Another Birthday

Both of my children were born in July. This has always been a big birthday month for our family. Doug's dad, my mom, Doug's grandfather, and our girls. Yesterday, on July 22 our Sara turned 22. That taste of Yakko sushi was still causing salivation in Sara's taste buds so we returned for round two last night. Another celebration together. These birthdays are so particularly special this year.

Our children are our jewels, our flowers we watch open and reveal themselves. What great fortune to be a mom and have two wonderful daughters with great inner strength, a sense of humor, a deep compassion and inquisitive minds. Mind you they also have curly hair, their most special trait. I wonder where they got that? Again, it was my mother's fault. We wear our curls proudly.

It has been tricky to mother two in the midst of CF. Other moms dealing with raising a chronically ill or disabled child knows how tricky this is. In my case the fact that they are 7 years apart was an advantage. The first 7 years of Anna's life was filled with adjustments about how to live with CF in the family. That included hospitalizations, doing treatments 2 to 4 times per day while watching Sesame Street, Mr. Rogers, and Care Bears; trying to get a 2 year old to take their many pills, eat, and generally cooperate with the program; and begin elementary school where the nasty viruses hang out waiting to descend upon CF lungs. Those years had their moments, but by the time Sara was born I was in the flow and we had figured out how to do it.

Anna was about to start the second grade when Sara was born. While she was at school I had alone time with Sara. I think this was important. Anna was a whirlwind, not only because of the disease and its constant demands but also because of her personality that loved being the center of attention. I could tell that Sara was to be different in her personality. I knew from early on that Sara had a deep soul and that one day in spite of the age gap between the two of them Sara would be the greatest sister that Anna could ever hope for. And, I believe that has been proven to be true.

I always wanted Sara to feel that she is as special as her sister who demanded so much attention and concern. For parents in our situation this took extra care and consciousness but I also sense that the being that Sara is came into this situation with a task at hand. She has grown and developed who she is within the context of this powerful aspect of our family life. Watching CF and being a part of it has caused wounds due to the chronic grief, but it has also sharpened her strengths and ambitions.

Sara is very happy at this time in her life. She has her Lou who is so wonderful to her. She has the time to help care for Anna. She has an interesting and challenging job. She has a dream to be a doctor one day. What more could I want?

Mothers tend to wonder, did I do enough? Where could I have done more? I can find many ways for improvement in me, but what I see in my two daughters is that they are my shiny jewels.

And we are STILL waiting, and Sara said, "so I did not get my present." She wanted Anna to be listed for her birthday. Anna responded, "I did not want it to be on our birthdays, it should be on its own day." So, now that the birthdays are past, perhaps we will finally hear, today? Or do we have to wait until next week? OMG, I do not like this waiting thing.............

Note: we did talk with the transplant program today. They confirmed, we are all still waiting, someone has the paperwork on their desk, somewhere......a phone call needs to be made soon to give final approval........insurance bureaucracy...........I am sure you all have heard of this beast.

Serendipity Visited The Morning

And just when I have an intellectual burst........... there it is again, the magic, the serendipity reminding me that indeed it is not all as solid as it appears.

Wednesday morning I was out to do errands early before treatment time. I had to go to a market that we have used for many years. One of the clerks there has become a good friend over time. She has had a connection with us for at least 20 years. I remember first telling her about Anna having CF and she told me that when she was much younger, she had a boyfriend who had CF. He passed away as a very young man. She understands CF. She also just recently met someone else with CF and her mom whom we know. It is funny how she is connected. It is always a comfort to see Mary. This is also because she is such a warm and pleasant person. Along with buying the peaches for a cobbler for Sara's Birthday on Thursday, I wanted to give Mary an update on Anna.

Near the cash register Mary and I hugged and I told her that Anna is a hair away from being listed for transplant. She told me that she knows another customer whose granddaughter with CF just had a transplant too. I wondered who this other family was. Did I know them? At that moment, the customer she referred to walked up to us. I was introduced to Marilyn. OK, I guess the timing was right there.......... Marilyn decided to go to the market too. Were we nudged by invisible winged ones to get to the market in time to converge at precisely the same moment when Mary could make an introduction? Makes you scratch your head, doesn't it?

Like I said, serendipity visited the morning and brought with it a happy story of transplant. Marilyn's granddaughter, Katie, is 20 years old and had a transplant in May. She was very very ill prior to receiving her new lungs. She had to be carried up stairs in her home and was very weak. Now she is home and bounding up the stairs, driving, thriving and thrilled. She is doing fabulous. We commented on the miracle and what an amazing change this brings to these people who suffer from CF. Our meeting made me feel that things are unfolding as they should and as they will. It happened for Katie and it can also happen for Anna and we are counting on it.

