Monday, April 1, 2013
Tears
Missing you terribly today. I love you. I want to see you, hear your voice again, hug you, tell you that I love you...just one more time.
Sunday, February 3, 2013
Missing Scott
This is random, but these thoughts won't leave my brain, and I am hoping writing them down will.
I have had two dreams about Scott. The first one was only a few days after Scott passed away. He looked the same to me as he did before he got sick. He looked well. He looked happy. His body was whole. He was sitting at the familar dining table at our Grandma Croziers home (Grandma died August 2012). I can remember nothing more. I don't recall speaking to Scott but I did wake up feeling an overwhelming sense of peace, of comfort, and a knowledge that Scott was okay.
My second dream was more of a nightmare. Scott was riding his horse down the street, I was sitting on the sidewalk. Waiting for him, watching for him. I was excited to see him. He rode by smiled and waved at me. A few yards past, his horse reared and fell over on him. Scott was pinned under the horse. I ran to Scott, and I immediately knew that if I didn't help him, he would die. I was trying desperately to save him. To move the horse off of him. To pull him out from under. Screaming for help, but my cries were not heard. He died in my arms and even in my dream, I felt the sadness, the guilt, the desperation nearly consume me.
I woke and immediately knew that "it was just a dream" but those feelings didn't go away. I also felt like there was some truth to the dream...I feel so sad, I couldn't save Scott. That WE couldn't save Scott. That modern medicine couldn't save Scott. That no matter how we tried, how much we prayed, how much we hoped, Scott still died.
I think about Scott everyday. Most of the time, I feel extreme guilt. I feel guilty that I get to continue to live, to experience life, to hug my babies, and he doesn't.
**Growing up my Mom always cooked a big Sunday dinner. For dessert we would always have either warm tapioca pudding or divinity. Scott LOVED tapioca pudding. A few weeks ago, I decided I wanted to make tapioca pudding for my family. The recipe I have is not "quick and easy", you have to soak the tapioca overnight, use a double boiler to get the milk just the right temperature, beat and fold in the eggs whites and on and on. I went through the steps and although it wasn't quite as good as my Mom's it was a close second. I thought it was delicious. I served up bowls for my family, and for reasons I will never understand :) they didn't share the tapioca love.
As I dumped out their bowls in the trash, I found myself crying. Crying because I was able to enjoy tapioca and Scott wasn't. Crying because I felt like my kids not liking it, was somehow not honoring Scott. I wanted to share Scott's favorite food with my kids and have them somehow associate this little thing with him. I know it's completely ridiculous. I know it's just tapioca....I know it has nothing to do with honoring or loving Scott. I don't know why I reacted the way I did, other than I think I was just sad and missing Scott.
**I babysat Scott's granddaughter McCall (best few days ever!!!) and I literally could not put her down. I held her and loved her every second we had her. I felt like I needed to somehow pass on every ounce of love I could to her, to pass on a love from her Grandpa in heaven. I felt moments of guilt, when I thought about the fact that I got to love on and hug this baby and Scott didn't.
**My Hannah is super tall, when I was combing her hair one day, I commented to her that she might grow up to be as tall as her Uncle Scott! She looked at me and said "Umm Mom, you remember that Scott died, right?" Ensue tears. Yes, baby Girl I remember.
Scott dying is still just so sad. It's so sad to think that the years I lived with him, will likely not be as many years as I live without him. I'm so afraid, that my kids won't literally remember Scott (of course, I will keep his memory with them for all the days that I live). That birthdays, Christmas, baptisms, will pass and Scott won't be here. How is that okay? How does one, not ache because of it?
I have had two dreams about Scott. The first one was only a few days after Scott passed away. He looked the same to me as he did before he got sick. He looked well. He looked happy. His body was whole. He was sitting at the familar dining table at our Grandma Croziers home (Grandma died August 2012). I can remember nothing more. I don't recall speaking to Scott but I did wake up feeling an overwhelming sense of peace, of comfort, and a knowledge that Scott was okay.
