It is Thursday morning. My eyes burn they are so tired, but I do not want to lay back down on the bed. Maybe I will close my eyes in a moment here on the couch and rest them. I drove home Tuesday morning and got there just in time to pat each child's head and head up to see the amazing Dr. M. I arrived exactly at the time of my appointment. I had the amazing Dr. M's scarf I had knitted. Camel colored alpaca. I had Ashley's, blue and greens one. I said I had given Bobby one last year, she said no I had not. So as soon as I get home I am driving to Thomasville to give Bobbie her scarf. How embarrassing I thought I had given her one.
My memory is so scattered. Some memories so clear and consistent with those also there. Other memories, combinations of many unrelated things. Sometimes hard to know the difference. Being here is doing that. Surrounded by so much Colleen. She loved beautiful things and her home is filled with them. Every where you reach out is a small touch of something worth taking a moment to admire. Madonna's, beautiful crucifixes with crystals and beautifully wrought statutes, mermaids, butterflies, flamingos, collectible glass, orchids, flowers and fairies, feathers and fish. There were so many sides to that tiny little precious person.
The visit was interesting with Dr. M. I am doing just fine. All the numbers are the same as before, but I had asked at the last visit if we could check on my viral load in my liver. He said my numbers are very high. I have been so confused lately, I am so tired all the time. These are all symptoms of my liver being stressed. But the liver enzymes have been good. So I thought I must just be crazy. Apparently not. In my unmedical understanding, the test for the liver enzymes can say good things and my liver can still be stressed with problems. At least I am not loosing my mind. And another reason for me to quit berating myself for being so tired. I could see the mind of the amazing Dr. M whirling with possibilities and the challenge before him. That man's brain seems happiest when he is figuring out how to save a life. How to improve on the quality of life. How to learn something new about how this disease and treatments interact with other chronic diseases. And he loves to win and beat the challenge. The amazing Dr. M is truly what you want in every doctor, kindness, intelligence, passion and joy.
I stayed home Tuesday night with the kids. They crowded up around me and I rested in my red chair. Tired, but glad to be home and with my kids. We went to bed early and I almost slept for 11 hours. Edna nestled up to my left, Bob stretching out on my right. Harry slept in his bed so I was able to stretch out and sleep. I woke to rainfall early and dozed and woke for an hour or so enjoying the song of the drops against the pipe on the roof. No one was in a rush to move from our little sanctuary. But I did get up and fix breakfast for everyone. I made them a very special one because I have been gone and I knew I would be leaving in a matter of hours. I clustered my sensitive plants on the back porch and hung a strand of Christmas lights on them. I have no idea if that will help or not. I have no idea how cold it will get. And the dogs and cats will be outside. Yes, I am worried. They have a horse stall with hay on the ground that they used to like to nestle down in. I freshened it up, and I hope that they will sleep in there. Carolyn is watching them and she will put them in the house if it gets too cold.
I am so torn. One side of me knows I am where I should be. One side of me yearns for home. My heart is being pulled in so many directions.
I drove down in rain and picked Richard up in Larry's Chevy, now Spat's Chevy and we drove south to St. Pete and the hospital. The traffic down from Monticello was light which I was thankful for with the rain. But now it was afternoon and the sky dark with rain which was a mere mist at Spat's, but as the traffic increased so did the precipitation. It was a cold, rainy, slow drive between the weather and the traffic, heading south through towns that have spread into each other. As a child there was so much space in between places. Many were not even towns, just places on the road, a gas station, a cluster of civilization. These replaced now with strip malls and bright shiny business districts. So foreign to me.
And the world rained and our hearts felt that rain and chill as we drove to one of the hardest things anyone would ever have to face. We were going down to sign the orders to start the protocol to have someone removed from life support. Spat knew what Colleen would want. Anyone who has met Colleen for 15 minutes would know that Colleen would not be where she was. Three separate EEG's
The whole family, friends, doctors and nurses have just amazed me. Everyone is trying so hard to be kind with each other. Everyone is focused on Colleen. She has always been the center of the universe, so we are all just falling into our normal places as we revolve around her sheer energy and life.
