Ana and Isa’s blog

Dear Friends,
For the past 3 years, I have used Thanksgiving morning as a time to sit down and write to my donor family. This year, I am writing on this blog instead, to articulate my gratitude for all to see.

Today I wish you all a wonderful Thanksgiving Day. Pardon the cliche, but may this be a time to stop our hectic pace, sit back and reflect on all the blessings we have received. To be honest, I think every day should be Thanksgiving.

For those who have followed my blog, you can imagine what I am grateful for this year, but it is actually hard to explain the deeper levels of gratitude that I feel. It’s just great to be alive.

I am profoundly grateful for Ana’s third chance at life, for her second donor family, for her doctors and medical staff who have supported her to allow her to enjoy stable health, 4 months post-transplant. The other day we slept in a small bed together and fell asleep and woke up staring at each other with huge smiles on our faces. It seems like a dream that we are still together.

I am just as grateful for my stable health, for Xavier breathing inside of me. And for what health has allowed me to do. I am privileged that the world can see the loving gift given to me by the Cervantes family, through my book, and also on the Rose Parade when I hold Xavier’s photo.

I am most grateful for my loving partner Andrew who supports me in everything I do, and gives generously so that all my needs are met, and I can focus on self-actualization. What a luxury. I also appreciate all of my family members, and recognize that the family we are born into is just the luck of the draw, and mine turned out pretty darn good. This has been another year where everyone is safe and healthy.

Albert Schweitzer said “Each of us has cause to think with deep gratitude of those who have lighted the flame within us.” That is you. My friends, you continue to enrich my life- I realize you out there are not normal people- you are deeply considerate, exceptionally kind and compassionate. You walk alongside Ana and me and care about the more important aspects of life- love, relationships, appreciation, doing good, making a difference to the world, finding spirit, connecting deeply with oneself and nature. How lucky we’ve been to be surrounded by a narrow niche of high quality people. This connection exists whether you are my neighbor or live far away. I’m grateful for the internet and phone that allows me to feel close to all of you, no matter where you are. This communication is so life-enriching.

I thank God for giving me a greater sense of awareness this year, with Ana’s struggle, and intimate connection among friends, of something bigger than my desires and self. I have learned that we are all in this together, and what happens to me or my loved ones will not affect the universe at large. We are just specks of dust doing what we can with this short life we’ve been given. In the end, we’ll all be okay. This ‘letting go’ of my precious life has relieved the anxiety I’ve had for 35 years, and transformed me this year. I appreciate my spiritual teachers this year who have helped me to see the true meaning of ‘love thy neighbor’, and taught me to judge less because everyone is doing the best they can do. I’ve learned that even ‘negative’ experiences- being sick, hated, angry, hurt- are opportunities to grow and find something deeper about ourselves.

I thank University of Missouri Press and so many others who’ve supported “The Power of Two”. To fulfill a goal is a wonderful feeling! I’m glad that our book experience is balanced- like everything in life; when a book signing doesn’t go well, we get a phone call from a long lost friend who lovingly shares memories in the book; when we get an angry letter we get 10 more positive emails about the book. I appreciate that our book is finally published and many of our friends have praised this project. I’m thankful to those who forgive us for being so self-absorbed, but rather see a larger purpose to this book than just sharing our story. We are very grateful to Laura and Tiffany for posting reviews on amazon- and encourage more! We feel so free to market our book in this open society and are grateful for the chance to be working on a mission outside of our health! I’m grateful the book gives us an the opportunity to look forward, into a future where there are countless possibilities and unknown opportunities ahead. Man, that feels great.

Yes, our world has overwhelming problems in it and more people seem to be suffering that not, but today I firmly believe there is more good in the world than evil. I don’t mean to sound “Pollyanna”, as Ana would say, but this is my sincere conviction.

Have a blessed Thanksgiving. Please know I am extremely grateful for your presence in my life.
Love Isa

Dear Friends,
Thank you for your continued interest in this blog!

We are happy to report that our book, “The Power of Two: A Twin Triumph over Cystic Fibrosis” has been out for one week! Our labor of love for the last 4 years is finally a material product, open to the world to see and judge. Whew. Deep breath.

This Saturday, I went to Houston, Texas for their CF Education Day, thanks to the magic hands of my dear friend Beth Sufian. The very generous parents of Charise Wessel donated books to all the families who attended. I was quite nervous to finally have this book in the hands of the “general public.” I enjoyed to give a talk about therapeutic writing, and I feel so thankful when people are interested in what I have to say. I loved seeing the parents of Hayley, a young woman who died whom we wrote about in the book. Talking about her made her seem like she was very present- a beautiful consequence of writing about people we’ve lost. After the talk, I gave my first book signing. My hands were so nervous, at first I forgot how to write my own name. I also wanted to write something sincere and original in each book, which on the spot made me freeze. Thank you to everyone at Texas Med Center for making this possible

On Sunday, Ana and I gave the message at our church, First Congregational Church of Redwood City. It was National Donor Sabbath and across the nation people honored the organ donors who have given life to people like Ana and me. I had a chance to play Amazing Grace on my bagpipe. I was so nervous! Then afterwards, we had another book signing, and really appreciated many supporters who came just to purchase a signed book. Thank you to those who attended!