My second dream was more of a nightmare. Scott was riding his horse down the street, I was sitting on the sidewalk. Waiting for him, watching for him. I was excited to see him. He rode by smiled and waved at me. A few yards past, his horse reared and fell over on him. Scott was pinned under the horse. I ran to Scott, and I immediately knew that if I didn't help him, he would die. I was trying desperately to save him. To move the horse off of him. To pull him out from under. Screaming for help, but my cries were not heard. He died in my arms and even in my dream, I felt the sadness, the guilt, the desperation nearly consume me.
I woke and immediately knew that "it was just a dream" but those feelings didn't go away. I also felt like there was some truth to the dream...I feel so sad, I couldn't save Scott. That WE couldn't save Scott. That modern medicine couldn't save Scott. That no matter how we tried, how much we prayed, how much we hoped, Scott still died.
I think about Scott everyday. Most of the time, I feel extreme guilt. I feel guilty that I get to continue to live, to experience life, to hug my babies, and he doesn't.
**Growing up my Mom always cooked a big Sunday dinner. For dessert we would always have either warm tapioca pudding or divinity. Scott LOVED tapioca pudding. A few weeks ago, I decided I wanted to make tapioca pudding for my family. The recipe I have is not "quick and easy", you have to soak the tapioca overnight, use a double boiler to get the milk just the right temperature, beat and fold in the eggs whites and on and on. I went through the steps and although it wasn't quite as good as my Mom's it was a close second. I thought it was delicious. I served up bowls for my family, and for reasons I will never understand :) they didn't share the tapioca love.
As I dumped out their bowls in the trash, I found myself crying. Crying because I was able to enjoy tapioca and Scott wasn't. Crying because I felt like my kids not liking it, was somehow not honoring Scott. I wanted to share Scott's favorite food with my kids and have them somehow associate this little thing with him. I know it's completely ridiculous. I know it's just tapioca....I know it has nothing to do with honoring or loving Scott. I don't know why I reacted the way I did, other than I think I was just sad and missing Scott.
**I babysat Scott's granddaughter McCall (best few days ever!!!) and I literally could not put her down. I held her and loved her every second we had her. I felt like I needed to somehow pass on every ounce of love I could to her, to pass on a love from her Grandpa in heaven. I felt moments of guilt, when I thought about the fact that I got to love on and hug this baby and Scott didn't.
**My Hannah is super tall, when I was combing her hair one day, I commented to her that she might grow up to be as tall as her Uncle Scott! She looked at me and said "Umm Mom, you remember that Scott died, right?" Ensue tears. Yes, baby Girl I remember.
Scott dying is still just so sad. It's so sad to think that the years I lived with him, will likely not be as many years as I live without him. I'm so afraid, that my kids won't literally remember Scott (of course, I will keep his memory with them for all the days that I live). That birthdays, Christmas, baptisms, will pass and Scott won't be here. How is that okay? How does one, not ache because of it?
Wednesday, December 5, 2012
THANK YOU! and a final post
Thank you all for your love, kind words, cards, flowers, hugs, meals, and so much more. Your support has carried us through a most difficult time. How can we thank you enough? How can we repay you? The truth is that we can not. Please know though, how grateful we are.
What a tribute and honor to Scott! I really can't believe how many people attended the services for my brother. Thank you for being a part of our lives and rallying around us when we needed it most.
I have always loved "living in the city" but seeing the support from Scott's little community was inspiring. You just can't know people that well in "the big city" and I was a little envious. Tremonton/Bothwell my childhood home, thank you for loving my brother and our family so much.
It has been an honor to write this little blog. I've loved it and I've hated it. I appreciated your kind comments about the blog. You've only got to hear one side of this story, my perspective, and I hope that I have done it justice.
The words would sometimes flow like water from the sink, but other times the words just could not be written and I struggled. There are gaps and missing chapters in this little story of Scott's when I just couldn't get the words out.
I think all of us feel a gap now. A part is missing. Something not "right". And once again, words can't describe it. I feel a sadness I have never experienced before. I have grieved before and mourned the loss of a loved one, but this is different. Like my Mom said, "I'm not sad for Scott, but I am selfishly sad for me" I am incredibly sad for all of us that have to live without Scott.