Thank you Oh Winged Ones, it was wonderful to receive that gift this morning. It was a gift of encouragement and a gift of magic. It was also a gift of remembrance of my mother. As I talked with this grandmother who was beaming about her granddaughter I thought of Mom, my daughters' Grammy. Where it would be so hard for Mom to witness Anna's decline in health and I could not care for both of them at the same time now, I wish she could be here to see Anna after transplant. I wish she could see the miracle. But, the truth is we are not there yet. We are still setting the stage and hoping for this wonderful outcome. It is still a dream and not a reality. This state of unknowing would be so hard on my mother. We have to wait. We have to sit on the edge until the time comes. Mom definitely would not like that. Tears cleansed my eyes while talking with Marilyn because I missed Mom and wished she could be here for the good part.

Hey, was it Mom with her new wings that tapped us on the shoulder putting grandmother Marilyn and me together at the same time in Mom's favorite market? Hmmmmm, something nice to consider.

An Internal Intellectual Discourse or Simply, Why?

I woke up thinking. What is this spin I am putting on my experience? I am aware that things happen. They do, things simply happen. CF simply happens because of the genetic reality in the physical world. The universe has certain physical laws that cause things to happen. Things are connected in life and when one thing happens it is like dominoes and that causes other things to happen. Perhaps this physical causality is all that there really is. Perhaps these ideas that look for meaning in the happenings are just made up. And what if they are?

I believe this is about what makes the human experience unique. It is why humans look for spirit and God. It appears that animals in their realm are much more able to Be with the physical workings of the universe. They just are. A rabbit does rabbit-ness. They jump around the garden, hide in holes, eat greens, make babies and if the coyote comes, gets eaten. No drama, just what happens. It seems this is not so for the human.

The human has similar functions to the rabbit, he sleeps, runs around, makes babies, eats and also is devoured by circumstances. But the human is different in that he is creative and has drama. The human has made tools that he uses to influence and shape the world. The human contemplates when the sun goes up and the sun goes down. The human watches the rabbit and the coyote and says, "no coyote is going to get me", and builds a house. The human finds ways to not meet up with the coyote and creates stories as to why, in a day, the sun goes up and the sun goes down.

Essential to our nature, we are creative. Also essential to our nature, we have "feelings". I suppose that rabbits have feelings too. They can sense and feel when a coyote is near. That is why they have learned to burrow. We can feel like that too, but we also have feelings of emotion and grief. And we have creative ways that we cover up our feelings. This is also so human and not rabbit like. Instead of letting things be as we grow and mature we create ways to "cope" with the feelings we do and do not like. We create a storyline, our own personal storyline. This is so uniquely human, don't you think? Is there anyone that you know that does not consciously and unconsciously participate in the creation of their own storyline? I don't think a bunny does that. Of course, I am not totally sure of that. It does not appear so because of the simple nature of a bunny's life.

So, this has to do with my spin. Life happens. I live it. I experience it. I choose with my mind to find meaning in it. I create my storyline. I create my beliefs. I create a blog. In this blog I am using my feelings about my experience and painting a picture from a creative perspective. This is a perspective that seeks to find meaning in my experience. Because, I believe, there is no better way to live it. For me, meaning gives depth and richness to the taste of living. It gives color and shape and hope and lightness to "what happens". It gives us a way to communicate and connect on a feeling level. Humans need relationships with each other, they need to connect, especially when they are troubled and challenged with illness and other catastrophes.

Because humans see so much; because they can study the interconnectedness and mechanics of how the coyote sees the rabbit, how he hunts, how he kills, and how he digests, the human is stuck with the dilemma of his own intelligence, creative mind and feelings. What I am learning about in my life story is that reacting to the feelings that come up in me creates drama and a story that is difficult. Feeling the feelings when they arise seems to open me and lets the creative juices flow. This seems to be the way to experience life in more dimensions, with more possibilities.

So, why is it that I am writing about this internal intellectual discourse with you? I guess it is because I woke up, felt the urge, opened the computer, and wrote these words. I needed to put on "paper" this personal understanding, this way of explaining why I am sharing what I am. I am seeking ways to go deeper into the feelings that arise in me and to deliberately create and find meaning about my experiences so that they are, "not to be for not". To make this life with CF more than the rigor, the pain of watching my daughter and my family suffer from the inconveniences and challenges of this yucky disease is important. Each moment gives me a chance to choose how to think, how to respond to my experience. I am grateful for what is, I am trying my best to find the meaning, the growth potential, to better myself and maybe by sharing, to help you. To simply make this "not for not". That is what being human gives me. No circumstance can take that away. That is why, why for it all.

Sit On The Patio

We are trying to get ready. There are all of the regular things that have to happen in a day like sleep, treatments, aerosols, cooking, eating, laundry, etc. and then there is the checklist for what needs to happen before the event. A lot has been checked off and today we did a little bit more. Anna needs to pack a bag ready to go to the hospital. The transplant program gave her a list of what she should bring. Having been to the hospital for numerous, numerous long hospital stays already, she has a "CF" bag packed, but now this will be a transplant bag. There are a few new things needed. So, we went to Target and found the perfect things, comfy jammie things with openings in the front so the incision sutures can be cared for and a few other odds and ends.

Still need to complete the Advance Directive (what to do if things go wrong and who makes medical decisions) and have it notarized. Anna is finishing up her instructions on her medications and where and how....... and then we need to finish our phone tree and email list for notifying people. Hope to get that done this week too.

