It is the day after my father's funeral, time to regroup and begin again.
Today is our second Sunday school class. This is probably one of the best places to be after experiencing what at First Unitarian we call "a milestone event in our lives." To be among young children is one of the most uplifting activities that can happen in a day. They are unfettered by the problems adults so often let bring them down. Not that they don't get sad or worried, but they tend not to dwell excessively on these things, at least not until they get a little older.
After church I have been invited by one of my families to a bouncy house birthday party. I am really looking forward to this. I am hoping I get to go in the bouncy house!
When I arrive the kids are so excited. They gather at the side of the bouncy house to day hello and press their faces into mine. They invite me into the bouncy house right away. Now I am so excited. I wiggle in though the toddler sized door and bounce and talk to children I currently watch, or have cared for at some other time. It is a bouncy house reunion!
It is an odd thing to be in the bouncy house with a bag pulling at my belly with every bounce. I wonder if this is something I will ever really get used to, the constant small reminder that my body is not all together. I bounce away anyway, trying to keep my bag under control and forget about it. The only time I achieve this is when I get out of the house.
The party is great, I get to visit with some parents I haven't seen in a while, and have more lengthy conversation with some I see every day. Shortly after the cake, I leave to meet my daughter Ayla. We are curious about where my dad is buried, and are planning on going to the cemetery to check it out.
The ride out to Exeter takes awhile, maybe forty five minutes, but it is a scenic. Only a few of the trees have started changing color, but the grey brooding sky makes a dramatic backdrop to the early golden and green leaves. It is as if we are in a movie, sadness with impending rain.
The cemetery is huge. I text my sister to find out where my dad's grave is. We were told yesterday, but numbers don't stick in my head on a regular day. The main part of the cemetery is set up like a big wheel, with spokes that lead to different sections. My dad's grave is far across a huge field of stone markers that lie flush with the earth. Once we find the right section, it is easy to find the grave. It is in a row of graves that is not yet complete, with freshly disturbed tan colored soil. His temporary marker is the last one in the row, with room for many more beside him.
It reminds me of the rows of bunks found in the sleeping quarters on a battleship. Uniform and stark, with a designated space for each enlisted sailor to stretch out in, not an inch more than what is needed.
There are rules posted in the cemetery, about what you can and cannot place on gravesites. There is evidence everywhere that these rules are not strictly followed. Candles, stones, figurines, hats, all kinds of mementos have been placed on the markers by loved ones. They are snapshots of the former lives of those bones that lie beneath the uniform stone markers. My father's grave is topped by a small, temporary green frame with his name on it. Grass seed has been spread, but not watered. It looks so barren.
Ayla and I decide to go to the farmstand just up the road to see what we can get to make his space seem like more more than the dusty patch that it is . There are many beautiful plants bursting with color filling the greenhouse. I try to keep in mind that this plant will be on it's own, and most likely not last long. I end up buying daisies. We go back to the cemetery and encircle them with rocks so they won't blow over. There is a small pile just to the side of his marker, as if someone had anticipating our need.
I realize that my father probably would not care if there were flowers on his grave. He was not a man who worked the earth, or who was drawn to blossoms. These are more for me, and to somehow indicate that here lies a man who was known and loved.
We drive home and they grey sky finally releases it's gathered sorrow. This will help our daisies grow.
In June 2014, I was diagnosed with adenocarcinoma. What this means in regular language is that I have colon cancer. It has also spread to my liver. I am currently being treated for stage 4 liver cancer. Here is my story...
Friday, October 17, 2014
Thursday, October 16, 2014
Funeral Day Continued
Sara, Jill and I climb into the limo that will drive us back to Cumberland. This is an interesting experience. Our driver, who was positioned toward the back of the black car procession of flower and casket cars, had clearly been the lead in getting people safely through difficult merges and intersections. He drove slowly and cautiously. Now that the funeral was over, it felt like he couldn't get home fast enough. We took I95 as long as we could heading toward Cumberland, and did we ever fly. Every curve was a new adventure in life, especially Thurbers Avenue. I didn't ever feel in danger for my life, but boy, did we make good time.
Part of the limo service includes a ride to where ever it is you need to be next. Our destination was the club, but Jill and Sara had both left their cars at the funeral home, so we needed to get dropped there. We wait for my sister Jill's friend who has been caring for my young nephew throughout the two ceremonies.
While we are waiting, Sara and I go through cards that have been left in memory of my father. Not being raised in a Catholic tradition, I am puzzled by the mass cards that we recieved in my father's name. They are beautiful cards, richly decorated and lettered. They have been purchased so that people will continue to pray for my father, and keep the memory of him alive. I find this to be a very loving gesture, but I can't really understand it.
By the time we arrive at the club people have been there for a while eating and drinking. I am surprised by how few people are there, mostly family with a few friends mixed in.
I am so hungry my teeth are hurting. This seems to be the latest new development in chemo side effects. I take a couple of those wonderful little sandwiches catering companies specialize in, the kind on the little torpedo rolls. I quickly need to get another. I can't believe how hungry I am. I sit with my kids and Josh, Filipa, Chauncey and my niece Julia. I wonder if I should be sitting at the "grown up" table for my family, but this is really where I want to be.
Once I am done eating, I go to see my cousins Brenda and Christine who are sitting with their Mom, who is my dad's sister, my Aunt Sandra. I haven't spent any time with them in a few years, so we do our best to catch up. We talk about my Dad, and our health. My Aunt is going through her own cancer issues, that I had heard about but never really checked in on. I realize that sometimes I get so caught up in my own life, I forget to check in with others. We decide will try to do a better job of keeping in touch.
I talk to my Aunt Anne Marie, who is only a couple of years older than I am. I always loved being around my cousins and Anne, we had such fun when we were younger.
My niece Cherelle comes in with her dad, my older brother Howard. Howard is in a wheel chair. He limped through the funeral this morning, but his hip bothers him, so he is using his chair. They came in from Michigan last night, and I haven't really spoken with them. My younger brother Tim has been chauffeuring them around, and comes in too.
I help my brother get some food, and see that he is settled in. We talk a little, when I notice my niece is surveying the crowd, looking a little lost. The last time she and my brother were here was shortly after my mother passed away. She was ten then. Now she is twenty seven. She wants to meet aunts and uncles she barely remembers, but doesn't know where to start. I introduce her around, and she is so excited. It is a rare opportunity to introduce family to family in this way. I love seeing her so happy.
Friends and family come and go, and after a few hours I am not only tired, but starting to get that creeping sensation. This is not chemo weekend, so it is the one where my bags don't stay. I contemplate doing a change in the bathroom at the club, but I can't bring myself to do it for reasons that probably make sense only to me. Instead, Ayla and Chauncey bring me home just in time to avoid a blow out.
Alex drops off Filpa at her house and comes home, Kaileigh drops Josh at the train and comes back too. It is late in the afternoon, and we are hungry. We forgot to take some of the extra sandwiches from the club, so we are on our own. We decide that Indian food from the food court at the mall is what we need, a special comfort food for a long and emotional day.
When we get home, I decide that we should sort though that big box of photos in my closet. I text my sisters, and they want to come over to join in. Jill, Sara, Kaileigh and I spend the next four hours looking through all the photos in my huge bin. We don't even get to all the photo albums. We laugh over hairdo's and clothing choices, and reminisce about where photos were taken. My sisters make piles of photos they like, I won't let them take those they don't. We find quite a few photos of my dad, and put them aside for another time.
Part of the limo service includes a ride to where ever it is you need to be next. Our destination was the club, but Jill and Sara had both left their cars at the funeral home, so we needed to get dropped there. We wait for my sister Jill's friend who has been caring for my young nephew throughout the two ceremonies.
While we are waiting, Sara and I go through cards that have been left in memory of my father. Not being raised in a Catholic tradition, I am puzzled by the mass cards that we recieved in my father's name. They are beautiful cards, richly decorated and lettered. They have been purchased so that people will continue to pray for my father, and keep the memory of him alive. I find this to be a very loving gesture, but I can't really understand it.