I feel like a different person than I was six days ago. I wonder if other people, strangers, can see the sadness that hangs over me. I wonder if they sense that something isn't "right" with me. I wonder if there will be a time, when I don't cry so easily. I wonder if I'll be able to fall asleep without thoughts of the tragedy we've been through consuming my mind. I wonder if the ache in my heart will ever be lessened. I wonder if losing Scott will ever get easier.
I am desperately clinging to hope. I see my children and can't help but know, that despite my protests, life will continue to go on and there is so much to LIVE FOR! I see our sweet McCall our little angel, and despite the sadness I can't help but smile. Our family will always mourn, always miss Scott, and will always wonder about the what if''s and the why's but however small, there is a place in me that knows we are going to be okay.
Thank you so much for following along, for reading my words, and most importantly caring so much about Scott.
Much Love,
April
Psalm 34:18 The Lord is nigh unto them that are of a broken heart; and asaveth such as be bof a contrite spirit
What a tribute and honor to Scott! I really can't believe how many people attended the services for my brother. Thank you for being a part of our lives and rallying around us when we needed it most.
I have always loved "living in the city" but seeing the support from Scott's little community was inspiring. You just can't know people that well in "the big city" and I was a little envious. Tremonton/Bothwell my childhood home, thank you for loving my brother and our family so much.
It has been an honor to write this little blog. I've loved it and I've hated it. I appreciated your kind comments about the blog. You've only got to hear one side of this story, my perspective, and I hope that I have done it justice.
The words would sometimes flow like water from the sink, but other times the words just could not be written and I struggled. There are gaps and missing chapters in this little story of Scott's when I just couldn't get the words out.
I think all of us feel a gap now. A part is missing. Something not "right". And once again, words can't describe it. I feel a sadness I have never experienced before. I have grieved before and mourned the loss of a loved one, but this is different. Like my Mom said, "I'm not sad for Scott, but I am selfishly sad for me" I am incredibly sad for all of us that have to live without Scott.
I feel like a different person than I was six days ago. I wonder if other people, strangers, can see the sadness that hangs over me. I wonder if they sense that something isn't "right" with me. I wonder if there will be a time, when I don't cry so easily. I wonder if I'll be able to fall asleep without thoughts of the tragedy we've been through consuming my mind. I wonder if the ache in my heart will ever be lessened. I wonder if losing Scott will ever get easier.
I am desperately clinging to hope. I see my children and can't help but know, that despite my protests, life will continue to go on and there is so much to LIVE FOR! I see our sweet McCall our little angel, and despite the sadness I can't help but smile. Our family will always mourn, always miss Scott, and will always wonder about the what if''s and the why's but however small, there is a place in me that knows we are going to be okay.
Thank you so much for following along, for reading my words, and most importantly caring so much about Scott.
Much Love,
April
Psalm 34:18 The Lord is nigh unto them that are of a broken heart; and asaveth such as be bof a contrite spirit
Friday, November 30, 2012
Scott's Obituary
Scott Douglas Newman
1971-2012
After a hard fought battle, Scott Douglas Newman died of
Alpha 1 Antitrypsin Deficiency on 30 November 2012 .
He was born in Logan ,
Utah 12 February 1971 to Douglas and
Tamera Crozier Newman.
Viewings will be held at the Tremonton West Stake Center on Monday 3 December, from 6-8:00pm and Tuesday from 9:30-11:30am. Funeral services 4 December, at 12:00pm at the Tremonton West Stake Center Chapel. Burial at Valley View Cementery in Bothwell, Utah
Scott Newman
Scott RAN into the arms of a loving Heavenly Father and many family members who love him so, just now.
Scott--We are so happy you will not suffer anymore but heartbroken to have to live without you. We love you and will miss you everyday. Save us a spot and help us be happy until we can be with you again.
Scott--We are so happy you will not suffer anymore but heartbroken to have to live without you. We love you and will miss you everyday. Save us a spot and help us be happy until we can be with you again.
Thursday, November 29, 2012
Memories of Scott
When I started this blog, I truly thought it would be a documentation of Scott getting a liver transplant and a "happily, healthy ever after." As you know, that is not meant to be and the ending will be much different then I thought. I knew there would be obstacles, bumps in the roads, struggles and that writing those would be difficult, but this, this is indescribable.
