Not for Me to Reason Why

It was Dec. 16, 2004, and I was driving to work, looking at the impeccably landscaped golf course near my family’s home, watching mist rise from the ponds. As I admired the beautiful morning, I thanked God for it, and for letting me keep my infant son, William.

The day before, we learned that he did not have cystic fibrosis, a degenerative, debilitating disease that would have killed him young, or required a double-lung transplant – neither of which I had envisioned for our dark-haired, big-eyed boy. I was so relieved my older son Martin would have his brother throughout his life, and that my husband and I would not have to bury our child.  

Diane Crim Photography. Used with permission. All rights reserved

 I thanked God again for sparing my family – my own and my siblings’ – the tragedies I had seen befall many of my friends’ families. Terminal illnesses, suicides, tragic accidents. I wondered out loud how all of that worked. How one family experiences typical life events, while another family suffers tragedy, sometimes many heartbreaks. How two people can suffer the same illness, disease, or injury, and one lives while the other dies. 

Four days later, I learned there is no rhyme or reason. On Dec. 20, tragedy befell my family. Jonathan – my sister’s and brother-in-law’s only child, my mother’s grandson, my nephew – died in a single-car crash on Tallahassee’s dark, dangerous Deerlake Road. He was only 16.

I still thank God. But I’ve never again wondered, silently or out loud, how any of this works; there is no sensible or reasonable explanation. I’ve never looked at the world the same way since. I do try even more to live each day with gratitude, reverence and humility.

We Will Miss You, Steve

“Because your whole world can change in 24 hours.” – The Paper (1994)

That’s Steve Catoe’s quote from his latest blog post, “24 Hours at Johns Hopkins.” I know that for Steve’s family, the past 24 hours have changed their whole world.

It is with a very heavy heart that I share with you that Steve died sometime between the late-night hours of Nov. 28 and early morning hours of Nov. 29. He was at his computer, doing what he does best, championing survivors and writing about congenital heart defects (CHD). 

I’d like to think he left us in the wee hours of Nov. 29, the 66^th anniversary of the Blalock-Taussig Shunt, which Steve has been writing about over the past two weeks.

“We’re thinking positive thoughts,” his cousin Denise Baldwin told me this morning. “That he’s not in any pain and that he has a whole heart now.”

Just 11 days ago, Steve wrote a post called “Run the Race.” It’s an analogy of his life, living with CHD. He writes about the stumbles and falls he had throughout his life with tricuspid atresia. In true form, Steve talks about fighting the good fight, never giving up and crossing the finish line still standing.

If Steve was tapping away at his keyboard when he passed away, I think he got what he hoped for – he crossed the finish line still standing. Doing what he loved best, doing what he did best. Telling a great story and teaching us what it means to live, no matter what our struggles might be. He made a huge impact on the CHD community, speaking at several events and being there online for more than 400 followers each on Twitter and his blog, Adventures of a Funky Heart, and more than 800 friends on Facebook. He did fight the good fight for so many of us.

Steve was one of the very first people I “met” online when I signed up for Twitter in February 2009. I immediately recognized his CHD (tricuspid atresia), as it is the same heart defect as my friend and Broken Hearts of the Big Bend heart kid, Eliza, had. When Eliza endured her own battles, Steve took time to keep his readers updated on her status and ask for prayers for her. Later, he was a champion for another of our heart kids, McKenzie, who lost her fight to neonatal Marfan syndrome earlier this year.

In February 2010, Steve flew to Tallahassee, Fla., to attend and speak at Broken Hearts’ Regional Forum on Congenital Heart Disease. I got to meet Steve, and also his cousin Denise, who is the one who called me this morning to tell me about Steve’s passing.

At the Forum, Steve — a masterful storyteller with an amazing story to share — talked about his life and his parents and their courage and determination to give their son the very best care they could find.

I feel so fortunate and blessed to have known Steve and to call him my friend. We e-mailed each other often, talking about our blogs, the latest goings-ons in the online CHD community, and life in general. It was through conversations with Steve that I realized that Broken Hearts would be more effective and be of more benefit to those families we could touch in person.

I’ll miss Steve’s advice, his points of view on congenital heart issues, his storytelling, and his quirky sense of humor. He was a part of my everyday life. I already miss him and I wish I’d had a chance to say goodbye. Although knowing Steve, he prefers it this way.

When I got Denise’s call this morning, I was — am still — shocked. I knew Steve had been struggling with the ever-delicate hemodynamic balance that many CHD survivors cope with.

In Steve’s case, he was working with his cardiologist to adjust the diuretic he took for his congestive heart failure. One of the possible side effects of the drug is gout; and Steve recently had been fighting gout. They took him off the diuretic and his gout improved, but he knew his congestive heart failure was worsening because his ankles swelled, he had a constant cough and felt, in general, rundown and tired. 

Denise said, at this point, they believe his heart had been working too hard lately, and it gave out. “But, he has his right ventricle now. His heart is complete,” Denise said, continuing to stay positive (which Steve would surely insist we do).

Although Steve may physically have had only half a heart, spiritually his heart has always been whole. I believe for Steve what I believe for my Dad. Just as my Dad is up there hanging out with all of the ancestors he researched and wrote about, I believe Steve is in Heaven with all the CHD survivors he championed and wrote about, and he’s telling all of them how much we love them and miss them here on Earth.

A few weeks ago, Steve and I were talking (e-mailing) about his upcoming Funky Heart posts. He was planning to crank it up a notch or two. And he did. Just last Friday, Steve wrote one of his most powerful entries about working toward a cure for congenital heart defects.

I know he’s up there talking with his fellow CHD angels, telling them how his readers better keep fighting the fight from sea to shining sea. So, for Steve, let’s keep fighting the fight.

Keeping Steve's family in our hearts and prayers. Arrangements are being made in Bethune, S.C., where Steve lived. I will try to post information when it becomes available. 

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