By the time we arrive at the club people have been there for a while eating and drinking. I am surprised by how few people are there, mostly family with a few friends mixed in.
I am so hungry my teeth are hurting. This seems to be the latest new development in chemo side effects. I take a couple of those wonderful little sandwiches catering companies specialize in, the kind on the little torpedo rolls. I quickly need to get another. I can't believe how hungry I am. I sit with my kids and Josh, Filipa, Chauncey and my niece Julia. I wonder if I should be sitting at the "grown up" table for my family, but this is really where I want to be.
Once I am done eating, I go to see my cousins Brenda and Christine who are sitting with their Mom, who is my dad's sister, my Aunt Sandra. I haven't spent any time with them in a few years, so we do our best to catch up. We talk about my Dad, and our health. My Aunt is going through her own cancer issues, that I had heard about but never really checked in on. I realize that sometimes I get so caught up in my own life, I forget to check in with others. We decide will try to do a better job of keeping in touch.
I talk to my Aunt Anne Marie, who is only a couple of years older than I am. I always loved being around my cousins and Anne, we had such fun when we were younger.
My niece Cherelle comes in with her dad, my older brother Howard. Howard is in a wheel chair. He limped through the funeral this morning, but his hip bothers him, so he is using his chair. They came in from Michigan last night, and I haven't really spoken with them. My younger brother Tim has been chauffeuring them around, and comes in too.
I help my brother get some food, and see that he is settled in. We talk a little, when I notice my niece is surveying the crowd, looking a little lost. The last time she and my brother were here was shortly after my mother passed away. She was ten then. Now she is twenty seven. She wants to meet aunts and uncles she barely remembers, but doesn't know where to start. I introduce her around, and she is so excited. It is a rare opportunity to introduce family to family in this way. I love seeing her so happy.
Friends and family come and go, and after a few hours I am not only tired, but starting to get that creeping sensation. This is not chemo weekend, so it is the one where my bags don't stay. I contemplate doing a change in the bathroom at the club, but I can't bring myself to do it for reasons that probably make sense only to me. Instead, Ayla and Chauncey bring me home just in time to avoid a blow out.
Alex drops off Filpa at her house and comes home, Kaileigh drops Josh at the train and comes back too. It is late in the afternoon, and we are hungry. We forgot to take some of the extra sandwiches from the club, so we are on our own. We decide that Indian food from the food court at the mall is what we need, a special comfort food for a long and emotional day.
When we get home, I decide that we should sort though that big box of photos in my closet. I text my sisters, and they want to come over to join in. Jill, Sara, Kaileigh and I spend the next four hours looking through all the photos in my huge bin. We don't even get to all the photo albums. We laugh over hairdo's and clothing choices, and reminisce about where photos were taken. My sisters make piles of photos they like, I won't let them take those they don't. We find quite a few photos of my dad, and put them aside for another time.
Wednesday, October 15, 2014
Funeral Day
Saturday, September 20
This morning is my father's funeral.
The whole house gets up early to get ready. Kaileigh, Josh, Alex and Filipa will go in one car, Steven and I are getting picked up by Ayla and Chauncey. We need to be at the funeral home by eight fifteen, so we leave at seven thirty. Of course we have left too early once again, and arrive almost a half an hour early.
At the funeral home we wait, not really sure what we are supposed to do. Once my sisters arrive, we all go inside. Everything looks the same as when we arrived last night, neat and orderly. We take the seats along the wall and wait.
The priest who is to conduct the ceremony comes in, and we meet him for the first time. The Reverend Galligan will be doing a short ceremony at the funeral home, and then a Mass of Christian Burial at St Joseph's Church shortly after. It was our hope that my father's Mass would be at his childhood parish, but the priest there said he couldn't do the ceremony since he hadn't seen my father there in recent memory. This was upsetting and seemed rather cruel.
Reverend Galligan spoke to us briefly, and wanted to know what my father's hobbies or interests were. Not one of us answered this question for the man. I know there were things that ran through my head, Nascar, watching auto rescue shows, collecting tools, reading the newspaper cover to cover each day, spending time with his family, but I never mentioned one thing. This poor man had to deliver a short celebration of my father's life, not knowing much about him. When he got up to speak though, he did a beautiful job. He spoke about how we start from seeds, and grow like the flowers that are around my father's casket. How we grow, then die and then go to Christ. When he talks about the crucifix over the casket, I need to look up. I am not sure there is one there. There it is, towering above the casket, just as it should be.
After prayers are said, it is such a long wait before anything happens. Everyone sits quietly, while the video collage and its new age non offensive sound track drones on and on. I wish I could get up and say something about my dad, but I can't. I wish some other brave soul would, but it doesn't happen, We sit and wait.
Finally they call the pall bearers to form an honor guard.
Then we wait, as each occupant in every car in the procession is called. Jill, Sara, Steven and I go last, we ride in the limo. This is not how we were thinking we wanted to go. Ayla and Chauncey should have come in the limo too, it would have been easier on Chauncey's healing leg. It is too late to change things though, the cars are already lined up. There never seemed to be an appropriate time to discuss this.
We drive to St. Joseph's Church, just a short way down Mendon Road. We wait until the other family members are all parked and in the church. Then we follow my father in, Jill, Sara, Steven and me.
There is a bagpiper standing in front of the door to the church playing Amazing Grace. My father would have liked this.
The pastor gives us quiet direction about what is about to happen next. He tells us our dad has been blessed with holy water once in his life, during his baptism, and now when he will go to heaven. There is water sprinkled on the casket by the priest, and then a covering is carefully unfolded over it by Jill, Sara, Steven and myself.
It feels strange to me to be taking place in this very sacred and religious ceremony.
We follow my father down the aisle, Steven and I together, then Jill and Sara. There is a pew for us in the front of the church. My kids are all in one pew in the middle of the church. They seem so far away.
The priest does a wonderful job, considering he never met my father. He calls his ceremony a celebration of life, and talks about how my dad was a family man, well loved by his community and his friends. There are songs and prayers, none of which I know. There is a communion ceremony, which seems like everyone takes part in, except the front row of family.
When this is all over, we follow the casket back out of the church, stopping to be blessed once more and to have the holy blanket removed.
At this point we ask Ayla if she wants to drive to the cemetery in the limo with us. She does, and Steve ends up driving with Chauncey in her car. The ride to the Veteran's Cemetery is in Exeter is long, forty five minutes of a funeral procession. We cross two major intersections, merging onto route 295, and then route 95, finally crossing four lanes of traffic to get onto route 4. We are amazed at how well everyone manages to keep together.
We arrive at the cemetery and are instructed to stay in the limo until the casket is removed from the hurst. The pall bearers carry the casket into the chapel with no help from wheels. There is a flag draped over the casket, it looks a little crooked. My dad would not be happy.
The chapel is small and sparse. There is a small lectern in the corner and a base to rest the casket on. There are floor to ceiling windows on either side of the room with grey flagstone walls behind the casket and the wall opposite. The funeral director leads the family in, and shows us to a small row of pews. All of the other guests stand behind or beside us. The chapel is very full. The flag on my father's coffin is now straightened.
The voice of the military chaplain booms from behind the lectern. He looks like Friar Tuck in his vestments.
A male and female soldier stand behind the casket as the prayers are said. Once the prayers are done, the soldiers stand at opposite ends of the casket and salute. My brother Howard is beside me. He salutes too.
The flag is taken off the coffin and expertly folded by the two soldiers with mechanical precision. Fold, crease, fold crease, until a neat triangle of stars in a blue field is left at the end. The flag is handed to my Uncle Dana, my dad's brother and best friend.