And then there is the very important task of having our heads screwed on before the call. Mine is definitely not........... after treatment this afternoon I took the garbage and recycles out while Anna laid down for a nap before dinner. I closed the door, marched with trash to the bins outside and returned to a locked door. Oh my god! I did not have the heart to wake her so, I sat on the patio, and I sat on the patio, and I sat on the patio. I did have my phone in my pocket. It will never leave my body after we get the call that she is finally listed. Thank goodness it was with me today. I called, she slept, I called, she slept. Then I called again, she went for the phone as I waved in the window.......... could not stop laughing......... guess I learned my lesson about checking the door lock before I close it. Dinner was a bit late tonight.

But did I learn another lesson that I need to learn? Having the door closed when I wanted to enter and not having the key with me to let my self in requires a type of letting go. I had to wait. I had to wait until the time when someone, Anna, would waken and open the door for me. What was I to do? I could get mad, I could fidget, I could run away, I could pound on the door, I could scream, I could do a lot of things. I chose to sit and enjoy the patio and I did. But, I did decide when it was time for this little adventure to end. I did decide that it was time and did the calling, trying to cause Anna to wake up. I tried to have some control in the matter. But, guess what, when we are waiting for "the call" I won't be able to use my trusty cell phone or email or knock on the door to urge the door to be opened. I will have to let it be opened when "it" is determined that "it" is time. How am I going to respond to that? I think I will go a little crazy. If it goes on too long according to my timing I think I will go a lot crazy. So, I better learn this lesson and end my suffering.

Sit on the patio. You just have to sit on the patio. There is nothing else to do but to sit on the patio and when it is time, and not the time on my watch, the door will open. This is Zen practice. Don't we all need to learn to "sit on the patio"............

Meanwhile when are they going to finally call?????? When is she going to be finally listed???? This waiting to wait is driving me crazy!!!!!!!!!

Oh Yeah, SIT ON THE PATIO and Breathe..........

Wings, Lungs, Feathers and Prayers

It is an image that I can not get out of my mind. A pair of healthy lungs, pristine, unencumbered with karma, floating in the blue sky in front of my mind's eye, ready to be claimed. They look like wings of a bird, ready to put on. This vision is a gift from Wendy. My dear Wendy, a deep spiritual soul sister who has been my friend for 30 years. Her love, support and spiritual guidance has been so important to me ever since we met.

Wendy tells me that we are surrounded by wings and light beings. After my blog post about the crows, crow feathers came to her daily. She believes as I do that feathers and birds are messengers from the spirit world. Through the image of feathers, through the honoring of feathers, through the openness to the lightness of a feather we can find a portal to our spirit world.

The other evening Anna painted these feathers. They came to her spontaneously. Their ethereal quality of light, color and floating movement remind one that they come from a different place. Are the light beings close to us at this time? Are we being inspired by their presence? It is such a remarkable time that feelings of spirit can not be avoided.

Last week we found a nest in a hanging geranium on Anna's patio. She knew it must have been there. Anna watched this Spring while the nest builders visited the hanging plant frequently. When I took the plant down to look, there was a magnificent specimen of art and spirit lovingly fitted into a safe spot between the sturdy stems and green leaves. The nest was perfect and woven into its bed were strings of shiny golden tinsel. The birds must have found these remnants of last Christmas near by. Gently woven on the top they provided special royal blanket threads for their young. Being abandoned and now left for us, it was a jeweled nest, a gift from the bird world.

Anna is aware that many people are praying for her. She can feel these good and supportive thoughts of faith and spirit. They touch the heart leaving a lightness like a feather. A testament to this community of prayers was given to her this weekend by a dear friend, Courtney. Many months pregnant, tummy bulging and very close to spirit in her state of being, Courtney came from southern California to visit family and to see Anna. She brought a gift from her church of a prayer quilt. The quilt is knotted with threads carrying the prayers for good health and new lungs by the women who designed it. It is a beautiful gift.

So much love.............

And Wendy, that image, it can not leave me...........

Sara Waits For Transplant"s"...

She wants to be a doctor. Sara has wanted to be a doctor since being a young child. She is now graduated from UCSC in biology and determined that she will go to medical school. Life is giving her a unique and special training being the sister of Anna. She has always lived with CF in the family and she is now participating in Anna's care and support, gaining first hand knowledge of lung disease, chronic genetic illness, and of course its impact upon the family. Sara also has an amazing, incredible job at Stanford University that is adding depth and drama to this whole experience.

In June Sara began working in the Cystic Fibrosis Research Laboratory at Stanford. As a lab assistant she performs many functions but one of them is quite special and serendipitously related to our current lives waiting for Anna's transplant. Not only is Sara waiting for Anna's transplant as a sister, but her job insists that she waits for all lung transplants at the medical center. One of her functions is to go to the OR and retrieve the transplant recipient's old lungs or other airway tissues after they are removed and take them to the lab to be studied. She carries a pager like the doctors, calls in to see if there is a transplant expected and knows how many people are on the list. It blows my mind.

