Warning: this is a really "gripey" (is that a word?) post. I wouldn't read it if I were you.....
I don't know what to call this post. I'm just irritated. Maybe I just need to move to the mountains and be a hermit. I don't understand why people who know me and know what our family has been through act like we're back to normal. Here's a newsflash.....LIFE WILL NEVER BE NORMAL. EVER!!!!!!!! Just because I get up and go to work, even manage to smile and carry on a conversation does not mean that life will ever be the same again. We are still grieving deeply and missing our Jacob in so many ways. I know that life has gone on for everyone else, but for us, it hurts just as much, if not more. When I read and hear about what Jacob's friends are doing, I just ache - I wonder what kind of job he would have, where he would be living, if he would still have that awful beard, etc.? I still have those fleeting nano-seconds when I wake up and I think he is still alive. I dream about him and then when I wake up, I experience acute grief that it was just a dream and he is still gone.
I think our society is just not comfortable with grief. We mean well, but we don't want to be surrounded by things or people that make us uncomfortable. I still would like to just shroud myself in black and let the world know I am stil mourning. I get that people don't know what to say and don't know what to do, but please, don't act like I am back to normal. Just in case you forgot - I WILL NEVER BE NORMAL AGAIN. I am trying my best to honor Jacob's memory by getting on with life; however, the pain is still just as intense as always.
The experiences of 21 years of hospitalizations, surgeries, transplants, etc. is still just as vivid and has left me exhausted and drained of any emotional energy. I'm getting all the help you can get, but the way I am functioning now may be as good as it gets.
So, before I write and explain what set me off and really offend someone or say something I will regret, let me close. Just know that even when I give the appearance that I am functioning on some sort of normal plane, it is taking every ounce of energy that I can muster. Just in case you forgot...life will never be normal again, or rather, this is the new normal for me and my family, and we don't like it one bit.
Tuesday, October 12, 2010
Wednesday, September 29, 2010
Saying Goodbye
Feeling pretty weepy tonight and thinking of all the different ways I say goodbye to people during the day. It all started with me looking at pictures of Jacob's funeral and it got me thinking about the word "good-bye."
My day started early with telling Richard good-bye as I left for school. He was leaving town for a three day business trip, so my good-bye hug was a little bit longer. He travels a lot, so I am used to this, but still, don't like to say good-bye.
Talked to Katie several times and as I said good-bye, ended with my usual "love you, honey."
Told my kids at school good-bye with a reminder to them that I loved them, was proud of them, and looking forward to seeing them tomorrow.
Talked to several friends tonight and made plans to see each other again soon as we said good-bye.
Talked to my mom in Orlando and as I said good-bye, reminded myself of how lucky I am to have her still here to say good-bye to - she's 80 years young.
Saying good-bye- we do it all the time and rarely do we say it and think we won't have a chance to say it again to someone we love.
I did have a chance to say good-bye to Jacob. It was just such a painful way that I often dream about it and relive that weekend that he died over and over. What could I have done differently? I shouldn't have let him go on that yearbook rereat, etc.
I have written several posts about all that happened that fateful weekend, but am not quite ready to post it publicly, yet. I thought I would post, however, about when we had to tell him good-bye. When we learned he was in serious rejection, we knew that good-bye might be possible, just still couldn't believe it. That Sunday evening, after his first treatment (sort of like chemo on steroids), Richard and I were on either side of his bed and he was dozing, in and out of consciousness. We knew it didn't look good, but thought we would have a few more days with him. After all, he had nearly died other times, and ALWAYS rallied. Surely, this was going to be another one of the roller coaster rides that always ended with everyone arriving back at the finish spot - safe and sound.