I'm not sure I'm cut out to write a grief blog, a my brother is dying blog. The words I want to write are sad, depressing, and sometimes the things I think aren't very nice or spiritual.
Scott has life in him still. But THIS IS NO LIFE.
He is essentially unconscious. He does not respond to us talking to him. When we tried to re-position him last night, he did make some moaning noises that would literally BREAK YOUR HURT (and did ours).
He has not eaten or drank anything for over two days now.
He is so swollen. His eyelids and lips are puffy.
He is working very hard to breath now. He is breathing noisily and those breaths appear labored and difficult.
I spent yesterday evening and last night at Scott's place. It was so sad but also parts of it were "nice" We sat around Scott for most of the evening and told him we loved him. We shared our favorite memories of Scott with one another and I'll share some with you.
From our Mom:
Scott got to play little league baseball before any other boys his age because his birthday falls early in the year. Mom and Dad were so proud of their little athlete. Most of the season...he sat on the bench. One particular game, Scott got to play and was sent out to right field...you know the place where generally there isn't a whole lot of action. Finally, a ball was hit straight to right field. Everyone looked for Scott but could not see him anywhere on the field. Mom finally spotted him at the swings, swinging away.
Scott went to his first day of school. He didn't love it. He came home and told Mom and Dad that "the farm needed him more" and he wouldn't be attending school anymore.
From Shaylie:
Scott and Shaylie were driving home from Logan. Scott immediately turned the truck around and said he needed some radishes. These radishes were growing in a field they just passed... He told Shaylie to get out and dig up some radishes for him. The digging tool he gave her---some pliers! Shaylie said the radishes were about a foot under and there she sat digging up radishes, with pliers, while Scott smiled from the truck. Shaylie didn't know that Scott knew who's field it was and was getting a real kick out of this. She extracted the radishes and brought it back to her Dad. Scott took a big bite out of it and insisted Shaylie do the same.
From all the kids:
One year for Christmas, the kids had been arguing and fighting. They were still quite young. Scott decided that they would only be getting coal for Christmas. Despite Janiece's protests on Christmas eve Scott didn't put out the kids toys and real presents. Instead he had a large sac of coal that the kids woke up to Christmas morning. After a few tears from the girls, with a huge smile, and big laugh Scott let the kids in on his little joke.
From Janiece: (and a few others)
Scott was terrible at keeping secrets! He just was too excited to keep his surprise inside. He couldn't wait to ask Janiece to marry him once he got that ring.
From Me:
When Shaunie was only a few years old, I was babysitting her at Scott and Janiece's house. They had a little bum lamb outside. I looked out the window and saw that somehow that little lamb had gotten out of his pen. I opened up the door to try and catch the lamb and it ran right into the house! I finally got it out, but I did not want Scott (or anyone) to find out about this little escapade. I triple checked that there were no signs of lamb entry and thought that I could keep my secret. However, when Scott came home, I was just sure that somehow, sometime he was going to find out. I had to tell him and I did. He laughed and smiled and said "Hell April, I told you to tend Shaunie not the lamb!"
From Cody (Janiece's brother):
Cody told us a great story of Scott helping him train a colt. I'm afraid I won't get the details correct, but I will try. But if you see Cody, you need to hear his version. Scott and Cody were training a colt named Misty. Misty reared up and threw Scott off. Cody was holding on for dear life to Misty's reigns and finally got her settled down. Scott jumped up but said "he had had enough" They got ready to leave when they saw a neighbors horse get out and run up the road. Cody got on Misty and rode after the neighbors horse. Unfortunately the neighbor's horse was hit by a truck. Scott was close behind and of course even though he "had had enough" they got the trailer and stayed for a long time helping out the people involved in the accident. That was Scott-always willing, always there to help.
From Deb (Janiece's Mom):
When Scott and Janiece were dating, the Coombs were having party up at Grandpa's Grove. There was a large rope swing that overhung a lake. You could swing out and drop into the lake. Scott jumped on the swing...but he didn't let go. He swung back and smacked right into the tree. Deb, thought Scott had to be dead. Scott couldn't stop laughing.
There were many moments of happy remembering last night. But I also experienced one of the saddest moments of my life. I know that whenever I think about it, I will cry. A mother's love for her children is one of the strongest emotions on earth, I believe.