We are told there will be a military salute, and to prepare ourselves. I am not sure what this means until I hear the beginning of taps played outside the large window to my right. It starts and fades like an unfinished tune. Then a shot is fired. It is startling. A friend cries out in surprise, but I don't hear her, I only know because she apologizes later.
I was expecting the rifle shots, but still surprised as they rang out. There is a shot, the clanging of the spent cartridge falling on the slate below, the clicking of the rifle being reloaded and all repeated two more times with uniform precision. The sound fades, the ceremony is over.
This is our last goodbye to what remains of my father.
There are windows on either side of the slate wall behind the casket, and out of one I can see the arm of some kind of heavy machinery. It doesn't occur to me until I see a truck zip past behind the crowd of mourners gathered outside the chapel that this is the machine that loads the casket into the cement casing in which my father's remains will be entombed.
People mill about outside, wiping away tears, hugging, commenting on the beauty of the day. Small talk to help ease the pain, the emptiness, the loss.
The driver stands by the limo door, looking at us in a pleading way. He opens and closes the door slightly as a signal that he is ready to go. We are not, so we take our time until our guests start to leave. Everyone has been invited to the Filibuster Club in Cumberland for refreshment. This is a place where my dad was so well known and loved.
Before we climb into the limo, I say goodbye to Steven. He is going to New York City to take part in the People's Climate March. He was going to cancel his plans to march, but I wanted him to go. He needed to be there for his organization, the Humanists of Rhode Island, as well as representing for our family.
This morning is my father's funeral.
The whole house gets up early to get ready. Kaileigh, Josh, Alex and Filipa will go in one car, Steven and I are getting picked up by Ayla and Chauncey. We need to be at the funeral home by eight fifteen, so we leave at seven thirty. Of course we have left too early once again, and arrive almost a half an hour early.
At the funeral home we wait, not really sure what we are supposed to do. Once my sisters arrive, we all go inside. Everything looks the same as when we arrived last night, neat and orderly. We take the seats along the wall and wait.
The priest who is to conduct the ceremony comes in, and we meet him for the first time. The Reverend Galligan will be doing a short ceremony at the funeral home, and then a Mass of Christian Burial at St Joseph's Church shortly after. It was our hope that my father's Mass would be at his childhood parish, but the priest there said he couldn't do the ceremony since he hadn't seen my father there in recent memory. This was upsetting and seemed rather cruel.
Reverend Galligan spoke to us briefly, and wanted to know what my father's hobbies or interests were. Not one of us answered this question for the man. I know there were things that ran through my head, Nascar, watching auto rescue shows, collecting tools, reading the newspaper cover to cover each day, spending time with his family, but I never mentioned one thing. This poor man had to deliver a short celebration of my father's life, not knowing much about him. When he got up to speak though, he did a beautiful job. He spoke about how we start from seeds, and grow like the flowers that are around my father's casket. How we grow, then die and then go to Christ. When he talks about the crucifix over the casket, I need to look up. I am not sure there is one there. There it is, towering above the casket, just as it should be.
After prayers are said, it is such a long wait before anything happens. Everyone sits quietly, while the video collage and its new age non offensive sound track drones on and on. I wish I could get up and say something about my dad, but I can't. I wish some other brave soul would, but it doesn't happen, We sit and wait.
Finally they call the pall bearers to form an honor guard.
Then we wait, as each occupant in every car in the procession is called. Jill, Sara, Steven and I go last, we ride in the limo. This is not how we were thinking we wanted to go. Ayla and Chauncey should have come in the limo too, it would have been easier on Chauncey's healing leg. It is too late to change things though, the cars are already lined up. There never seemed to be an appropriate time to discuss this.
We drive to St. Joseph's Church, just a short way down Mendon Road. We wait until the other family members are all parked and in the church. Then we follow my father in, Jill, Sara, Steven and me.
There is a bagpiper standing in front of the door to the church playing Amazing Grace. My father would have liked this.
The pastor gives us quiet direction about what is about to happen next. He tells us our dad has been blessed with holy water once in his life, during his baptism, and now when he will go to heaven. There is water sprinkled on the casket by the priest, and then a covering is carefully unfolded over it by Jill, Sara, Steven and myself.
It feels strange to me to be taking place in this very sacred and religious ceremony.
We follow my father down the aisle, Steven and I together, then Jill and Sara. There is a pew for us in the front of the church. My kids are all in one pew in the middle of the church. They seem so far away.
The priest does a wonderful job, considering he never met my father. He calls his ceremony a celebration of life, and talks about how my dad was a family man, well loved by his community and his friends. There are songs and prayers, none of which I know. There is a communion ceremony, which seems like everyone takes part in, except the front row of family.
When this is all over, we follow the casket back out of the church, stopping to be blessed once more and to have the holy blanket removed.
At this point we ask Ayla if she wants to drive to the cemetery in the limo with us. She does, and Steve ends up driving with Chauncey in her car. The ride to the Veteran's Cemetery is in Exeter is long, forty five minutes of a funeral procession. We cross two major intersections, merging onto route 295, and then route 95, finally crossing four lanes of traffic to get onto route 4. We are amazed at how well everyone manages to keep together.
We arrive at the cemetery and are instructed to stay in the limo until the casket is removed from the hurst. The pall bearers carry the casket into the chapel with no help from wheels. There is a flag draped over the casket, it looks a little crooked. My dad would not be happy.
The chapel is small and sparse. There is a small lectern in the corner and a base to rest the casket on. There are floor to ceiling windows on either side of the room with grey flagstone walls behind the casket and the wall opposite. The funeral director leads the family in, and shows us to a small row of pews. All of the other guests stand behind or beside us. The chapel is very full. The flag on my father's coffin is now straightened.
The voice of the military chaplain booms from behind the lectern. He looks like Friar Tuck in his vestments.
A male and female soldier stand behind the casket as the prayers are said. Once the prayers are done, the soldiers stand at opposite ends of the casket and salute. My brother Howard is beside me. He salutes too.
The flag is taken off the coffin and expertly folded by the two soldiers with mechanical precision. Fold, crease, fold crease, until a neat triangle of stars in a blue field is left at the end. The flag is handed to my Uncle Dana, my dad's brother and best friend.
We are told there will be a military salute, and to prepare ourselves. I am not sure what this means until I hear the beginning of taps played outside the large window to my right. It starts and fades like an unfinished tune. Then a shot is fired. It is startling. A friend cries out in surprise, but I don't hear her, I only know because she apologizes later.
I was expecting the rifle shots, but still surprised as they rang out. There is a shot, the clanging of the spent cartridge falling on the slate below, the clicking of the rifle being reloaded and all repeated two more times with uniform precision. The sound fades, the ceremony is over.
This is our last goodbye to what remains of my father.
There are windows on either side of the slate wall behind the casket, and out of one I can see the arm of some kind of heavy machinery. It doesn't occur to me until I see a truck zip past behind the crowd of mourners gathered outside the chapel that this is the machine that loads the casket into the cement casing in which my father's remains will be entombed.
People mill about outside, wiping away tears, hugging, commenting on the beauty of the day. Small talk to help ease the pain, the emptiness, the loss.
The driver stands by the limo door, looking at us in a pleading way. He opens and closes the door slightly as a signal that he is ready to go. We are not, so we take our time until our guests start to leave. Everyone has been invited to the Filibuster Club in Cumberland for refreshment. This is a place where my dad was so well known and loved.
Before we climb into the limo, I say goodbye to Steven. He is going to New York City to take part in the People's Climate March. He was going to cancel his plans to march, but I wanted him to go. He needed to be there for his organization, the Humanists of Rhode Island, as well as representing for our family.
Tuesday, October 14, 2014
Thursday, September 18
I wake up this morning surprised. I went to sleep last night expecting that I would a wake to one of those electric mornings. I slept until six, with no jitters. Was it because of the injection I had on Monday to boost my white blood cells? Is it because I started taking vitamins? Whatever the reason, I slept well.