Right after the OKT3 (Ithink this was the name) treatment was given, he went into caridac arrest. We were both right there when it happened All of a sudden, his body went stiff and his face got a terrible, contorted look on it. The look on his face still haunts me - I can only describe it as one of frozen shock and horrow - sort of like something out of a famous artist painting I've seen (can't remember the artist). The nurses and doctors that were in the room started yelling for me to talk to him,ry and keep him conscious - "TALK TO HIM, MOM, TALK TO HIM!!!!DON'T LET HIM GO, MOM, STAY WITH HIM!!!! I kept saying, "Jakey, come on honey, stay with me, I'm here, Honey, Daddy's here, We Love you, Son, Wake Up!!!!!" (By the way, I'm the only one who could call him Jakey). Richard was on the other side, calling his name and patting his arm. Quickly, many nurses and doctors and nurses rushed in. We were pushed aside, and had to stand at the end of the bed. I kept patting his ankle. A nurse came over to make us leave and I begged him to let me stay. I kept promising I wouldn't get in the way - "Please let me just stay and hold his hand, I promise I won't bother you. I'm not one of those moms who will get in your way. Just let me stay and be in the room with him." They made us leave, Richard had to practically drag me out. I wasn't screaming or causing a scene. I just wanted to stand in the corner and be there with him. By now, a friend of ours had brought Katie in. I didn't want her to see this, but she wanted to be there. I was very proud of her for staying, but I didn't want her to remember this moment. I knew it would stay with her for the rest of her life, like it has for me.
We sat on the floor outside his ICU room watching at least 15 people hovering around his bed. They tried everything, but we could watch the monitor and see he wasn't responding. Soon, most of the medical personnel began to leave the room and our nurse brought us in to be with him as they made one last attempt to revive him. We learned later that they knew he was gone, but this was an effort to show us that he was still with us so we could talk to him.
Richard, Katie and I sat by his side and told him much we loved him, how proud of him we were and talked about what joy he had brought to our lives. Katie told him she would name her first child after him. I kept touching him, holding him, smelling him, cradling his face in my hands, anything to keep from saying good-bye.
Ben and Beth and the rest of our family arrived shortly after he died and they all had a chance to see him one more time and tell him good-bye, before they took his body away. It was another scene I'll never forget - Ben rushing down the hall and Katie running to him, sobbing in his arms. Again, other times, Ben had made it here in time - but this was not to be.
At the funeral home, during the visitation and at the graveside service, I kept patting the coffin. I just wanted him to know I was there, not quite ready to really say good-bye.
Finally, we lay the last of the flowers on top of his coffin. I really was saying good-bye to my beloved son.
Good-byes suck. I really hate that term. It's vulgar and not one I think is appropriate at all to say in public; however, since I'm writing this, it just seems like the only word to say. What is really good about saying "bye" anyway? Whoever came up with that word?
Well, don't even know how to end this rambling. I did think of some song from the 70's I think - "Never Can Say Good-bye." Can't remember who sang it - just know that I had to say good-bye to Jacob. I hope that I see him again. I hope that when I do see him, he will look just like he did here - scruffy beard, beautiful brown eyes and ridiculously long eyelashes, (thanks to the immunosuppressants- Katie and I were so jealous), deep, gruff voice, hair that needs to be combed to the side, clothes that don't really fit, but most of all, the son, brother, uncle, grandson, nephew, and friend that we all loved so much.
So for now, good-bye. If you think of a better word than this, let me know.
My day started early with telling Richard good-bye as I left for school. He was leaving town for a three day business trip, so my good-bye hug was a little bit longer. He travels a lot, so I am used to this, but still, don't like to say good-bye.
Talked to Katie several times and as I said good-bye, ended with my usual "love you, honey."
Told my kids at school good-bye with a reminder to them that I loved them, was proud of them, and looking forward to seeing them tomorrow.
Talked to several friends tonight and made plans to see each other again soon as we said good-bye.
Talked to my mom in Orlando and as I said good-bye, reminded myself of how lucky I am to have her still here to say good-bye to - she's 80 years young.
Saying good-bye- we do it all the time and rarely do we say it and think we won't have a chance to say it again to someone we love.
I did have a chance to say good-bye to Jacob. It was just such a painful way that I often dream about it and relive that weekend that he died over and over. What could I have done differently? I shouldn't have let him go on that yearbook rereat, etc.
I have written several posts about all that happened that fateful weekend, but am not quite ready to post it publicly, yet. I thought I would post, however, about when we had to tell him good-bye. When we learned he was in serious rejection, we knew that good-bye might be possible, just still couldn't believe it. That Sunday evening, after his first treatment (sort of like chemo on steroids), Richard and I were on either side of his bed and he was dozing, in and out of consciousness. We knew it didn't look good, but thought we would have a few more days with him. After all, he had nearly died other times, and ALWAYS rallied. Surely, this was going to be another one of the roller coaster rides that always ended with everyone arriving back at the finish spot - safe and sound.