But now this life is gone, and it was just a matter of removing her from the technology. Everyone was so supportive, and helpful. Everyone made sure that everyone was involved, had a chance to say good by, was taken care of and informed. This is a huge network of extended friends and family and last night everyone waited. Spat sat on Colleen's right holding her hand. Her Dad sat at her left back closest to her foot. Both men who love this woman so devotedly. She has been a handful for each of them on more than one occasion. I could tell you stories that would make your hair curl. I swear that girl. She was precious though. And there they sit, her men, each in a wheel chair, each dealing with physical pain that could break a person. Each, now alone and shared in this community of Colleen, sat with their hearts breaking so loudly it sounded as if the tears each of us shed were pounding on a base drum. I stood behind Spat, wordlessly, holding her foot with my right hand, my left on his shoulder. Handing him Kleenexes. Sending her love. Her baby sister Mo was the one who stayed in with us to whisper hail Mary's and our fathers.
The Colonel told Spat in a moment where it looked like Spat might falter that she had been given last rights three times. She was completely absolved of all sins here and therefore she was ready to go and would be fine. His honest faithful acceptance of this fact was heart wrenching. I suggested we leave him alone for a few minutes. Mr. Keeting and I joined the rest of the sisters in the waiting room. After a little while Spat said he was ready for people to come back in. It took him time to prepare himself. He knew she was ready, but he was not. None of us were, but like a train racing out of control down a mountain you do not have that many choices. Spat quietly said he was ready to see the doctor. I headed out to the waiting room to wait with the sisters while the doctor talked to the others, explaining the long checklist which must be followed exactly and all the fail safes that must be met.
Then they turned off the respirator. It was not as easy as they said it would be. She did not simply act like she had fallen asleep. Her brain was no longer in charge, but her heart was as strong as a bull and refused to go quietly. The four of us, Spat, Mo, Mr. Keeting and I watched her face, rubbed her arms and legs, read the numbers on the machines. Prayers were whispered, some sounded like "I will always love you" others started with "Blessed mother....." I was silent as I witnessed her death, just as she had been with me to witness Larry's. Spat sat in the too small wheel chair, in pain, feeling overwhelmed in every way. He is trying to make decisions and say good by to his lover and friend, while on strong mind altering pain meds, while not being able to eat properly and pain meds are not being taken on time. I can not imagine. I stood there and listened and felt all the feelings in that room. Colleen's Dad working so hard to be the Colonel. To rely on what he is good at. To take care of all of his girls on this night. To take care of all of us.
At one point he walked up to Colleen and rubbed her cheek. He is no stranger to life threatening and debilitating disease. He looked down on his tiny daughter and smiled at her. "I knew you were not going to do this the easy way. You never did."
Colleen's right eye stayed open. It stayed fixed on Spat's eyes. I know she had no brain waves, I know she had no control over such things as eyes, but I stood just behind this scene. That eye looked focus. I did not see fear, I saw instead her complete and utter attention on Spat. This was how she would do this thing, by focusing on her love. Like a mother giving birth is asked to focus on something other then the pain, here at her death Colleen did it It seemed completely intentional and with intelligence. As she took her last gasp her head rolled a little over and the eye closed slightly and focus left.
Her focus helped Spat to have something very Colleen like to focus on. She did not look like herself, hair messed, a hospital gown over that tiny person. But while the nurses and doctors quietly slipped in and out of the room, each one tearing up. Many knew her, others just fell in love with her. This was hard on everyone. They deal with death as part of their work. They are amazing how they let the sorrow of the experience and the family's loss wrap around them, then they appear to shed them as we are with a few tears, humanity and knowing their part in the process.
At 9:39 they announced she was gone. We turned and left. We did not stay in the room any longer. We all knew she was no longer there and was instead in each of us and we wanted to leave now while she still clung to our hearts, our minds, our skin. The feel of her skin still on our hands.
Quietly Spat and I went out into the cold and I drove north on 19 through little traffic and no rain. The trip home seemed so much quicker. Our talk sparse, mostly remembering something to do, or to smile for a moment of something about her. Mostly just quiet in our own thoughts. I did not want to hit him with questions about things that will need to be done. Not tonight. He had already faced the hardest thing to do.