Scott stirred a little when my Mom, Dad, Melissa and I were huddled around him. We started telling him how much we loved him. My Mom, crying, bent down and kissed Scott and said "You've been a good son"
From one of my favorite Children's Book:
"I'll love you forever
I'll like you for always
As long as I'm living
My baby you'll be"
If any of you have memories of Scott you would be willing to share, we would love for you to write them here under the comments. It brings some happiness into this dark world of sadness for all of us.
I'm not sure I'm cut out to write a grief blog, a my brother is dying blog. The words I want to write are sad, depressing, and sometimes the things I think aren't very nice or spiritual.
Scott has life in him still. But THIS IS NO LIFE.
He is essentially unconscious. He does not respond to us talking to him. When we tried to re-position him last night, he did make some moaning noises that would literally BREAK YOUR HURT (and did ours).
He has not eaten or drank anything for over two days now.
He is so swollen. His eyelids and lips are puffy.
He is working very hard to breath now. He is breathing noisily and those breaths appear labored and difficult.
I spent yesterday evening and last night at Scott's place. It was so sad but also parts of it were "nice" We sat around Scott for most of the evening and told him we loved him. We shared our favorite memories of Scott with one another and I'll share some with you.
From our Mom:
Scott got to play little league baseball before any other boys his age because his birthday falls early in the year. Mom and Dad were so proud of their little athlete. Most of the season...he sat on the bench. One particular game, Scott got to play and was sent out to right field...you know the place where generally there isn't a whole lot of action. Finally, a ball was hit straight to right field. Everyone looked for Scott but could not see him anywhere on the field. Mom finally spotted him at the swings, swinging away.
Scott went to his first day of school. He didn't love it. He came home and told Mom and Dad that "the farm needed him more" and he wouldn't be attending school anymore.
From Shaylie:
Scott and Shaylie were driving home from Logan. Scott immediately turned the truck around and said he needed some radishes. These radishes were growing in a field they just passed... He told Shaylie to get out and dig up some radishes for him. The digging tool he gave her---some pliers! Shaylie said the radishes were about a foot under and there she sat digging up radishes, with pliers, while Scott smiled from the truck. Shaylie didn't know that Scott knew who's field it was and was getting a real kick out of this. She extracted the radishes and brought it back to her Dad. Scott took a big bite out of it and insisted Shaylie do the same.
From all the kids:
One year for Christmas, the kids had been arguing and fighting. They were still quite young. Scott decided that they would only be getting coal for Christmas. Despite Janiece's protests on Christmas eve Scott didn't put out the kids toys and real presents. Instead he had a large sac of coal that the kids woke up to Christmas morning. After a few tears from the girls, with a huge smile, and big laugh Scott let the kids in on his little joke.
From Janiece: (and a few others)
Scott was terrible at keeping secrets! He just was too excited to keep his surprise inside. He couldn't wait to ask Janiece to marry him once he got that ring.
From Me:
When Shaunie was only a few years old, I was babysitting her at Scott and Janiece's house. They had a little bum lamb outside. I looked out the window and saw that somehow that little lamb had gotten out of his pen. I opened up the door to try and catch the lamb and it ran right into the house! I finally got it out, but I did not want Scott (or anyone) to find out about this little escapade. I triple checked that there were no signs of lamb entry and thought that I could keep my secret. However, when Scott came home, I was just sure that somehow, sometime he was going to find out. I had to tell him and I did. He laughed and smiled and said "Hell April, I told you to tend Shaunie not the lamb!"
From Cody (Janiece's brother):
Cody told us a great story of Scott helping him train a colt. I'm afraid I won't get the details correct, but I will try. But if you see Cody, you need to hear his version. Scott and Cody were training a colt named Misty. Misty reared up and threw Scott off. Cody was holding on for dear life to Misty's reigns and finally got her settled down. Scott jumped up but said "he had had enough" They got ready to leave when they saw a neighbors horse get out and run up the road. Cody got on Misty and rode after the neighbors horse. Unfortunately the neighbor's horse was hit by a truck. Scott was close behind and of course even though he "had had enough" they got the trailer and stayed for a long time helping out the people involved in the accident. That was Scott-always willing, always there to help.