Right after the OKT3 (Ithink this was the name) treatment was given, he went into caridac arrest. We were both right there when it happened All of a sudden, his body went stiff and his face got a terrible, contorted look on it. The look on his face still haunts me - I can only describe it as one of frozen shock and horrow - sort of like something out of a famous artist painting I've seen (can't remember the artist). The nurses and doctors that were in the room started yelling for me to talk to him,ry and keep him conscious - "TALK TO HIM, MOM, TALK TO HIM!!!!DON'T LET HIM GO, MOM, STAY WITH HIM!!!! I kept saying, "Jakey, come on honey, stay with me, I'm here, Honey, Daddy's here, We Love you, Son, Wake Up!!!!!" (By the way, I'm the only one who could call him Jakey). Richard was on the other side, calling his name and patting his arm. Quickly, many nurses and doctors and nurses rushed in. We were pushed aside, and had to stand at the end of the bed. I kept patting his ankle. A nurse came over to make us leave and I begged him to let me stay. I kept promising I wouldn't get in the way - "Please let me just stay and hold his hand, I promise I won't bother you. I'm not one of those moms who will get in your way. Just let me stay and be in the room with him." They made us leave, Richard had to practically drag me out. I wasn't screaming or causing a scene. I just wanted to stand in the corner and be there with him. By now, a friend of ours had brought Katie in. I didn't want her to see this, but she wanted to be there. I was very proud of her for staying, but I didn't want her to remember this moment. I knew it would stay with her for the rest of her life, like it has for me.
We sat on the floor outside his ICU room watching at least 15 people hovering around his bed. They tried everything, but we could watch the monitor and see he wasn't responding. Soon, most of the medical personnel began to leave the room and our nurse brought us in to be with him as they made one last attempt to revive him. We learned later that they knew he was gone, but this was an effort to show us that he was still with us so we could talk to him.
Richard, Katie and I sat by his side and told him much we loved him, how proud of him we were and talked about what joy he had brought to our lives. Katie told him she would name her first child after him. I kept touching him, holding him, smelling him, cradling his face in my hands, anything to keep from saying good-bye.
Ben and Beth and the rest of our family arrived shortly after he died and they all had a chance to see him one more time and tell him good-bye, before they took his body away. It was another scene I'll never forget - Ben rushing down the hall and Katie running to him, sobbing in his arms. Again, other times, Ben had made it here in time - but this was not to be.
At the funeral home, during the visitation and at the graveside service, I kept patting the coffin. I just wanted him to know I was there, not quite ready to really say good-bye.
Finally, we lay the last of the flowers on top of his coffin. I really was saying good-bye to my beloved son.
Good-byes suck. I really hate that term. It's vulgar and not one I think is appropriate at all to say in public; however, since I'm writing this, it just seems like the only word to say. What is really good about saying "bye" anyway? Whoever came up with that word?
Well, don't even know how to end this rambling. I did think of some song from the 70's I think - "Never Can Say Good-bye." Can't remember who sang it - just know that I had to say good-bye to Jacob. I hope that I see him again. I hope that when I do see him, he will look just like he did here - scruffy beard, beautiful brown eyes and ridiculously long eyelashes, (thanks to the immunosuppressants- Katie and I were so jealous), deep, gruff voice, hair that needs to be combed to the side, clothes that don't really fit, but most of all, the son, brother, uncle, grandson, nephew, and friend that we all loved so much.
So for now, good-bye. If you think of a better word than this, let me know.
Monday, September 6, 2010
Making Life Good
Time to ramble some......
People like to say that Jacob had a good life - I say that a lot. He was fortunate to have parents that were willing to do anything to provide him with the best medical care available. He was VERY lucky to have a brother and sister who knew that they would have to put aside their own wants and needs when he was sick. I have lots of stories to tell about this. He also had an extended family and many friends who loved him and helped support him through many difficult years.
His dad, in his amazing way with words, put it into the right perspective. Jacob didn't have a good life - he made life good. This has started me thinking about one of my favorite subjects and that is the idea of self-efficacy. I know, you didn't see that one coming. Self-efficacy is a social cognitive theory that was developed by psychologist Albert Bandura. It basically is the belief that a person has in themselves to succeed in something.