There have been no lung transplants for weeks and weeks until this weekend. Sara had not yet had the actual call to retrieve tissue from the OR until this weekend. On Friday eve she knew a lung transplant was to be performed before she traveled back over 17 to Santa Cruz. She called us, so excited, "finally now I get to go to the OR!" This is thrilling for a young woman who is wanting to go to medical school and become a doctor. This is also emotional and an unusual part of the transplant adventure she is having with her sister.

Sara only slept in fits and starts through the night at the apartment as the surgery was delayed and delayed. When it was time to go in the morning she told us how she was shaking from excitement and first time nervousness as she donned her gown prior to entering the room where the miracle for this person was happening. Wow, Sara, what a trip! She said everyone was warm and friendly, it was a good atmosphere and huge to step into the space where a lung transplant was happening.

On Saturday, Sara slept the afternoon away after her incredible high. In the evening she was to visit friends when she called us just before 11PM, "can you believe it? There is another transplant tonight. I am getting gas and going back to Stanford!" Two in a row! I guess the drought is ended. This morning she just called, "I got to hold the lungs in my hands!" Sara also met the recipient before entering surgery as he had been on the list such a short time she did not have the signed consent form to use his lung tissue for research. Sara also met the family and saw what it is like to be where we will be soon. And, when in the OR for the lung retrieval, she beamed positive energy to the recipient in the process of the miracle. Hmmmmmmmm. That is all a mom can say at this point.

It is so remarkable to think of Sara in this position. Her professional life and her personal life are intersecting in such a profound way. This happened before. In Sara's junior year at UC she became a hospice volunteer. The training was deep and poignant. Right after she completed the training, her grandmother lay dying. Sara used her training and sat in vigil with her grandmother with grace and poise. This personal intersection was emotional and very important to her. It seems that this occurrence of circumstances is a way that life is bringing a unique practical training to Sara. It is also bringing a connection and insight into transplant that we would never have along with a drama that heightens and ups the anti of our story.

Isn't it amazing how things fit together? Sara's life is just an example. Isn't it amazing how when you open and follow your life stream that you are given opportunities to grow and expand in ways that are surprising and wonderful? This is a universal human truth. You just have to be open and willing. You also just have to step back and take stock at things that have happened in your life. What was the pattern? How did it fit together? There seems to be a progression. There truly seems to be a story unfolding. This is the wonder and magic in life no matter the experience, joyful, painful, complicated, simple, or what ever........... We all have a one of a kind, special story.

In her story, Sara waits for transplants. She is learning so much in this job, but of course she is most interested in the one call that she will get along with all of us for her sister to go to receive her miracle. Sara will sit with us as we wait for what we hope for, Anna receiving her donor's gift. Someone else from the lab will have to retrieve Anna's old lungs to be studied in the lab. Sara will be with us holding our hands waiting for the surgeon to come to our waiting room and tell us how the surgery went. But, we all will want to visit Anna's old lungs. They will be kept for us after dissection and study so that we can see them and thank them for every breath they took.

Comfort Food

It is Friday, it has been a month here in the apartment and I have 5 empty containers of Trader Joe's Goat Yogurt (yes, I am lactose intolerant and thrilled about goats and their solution to the dairy issues). I will be marking the length of my stay by how much of this comfort food I consume. Am I already getting loopy? We are still in the waiting to be waiting stage. Hopefully next week that will change.

What we learned this week:

• birthdays can always be fun.

• a visit to endocrinology was invaluable. Anna's endocrinologist helped tune us into the importance of blood sugars and healing after the surgery. Because Anna's CF Related Diabetes began after she was an adult and on her own, I am not that versed in this disease. I have given her a shot or two of insulin but she has been managing it. I need to write down her formulas for carb counting and get the groove on because after surgery Anna will be a bit on drugs and she will need me to be advocating for her for endocrine consults and helping to keep her sugars low and well under 300 while she is on prednesone.

• it is terrifying to sit near someone having a TB test read in the waiting room and hearing it is positive! The heart starts pounding, the mind starts racing to how the nasty bugs have already entered your body, causing its ravages. But the reality is, it is safe. This woman was as quiet as a church mouse and never coughed. Thus, even though it most likely is not an active case she did not spread her germs. Having CF causes a terror about viruses and germs that is only going to be heightened when immuno suppressed with transplant. Lathering antibacterial gel all over arms and legs can help get rid of the hebbie gebbies.

• the instant swelling and continued fluid on my knee was caused (Dr Watson was right in the first place) by the rupture of a cyst because of a tear in the meniscus due to use and wear. In other words, age. Great! Well I will continue to elevate, ice, take anti inflamatories and as I was told, no more running or pounding pavement. I will be taking up swimming again and the elliptical. When I have time????

• comfort foods help a lot. When you have a favorite routine or food, the body and mind settle in. Goat Yogurt in the morning with berries and banana is my comfort and the way to start the day, with coffee of course.

You know the joke, "how many (___) does it take to screw in a light bulb?" Well, the question here will be, "how many Goat Yogurt containers does it take to witness a miracle on order?"

