Saturday, March 20, 2010

Spring is Bittersweet

George Lee Thurston III
Oct. 1, 1925-March 20, 2001

My father was genius-smart, oddball-strange, comedic-funny and present-aloof. After his terminal diagnosis, he stayed genius-smart, oddball-strange and comedic-funny. But finally, thankfully, he became simply present.

Diagnosed in December 1998 with chronic obstructive pulmonary disease, his pulmonologist gave him about two years to live. Always pushing the limits of everything, he lived two years and three months longer.

Dad knew for a long time that chronic lung disease would eventually get him. When he was 19 in 1944, he had a thoracotomy to cure his stubborn tuberculosis. He smoked cigarettes in his 20s and 30s. When he was 70, he had open-heart surgery for quadruple bypass and placement of a mechanical aortic valve.

After his COPD diagnosis, Dad lived slow, but actively until about November 2000, when his real struggles began. At first, his scoliosis stopped him in his tracks. Dad was known for his asymmetrical shoulders and “tilted gait,” both caused by sliced muscles during the thoracotomy. His curved spine was painful. Shortly after Thanksgiving 2000, he parked himself in his recliner and left it only to, well, you know, and go to the doctor. We called hospice. Dad wanted to die at home, with his family, with no extreme interventions.

It’s not all sad and depressing. We knew Dad was dying. And it was a gift. We got what many people don’t get: not only a chance to say goodbye, but a chance to reminisce, recapture and renew our love and compassion for each other.

As he drew nearer to the end of his life, he opened up more and more with each of us, letting us know that while he wasn’t always there while we were growing up, he was here now and he loved us deeply, and he always had.

A month before he died, on Valentine’s Day, I took my opportunity to tell him things I had told him before, but it had been years, and to tell him things I hadn’t said yet. It was a blessing.

It’s only fitting that my father died on the first day of Spring. Because in dying and death, there was also rebirth. Thank you, Dad, for sharing your life during life, and especially for sharing your life in your death. 

My Valentine’s Day Letter to My Father
Feb. 14, 2001

Dear Dad,

Your mother taught me a great lesson in life -- don’t wait too long to say what you want to say. So, I’m not going to wait until it’s too late to give you this letter.

I have to tell you how hard it is for me to see how fragile you are. I watch you struggle to do what used to be so easy for you and I think to myself: This is the man who heaved a heavy canoe off his camper, lugged it to a boat ramp and then canoed for several miles down a river. It hurts to see you in such pain. I wish I could make your pain go away.

I watch you struggle with your thoughts and your train of thought. I’ve taken solace in the last couple of years that while your physical health has been failing you, your mind has stayed strong. Your mind has always been your greatest asset. I know you get so frustrated when all your synapses don’t fire properly and I hurt inside to see you struggle.

Since I was 15 and Mom was almost killed in that car accident, I’ve had periodic dreams about her dying. I cannot even tell you how many times I’ve woken up with tears streaming down my face, thinking she was dead. Ever since then, I have known what her death will do to me. It will be a horrible and devastating thing.

I don’t know if it’s been those dreams that have kept me aware of that and unaware of what you’re leaving me will do to me, or if it’s because you’re such an unemotional creature. But it’s only been in the last few months, and especially the last few weeks, that I’ve realized what a horrible and devastating thing it will be when you die. I know you aren’t afraid of it, and that helps some, I suppose, but, still, it will be so awful, Dad, and I wish it never has to happen.

But it’s going to and I can see it won’t be all that terribly long from now. Do you know the worst part about someone dying? After someone dies, you can’t see them anymore. You can’t touch them. You can’t hug them. You can’t smell them. You can talk to them, but they won’t answer you – at least not in the same way as when they’re living.

You know what I like to think, though? I like to think you’ll go wherever it is your father  -- and Hopa and all your other ancestors – are, and you’ll get to see them and talk to them and be with them again. I like to think that. I hope it happens for you.

I also like to think that you’ll do what your mother does sometimes -- which is visit me. Martin and I were driving home one afternoon from preschool -- it would have been early this year or maybe sometime last year. Martin started asking me questions about his Great Gramma Nama and all of the sudden, I cannot explain it rationally, but she was there. I mean THERE -- watching, listening, smiling. I absolutely cannot tell you how real and powerful her presence was, but Nama was there in the car, riding home from preschool with us.

I turn a phrase, edit copy, or make a writer go ask more questions, and I know those are talents I inherited from you. I make a pun, tell a joke or do some goofy thing at the office, and I know it’s because I learned it from you. I have you to thank for my quick wit and sometimes-caustic humor.

I smell smoke from a chimney during a walk in my neighborhood, or feel flames off a fire and I remember all the times you took me camping and canoeing and fishing. I bait a hook and cast a line and know you taught me to do those things. I smell coffee brewing or Beanie Weanies steaming or eat a ham-and-mustard sandwich and I think about campground meals and picnic lunches at Lake Hall. I watch the sun come up and remember the time you stopped at Carrabelle Beach -- just to show me the sun rise over the water.

There were a lot of things you didn’t do when I was growing up, but the things you did, you did well and the impressions, obviously, are lasting.

I wish you didn’t have to go. Ever. But I know the day will come. I won’t be ready. Ever. But these are all the things I will like to think.

I love you.

Karen

Wednesday, March 3, 2010

Scimitar Syndrome: A Discovery Highlight

If you’d told me in high school that one day, I would read abstracts from the Annals of Thoracic Surgery with the giddy delight of a 5-year-old eating an ice-cream sundae, I would have burst out laughing, and, well, I would not have believed you for even a second.

But here I am (more than two decades later), all excited over an abstract I found online from a 2009 edition of the Annals of Thoracic Surgery. The article is about a multicenter study in Italy of patients with scimitar syndrome.

Scimitar syndrome is a rare variation of partial anomalous pulmonary venous return, a congenital heart defect. And my almost-6-year-old son is one of the 1-3 in 100,000 babies who are born with scimitar syndrome, and one of the 1 in 125 babies born each year in the United States with a congenital heart defect.

I’ve learned a lot about scimitar syndrome since those first months after William’s diagnosis in March 2005. And finding the abstract today was a highlight of my discoveries.

The study included 26 patients. Most of the patients presented like my son, with symptoms including recurrent upper respiratory tract infections and pneumonia. Eighteen of the patients had an intraatrial baffle repair, while eight patients had their scimitar veins moved and re-implanted at the left atrium.

Those were the two repair options William’s brilliant pediatric heart surgeon — Mark Bleiweis at the University of Florida Congenital Heart Center — discussed with us. He said he wouldn’t make a decision about which repair to use until he saw William’s heart. Then he would figure out which would be the better solution.

Once inside William’s chest, Dr. Bleiweis thought William’s left atrium was a bit small to accommodate the right pulmonary veins, so he created an intraatrial baffle — a tunnel directing the blood flow from William’s anomalous right pulmonary veins (located near the junction of the inferior vena cava and the right atrium) into his left atrium, where it belonged.

We knew then that Dr. Bleiweis knew what he was doing, and we trusted him. Now I’ve found a study of 26 patients over a 10-year period that shows “the intraatrial baffle repair seems to have a lower incidence of postoperative complications and a better patency rate, at last follow-up, than the re-implantation of the scimitar vein onto the left atrium.”

We’ll take it.