For example, if I have a high degree of self-efficacy in myself, then I am more likely going to be successful at it. It is not an over-inflated sense of optimism, but rather a pragmatic view of one's skills and limitations and a determination to be successful at what you attempt. This can be something as simple as trying to learn a new skill. For example, I have a terrible voice, so my degree of self-efficacy is very low for this. No matter how hard I try or even if I took voice lessons, I would still sound terrible. However, I can play the piano and organ, thanks to many years of piano and organ lessons (thanks, Mom). So, if I wanted to learn a new piece to play, I could spend a lot of time practicing and since my self-efficacy level is fairly good for this, I could probably learn to play it.
Self-efficacy does not mean you can do anything you want to do. For example, I can't just wake up and decide to be a heart surgeon or an Olympic figure-skater. I can decide, however, that I want to learn to ice-skate and take lessons, practice, and learn how to stay up on skates. It basically boils down to determination - how determined you are to be successful at something or to survive difficult circumstances.
I think this is what fascinates me about self-efficacy. Why do some people encounter extremely difficult circumstances and survive and emerge stronger - while others, who encounter similar or less difficult experiences, succumb to their experience and wither away? I always think of the Holocaust experience - you hear the stories about those who endured years of horrible abuse and yet managed to find beauty, humor, etc. in their surroundings, while others did not and their lives ended in anger and bitterness. Those with a high degree of self-efficacy felt like they still had some control over their horrible situation.
Right now, you are probably wondering where I am going with this. I have always wondered why do people react so differently to the same circumstances. I did two graduate research projects on self-efficacy - one on self-efficacy with parents and the other on teacher-efficacy so I was forced to do a lot of reading about it. Okay, I'll stop and move on.
Jacob didn't have a good life - he made life good. He had parents who were determined that he was going to live and have a good quality of life. When I was pregnant with Jacob, that was the key factor in our decision to pursue this experimental surgery. We were driven by the question - what would his life be like? I have a 62 year-old uncle who is completely disabled - physically and mentally. He is fed through a feeding tube, can't talk, his body is shriveled and he has not control over his bodily functions. He still lives at home and he requires 24 hour care by his siblings. I did NOT want this to be Jacob's life and if this was what he would have been like, then we would have let him be born and not pursue aggressive treatment and let nature takes its course. Dr. Norwood - the original surgeon assured us that if all went well, he would have a good quality of life. It did and he did.
Well, everyone is waking up and I better stop. More later about this self-efficacy and how it relates to grief. I would love to know your thoughts on this and how self-efficacy relates to you and your life.
People like to say that Jacob had a good life - I say that a lot. He was fortunate to have parents that were willing to do anything to provide him with the best medical care available. He was VERY lucky to have a brother and sister who knew that they would have to put aside their own wants and needs when he was sick. I have lots of stories to tell about this. He also had an extended family and many friends who loved him and helped support him through many difficult years.
His dad, in his amazing way with words, put it into the right perspective. Jacob didn't have a good life - he made life good. This has started me thinking about one of my favorite subjects and that is the idea of self-efficacy. I know, you didn't see that one coming. Self-efficacy is a social cognitive theory that was developed by psychologist Albert Bandura. It basically is the belief that a person has in themselves to succeed in something.
For example, if I have a high degree of self-efficacy in myself, then I am more likely going to be successful at it. It is not an over-inflated sense of optimism, but rather a pragmatic view of one's skills and limitations and a determination to be successful at what you attempt. This can be something as simple as trying to learn a new skill. For example, I have a terrible voice, so my degree of self-efficacy is very low for this. No matter how hard I try or even if I took voice lessons, I would still sound terrible. However, I can play the piano and organ, thanks to many years of piano and organ lessons (thanks, Mom). So, if I wanted to learn a new piece to play, I could spend a lot of time practicing and since my self-efficacy level is fairly good for this, I could probably learn to play it.
Self-efficacy does not mean you can do anything you want to do. For example, I can't just wake up and decide to be a heart surgeon or an Olympic figure-skater. I can decide, however, that I want to learn to ice-skate and take lessons, practice, and learn how to stay up on skates. It basically boils down to determination - how determined you are to be successful at something or to survive difficult circumstances.