Last week, people who ordered our book from the University of Missouri Press received it promptly, and we mailed copies to a few people. The first copies went to our parents, who have to be the best parents in the world. They are so loving and emotionally stable, that they completely accept everything that is written in the book, recognizing that “Well, this was your perspective at the time.” Thank you Mama and Vater. My mom said she was speechless when she held the book in her hands. She was so grateful that even her father’s photo is memorialized in that book forever.

Also, the first copies went to our donor families.

We am very grateful for the select friends who received the book, and read it up until the wee hours of the night. We truly appreciate your kind words and validation for our efforts. Ana and I cannot convey the relief and incredible joy we feel when someone shares their reviews like these:
“This is the best CF book ever written.”
“Wow. What a powerful, moving, and “real” work!”
“Had to tell you how very much I enjoyed reading your most beautiful book. I feel I lived it with you.”
“I thought it was excellent. Congratulations! I believe it will appeal to a larger audience other than just CF.”

I appreciate when people say the book makes them laugh and cry. That was our intention: to share all range of emotions and experiences with our readers. We want people to empathize- feel with us- in our CF journey. We do not want sympathy- feeling sorry for- our CF experiences. They are what they are, and have left us with incredible opportunities.

I feel bad that the truth of CF which we convey so openly is shocking to some young parents. I want to promise that our struggles will not happen to their children, but there is no use promising that, except to reassure them that we were born in 1972 and so much has changed in CF medical management. Our intention with our story was never to hurt people or make them feel bad about what might happen to them or their children. The last thing we want is to create anxiety. But our writing about the hardest parts of CF (which are not necessarily a significant part of the book) are what they are. I hope readers can see that the struggles with CF happened while we were enjoying life goals like college, graduate school, relationships, travel and other life-fulfilling activities. Other parents who have lost their children share how this brings it all back, to the point where one mom woke up and thought it was time to give chest physical therapy to her kids who are long since gone.

Well, I just wanted to share what this week has been like. Fortunately, Ana and I are both stable, although we are exercising a bit less than our usual obsessive levels. Nice to obsess over something else!

Our wish is to pace ourselves with the excitement of the book release, recognizing that Ana’s health is precarious only 4 months post transplant. But, man, what a great feeling to be both well enough to witness the release of our book. Thank GOD.

That being said, we are off to Sacramento now for a signing at Sutter’s CF Education Day. After that, we can settle down for a few weeks until our next signings in early December.
We hope you have all been healthy and enjoying life. If you read our book, I appreciate your support tremendously. Please feel free to post your genuine comments on this blog. We are very open to all feedback.

With love, Isa

Dear Friends,
I appreciate those of you who are still following our blog. Thank you for your interest. This week, I declared that I’m “done” with my transplant recovery. I’m ready to get back to living. I stopped reglan, a medication to aid digestion which causes dizziness and drowsiness, a few weeks ago and have been feeling much more clear headed and energetic since.  I feel great - although my lung capacity is still around 65% - I’m able to walk with ease, do step aerobics and even jog for 2 minutes without stopping. Things are going so well I have anxiety that a bomb will drop and something will go wrong. But I expel those thoughts and repeat to myself,  ”I’ll be ok, I’ll be ok, I’ll be ok…”

On Tuesday I went to volunteer to speak for the California Transplant Donor Network’s annual transplant coordinator’s retreat. Transplant coordinators are the miracle workers- amazing people who approach potential donor families sensitively and empathically at the time of crisis to inquire about donating their loved one’s organs. As you can imagine this is a tough job. They often are up for long hours at the wee hours of the night supporting donor families through their decision, regardless of what it ends up to be. They often don’t see the “other side” of transplantation- the miracle of very sick people coming back to life after receiving the gift of life. So I spoke to show them the “end result” of their work- a human being brought back from the dead, alive and well, happy and enthusiastic about living, grateful and in awe of the miracle and gift. I shared with the group about my dream/vision I had right after my transplant, in which I saw my donor’s family grieving as they checked out of the hospital. In my dream/vision, my donor was a man; the woman with him had long brown hair.  One of the transplant coordinators came up to me after I spoke and said she worked with my donor family. She confirmed my donor was a man, although for professional reasons she could not share more.

There was a donor father who spoke at this retreat as well. He lost his 16 year old son in an accident in Sept. 2005 and has become an advocate for organ donation since.  As he spoke of meeting the recipients of his son’s organs, I put two-and-two together and realized the heart-lung recipient was our friend Lorma, who spent Thanksgiving with us in 2005 while recovering from her transplant. She is from Maryland but was living out here while waiting and recoverying from her surgery. She had no where to go for Thanksgiving so we invited her to our home.  What a small world. It is a gift to be able to embrace and thank a donor dad for saving the life of a friend. I remember how Lorma was so sick -so blue- as she waited for her heart-lung transplant, and how she came to life- all pink- after her surgery. Today she is doing great, back home in Maryland.

 So it seems in this community of transplantation, connections and small worlds intertwine constantly. I continue to be amazed by how the stars align just right and the hand of the higher spirit makes things happen. In loss, there is new life for others and a legacy left behind.

Who ever my donor is, I bow my head for him and his family.

I send greetings and well wishes to all.

Ana Stenzel