From Deb (Janiece's Mom):
When Scott and Janiece were dating, the Coombs were having party up at Grandpa's Grove. There was a large rope swing that overhung a lake. You could swing out and drop into the lake. Scott jumped on the swing...but he didn't let go. He swung back and smacked right into the tree. Deb, thought Scott had to be dead. Scott couldn't stop laughing.
There were many moments of happy remembering last night. But I also experienced one of the saddest moments of my life. I know that whenever I think about it, I will cry. A mother's love for her children is one of the strongest emotions on earth, I believe.
Scott stirred a little when my Mom, Dad, Melissa and I were huddled around him. We started telling him how much we loved him. My Mom, crying, bent down and kissed Scott and said "You've been a good son"
From one of my favorite Children's Book:
"I'll love you forever
I'll like you for always
As long as I'm living
My baby you'll be"
If any of you have memories of Scott you would be willing to share, we would love for you to write them here under the comments. It brings some happiness into this dark world of sadness for all of us.
Tuesday, November 27, 2012
Feeling Sad
Scott gets a little worse everyday.
He is not eating or drinking much any more. He has a very difficult time swallowing most of the time. Hospice has asked us to not give him anything to eat or drink, due to his high risk of choking. Of course, if he asks, we do our best to help him get it down. He is having a very difficult time swallowing the medications he is given to help him be comfortable. The nurse commented yesterday that he is starting to show some signs of dehydration.
He continues to be very swollen and is swelling more on whatever side he is turned to or leaning towards.
He ran a fever the other night and was drenched in sweat, but that seems to have resolved now.
He is very jaundiced. The whites of his eyes are now completely yellow.
He did get up out of bed yesterday and shower. This completely exhausted him and he didn't get out of bed for the rest of the day.
He sleeps most of the time and when he wakes most of the time he recognizes people. However, for the first time ever, he did not recognize immediate family recently. Our cousin Tommy came to visit and Scott recognized him and called him "Tommy Tinker" which was the nickname Scott has always called Tommy. It made me smile when I heard that and feel sad at that same time.
Part of me wants Scott to be completely unaware of what is happening to him. I've asked my Mom many times throughout this if she thinks that Scott realizes or understands that he is dying. (Maybe my real question is does he accept this???) My Mom does not believe that Scott does really know that he is dying. Mom has said a few times that Scott is young and that the human body just naturally wants to live--to survive. This thought is incredibly hard, something I have struggled to process. I think her statement is true. I just really pray that Scott is truly comfortable and feels peaceful and there is not some inner turmoil. It seems so cruel. I know we have a loving God, but man, I just don't get this. I have to tell myself and believe that somehow God is making this work out and be okay for Scott.
I've had to go back to work, back home, back to "life", and it's been torture. Now that I am away, my mind is constantly focused on when I can get back to Scott's. Every time my phone rings, my heart drops. I feel obsessed to "see him one more time". I feel like I need to tell him goodbye and that I love him again. I don't think I will ever be satisfied with my "last goodbye"
When I was with Scott, it was okay to suddenly burst into tears--everyone there understood. It was okay to be sad. I didn't have to pretend to be any other emotion than what I was truly feeling at that moment. I can't do that now and sometimes I feel like I'm breaking inside and smiling outside. I hate that. I'm sad my brother is dying, I'm sad I can't be there with him every moment. I don't want to do anything else right now, or make plans for the weekend, let alone tomorrow night. Somehow, planning something "fun" makes me feel like I am taking something away from Scott. I can't explain it....I'm just........SAD. I think we are all validated to feel this way and "deserve" too. I don't feel one bit bad about it.
Melissa and I attempted to go black Friday shopping. We woke up early. We drove to Ogden. We went to the first store. I didn't have really anything that I truly wanted to buy. When it became a decent hour we called Mom for the report on Scott. We didn't feel much like shopping after that. Because we were asked to do so, we went to one other store to buy Scott a new white shirt.............
Even though I hated what this meant more than anything, in some small way it was nice to feel like I could "do something" for Scott.