My neighbor Polly stops by with a collection of black clothing from her closet. The only appropriate thing I own is a dark grey wrap dress that Polly gave me last week when she was cleaning out her closet. I had asked her earlier if she might have a black sweater I could borrow, and she brings me an assortment of things to choose from.
Filipa comes by to help out with daycare. We make cupcakes and cards to celebrate the third birthday of one of our friends. Alex and Filipa watch the kids so I can go with Steven to his doctor's appointment. Because Steven and I arrive home at the same time that a mom comes to visit, we end up having an upside down lunch today. Upside down lunch is when we get to have dessert before we eat our lunch. Oftentimes it is because something has interrupted lunch prep, or I am not quite ready when the kids are and I know they are hungry enough and like lunch enough that they will eat it even after having something sweet first. Today I am not so sure that everyone will like lunch, but we sing "Happy Birthday" frost our cupcakes and gobble them up. To my surprise, everyone eats lunch too!
Kaileigh texted me that she is coming in from Somerville to have dinner and hang out. This may seem very Rhode Island of me, but I can't believe she wants to come down again with such a traffic riddled drive. When she gets here, we manage to gather everyone together, Kaileigh, Ayla, Alex, Chauncey, Filipa, Steven and me, and we go to the Gourmet House to get some dinner.
We figure out what time we will have to meet for the wake tomorrow and say our goodbyes.
September 19
Wake Day
I awake early feeling jittery, these side effects are late this week. My right ear is plugged up and I can't hear well, so I decide to put some drops in it to help clear it up. While I am waiting for the drops to work their way into my ear, I fall back asleep until six. If only it could always be this easy.
Steven is up already gathering laundry. It is unusual that he should be up before me, but this week he has had a burst of organizational energy. Because of the funeral on Saturday, he won't be able to get laundry done before he needs to leave for the Climate Change march in New York, so he is getting it done today.
When I get up, I debate whether I should shower now or later. The weekend where my bags don't stay adhered is here, so I put too much thought into this matter. I decide I will be rushed later, so it will be better to shower now, and start the day with a fresh bag. I apply one of the bags I haven't had a problem with. I dress in a wool blend dress with leggings, but it is cool today and I am still cold, even though I wear a coat and gloves outside. Time to start doubling up on the leggings.
There are only three children today, which makes a very easy day. Filipa is coming to help so I can leave for my father's wake in the afternoon.
Once the kids are down for naps, Steven, Alex and I get ready. Ayla comes by to pick us up, and we arrive at the funeral home half an hour early. Kaileigh, Josh, Tim, Jill and Sara arrive shortly after.
We go in to get ready for our night. My father lies there in peaceful repose, a rosary laced through his fingers. This seems so odd, because I don't ever think I have seen a rosary in our house growing up. This was important to my dad though, to have a Christian burial, and this is part of it.
My dad is dressed more casually than anyone who is coming to see him tonight. He has on a white tee shirt under his flannel shirt, and his USS Barcelona jacket that he wore pretty much everywhere. His baseball cap rests on the edge of the coffin. This is classic Freddy.
The funeral home has made a video collage set to music that plays softly by the entrance to the room. There are flowers around the coffin, a heavy curtain behind. A plush funeral kneeler is beside the coffin, chairs placed along the right wall for family to greet mourners. There are only a few chairs, but we pull more over to accommodate my dad's sisters and brother. One of his brothers and his mother are not able to attend.
We sit in a long row, greeting people after they pay their respects to my dad. Jill, Sara and Tim are at the head of the line. I come next, and my dad's sisters, Sandra and Anne Marie, and then his brother Dana holding the last seat.
Many people come through. Some are friends of family or relatives, some relations we have met at family events and not seen in a long time. There are relations we have only heard of and never met. There are people my father has known for years, some that knew him as a child, people he worked with. Some younger than my father, some peers, some older. So many people my sisters and brother and I have never met before. It is a short three hours, spent greeting many, many people.
This is gratifying and surprising. If you were to ask me who may father's friends were, I would only be able to list a few names. It turns out my dad had this secret life away from us, where many people loved and respected him. There were stories of sweet things my father had done for people, ways he helped them out, encouraged and inspired them. This was clearly a different person than the one I knew growing up, where he would come home from work exhausted falling asleep in an easy chair snoring until late in the night. This was my quiet dad, illuminated by the love of those who knew him. They were here to express their sorrow and grieve for their loss, but sharing stories of a man they loved and cherished. A man who would help out his friends and family however he could. This was a man who didn't compromise his ideals, lived life on his own terms and in the end is remembered by the kindness and love in his heart. Who could ask for a better legacy than that?
My neighbor Polly stops by with a collection of black clothing from her closet. The only appropriate thing I own is a dark grey wrap dress that Polly gave me last week when she was cleaning out her closet. I had asked her earlier if she might have a black sweater I could borrow, and she brings me an assortment of things to choose from.
Filipa comes by to help out with daycare. We make cupcakes and cards to celebrate the third birthday of one of our friends. Alex and Filipa watch the kids so I can go with Steven to his doctor's appointment. Because Steven and I arrive home at the same time that a mom comes to visit, we end up having an upside down lunch today. Upside down lunch is when we get to have dessert before we eat our lunch. Oftentimes it is because something has interrupted lunch prep, or I am not quite ready when the kids are and I know they are hungry enough and like lunch enough that they will eat it even after having something sweet first. Today I am not so sure that everyone will like lunch, but we sing "Happy Birthday" frost our cupcakes and gobble them up. To my surprise, everyone eats lunch too!
Kaileigh texted me that she is coming in from Somerville to have dinner and hang out. This may seem very Rhode Island of me, but I can't believe she wants to come down again with such a traffic riddled drive. When she gets here, we manage to gather everyone together, Kaileigh, Ayla, Alex, Chauncey, Filipa, Steven and me, and we go to the Gourmet House to get some dinner.
We figure out what time we will have to meet for the wake tomorrow and say our goodbyes.
September 19
Wake Day
I awake early feeling jittery, these side effects are late this week. My right ear is plugged up and I can't hear well, so I decide to put some drops in it to help clear it up. While I am waiting for the drops to work their way into my ear, I fall back asleep until six. If only it could always be this easy.
Steven is up already gathering laundry. It is unusual that he should be up before me, but this week he has had a burst of organizational energy. Because of the funeral on Saturday, he won't be able to get laundry done before he needs to leave for the Climate Change march in New York, so he is getting it done today.
When I get up, I debate whether I should shower now or later. The weekend where my bags don't stay adhered is here, so I put too much thought into this matter. I decide I will be rushed later, so it will be better to shower now, and start the day with a fresh bag. I apply one of the bags I haven't had a problem with. I dress in a wool blend dress with leggings, but it is cool today and I am still cold, even though I wear a coat and gloves outside. Time to start doubling up on the leggings.
There are only three children today, which makes a very easy day. Filipa is coming to help so I can leave for my father's wake in the afternoon.
Once the kids are down for naps, Steven, Alex and I get ready. Ayla comes by to pick us up, and we arrive at the funeral home half an hour early. Kaileigh, Josh, Tim, Jill and Sara arrive shortly after.
We go in to get ready for our night. My father lies there in peaceful repose, a rosary laced through his fingers. This seems so odd, because I don't ever think I have seen a rosary in our house growing up. This was important to my dad though, to have a Christian burial, and this is part of it.
My dad is dressed more casually than anyone who is coming to see him tonight. He has on a white tee shirt under his flannel shirt, and his USS Barcelona jacket that he wore pretty much everywhere. His baseball cap rests on the edge of the coffin. This is classic Freddy.
The funeral home has made a video collage set to music that plays softly by the entrance to the room. There are flowers around the coffin, a heavy curtain behind. A plush funeral kneeler is beside the coffin, chairs placed along the right wall for family to greet mourners. There are only a few chairs, but we pull more over to accommodate my dad's sisters and brother. One of his brothers and his mother are not able to attend.