It Is Such A Journey

Yesterday Sara woke up here in the apartment saying, "I kept waking up last night because I was dreaming over and over that Anna had her transplant and she was taking big breaths saying, I can breathe." Wow, Sara.

I was dreaming too. In my long dream there was an evil force trying to take over. It appeared in the form of an odd person or being with bad intentions. When his scheme did not work another aspect came into the dream to try to thwart me in another way. I did not run away. I was aware of the threat and felt scared. I dealt with the force by asking probing questions and diverting its energy. I became curious about the manifestation of the evil force and was trying to learn about it. This seemed to keep it at bay.

Don't run away from fear and anxiety. Become curious. This is a teaching that takes practice. This experience is giving us all a lot of practice. Running away is not an option. Being curious is helping us all to find new places of strength within ourselves. What ever happens, what ever the outcome we will use this time to learn and grow. It is the only palatable option.

One of Anna's favorite sayings as a kid and teen was, "Don't Let Your Fears Get In The Way Of Your Dreams." She had a tee shirt with this saying blazoned on it. Sometimes it is not just fear that can get in the way of your dreams. There is also, physical reality. We can have a dream to "live forever" but that won't happen. We can also have a dream that Anna will wake up breathing deeply. Well, the forces of nature that will create that opportunity are at our mercy. At least it seems so, but we are not letting our fears get in the way of doing everything in our power to make that happen. And that includes, thinking deliberately about the direction we wish this story to go, and doing all the physical necessities to work with the physical world. That is what I know to do.

I know too that others use these times to go deep into prayer. Prayer too is a deliberate thought. Prayer is based on faith. I believe faith is a trust, whether it is a trust in a specific religious form of God that you know to be true in your heart, or a trust in a letting go to the basic goodness inherent in the web of life. Not letting fear get in the way means that you have faith and you trust, because you can not know the outcome of anything. We can hope, we can do all we can, but we must wait and let the mercy of life act out its story.

We have a specific miracle "on order". We are relying on our deliberate intentions, faith, trust, hard, hard work, and the Stanford Transplant Team for this miracle of new lungs to come to Anna. But when you really think of it, all the forces necessary to make this happen are bigger and wider than we can ever see. The web of necessary interactions and circumstances is truly grander than we can even imagine. It has a flavor of the divine. That is why transplant is truly a miracle to those who are recipients. A miracle is a happening that occurs beyond our understanding.

I believe that there is so much more that we do not know in the universe of our minds and hearts. Being curious and deliberate with our mind and heart with a faith and trust is how we steer into this unknown. Every human being must confront the mystery of this life with all of its challenges. We all must find a way to understand, find meaning and live fully to fulfill our own unique purpose. It is such a journey. We welcome all of your heartfelt prayers of faith and deliberate intentions into our life at this time. You are all a part of this mystery and the miracle that this life truly is.

Ana's Post: Lungiversary

Our dear friend Ana wrote on her web site a touching and moving piece about her Lungiversary, the anniversary of her second lung transplant. Here is a link so that you can read it too.

click here:
http://www.thepoweroftwomovie.com/2010/07/12/lungiversary/

It Was A Happy Birthday

Besides the usual routines there were no other appointments, poking or testing for Anna yesterday. It was her birthday and she wanted to enjoy it. I needed to add a little bit of ritual to the day so with my gift of offering to clean and decorate her patio I also offered a small box of ladybugs to release into the garden. We did so with a wish for them to "fly away home..." We sent them to live life free of capture in a garden of delight.

The birthday cake of choice for my daughters is my mother's recipe for lemon ice cream pie. It is a graham cracker cookie crust with vanilla ice cream blended into a can of lemonade concentrate. It is tasty and yummy. So breakfast included a hefty slice. Whoa Nelly......... it slowed Anna down a bit. Her belly can not take the volumes of food it once did. Finally when the tummy settled we were off on a birthday adventure to Stanford Shopping Center!!! wooo hooo!

After a very short time Anna asked, "why did I want to do this today? It tires me out. It always would tire me out to go shopping." Serious O2 needs add a level of effort and resulting fatigue that is not really compatible with shopping, but we made the important rounds anyway. J Crew, Tiffanys, The Gap, and Nieman Marcus. I remember when at Lucille Packard Childrens Hospital they had a saying, "when the going gets tough, the tough go shopping....."

Anna had never been inside NM so we took "Grammy" with us. My mom, if she was alive and with us, would have loved taking Anna to Nieman Marcus. She would have oogled the goods right along with her saying, "do you see something you want for your birthday? I want to get you something." So since it was Mom doing the "talking" and the "buying" we gave ourselves permission to set foot in NM. Anna and "Grammy" found a sale on a sale item making a perfect gift of a stylish cashmire blend sweater topper for a dress. It was darling and just what Grammy would have loved to buy and a real deal. Such fun to have success especially on your birthday and in honor of someone you loved and who loved you so much.