We pulled into the drive and he made it to the house. He is holding up well. He has had weeks of her in the hospital watching the decline and coming to the reality, and yet it is still so unreal. Nothing feels quite right, quiet real today. It is like she is here all around us. And yet, we do not bring up the fact that she will not be walking into her big beautiful kitchen and filling it full with her tiny self, but her huge passion. No, we just acknowledged what had happened only in the most simple terms. We just lived it, we do not need to talk abut it. We finally laid down, he in their bed, I in her guest room which was a favorite haunt of Colleen to snuggle in her 4 poster bed and read. Each of us felt so close to her. And yet, the last night I slept in that bed I knew she might not come back. I had accepted that. Tonight the reality seemed so unreal.
This morning Spat woke early. He is not able to stay in bed too long before he aches. We had little sleep. I am not sure if it was good sleep or not. I know I woke several times and looked into make sure he was OK. We had oatmeal and I broached a few of the things that people will want to help. I named off a few things. I reminded him that he does not have to rush. He does not have to do anything until he is ready. He will have a lot of help. That can be a good thing. But it is hard the more people you have sharing the more overwhelming it can be.
I have spoken to Linda. She is as devastated as a best friend can be. I spoke gently reminding her to be patient with Spat. To help protect him to take his time. She is one who when given sorrow, or happiness she snaps into action. She is excellent at it. Organized, good ideas, willing to do whatever it takes to get it done. Excellent traits and ones we all appreciate in this sweet precious woman. But now her challenge is to be able to work on Spat's schedule and to remember to let him make the choices and decisions. That will be so hard on her when she could take care of everything simply and quickly. They will work it through, some how. They have no choice but to work together on this. They are both hurting and are reverting to their true strong natures. They will be fine. The most important thing is that they both loved Colleen with all their hearts.
Everyone did.
That was just Colleen.
Time to end this long record.
But I needed to say these things.
This is my record, my account of her death.
My obligation as one of those who witnessed the ending of her life here as we know it
Yet, she is never going to leave us.
That is always said
She is like Larry and Colin, these people are just too special to ever leave us.
My memory is so scattered. Some memories so clear and consistent with those also there. Other memories, combinations of many unrelated things. Sometimes hard to know the difference. Being here is doing that. Surrounded by so much Colleen. She loved beautiful things and her home is filled with them. Every where you reach out is a small touch of something worth taking a moment to admire. Madonna's, beautiful crucifixes with crystals and beautifully wrought statutes, mermaids, butterflies, flamingos, collectible glass, orchids, flowers and fairies, feathers and fish. There were so many sides to that tiny little precious person.
The visit was interesting with Dr. M. I am doing just fine. All the numbers are the same as before, but I had asked at the last visit if we could check on my viral load in my liver. He said my numbers are very high. I have been so confused lately, I am so tired all the time. These are all symptoms of my liver being stressed. But the liver enzymes have been good. So I thought I must just be crazy. Apparently not. In my unmedical understanding, the test for the liver enzymes can say good things and my liver can still be stressed with problems. At least I am not loosing my mind. And another reason for me to quit berating myself for being so tired. I could see the mind of the amazing Dr. M whirling with possibilities and the challenge before him. That man's brain seems happiest when he is figuring out how to save a life. How to improve on the quality of life. How to learn something new about how this disease and treatments interact with other chronic diseases. And he loves to win and beat the challenge. The amazing Dr. M is truly what you want in every doctor, kindness, intelligence, passion and joy.
I stayed home Tuesday night with the kids. They crowded up around me and I rested in my red chair. Tired, but glad to be home and with my kids. We went to bed early and I almost slept for 11 hours. Edna nestled up to my left, Bob stretching out on my right. Harry slept in his bed so I was able to stretch out and sleep. I woke to rainfall early and dozed and woke for an hour or so enjoying the song of the drops against the pipe on the roof. No one was in a rush to move from our little sanctuary. But I did get up and fix breakfast for everyone. I made them a very special one because I have been gone and I knew I would be leaving in a matter of hours. I clustered my sensitive plants on the back porch and hung a strand of Christmas lights on them. I have no idea if that will help or not. I have no idea how cold it will get. And the dogs and cats will be outside. Yes, I am worried. They have a horse stall with hay on the ground that they used to like to nestle down in. I freshened it up, and I hope that they will sleep in there. Carolyn is watching them and she will put them in the house if it gets too cold.