I think this is what fascinates me about self-efficacy. Why do some people encounter extremely difficult circumstances and survive and emerge stronger - while others, who encounter similar or less difficult experiences, succumb to their experience and wither away? I always think of the Holocaust experience - you hear the stories about those who endured years of horrible abuse and yet managed to find beauty, humor, etc. in their surroundings, while others did not and their lives ended in anger and bitterness. Those with a high degree of self-efficacy felt like they still had some control over their horrible situation.
Right now, you are probably wondering where I am going with this. I have always wondered why do people react so differently to the same circumstances. I did two graduate research projects on self-efficacy - one on self-efficacy with parents and the other on teacher-efficacy so I was forced to do a lot of reading about it. Okay, I'll stop and move on.
Jacob didn't have a good life - he made life good. He had parents who were determined that he was going to live and have a good quality of life. When I was pregnant with Jacob, that was the key factor in our decision to pursue this experimental surgery. We were driven by the question - what would his life be like? I have a 62 year-old uncle who is completely disabled - physically and mentally. He is fed through a feeding tube, can't talk, his body is shriveled and he has not control over his bodily functions. He still lives at home and he requires 24 hour care by his siblings. I did NOT want this to be Jacob's life and if this was what he would have been like, then we would have let him be born and not pursue aggressive treatment and let nature takes its course. Dr. Norwood - the original surgeon assured us that if all went well, he would have a good quality of life. It did and he did.
Well, everyone is waking up and I better stop. More later about this self-efficacy and how it relates to grief. I would love to know your thoughts on this and how self-efficacy relates to you and your life.
Tuesday, August 24, 2010
Busy With Grief
Well, it's been awhile since I have posted. It's back-to-school time and an especially busy one, at that. My school has moved to a new location and added several hundred new students, so this last month has been especially busy. I have a delightful group of first graders who help me put aside my grief for a few hours. Just like every year, I always show pictures of my family and talk about them a lot. The chair I sit in to read to my class was Jacob's chair he had in his room. It has his name monogrammed on it.
I guess after awhile, grief just becomes part of your life and you become so accustomed to it, that when you have those moments when you actually laugh at something, you are surprised by what that sound is.
That is the fun part of teaching first graders - they do laugh a lot, so I won't forget what that sounds like, even if I don't do it a lot.
I guess after awhile, grief just becomes part of your life and you become so accustomed to it, that when you have those moments when you actually laugh at something, you are surprised by what that sound is.
That is the fun part of teaching first graders - they do laugh a lot, so I won't forget what that sounds like, even if I don't do it a lot.
Wednesday, July 21, 2010
Flashbacks
Today I had one of those lovely procedures that you're supposed to have when you are over 50 - a colonoscopy. I am a few years past due having it, so today was the day. I'll spare you the details, but the reason I am writing about it was that it gave me so many flashbacks of the many times we were in the hospital with Jacob.
The first one began when the nurse tried to put the IV in. She had trouble finding a vein and it took several tries. The tears began to flow when I thought of the many IV's Jacob had to have over his lifetime. He hated it - who really likes having them put in? - but he always endured it. He would always hold my hand and squeeze hard while the nurse was trying to find a vein. He would also always make eye contact with me and hold my gaze during the process. When he was young, his look was one of fear and pain. When he was older, it was with weariness from the pain. There were many times when it would take several nurses to find a vein and sometimes a doctor would be called in. One time, the nurse from the Lifeflight helicopter unit had to come since they are considered the "experts" in finding hard veins. While I write rather casually about this now, these were such difficult moments for him and for us. Watching your child in pain and knowing you can't do anything about it is the hardest part about being a parent. It doesn't matter if they are an infant, a child, a teenager, or an adult - it just feels like your heart is literally being torn out to see your child suffer. I know that some of you are thinking that this is what God felt like when He sent Jesus to die for us, etc. etc. I just don't know how I feel about that. Since I'm not God, I just don't know if I could send my child to purposely die for someone else.
That really wasn't what I wanted to write about, so enough of that. Another flashback today: Richard was sitting by me and the pulse oximeter was beeping. This is the little clamp they put on your finger to measure your oxygen saturation level. When Jacob was a newborn, we had one of these machines at home and had to tape it to his finger. It had a red light on the tip. This was about the time that the movie "E.T." was popular and if you remember, E.T. had a finger that lit up with a red light. Anyway, Katie and Ben would say he looked like E.T., so this is what we always called it. Today, when I listened to that machine beeping, all I could think about was the different machines that made various noises when he was in the hospital. I don't think I'll ever get that noise out of my head.