Dinner was at Yakkos for sushi. Anna should not eat raw fish at least for a while after transplant. In fact she should be extremely careful about sushi with her immuno suppressed system so it is a food of choice prior to transplant. Temptation roll, Nigiris, Sashimi, Dragon roll, Rainbow roll, seaweed salad, mmmmmmmmmm. Anna announced, "I am celebrating my last birthday with CF lungs!" and earlier in the day she announced, "I am having my last birthday with treatments!" Those words stop you. You have to recalibrate to realize what they mean, take a deep breath and continue on celebrating.

So, Anna is now 29. She said that means my blog is updated since I say I am the mother of a 29 year old. So now I am telling the truth. I look at her at 29 and a woosh in my mind sends me back through the history of time. It is in the moment that we have each other. It is in the moment that we touch and express love. We have had 29 years of so many moments. Happy Birthday Anna and may there be so many more.

I want to send this wish to all of my other CF mom friends, may there be so many more moments with your dears. As Anna was celebrating, another CF friend was in surgery for a nonCF related issue but one that does affect quality of life and his CF. I received an email asking for prayers that the surgery would go well. It did. He is doing fine. We must wrap a blanket of friendship around each other in these times. In this world of CF we feel the threat to our child's life all of the time. And that CF friend remembered to send facebook Happy Birthday wishes to Anna before he went into surgery. A caring and selfless act. They are so brave and they need each other so much. A community that understands and cares helps. It really does.

(Notice the cute toes, a pedicure birthday gift from Sara!)

Officially Accepted

What a mother wants to hear, "I am excited about my life." My heart stopped, the tears rolled, I could see her joy. Today Anna received the official call that the team met and she was accepted into the lung transplant program. We knew this was to be, but there is something about an official acknowledgment that makes important passages more real. (Note: Anna is still not listed as we now wait for the next call that the insurance gave the go ahead.) Earlier in the day, Anna felt emotionally overwhelmed at the enormity of it all, the tremendous opportunity being given to her. Her tears rolled as she thought about what it really means and how our lives will collide with another family. This was a profound and happy day anticipating her 29th birthday.

Anna's 25th birthday was a marker in our lives. When it came we celebrated that she lived to be 25. I mean she really lived to be 25. Sometimes we say things like that flippantly, "Oh I am so glad that I made it, chuckle, chuckle." But this was a real marker. Anna did not know that she would make it to 25. When she was born the statistical survival age was around 22. Now, the median age of survival for CF is 36. She has survived past her projected stop date. And, when she was born and a little child there was no idea that anything as miraculous as transplant would ever be available. A shortened life with no reprieve was the deal. Now, we realize that transplant is no cure, there are no guarantees, it will be no "lolligagging picnic" as Anna would say, but there is promise and hope and breath and life, more birthdays and possibilities.

Yesterday our dear friend, Ana, posted on facebook, three years ago on July 12 at 4: 12PM she was called to receive her new lungs for her second double lung transplant. Her official "third" birthday is July 13 and shared with our Anna. In response, Anna posted that July 12 at 5:13PM she received a call that she was accepted into the transplant program. Their connection is quite remarkable. Life has these funny ways.

Happy Birthday Anna!!!!!!!!!!
Happy Birthday into your third life Ana!!!!!!!!!!!!!!!!!!!!!!!

Home Is Where The Heart Is

Dearest darling Sara, the other fabulous daughter of mine and incredible sister to Anna took over her care for a couple of days. We are still not in the listed time line so we are continuing to find ways to get away and get things done while we can. Each time I get, I use it to my best advantage. As I said before it takes more for me to be restored, but my energy is much better now that we are almost there, I mean almost to the beginning of the waiting. It is a relief that all the evaluation is complete.

This morning I woke up realizing that I had the best sleep I have had in weeks. I have been waking up multiple times between 2 and 6 and sometimes just simply getting up and then falling back to sleep on the couch. Grief, anxiety, anticipation of melanoma, and all of it has been interfering with my dream life. Last night was different. I slept all the way to 7:30. Amazing, the first thing that popped into my mind was, that must mean I feel at home. Home, where is home? Right now I have three places I am calling home, Sunnyvale, Livermore and Murphys. This morning I woke up in Murphys.

We are always healed when we are in Murphys. This is where we have our country home in the oaks and pines of the foothills. It is where the wind chime gently sings in tune with the songbirds and I sit on my deck listening to the melody. The tunes are different in Murphys, there is the gentle rush of wind through the trees, the obvious silence, the chirping, the tweeting, the buzz of hummingbird wings. The warmth here blankets me and lets me know I am in a different climate. It is hot in the summer time but that just slows everything down. It is a kinder pace here.

When I walk the trail behind my house I imagine I am walking in the foot steps of the Miwoks who lived here 150 years ago. This was where there was a large settlement of native people. The birds sang to them here, they found the hawk and eagle feathers here that they used for ceremonies. A short walk along the creek we see the left over grinding holes telling their stories of the women mashing acorns while their children splashed and played in the creek. The land here has a special vibration. It resonates with our souls. We are connected here in a way that we are not in the bay area. So, does that mean that this is home?