I am so torn. One side of me knows I am where I should be. One side of me yearns for home. My heart is being pulled in so many directions.
I drove down in rain and picked Richard up in Larry's Chevy, now Spat's Chevy and we drove south to St. Pete and the hospital. The traffic down from Monticello was light which I was thankful for with the rain. But now it was afternoon and the sky dark with rain which was a mere mist at Spat's, but as the traffic increased so did the precipitation. It was a cold, rainy, slow drive between the weather and the traffic, heading south through towns that have spread into each other. As a child there was so much space in between places. Many were not even towns, just places on the road, a gas station, a cluster of civilization. These replaced now with strip malls and bright shiny business districts. So foreign to me.
And the world rained and our hearts felt that rain and chill as we drove to one of the hardest things anyone would ever have to face. We were going down to sign the orders to start the protocol to have someone removed from life support. Spat knew what Colleen would want. Anyone who has met Colleen for 15 minutes would know that Colleen would not be where she was. Three separate EEG's
The whole family, friends, doctors and nurses have just amazed me. Everyone is trying so hard to be kind with each other. Everyone is focused on Colleen. She has always been the center of the universe, so we are all just falling into our normal places as we revolve around her sheer energy and life.
But now this life is gone, and it was just a matter of removing her from the technology. Everyone was so supportive, and helpful. Everyone made sure that everyone was involved, had a chance to say good by, was taken care of and informed. This is a huge network of extended friends and family and last night everyone waited. Spat sat on Colleen's right holding her hand. Her Dad sat at her left back closest to her foot. Both men who love this woman so devotedly. She has been a handful for each of them on more than one occasion. I could tell you stories that would make your hair curl. I swear that girl. She was precious though. And there they sit, her men, each in a wheel chair, each dealing with physical pain that could break a person. Each, now alone and shared in this community of Colleen, sat with their hearts breaking so loudly it sounded as if the tears each of us shed were pounding on a base drum. I stood behind Spat, wordlessly, holding her foot with my right hand, my left on his shoulder. Handing him Kleenexes. Sending her love. Her baby sister Mo was the one who stayed in with us to whisper hail Mary's and our fathers.
The Colonel told Spat in a moment where it looked like Spat might falter that she had been given last rights three times. She was completely absolved of all sins here and therefore she was ready to go and would be fine. His honest faithful acceptance of this fact was heart wrenching. I suggested we leave him alone for a few minutes. Mr. Keeting and I joined the rest of the sisters in the waiting room. After a little while Spat said he was ready for people to come back in. It took him time to prepare himself. He knew she was ready, but he was not. None of us were, but like a train racing out of control down a mountain you do not have that many choices. Spat quietly said he was ready to see the doctor. I headed out to the waiting room to wait with the sisters while the doctor talked to the others, explaining the long checklist which must be followed exactly and all the fail safes that must be met.
Then they turned off the respirator. It was not as easy as they said it would be. She did not simply act like she had fallen asleep. Her brain was no longer in charge, but her heart was as strong as a bull and refused to go quietly. The four of us, Spat, Mo, Mr. Keeting and I watched her face, rubbed her arms and legs, read the numbers on the machines. Prayers were whispered, some sounded like "I will always love you" others started with "Blessed mother....." I was silent as I witnessed her death, just as she had been with me to witness Larry's. Spat sat in the too small wheel chair, in pain, feeling overwhelmed in every way. He is trying to make decisions and say good by to his lover and friend, while on strong mind altering pain meds, while not being able to eat properly and pain meds are not being taken on time. I can not imagine. I stood there and listened and felt all the feelings in that room. Colleen's Dad working so hard to be the Colonel. To rely on what he is good at. To take care of all of his girls on this night. To take care of all of us.