Finally, when the nurses were rolling me into the procedure room, I felt a wave of panic coming. As I was laying on the stretcher, all I could see were the ceiling and walls and medical equipment. I just kept remembering the times that we would walk with Jacob to the doors of the operating rooms. We would stand there, kiss him tenderly and let him go, not knowing if we would ever see him again. He always made it through, despite overwhelming complicatons and setbacks. It just doesn't seem possible that he isn't here anymore for us to go back and see him when he comes out of a surgery, a biopsy, a cath, or a transplant. This was so much a way of life for us for 21 years.
Today, when I awoke from this simple procedure, I looked at Richard and all I could say was, "I miss him so much." I didn't have to explain - he just knew that just being in that environment stirs up so many emotions and memories.
It's time to stop. This is too hard. I know that most people look at Jacob's life and want to think about what a wonderful life he had and how he lived life to the fullest. He certainly did that, but there was another side that most people didn't see. He had to start and end each day taking drugs that had wicked side effects. After his transplants, the drugs he took caused intense nausea, and this was the least of the side effects. He often had to drink a "cocktail" of Gatorade and ginger ale to get the meds down. After drinking 64 ounces of Gatorade last night, I don't know how he ever stood it.
I could go on and on, but the tears won't stop, it's late and I'm very tired. I'll end this with one question for thought:
If God could have spared my son from any of the pain he went through and chose not to - then really, what's the point? If He couldn't have spared him from it, that's one thing, but if He could have - and that's the way we and most Christians have prayed - and He purposely let him live such a painful life, then I'm not sure I really am terribly interested in having a very close relationship with Him.
Good Night.
The first one began when the nurse tried to put the IV in. She had trouble finding a vein and it took several tries. The tears began to flow when I thought of the many IV's Jacob had to have over his lifetime. He hated it - who really likes having them put in? - but he always endured it. He would always hold my hand and squeeze hard while the nurse was trying to find a vein. He would also always make eye contact with me and hold my gaze during the process. When he was young, his look was one of fear and pain. When he was older, it was with weariness from the pain. There were many times when it would take several nurses to find a vein and sometimes a doctor would be called in. One time, the nurse from the Lifeflight helicopter unit had to come since they are considered the "experts" in finding hard veins. While I write rather casually about this now, these were such difficult moments for him and for us. Watching your child in pain and knowing you can't do anything about it is the hardest part about being a parent. It doesn't matter if they are an infant, a child, a teenager, or an adult - it just feels like your heart is literally being torn out to see your child suffer. I know that some of you are thinking that this is what God felt like when He sent Jesus to die for us, etc. etc. I just don't know how I feel about that. Since I'm not God, I just don't know if I could send my child to purposely die for someone else.
That really wasn't what I wanted to write about, so enough of that. Another flashback today: Richard was sitting by me and the pulse oximeter was beeping. This is the little clamp they put on your finger to measure your oxygen saturation level. When Jacob was a newborn, we had one of these machines at home and had to tape it to his finger. It had a red light on the tip. This was about the time that the movie "E.T." was popular and if you remember, E.T. had a finger that lit up with a red light. Anyway, Katie and Ben would say he looked like E.T., so this is what we always called it. Today, when I listened to that machine beeping, all I could think about was the different machines that made various noises when he was in the hospital. I don't think I'll ever get that noise out of my head.
Finally, when the nurses were rolling me into the procedure room, I felt a wave of panic coming. As I was laying on the stretcher, all I could see were the ceiling and walls and medical equipment. I just kept remembering the times that we would walk with Jacob to the doors of the operating rooms. We would stand there, kiss him tenderly and let him go, not knowing if we would ever see him again. He always made it through, despite overwhelming complicatons and setbacks. It just doesn't seem possible that he isn't here anymore for us to go back and see him when he comes out of a surgery, a biopsy, a cath, or a transplant. This was so much a way of life for us for 21 years.