We sit in a long row, greeting people after they pay their respects to my dad. Jill, Sara and Tim are at the head of the line. I come next, and my dad's sisters, Sandra and Anne Marie, and then his brother Dana holding the last seat.
Many people come through. Some are friends of family or relatives, some relations we have met at family events and not seen in a long time. There are relations we have only heard of and never met. There are people my father has known for years, some that knew him as a child, people he worked with. Some younger than my father, some peers, some older. So many people my sisters and brother and I have never met before. It is a short three hours, spent greeting many, many people.
This is gratifying and surprising. If you were to ask me who may father's friends were, I would only be able to list a few names. It turns out my dad had this secret life away from us, where many people loved and respected him. There were stories of sweet things my father had done for people, ways he helped them out, encouraged and inspired them. This was clearly a different person than the one I knew growing up, where he would come home from work exhausted falling asleep in an easy chair snoring until late in the night. This was my quiet dad, illuminated by the love of those who knew him. They were here to express their sorrow and grieve for their loss, but sharing stories of a man they loved and cherished. A man who would help out his friends and family however he could. This was a man who didn't compromise his ideals, lived life on his own terms and in the end is remembered by the kindness and love in his heart. Who could ask for a better legacy than that?
Monday, October 13, 2014
Tuesday, September 16
Sara is off for the rest of the week to make arrangement for the funeral, so Filipa comes to help with daycare today. It is great that she is able to help on such short notice. She makes it so easy for us by being so helpful, and the kids really like her.
Ayla texts me during the day. She wants to make macaroni and cheese for dinner. We will all go to Sara's house this evening to share it. I am going to bring over my photo collection, and we will go through them together to find some nice pictures of my father for the photo video collage that will be shown at his wake. Moving the photos proves to be a daunting task, the large container I have them in is not easily extracted from where it resides in the back of my closet. There are also so many of them, it is not really practical to bring them to another location.
I take several shoe boxes that are on the top of the bin and hope we find a few good ones.
We have a nice gathering, Sara, me, Steven, Tim, Kaileigh, Ayla and Chauncey. We are hoping my sister Jill will be arriving from Ohio sometime soon, before we need to leave.
The mac and cheese is so good, and everyone of us is hungry. We need to be sure we leave some for when Jill gets here.
After we eat, we start into the photo collection. We accumulate a small pile of pictures from a lopsided part of my dad's life. There are a few from when my mom and dad got married, a few from when my siblings and I were kids, and many from when my children were younger. My sister has found a small pile from her collection of photos. I know I have more, but it would take us hours to get through them, and it would have to be done at my house. We don't have that time right now.
As it gets later, I need to leave. I am tired. Kaileigh needs to drive back to Somerville, Ayla has to work in the morning. Jill has still not arrived, but hopefully I will see her and my nephew tomorrow.
Wednesday, September 17
Today I have an appointment with Dr. Lentricia. I am looking forward to going, because I have a few questions for him.
Alex and Kaileigh will watch the kids while I am at the doctors. It is so nice that Kaileigh is willing to come from Somerville to help out for such a short time.
My appointment happens to be at the same time that my siblings and my father's siblings will be meeting at the funeral home to make arrangements for the wake and funeral. I have decided to keep my doctor's appointment, since there will be so many people making those other plans. My sister Sara knows what my father expected to have for a funeral, I know that she will do what is best.
Steve and I drive to the doctor's office. The drive is not long, since it is just after rush hour. We don't have to wait too long before we get shown to an exam room, and soon we see Dr. Lentricia. Things look good, he is pleased that I am looking and feeling so well. I ask him if it is possible for the colon surgery I will be ready for soon, the one where he removes the mass in my colon and reconnects it, to be done at the same time as my liver operation. He tells me it can be done, but we would need to confer with the liver surgeon first. It will be up to him.
I also ask if he might have any insight as to why my ostomy bags don't always stay adhered to me. I offer my theory about a change in the flora on my skin or my sweat from the chemo, affecting the adhesive in some way, since it is usually fine except for a few days, the weekend after I am disconnected from the chemo. He tells me the chemo can affect the adhesive. At least now I know it is not the way I apply my bags, it is something that just need to be aware of.
He tells me that I can take iron supplements, since there has been a concern about my iron levels. It is interesting how disconnected knowledge seems to be in the different practices. My oncologist and oncology nurses are worried about a supplement making me constipated, and it's affect on my stoma. My surgeon says, sometimes people get constipated, even people who have stomas. If there is a problem, you can take a laxative. One doctor says no sit ups, the other says sit ups are fine, any exercise I want to do is fine. I know that no one knows everything, but it seems there should be a better flow of information.
In all, everything looks and sounds good, and I should return in three months, unless there is a surgery before then.
When I get back home, Kaileigh leaves, and Alex helps me until we get everyone down for naps. I will sing, he will read.
Before I start naps, I am craving a Klondike ice cream bar. While I eat it in secret in the kitchen, I realize this is not the best idea. My mouth is still pretty sensitive to the cold, and by the time I am done, my tongue feels fat and numb, as if I have had a shot of novacaine. When I start to sing, s comes out as th. I have lost my low notes too. This is not my best singing day.
Alex does much better, coaxing one of the children into falling asleep by reading quietly and stroking her hair. Soon after she falls asleep, he does too, a hazard of afternoon storytelling. The two look so sweet sitting on the couch, her little shoulder leaning into him, his head propped on top of hers. I cover them with a cozy blanket, and they both have a good nap.
Later in the day I talk to Sara and find out the arrangements for the funeral. The wake will be Friday afternoon, and the funeral Saturday, both in Cumberland. Following the church service there will be a military funeral at the Veteran's Cemetery in Exeter. This will be followed by a "time" at the club where my dad had so many friends.
Ayla texts me during the day. She wants to make macaroni and cheese for dinner. We will all go to Sara's house this evening to share it. I am going to bring over my photo collection, and we will go through them together to find some nice pictures of my father for the photo video collage that will be shown at his wake. Moving the photos proves to be a daunting task, the large container I have them in is not easily extracted from where it resides in the back of my closet. There are also so many of them, it is not really practical to bring them to another location.
I take several shoe boxes that are on the top of the bin and hope we find a few good ones.
We have a nice gathering, Sara, me, Steven, Tim, Kaileigh, Ayla and Chauncey. We are hoping my sister Jill will be arriving from Ohio sometime soon, before we need to leave.
The mac and cheese is so good, and everyone of us is hungry. We need to be sure we leave some for when Jill gets here.
After we eat, we start into the photo collection. We accumulate a small pile of pictures from a lopsided part of my dad's life. There are a few from when my mom and dad got married, a few from when my siblings and I were kids, and many from when my children were younger. My sister has found a small pile from her collection of photos. I know I have more, but it would take us hours to get through them, and it would have to be done at my house. We don't have that time right now.
As it gets later, I need to leave. I am tired. Kaileigh needs to drive back to Somerville, Ayla has to work in the morning. Jill has still not arrived, but hopefully I will see her and my nephew tomorrow.
Wednesday, September 17
Today I have an appointment with Dr. Lentricia. I am looking forward to going, because I have a few questions for him.
Alex and Kaileigh will watch the kids while I am at the doctors. It is so nice that Kaileigh is willing to come from Somerville to help out for such a short time.
My appointment happens to be at the same time that my siblings and my father's siblings will be meeting at the funeral home to make arrangements for the wake and funeral. I have decided to keep my doctor's appointment, since there will be so many people making those other plans. My sister Sara knows what my father expected to have for a funeral, I know that she will do what is best.
Steve and I drive to the doctor's office. The drive is not long, since it is just after rush hour. We don't have to wait too long before we get shown to an exam room, and soon we see Dr. Lentricia. Things look good, he is pleased that I am looking and feeling so well. I ask him if it is possible for the colon surgery I will be ready for soon, the one where he removes the mass in my colon and reconnects it, to be done at the same time as my liver operation. He tells me it can be done, but we would need to confer with the liver surgeon first. It will be up to him.
