In Memoriam

My eldest sister, Beverly, passed away in a room marked "23" on April 27 after spending 47 days in the ICU. She was 66 years old. She had an infection in her mitral valve which had to be replaced but before they discovered this, her lungs stopped working and she had to have a balloon catheter placed in an artery and was put on mechanical ventilation. She had a fever and Strep infection in her blood from the valve and was on massive amounts of antibiotics to even get prepped for surgery. After one week of antibiotics and being flat on her back on the vent, she underwent a mitral valve replacement with only a 50/50 chance of survival. She had an abscess in her valve and they could only take out so much of the infection without putting a hole in her heart. So, they replaced the valve, and kept her on antibiotics after surgery and just prayed the infection would resolve. It did. But, her lungs would not be strong enough to get off the vent. She had no blood pressure on her own and was on dopamine pressors. One night she pulled her tube out of her nose and coded but was shocked back to sinus rhythm. Another day along the way, we were told to call the family, but she rallied the very next day and after 2 weeks on the vent, they were able to put in a trach tube. I remember when she had the trach placed and got that God-awful vent tube out of her throat. She was smiling and blowing kisses to me. She could mouth, "I love you." Then they realized they put the wrong size trach tube in and she began bleeding from her throat. She had to go back to surgery to have it replaced. We began learning how to read her lips. I got her a white board and, with her glasses, she was able to write messages to us for awhile. But, she was shaking a lot. Some days her cognition was great and she was all there. Other days she was drugged and we could not read a thing she wrote, drawing nothing but squiggly lines. My sister from NY came down and she had put together a photo album that my sister just cherished! Shortly after that, her kidneys began to fail. She had so much fluid her body was bloated and the fluid wept through her skin, soaking the sheets. I would hold her hand and leave huge indentations in her flesh. She had bruises all over her legs and arms. Tubes, lines everywhere. Beeping machines, the blood pressure cuff going off constantly. She underwent dialysis 3 days a week but soon began to not tolerate it. Each time she began to be dialyzed her blood pressure would plummet. She had chest tubes put in to get the fluid out of her lungs. They wanted to replace the nasogastric tube with a stomach tube, but she could not be optimized for surgery. Bev had low platelets, a result of MDS (myelodisplastic syndrome) a blood disorder she had developed a few years earlier. She also had chronic obstructive pulmonary disease and smoked which made it so hard for her to breathe. The turning point came when the dialysis port became infected and she had sepsis. Finally, her liver began to fail. One day, she asked us to let her go. She told us she was hurting. When we asked her when, she said, "Now." None of us were prepared for this. So, after papers were signed, the drips were turned off and the ventilator too. She breathed on her own for awhile. But, after about the fourth hour, her body shut down and she died. I was holding her hand. My sister and her daughter and I were the ones who were with her until the end, though going through a myriad of emotions, we were devoted to helping shepherd her soul to the other side. Her nurse, Tony, our angel, told her she would go to sleep and wake up in a beautiful place. He prepared her by having talks with her about it and then guided us through the whole process in which a room no one ever wants to find themselves in - a sterile, anxious, and sometimes hostile place - was transformed for just a few hours in time into a sacred and holy space.

Through all of this, Liberty has fared well, thank God. Beverly was Liberty's biggest advocate, the one who went with me to every IEP. She was her county's first ESE teacher! She went to bat for people with disabilities and she knew how to get things done. One of her colleagues has offered to go with me to the IEP which happens to be today. Liberty will be changing schools next year.

So much change.

I still cannot believe Bev is gone, that it happened at all, that there was even a memorial service. I know how grief is, it is like a trickster, just when you feel yourself standing on solid ground, a memory flashes back or a realization comes that brings you to your knees. There is no way around it but through. I was with my mom when she passed, too, holding her hand - but she had been in a coma for days, the end result of a long and winding road called cancer. Somehow with Bev, it was different. She was awake, coherent - I still relive it all and probably will for some time. She never closed her eyes and that was a kind of hell for us all.

Now, in the background of all of this the Gulf oil spill looms. Our beautiful beaches, way of life, economy, you name it - all hangs in the balance. The news here is surreal. One commercial commands that if you find stranded animals covered in oil, do not try to help, call their agency right away. Another advertises Dawn dish liquid and shows geese getting soaped up and bathed. "Tough on grease...easy on geese?" It's so sick! Then there were the waiters and waitresses at the beach restaurant crying that they are losing their jobs; the beach being flooded with people last weekend, taking samples of the pristine white sand that is in danger of being tarnished forever. Well, maybe not forever, but for at least 100 years or so. And, if the oil get into the marshes, which you know it will, it will never be gone. This is so much bigger than the Exxon-Valdez. And, you know what? Even scientists and officials at the public meetings won't speculate or tell the truth. They are afraid to tell the people who live and work on the beach that the biggest catastrophe to ever hit our oceans has been going on now for weeks. I suppose it will become apparent with time.

And yet I have been praying. We watch the daily reports of the whereabouts of the big blob on the map and actually breathe a sigh of relief that it has not hit here, though they say when the wind shifts, it is inevitable. It is like bracing for a hurricane that is always on its way, just about to strike. It has already begun to affect New Orleans. I keep hoping that there will be something that saves us somehow. I hope that I am not writing an epitaph for our home. If even the breeze becomes toxic, then we will be moving.

For now, I write, I work, I eat, I put on my clothes, I feed my birds, I bake my bread, I just take it moment by moment. Which I was supposed to be learning how to do all along. This is always the message, isn't it, when there is loss? To take one day at a time, moment by moment, and savor what you can from your time here.