Today, when I awoke from this simple procedure, I looked at Richard and all I could say was, "I miss him so much." I didn't have to explain - he just knew that just being in that environment stirs up so many emotions and memories.
It's time to stop. This is too hard. I know that most people look at Jacob's life and want to think about what a wonderful life he had and how he lived life to the fullest. He certainly did that, but there was another side that most people didn't see. He had to start and end each day taking drugs that had wicked side effects. After his transplants, the drugs he took caused intense nausea, and this was the least of the side effects. He often had to drink a "cocktail" of Gatorade and ginger ale to get the meds down. After drinking 64 ounces of Gatorade last night, I don't know how he ever stood it.
I could go on and on, but the tears won't stop, it's late and I'm very tired. I'll end this with one question for thought:
If God could have spared my son from any of the pain he went through and chose not to - then really, what's the point? If He couldn't have spared him from it, that's one thing, but if He could have - and that's the way we and most Christians have prayed - and He purposely let him live such a painful life, then I'm not sure I really am terribly interested in having a very close relationship with Him.
Good Night.
Sunday, July 18, 2010
Faces - part 1
Today, Richard and I went to church. This is significant because we both actually made it through the service without falling apart. It is hard for us to go and sit and not think of Jacob being there, sitting in his spot in the balcony, singing with his arms stretched up to heaven. Jacob loved, I mean, LOVED to sing. He liked hymns, choruses, contemporary songs, you name it. Unfortunately, he had a terrible voice. He used to be able to sing fairly well, but over the last few years of his life, he was intubated (had a breathing tube inserted) so many times, that he had damage to his vocal chords. We even took him to a voice therapist for awhile to see if it was repairable, but this did not do much good. He also took so many different medicines that had to have affected his voice. Also, he inherited his mother's love of music, but terrible vocal chords.
Anyway, he loved to sing so much and this was what helped him through some difficult years in middle school and high school. He was in chorus during those years and that helped him find his group of friends. The funny thing, or rather sort of sad thing, was that during his last few years in high school, his voice was so damaged, that he had to lip-synch the words when he was singing in chorus.
A very sweet memory I have of Jacob was when the McEachern chorus was presenting their Christmas concert. The students were wearing their robes and standing in the aisles singing a very solemn song in either Latin or Italien. Jacob was standing near us, facing the stage, not aware that we were sitting nearby. The auditorium was dark, filled with students, parents and many others. This would have been his senior year, the Christmas after Jacob's first transplant. I just remember being filled with so much love, gratitude and guilt watching my son mouth the words to this song. Love - for my child, who had endured so much pain this past year and was alive to see another Christmas. Gratitude - for the chance to celebrate another Christmas with him and also to the family who were willing to allow their loved one to be a heart donor. Guilt - because I had my son with me and the donor family did not - deep down inside I lived with the fact that someone's child had to die so that my son could live. This was something I never took for granted.
So, back to why I called this post "Faces - part 1." When Richard and I try to go to church, we have different faces. Mine is one that is numb. I cannot sing or participate in the service. It takes all the energy I have just to be there and speak to people. When the congregation sings, I just stand and can't even mouth the words, like Jacob used to do. Richard is able to participate more, but he has a hard time during the singing, especially the songs that Jacob liked. It is so different standing next to Richard now during a worship service. He has a wonderful voice and I have always loved to stand next to him and hear him sing. Now, he is silent, often trying to control tears.
Well, this is not all I want to say about Faces - but I must go. I must go to a funeral visitation for a teacher friend. I know that her face will be one of grief, as she has lost both of her parents this year. My heart hurts for her.
Anyway, he loved to sing so much and this was what helped him through some difficult years in middle school and high school. He was in chorus during those years and that helped him find his group of friends. The funny thing, or rather sort of sad thing, was that during his last few years in high school, his voice was so damaged, that he had to lip-synch the words when he was singing in chorus.
A very sweet memory I have of Jacob was when the McEachern chorus was presenting their Christmas concert. The students were wearing their robes and standing in the aisles singing a very solemn song in either Latin or Italien. Jacob was standing near us, facing the stage, not aware that we were sitting nearby. The auditorium was dark, filled with students, parents and many others. This would have been his senior year, the Christmas after Jacob's first transplant. I just remember being filled with so much love, gratitude and guilt watching my son mouth the words to this song. Love - for my child, who had endured so much pain this past year and was alive to see another Christmas. Gratitude - for the chance to celebrate another Christmas with him and also to the family who were willing to allow their loved one to be a heart donor. Guilt - because I had my son with me and the donor family did not - deep down inside I lived with the fact that someone's child had to die so that my son could live. This was something I never took for granted.