I also ask if he might have any insight as to why my ostomy bags don't always stay adhered to me. I offer my theory about a change in the flora on my skin or my sweat from the chemo, affecting the adhesive in some way, since it is usually fine except for a few days, the weekend after I am disconnected from the chemo. He tells me the chemo can affect the adhesive. At least now I know it is not the way I apply my bags, it is something that just need to be aware of.
He tells me that I can take iron supplements, since there has been a concern about my iron levels. It is interesting how disconnected knowledge seems to be in the different practices. My oncologist and oncology nurses are worried about a supplement making me constipated, and it's affect on my stoma. My surgeon says, sometimes people get constipated, even people who have stomas. If there is a problem, you can take a laxative. One doctor says no sit ups, the other says sit ups are fine, any exercise I want to do is fine. I know that no one knows everything, but it seems there should be a better flow of information.
In all, everything looks and sounds good, and I should return in three months, unless there is a surgery before then.
When I get back home, Kaileigh leaves, and Alex helps me until we get everyone down for naps. I will sing, he will read.
Before I start naps, I am craving a Klondike ice cream bar. While I eat it in secret in the kitchen, I realize this is not the best idea. My mouth is still pretty sensitive to the cold, and by the time I am done, my tongue feels fat and numb, as if I have had a shot of novacaine. When I start to sing, s comes out as th. I have lost my low notes too. This is not my best singing day.
Alex does much better, coaxing one of the children into falling asleep by reading quietly and stroking her hair. Soon after she falls asleep, he does too, a hazard of afternoon storytelling. The two look so sweet sitting on the couch, her little shoulder leaning into him, his head propped on top of hers. I cover them with a cozy blanket, and they both have a good nap.
Later in the day I talk to Sara and find out the arrangements for the funeral. The wake will be Friday afternoon, and the funeral Saturday, both in Cumberland. Following the church service there will be a military funeral at the Veteran's Cemetery in Exeter. This will be followed by a "time" at the club where my dad had so many friends.
Saturday, October 11, 2014
Monday, September 15
I start my day worried about bone pain.
I walk over to the Miriam at eight to get an injection of pegfilgrastim, which will help my body produce more white blood cells. On the recommendation of Carolyn, one of the oncology nurses, I take some acetaminophen before I leave my house. This may help to prevent the bone pain. Ugg. That sounds so unpleasant.
Jen takes me in, takes my vitals, and gives me my shot. Quick and easy. She tells me where I am most likely to get pain, if I get it. It seems to be centered around the big bones where white cells are made. This makes sense to me. Also the sternum or anyplace I have had a broken bone. I think they tell you about the sternum so you don't think you are having a heart attack.
I feel fuzzy brained as Steven and I walk home. By the time I get home, the feeling has worn off.
Sara and I take the kids to the playground today. It is sunny and warm, not quite warm enough for no coats when we leave. While we are there it warms up, and all coats are off.
We usually spend some time at the playground section, and then head over to the fountain to look for treasure and play around the fountain. We have a boat I have attached a string to, and we walk it around the edge. It is fun for the kids, and they do a good job of waiting for their turn. We have a problem keeping the boat from capsizing, but the kids will let us right it if they are bothered by it, or they pull it on its side. One of the boys gets upset when the boat tips, and as I reach to fix it, he slides into the fountain. I grab him before he is all the way in, and Sara and I get his clothes and shoes off and quickly wrap him in my sweater and coat. He is upset, but cheers up quickly, especially when he gets carried all the way home.
At home we have lunch and naps. I take a nap while the kids are asleep. I get up before Sara has to leave at three thirty to take my dad to the doctor.
I get a call from Sara around four, and she is crying hysterically. My father was in her car, and they were leaving the nursing home for his doctor's appointment. He leaned back and his eyes rolled up into his head. She stopped her car and ran into the nursing home for help. They got a crash cart and started working on him in the driveway while they waited for the rescue to arrive.
Sara was upset they wouldn't let her go in the rescue, so a police officer gave her a ride to RI Hospital.
My father was unresponsive, and though they worked on him all the way to the hospital, they weren't able to restart his heart.
I felt badly my sister was in such distress and that I couldn't get to her right away. Kaileigh was here, but out for a walk. Ayla came right over, and by the time she arrived, Kaileigh had returned. The three of us went to the hospital together. Steve took care of the last child for me, and then took the bus over to meet us.
The emergency room staff took us to find Sara right away. She was sitting alone in a family room, with a box of tissues on her lap. She told us that our dad, Grampy to my girls, had died. It was the most helpless feeling in the world to see someone you love so distraught, sobbing uncontrollably. I was upset that my father had passed on, but more upset by the anguish and quilt my sister was feeling. She thought she had killed him somehow, waking him up to take him to his doctor appointment.
My sister, who had taken my father in after he had been living with me and I needed to give my middle school aged son his room back. She let my father live with her, and increasingly became more responsible for his care as his health declined. She helped him keep track of his appointments, his medications and getting him to dialysis when he needed help. She brought him to the emergency room more than once into the wee hours of the morning. She was so devoted to taking good care of him. Sara had cleaned his clothes for him, let him take over her living room when he could no longer climb the stairs, and made sure he ate. She was an incredible and loving care giver to him, and now she felt like she had let him down somehow,
I volunteered to call his sister, Anne Marie, to let her know what had happened. This is one of those things you cannot realize how difficult it is going to be until the person you are calling has picked up the phone. She didn't sound like herself to me, so I asked her a couple of times if it was really her. Then I had to tell her the sad news. It was heartbreaking to hear her cry on the other end of the line. I don't know what she had been doing before hand. I don't know who was with her to give her a hug or help her deal with the news I had just delivered. It was one of the hardest things I have ever had to do.
She would call her brother Dana, to let him know, and come to the hospital to say goodbye.
My Dad was Catholic, so Sara had the staff call in a priest to issue last rights. Kaileigh, Ayla, Sara and I all went to see them administered and to say goodbye. It was surreal to see my father laying there motionless on the gurney. He was still intubated from the resuscitaion attempt, they couldn't remove the tubing until the medical examiner arrived. His arms were bruised from all the medical procedures he had gone through in the past few weeks. It was hard to think of his repose as peaceful with that ridged tubing coming out of his mouth.
We watched as the priest rubbed him with oil and said Hail Mary over him. We stood there motionless and silent, watching, waiting, not knowing what to do. When it was all over, we each took a turn saying our goodbyes in our own individual way. I touched his hands, still warm, but cooling, rubbed my nose against his, touched my forehead with his, gently kissing it before turning away. He still smells like my dad, just cooler and waxy. I hug my daughters after they say their good byes, and my sister, before we leave his bedside.
Shortly after we return to the family room, we start to talk about where the wake should be. My brother Tim, Steven and Chauncey arrive followed by Dana and his wife Terry, and Anne Marie and her husband Rick. We hug and say how sorry we are for each other. We lost our father, they lost their older brother.
Tim and I go with them to say goodbye to their brother. Anne Marie is sobbing so hard, but trying to be strong. I give her a big hug. It is sad to see them looking and touching and saying goodbye. I was worried that I had done the wrong thing, told them the wrong way, made it harder for them by calling them here, but somehow it seemed like the only thing to do. How do you prepare for this? How do you know what to do, who to call and when? It is all such a a surprise when it happens, even though we all know that eventually, it will.
We go over what we need to do next. Call my brother in Michigan, my sister in Ohio.
Although my father lived in East Providence for most of his life, his friends and most of his family are in Cumberland where he grew up. We decide the wake should be held in his hometown. His brother will call the funeral home, and he thinks he can get a bagpiper, something my dad always said he wanted at his funeral.
These things decided, we move on to other things.