At one point he walked up to Colleen and rubbed her cheek. He is no stranger to life threatening and debilitating disease. He looked down on his tiny daughter and smiled at her. "I knew you were not going to do this the easy way. You never did."
Colleen's right eye stayed open. It stayed fixed on Spat's eyes. I know she had no brain waves, I know she had no control over such things as eyes, but I stood just behind this scene. That eye looked focus. I did not see fear, I saw instead her complete and utter attention on Spat. This was how she would do this thing, by focusing on her love. Like a mother giving birth is asked to focus on something other then the pain, here at her death Colleen did it It seemed completely intentional and with intelligence. As she took her last gasp her head rolled a little over and the eye closed slightly and focus left.
Her focus helped Spat to have something very Colleen like to focus on. She did not look like herself, hair messed, a hospital gown over that tiny person. But while the nurses and doctors quietly slipped in and out of the room, each one tearing up. Many knew her, others just fell in love with her. This was hard on everyone. They deal with death as part of their work. They are amazing how they let the sorrow of the experience and the family's loss wrap around them, then they appear to shed them as we are with a few tears, humanity and knowing their part in the process.
At 9:39 they announced she was gone. We turned and left. We did not stay in the room any longer. We all knew she was no longer there and was instead in each of us and we wanted to leave now while she still clung to our hearts, our minds, our skin. The feel of her skin still on our hands.
Quietly Spat and I went out into the cold and I drove north on 19 through little traffic and no rain. The trip home seemed so much quicker. Our talk sparse, mostly remembering something to do, or to smile for a moment of something about her. Mostly just quiet in our own thoughts. I did not want to hit him with questions about things that will need to be done. Not tonight. He had already faced the hardest thing to do.
We pulled into the drive and he made it to the house. He is holding up well. He has had weeks of her in the hospital watching the decline and coming to the reality, and yet it is still so unreal. Nothing feels quite right, quiet real today. It is like she is here all around us. And yet, we do not bring up the fact that she will not be walking into her big beautiful kitchen and filling it full with her tiny self, but her huge passion. No, we just acknowledged what had happened only in the most simple terms. We just lived it, we do not need to talk abut it. We finally laid down, he in their bed, I in her guest room which was a favorite haunt of Colleen to snuggle in her 4 poster bed and read. Each of us felt so close to her. And yet, the last night I slept in that bed I knew she might not come back. I had accepted that. Tonight the reality seemed so unreal.
This morning Spat woke early. He is not able to stay in bed too long before he aches. We had little sleep. I am not sure if it was good sleep or not. I know I woke several times and looked into make sure he was OK. We had oatmeal and I broached a few of the things that people will want to help. I named off a few things. I reminded him that he does not have to rush. He does not have to do anything until he is ready. He will have a lot of help. That can be a good thing. But it is hard the more people you have sharing the more overwhelming it can be.
I have spoken to Linda. She is as devastated as a best friend can be. I spoke gently reminding her to be patient with Spat. To help protect him to take his time. She is one who when given sorrow, or happiness she snaps into action. She is excellent at it. Organized, good ideas, willing to do whatever it takes to get it done. Excellent traits and ones we all appreciate in this sweet precious woman. But now her challenge is to be able to work on Spat's schedule and to remember to let him make the choices and decisions. That will be so hard on her when she could take care of everything simply and quickly. They will work it through, some how. They have no choice but to work together on this. They are both hurting and are reverting to their true strong natures. They will be fine. The most important thing is that they both loved Colleen with all their hearts.
Everyone did.
That was just Colleen.
Time to end this long record.
But I needed to say these things.
This is my record, my account of her death.
My obligation as one of those who witnessed the ending of her life here as we know it
Yet, she is never going to leave us.
That is always said
She is like Larry and Colin, these people are just too special to ever leave us.
Well. She has been let free.
ReplyDeleteI love you. Thinking of you all. Tenderly.
Mary
Sitting here with tears for the loss and the closeness you all obviously feel. Colleen was a lucky person to have so many that loved her so much.
ReplyDeleteJust know you are in my thoughts.....