Refinishing, A Very Good Project

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

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

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

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

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

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

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

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

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