We leave the hospital, nothing to sign, we can just go. In a world filled with so much paperwork it is a little unsettling, like it is not official. It feels strange to just leave, and then things will just happen because we said this is what we wanted.
We need to get Alex, from Whole Foods. His shift is just ending, and he doesn't know yet.
Sara's car is still at the Nursing home, so Steve, Alex and I go to get it, and pick up my dad's things. We are looking for his phone, the one that Sara picked up for him on Saturday, because he couldn't get his old one to work. It was not in his shredded clothing at the hospital, and we don't know where it is.
When I get to the nursing home, I get Sara's keys from the receptionist. She tells me she is sorry and that they did all they could. I thank her and ask her if it is okay to get my dads stuff. She tells me to go on up and get it. I ask if I need to do anything else, she tells me no. They can take care of any lose ends through the mail.
It feels weird to just take my dads stuff from the room without telling anyone, so I go to the nurses station to tell them what I am doing. I realize this is more for me than them, they seem clueless about what had happened. One of the nurses starts looking around in a back room for his belongings until I explain that this has all just happened this afternoon, and that his things are still in his room.
We don't have a bag, so we pile the few things he has there, some clothes, his candy, odds and ends. No phone.
We go outside and look around the driveway for it, thinking it may have dropped in the grass when they were working on him, but not knowing exactly where they were. Alex calls over from the car. He called the number, and can hear it ringing in the car. We unlock it and find it in the console. Dad must have put it there when he got into the car.
As I sit down to get the phone, I can smell my dad in the car. This is going to be hard for my sister, I think. The scent is so strong, and so fresh.
By the time we make it back to my house, everyone is so hungry. Ayoko had brought over some chili earlier in the day, Kaileigh brought some saag panier when she came over and it turns out to be like the miracle of the fishes. The food we have manages to feed seven hungry people. It is delicious and warming. There are even cupcakes Ayla had brought over for my birthday. we are all well fed.
Before we finish dinner, the organ donor people call. It is so strange, we wonder what they would use? Did they know my father's history? No kidneys, his lungs, liver and heart weren't in good shape, he was blind in one eye. Sara asks if they can call tomorrow.
I walk over to the Miriam at eight to get an injection of pegfilgrastim, which will help my body produce more white blood cells. On the recommendation of Carolyn, one of the oncology nurses, I take some acetaminophen before I leave my house. This may help to prevent the bone pain. Ugg. That sounds so unpleasant.
Jen takes me in, takes my vitals, and gives me my shot. Quick and easy. She tells me where I am most likely to get pain, if I get it. It seems to be centered around the big bones where white cells are made. This makes sense to me. Also the sternum or anyplace I have had a broken bone. I think they tell you about the sternum so you don't think you are having a heart attack.
I feel fuzzy brained as Steven and I walk home. By the time I get home, the feeling has worn off.
Sara and I take the kids to the playground today. It is sunny and warm, not quite warm enough for no coats when we leave. While we are there it warms up, and all coats are off.
We usually spend some time at the playground section, and then head over to the fountain to look for treasure and play around the fountain. We have a boat I have attached a string to, and we walk it around the edge. It is fun for the kids, and they do a good job of waiting for their turn. We have a problem keeping the boat from capsizing, but the kids will let us right it if they are bothered by it, or they pull it on its side. One of the boys gets upset when the boat tips, and as I reach to fix it, he slides into the fountain. I grab him before he is all the way in, and Sara and I get his clothes and shoes off and quickly wrap him in my sweater and coat. He is upset, but cheers up quickly, especially when he gets carried all the way home.
At home we have lunch and naps. I take a nap while the kids are asleep. I get up before Sara has to leave at three thirty to take my dad to the doctor.
I get a call from Sara around four, and she is crying hysterically. My father was in her car, and they were leaving the nursing home for his doctor's appointment. He leaned back and his eyes rolled up into his head. She stopped her car and ran into the nursing home for help. They got a crash cart and started working on him in the driveway while they waited for the rescue to arrive.
Sara was upset they wouldn't let her go in the rescue, so a police officer gave her a ride to RI Hospital.
My father was unresponsive, and though they worked on him all the way to the hospital, they weren't able to restart his heart.
I felt badly my sister was in such distress and that I couldn't get to her right away. Kaileigh was here, but out for a walk. Ayla came right over, and by the time she arrived, Kaileigh had returned. The three of us went to the hospital together. Steve took care of the last child for me, and then took the bus over to meet us.
The emergency room staff took us to find Sara right away. She was sitting alone in a family room, with a box of tissues on her lap. She told us that our dad, Grampy to my girls, had died. It was the most helpless feeling in the world to see someone you love so distraught, sobbing uncontrollably. I was upset that my father had passed on, but more upset by the anguish and quilt my sister was feeling. She thought she had killed him somehow, waking him up to take him to his doctor appointment.
My sister, who had taken my father in after he had been living with me and I needed to give my middle school aged son his room back. She let my father live with her, and increasingly became more responsible for his care as his health declined. She helped him keep track of his appointments, his medications and getting him to dialysis when he needed help. She brought him to the emergency room more than once into the wee hours of the morning. She was so devoted to taking good care of him. Sara had cleaned his clothes for him, let him take over her living room when he could no longer climb the stairs, and made sure he ate. She was an incredible and loving care giver to him, and now she felt like she had let him down somehow,
I volunteered to call his sister, Anne Marie, to let her know what had happened. This is one of those things you cannot realize how difficult it is going to be until the person you are calling has picked up the phone. She didn't sound like herself to me, so I asked her a couple of times if it was really her. Then I had to tell her the sad news. It was heartbreaking to hear her cry on the other end of the line. I don't know what she had been doing before hand. I don't know who was with her to give her a hug or help her deal with the news I had just delivered. It was one of the hardest things I have ever had to do.
She would call her brother Dana, to let him know, and come to the hospital to say goodbye.
My Dad was Catholic, so Sara had the staff call in a priest to issue last rights. Kaileigh, Ayla, Sara and I all went to see them administered and to say goodbye. It was surreal to see my father laying there motionless on the gurney. He was still intubated from the resuscitaion attempt, they couldn't remove the tubing until the medical examiner arrived. His arms were bruised from all the medical procedures he had gone through in the past few weeks. It was hard to think of his repose as peaceful with that ridged tubing coming out of his mouth.
We watched as the priest rubbed him with oil and said Hail Mary over him. We stood there motionless and silent, watching, waiting, not knowing what to do. When it was all over, we each took a turn saying our goodbyes in our own individual way. I touched his hands, still warm, but cooling, rubbed my nose against his, touched my forehead with his, gently kissing it before turning away. He still smells like my dad, just cooler and waxy. I hug my daughters after they say their good byes, and my sister, before we leave his bedside.
Shortly after we return to the family room, we start to talk about where the wake should be. My brother Tim, Steven and Chauncey arrive followed by Dana and his wife Terry, and Anne Marie and her husband Rick. We hug and say how sorry we are for each other. We lost our father, they lost their older brother.
Tim and I go with them to say goodbye to their brother. Anne Marie is sobbing so hard, but trying to be strong. I give her a big hug. It is sad to see them looking and touching and saying goodbye. I was worried that I had done the wrong thing, told them the wrong way, made it harder for them by calling them here, but somehow it seemed like the only thing to do. How do you prepare for this? How do you know what to do, who to call and when? It is all such a a surprise when it happens, even though we all know that eventually, it will.
We go over what we need to do next. Call my brother in Michigan, my sister in Ohio.
Although my father lived in East Providence for most of his life, his friends and most of his family are in Cumberland where he grew up. We decide the wake should be held in his hometown. His brother will call the funeral home, and he thinks he can get a bagpiper, something my dad always said he wanted at his funeral.
These things decided, we move on to other things.
We leave the hospital, nothing to sign, we can just go. In a world filled with so much paperwork it is a little unsettling, like it is not official. It feels strange to just leave, and then things will just happen because we said this is what we wanted.