Home is where the heart is. That is a famous saying. Home is where we are with the ones we love. Home is the hearth where the soup is made to nourish and restore the body. Home is where we rest. This home is where before I went to bed I laid outside on the deck and watched the stars. There were a few shooting stars, a few satellites, a UFO, many other stars and the wonder of the night. The pin points of light that shine in the night are like diamonds and treasures for the taking. I took a few and put them in my pocket and I slept well, very well.

Update On Waiting

Anna got an update yesterday on the timing of our waiting to be on the waiting list. Her case will be presented on Monday and then on Wednesday it will go to the insurance company for final approval. This is taking longer because of the holiday we just had on Monday for the 4th when the team did not meet, so her case could not be reviewed until the 12th. This delayed a process that it seems can not be circumvented. We had hoped they would have sent it into the insurance company this week to save time. But, of course not, can you believe it? We are learning patience, I guess. I do not like this patience stuff. The insurance company has by law 10 days to review the case for final approval. So we wait.

In the meantime we are very aware that there have not been any lung transplants for quite a while at Stanford. This is a cyclical or "roller coaster" process. Sometimes there is a cluster of surgeries, sometimes there is a drought. We are in a drought, so perhaps this is a good time to be processed. Let us hope it picks up when she is finally listed. A curious but disturbing fact is that transplants slow down in economic recessions. Interesting to think about. It is because people do not have the means to be involved in risky behaviors. Come on President Obama, help us get this recession over with so that people will spend, spend, spend on .............. ooops, sorry. I got carried away. This is a crazy making situation to be in. Please forgive me, I think we must some how keep our sense of humor and humility as the seriousness and morbidness of this is quite intense.

Clean Teeth, No Cavities, No Melanoma

Today, I woke up reassured that I have clean teeth, no cavities and no melanoma. I am intact with my self defined mother indispensability, except for my knee (I will learn more about that from the orthopedist next week). Isn't this how a mother feels? No one can do her job like she can, nothing can happen to the mother, she has to be there, she has to care for her children, and damn it nothing better get in my way. But the mind is so powerful and can scare you in strange ways making up stories that you are sure are true.

I knew my teeth and a little decay could not befall me so I was not worried about the dentist. I do know that sun damaged skin can be nasty. I have always been a sun lover and for many years, a sun worshiper, dumb thing to be. I have had a basal cell carcinoma removed from my face a few years ago and have check ups now and then. Anna said, "Mom, I want you to check that new spot on your face. I don't want you to have cancer. I could not take it. You need to go to the dermatologist." Bossy daughter that she is at times, is wise. So I agreed, and the appointment was made.

Meanwhile the possible specter of skin cancer loomed in the back of my mind. Has this ever happened to you? This happened another time with me about an imagined lump in my breast that I was sure I would die of. I could see all my friends coming with casseroles to help my family while I lay, helpless. Terrible thought form for sure. And here I did it again. A spot on the back of my right shin shouted at me, "You have melanoma, you have melanoma, you have melanoma. You are going to ruin your family, You are going to break their hearts. You are not going to fulfill your motherhood promises." I could barely look at it. When I did look I saw the jagged edge, the irregular color, the growth and changes day to day, the raised look. I googled it. Yes indeed, melanoma is found in women over 50 on the back of their legs. See, I am right, I am going to die of this thing.

This was going on for the last few weeks in my mind, behind the scenes. I kept it behind the scenes because this is a place where I am skilled at being dishonest. If there is perhaps something wrong with me I will not tell my family. Everyone already has too much to handle. I am afraid of being the straw that breaks the camel's back. So, I will bear the burden myself in silence. I will not sleep and get up in the night with twisted insides. I will look in the mirror and cry, sure that disaster is coming. Tell someone before I am sure that my imagination is not just my imagination? Never. I would not dare tell. I save it up. Needless to say, yesterday took forever to come. When I parked the car for the appointment an advertisement on the radio announced a research study for a new treatment for melanoma. I listened very carefully. My heart stopped. See, what timing, I know that is what I have and now I have been given a divine gift of a treatment to save my life. I went to my appointment prepared how I would be scheduled for a stat mole removal today but at least Anna's appointments were done. We finished the crucial evaluation. I had to be there. Melanoma had to wait. Maybe the angels would have pity on me because I was so self- sacrificing and not reach out their hand to pull me through the clouds.

Oh my gosh, what a silly woman and what an imagination. The spot is nothing. A spot on my face from years ago may be another basal cell so I had it biopsied but thankfully that will not kill me or maim me. Big, big sigh of relief. And now I can tell the story of the silly mother who believes that she is indispensable but afraid that something will get in her way. Does this make me a drama queen? Well I guess so, but at least it is a drama playing just in my own mind and driving me crazy rather than everyone else too. Hope I can survive this life with such an imagination, guess I should write better scripts when I get scared. Maybe if I was more honest from the beginning my fear might go away rather than build and build and build to such an extent. Guess that is the lesson. It is that, sometimes it is better to have secrets, thing. I should never believe in that. So there, another dark place in the corner revealed.