The other day my in-laws were talking about our upcoming Family Christmas Party. For many years Scott was part of our party serving as Santa. I was always very proud of him. Last year at the family party we had a not so great "fill in". This year Eric (Melissa's husband) is going to be Santa for our party. As I was talking about this years party with my brother in law, I suddenly felt this grip around my chest and literally felt like I could not breathe. For the first time, I thought about the possibility of having a Christmas without Scott and that thought made me feel like I was drowning. I went home and looked at all the Santa (Scott) pictures from our past parties and sobbed and sobbed over our "used to be normal" life.
My Mom said the other day that "life is never going to be the same". I've written all these words, but she couldn't have said it better.
April
He is not eating or drinking much any more. He has a very difficult time swallowing most of the time. Hospice has asked us to not give him anything to eat or drink, due to his high risk of choking. Of course, if he asks, we do our best to help him get it down. He is having a very difficult time swallowing the medications he is given to help him be comfortable. The nurse commented yesterday that he is starting to show some signs of dehydration.
He continues to be very swollen and is swelling more on whatever side he is turned to or leaning towards.
He ran a fever the other night and was drenched in sweat, but that seems to have resolved now.
He is very jaundiced. The whites of his eyes are now completely yellow.
He did get up out of bed yesterday and shower. This completely exhausted him and he didn't get out of bed for the rest of the day.
He sleeps most of the time and when he wakes most of the time he recognizes people. However, for the first time ever, he did not recognize immediate family recently. Our cousin Tommy came to visit and Scott recognized him and called him "Tommy Tinker" which was the nickname Scott has always called Tommy. It made me smile when I heard that and feel sad at that same time.
Part of me wants Scott to be completely unaware of what is happening to him. I've asked my Mom many times throughout this if she thinks that Scott realizes or understands that he is dying. (Maybe my real question is does he accept this???) My Mom does not believe that Scott does really know that he is dying. Mom has said a few times that Scott is young and that the human body just naturally wants to live--to survive. This thought is incredibly hard, something I have struggled to process. I think her statement is true. I just really pray that Scott is truly comfortable and feels peaceful and there is not some inner turmoil. It seems so cruel. I know we have a loving God, but man, I just don't get this. I have to tell myself and believe that somehow God is making this work out and be okay for Scott.
I've had to go back to work, back home, back to "life", and it's been torture. Now that I am away, my mind is constantly focused on when I can get back to Scott's. Every time my phone rings, my heart drops. I feel obsessed to "see him one more time". I feel like I need to tell him goodbye and that I love him again. I don't think I will ever be satisfied with my "last goodbye"
When I was with Scott, it was okay to suddenly burst into tears--everyone there understood. It was okay to be sad. I didn't have to pretend to be any other emotion than what I was truly feeling at that moment. I can't do that now and sometimes I feel like I'm breaking inside and smiling outside. I hate that. I'm sad my brother is dying, I'm sad I can't be there with him every moment. I don't want to do anything else right now, or make plans for the weekend, let alone tomorrow night. Somehow, planning something "fun" makes me feel like I am taking something away from Scott. I can't explain it....I'm just........SAD. I think we are all validated to feel this way and "deserve" too. I don't feel one bit bad about it.
Melissa and I attempted to go black Friday shopping. We woke up early. We drove to Ogden. We went to the first store. I didn't have really anything that I truly wanted to buy. When it became a decent hour we called Mom for the report on Scott. We didn't feel much like shopping after that. Because we were asked to do so, we went to one other store to buy Scott a new white shirt.............
Even though I hated what this meant more than anything, in some small way it was nice to feel like I could "do something" for Scott.
The other day my in-laws were talking about our upcoming Family Christmas Party. For many years Scott was part of our party serving as Santa. I was always very proud of him. Last year at the family party we had a not so great "fill in". This year Eric (Melissa's husband) is going to be Santa for our party. As I was talking about this years party with my brother in law, I suddenly felt this grip around my chest and literally felt like I could not breathe. For the first time, I thought about the possibility of having a Christmas without Scott and that thought made me feel like I was drowning. I went home and looked at all the Santa (Scott) pictures from our past parties and sobbed and sobbed over our "used to be normal" life.
My Mom said the other day that "life is never going to be the same". I've written all these words, but she couldn't have said it better.
April
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