We need to get Alex, from Whole Foods. His shift is just ending, and he doesn't know yet.
Sara's car is still at the Nursing home, so Steve, Alex and I go to get it, and pick up my dad's things. We are looking for his phone, the one that Sara picked up for him on Saturday, because he couldn't get his old one to work. It was not in his shredded clothing at the hospital, and we don't know where it is.
When I get to the nursing home, I get Sara's keys from the receptionist. She tells me she is sorry and that they did all they could. I thank her and ask her if it is okay to get my dads stuff. She tells me to go on up and get it. I ask if I need to do anything else, she tells me no. They can take care of any lose ends through the mail.
It feels weird to just take my dads stuff from the room without telling anyone, so I go to the nurses station to tell them what I am doing. I realize this is more for me than them, they seem clueless about what had happened. One of the nurses starts looking around in a back room for his belongings until I explain that this has all just happened this afternoon, and that his things are still in his room.
We don't have a bag, so we pile the few things he has there, some clothes, his candy, odds and ends. No phone.
We go outside and look around the driveway for it, thinking it may have dropped in the grass when they were working on him, but not knowing exactly where they were. Alex calls over from the car. He called the number, and can hear it ringing in the car. We unlock it and find it in the console. Dad must have put it there when he got into the car.
As I sit down to get the phone, I can smell my dad in the car. This is going to be hard for my sister, I think. The scent is so strong, and so fresh.
By the time we make it back to my house, everyone is so hungry. Ayoko had brought over some chili earlier in the day, Kaileigh brought some saag panier when she came over and it turns out to be like the miracle of the fishes. The food we have manages to feed seven hungry people. It is delicious and warming. There are even cupcakes Ayla had brought over for my birthday. we are all well fed.
Before we finish dinner, the organ donor people call. It is so strange, we wonder what they would use? Did they know my father's history? No kidneys, his lungs, liver and heart weren't in good shape, he was blind in one eye. Sara asks if they can call tomorrow.
Friday, October 10, 2014
Sunday, September 14
It's my birthday! I celebrate right away be sleeping in until eight, something I rarely do.
When I come downstairs, there is a stack of packages on the table. I don't know who they are from. It is a fox mug and fox salt and pepper shakers. Maybe they are from Alex?
Steven makes me some eggs for breakfast, and then I ride my bike off to church. I am dressed nice and warmly and there are no tingles anywhere.
Today is the first day of Sunday school, a day where we start in the big church to share the flame. We light our Children's chapel chalice, the symbol of our religion, and bring it next door to our children's chapel. It is also the Blessing of the Backpacks, which is something new this year. It is to help our children and other back pack carriers to start this year off with a good feeling, and wishes for a good year. It also ties into a project at the church where they are collecting backpacks to support the education of girls, through this organization: http://khadarlis.org/.
Since it is a chemo week, I am wearing my backpack, and get it blessed. This consists of some kind and encouraging words said in unison from the congregation and a flaming chalice backpack tag to hang off our packs. One of my daycare friends is there, and we are happy that we now have matching backpacks, even though hers is pink and mine is purple. So fun!
Our class is small today, only seven children, and two of them are daycare friends. We will see if our class grows as the month goes on. We have a labyrinth we sit on for our sharing circle, a time where we light our own classroom chalice and pass around the talking stick to share things about ourselves and get to know each other better. Our word for the day is threshold, a beginning place. That special place between the inside and the outside of a door or entryway, where a new adventure can begin or end. We decorate the inside of our door to make it friendly and welcoming to all who enter. It is a good way to begin our year.
My ride home is hot, the day has warmed up and I am wearing a wool dress which was great for the ride in. Not so great for the ride home. At least there is a nice downhill ride near the end.
I wait for Sandy to come and unhook me, and then have some soup that my neighbor Polly has made for me, along with warm chocolate pudding I made while waiting. With whipped cream of course.
I thank Alex for the mug and salt shakers and he confesses that they are not from him. They were on the steps when he came in last night, so he put them on the table so I would find them in the morning. A mystery! Is it my sister, or my friend Nancy. The foxes are in a Talbot's box, this could be a good clue.
After lunch, I head to the garden, and so many friends pop by to give me birthday wishes! It is such a fun way to spend the day.
I am still having trouble with liquids, room temperature water gives me the tingles. I need to drink hot stuff, but I don't like tea that much. I make a cup no matter how I intend to finish it, it always seems to go cold before I do. The only thing I like less than hot tea, is cold tea. I decide to bring my water bottle out and set it in the sun, and it is the perfect temperature to drink. I may have to start keeping water in a sunny spot when it is cooler out.
I manage to get all the front gardens weeded and the lawn mowed. I still have more to do, but find that I am running out of daylight.
I finally hang the peace flags up that friends from church have made for me. I line my driveway beside the house with them, because there are so many, and I spend so much time here. I can also see them out my kitchen window, another place where I spend a fair amount of time. They are cheerful and look beautiful.
By the time I am done, I am too tired to go and visit my father. It seems too complicated to figure out how to get there and I am tired. I will go and visit him tomorrow.
When I come downstairs, there is a stack of packages on the table. I don't know who they are from. It is a fox mug and fox salt and pepper shakers. Maybe they are from Alex?
Steven makes me some eggs for breakfast, and then I ride my bike off to church. I am dressed nice and warmly and there are no tingles anywhere.
Today is the first day of Sunday school, a day where we start in the big church to share the flame. We light our Children's chapel chalice, the symbol of our religion, and bring it next door to our children's chapel. It is also the Blessing of the Backpacks, which is something new this year. It is to help our children and other back pack carriers to start this year off with a good feeling, and wishes for a good year. It also ties into a project at the church where they are collecting backpacks to support the education of girls, through this organization: http://khadarlis.org/.
 | |
| My blessed backpack, with birthday fox wearing a backpack. |
Since it is a chemo week, I am wearing my backpack, and get it blessed. This consists of some kind and encouraging words said in unison from the congregation and a flaming chalice backpack tag to hang off our packs. One of my daycare friends is there, and we are happy that we now have matching backpacks, even though hers is pink and mine is purple. So fun!
Our class is small today, only seven children, and two of them are daycare friends. We will see if our class grows as the month goes on. We have a labyrinth we sit on for our sharing circle, a time where we light our own classroom chalice and pass around the talking stick to share things about ourselves and get to know each other better. Our word for the day is threshold, a beginning place. That special place between the inside and the outside of a door or entryway, where a new adventure can begin or end. We decorate the inside of our door to make it friendly and welcoming to all who enter. It is a good way to begin our year.
My ride home is hot, the day has warmed up and I am wearing a wool dress which was great for the ride in. Not so great for the ride home. At least there is a nice downhill ride near the end.
I wait for Sandy to come and unhook me, and then have some soup that my neighbor Polly has made for me, along with warm chocolate pudding I made while waiting. With whipped cream of course.
I thank Alex for the mug and salt shakers and he confesses that they are not from him. They were on the steps when he came in last night, so he put them on the table so I would find them in the morning. A mystery! Is it my sister, or my friend Nancy. The foxes are in a Talbot's box, this could be a good clue.
 |
| A foxy group of birthday foxes! |
After lunch, I head to the garden, and so many friends pop by to give me birthday wishes! It is such a fun way to spend the day.
I am still having trouble with liquids, room temperature water gives me the tingles. I need to drink hot stuff, but I don't like tea that much. I make a cup no matter how I intend to finish it, it always seems to go cold before I do. The only thing I like less than hot tea, is cold tea. I decide to bring my water bottle out and set it in the sun, and it is the perfect temperature to drink. I may have to start keeping water in a sunny spot when it is cooler out.
I manage to get all the front gardens weeded and the lawn mowed. I still have more to do, but find that I am running out of daylight.
By the time I am done, I am too tired to go and visit my father. It seems too complicated to figure out how to get there and I am tired. I will go and visit him tomorrow.
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