So, on my way home to what is really something to worry about, I bought a little cake, a carrot cake. It is an early birthday present for Anna. Next week is her birthday. She does so want to be listed for her birthday but this is a present I can not give her. This is the first time there has been a birthday wish that Doug and I can not get for her. Maybe the system will work so that it happens on Tuesday. But, I did tell her that I hope all the ducks will be in the row by next Thursday for her listing. That moment will be a real relief and finally the beginning of the real waiting. So, any other crazy thoughts before then that I may have, any other crazy fears casting their shadows must be illuminated and eliminated. We will do our best to meet this upcoming event with all our plans in place, focused, and ready to go.

Note: My heart goes out to the others reading this blog who really did have a lump and a bad patch of skin. This was not imaginary for you. I am lucky to be well. I count my blessings. May you be well. May life treat you with goodness. May you be surrounded by the love and care of family and friends.

Why Blog? It Was Mom's Fault!

So, why am I blogging? Why have I introduced my blog to you? What is this about? Thought I should say something about this since blogging is really a new phenomenon in our culture. My brother commented that it is something good for me, a way that I can let it all spill out. It is, but I think it is more than that.

First, the personal issues and benefits of blogging for me, Robin. Those that know me know that I enjoy being a creative person. I am happiest when there is a project developing, when I have a goal where creative pieces need to be completed. That is when I am the most productive and inspired. Right now I do not have the time and creative space to involve myself in a concrete or mosaic project or other such thing. Writing has been an outlet for me for a few years now. As a vehicle of expression, it has grown particularly in the last year following my mom's passing.

Mom, Elayne, was a writer. She was an amazing poet. I found hundreds of poems tucked away in her apartment after she died. I knew that she wrote, but I did not know how really important her writing was to her. Her poems and the musings about her life as a child and when growing old revealed a depth of emotion, and pain that she never let me know. She tried to shield her wounded heart and periods of depression from all of us but we knew it was all there. She was just not willing to open the door and let us in until after her death. The result of pouring over her poetry, transcribing it into a book and then finding the clues that put the mysterious pieces of her childhood story together was a deep healing for me. I finally understood my mom in a way that I had always wanted to. I needed to know that vulnerable, wounded person she was as well as the wonderful mother who loved me so much. I understand now that this influence contributed to me being shy, emotionally aloof and not fully in touch with my emotional self as a child. On the other hand, I think her secret keeping and my intense wanting to know her is what eventually made me to want to seek deeply into myself and share my inner most.

Thus, in my art and my writing I strive to express my life, my feelings and what is going on inside. Blogging is good for me. I have vulnerable places yet to be touched, not willing to be revealed, seeking my attention and I am learning through creative outlets how to find those places. Writing is an amazing tool working with words, painting a story, a scene, a situation while trying your best to be honest. But honesty in writing is all about perception. My honest bent may not be yours. It is all relative and in writing we get to choose the type of story we wish to tell. Isn't that how we live our life too?

A writer needs an audience. My mom did not create the audience that she deserved while alive. She was a special person with a deep sense of integrity and a heart that cried out for those that suffered. More people should have had access to her writings. A blog establishes an audience. A writer can not fulfill the promise of the writing until there is an audience. Those that blog need someone to hear their words. It is the same as writing a book. Those books that are your favorites are those that have touched you in some way. They have grabbed your heart and you have grown by reading the book. Today's bloggers are trying to do the same thing. Listen to my story, I will be as honest with you as I can. I hope that with my words you are moved, you grow, you understand me and yourself even more.

And so, I have invited you to read the blog. I want you to know that this in itself is a scary thing to do. A blogger, me, is putting it on the line. I am going to reveal what is happening, a very personal and intimate story. Maybe you will judge me. Maybe you will not want to go on this journey with me. Maybe I won't be able to be as honest as I would like. Maybe you don't want to hear about those details. But, those of you that are my family and friends I know are interested in how Anna is doing, and those of you that are new to me and my family are curious. Even though chronic illness, lung disease, cystic fibrosis, and transplant has been normal and usual for us, it has not been for most everyone else. I am assuming that people want to know what this illness is, how it impacts individuals, how even in the midst of its challenge lightness and hope can be found. For those that are also on this journey I hope that we connect and can help each other. I know and understand much of this journey, but I am entering a part of the path that is new and I think, extraordinary.

This is where blogging is not just for me. It is also for you the blog reader. I hope that you feel closer to Anna, our hero and darling daughter. I hope that you learn more about this devastating disease, CF. I hope that you learn more about the miracle of transplant. I hope that you learn more about the complications that go along with it. I hope you value organ donation and sign up to be a donor while encouraging your friends to do the same. I hope that you recognize that honesty and openness is what creates true friendships and lasting relationships. I hope that you decide to be more revealing if you are like my mom who wishes to keep it hidden.

Thank you for reading, for giving me a creative outlet and a way to connect. I am not good on the phone. I am not a long winded person. Maybe that is why blogging is good for me too. So if I can tell the story here and not have to tell it many times on the phone then that really helps me. That being said, please do not stop calling me. I need to hear your voice too. And, thank you again for all of your encouragement and nice comments. I do need my friends and family now more than I ever have. This is painful and hard. That is the honest truth.