So, back to why I called this post "Faces - part 1." When Richard and I try to go to church, we have different faces. Mine is one that is numb. I cannot sing or participate in the service. It takes all the energy I have just to be there and speak to people. When the congregation sings, I just stand and can't even mouth the words, like Jacob used to do. Richard is able to participate more, but he has a hard time during the singing, especially the songs that Jacob liked. It is so different standing next to Richard now during a worship service. He has a wonderful voice and I have always loved to stand next to him and hear him sing. Now, he is silent, often trying to control tears.
Well, this is not all I want to say about Faces - but I must go. I must go to a funeral visitation for a teacher friend. I know that her face will be one of grief, as she has lost both of her parents this year. My heart hurts for her.
What does good mean and is God good?
Well, I've been away for awhile. I've had a lot to distract me - going to see grandchildren, setting up a new classroom in a brand-new school, spending time at the cabin in North Carolina; however, the words are in my head. I just haven't taken the time to sit and write. I thought I would spend a little bit of time writing this morning. I am going to attempt to go to church this morning. I have been unable to go since Jacob died and I do miss seeing our church family. Today I am going to attempt it. That's for another post.
So, what does good mean? I'm sure you remember this child's prayer:
God is good, God is great.
Let us thank Him for our food.
I said it as a child and I'm sure you did too, but what does "good" really mean. When using these superlatives "good" and "great", "great" is used to describe something better than "good". For example, when I am grading papers, sometimes I write "very good" if a child does something with just a few mistakes; but if he/she doesn't make any mistakes, I write "GREAT!" So, why do we describe God as both "good" and "great'. Why not just say "great". Okay, I am digressing:
Here's my question: how can God be good when wonderful things happen and yet good when tragedy happens? If I believe that God is really good, than I have to say that He is good no matter what happens.
Ben, our eldest son, is a minister and a very cerebral thinker. I recently visited with him and asked him some of these questions. Richard is SO tired of having this dialogue with me. Anyway, I asked Ben, " Why is it we say God is good when good things happen, but when bad things happen, we don't say 'isn't God good'?" Another question:" When someone survives a difficult surgery or situation, we say 'Praise God! But when they die, we don't say "Praise God.' " I just don't think you can have it both ways and I definitely am not ready to say "Praise God" that Jacob died.
Well, my very wise son responded that he doesn't base his view of God's goodness on circumstances that happen around him or around others. He said that our view of God is so very finite and limited and we try to put Him in a box that is comfortable for us, but He is so much greater than what we can perceive. Ben, please feel free to edit this. I think this is sort of what you said.
I think I can agree with this; however, I'm just not sure I really have any desire to praise God, regardless of the circumstances.
Okay, I have a lot more to say, but I have to get ready for church. I have put off getting ready long enough and I am starting to come up with excuses on why I don't want to go. Here I go.........
So, what does good mean? I'm sure you remember this child's prayer:
God is good, God is great.
Let us thank Him for our food.
I said it as a child and I'm sure you did too, but what does "good" really mean. When using these superlatives "good" and "great", "great" is used to describe something better than "good". For example, when I am grading papers, sometimes I write "very good" if a child does something with just a few mistakes; but if he/she doesn't make any mistakes, I write "GREAT!" So, why do we describe God as both "good" and "great'. Why not just say "great". Okay, I am digressing:
Here's my question: how can God be good when wonderful things happen and yet good when tragedy happens? If I believe that God is really good, than I have to say that He is good no matter what happens.
Ben, our eldest son, is a minister and a very cerebral thinker. I recently visited with him and asked him some of these questions. Richard is SO tired of having this dialogue with me. Anyway, I asked Ben, " Why is it we say God is good when good things happen, but when bad things happen, we don't say 'isn't God good'?" Another question:" When someone survives a difficult surgery or situation, we say 'Praise God! But when they die, we don't say "Praise God.' " I just don't think you can have it both ways and I definitely am not ready to say "Praise God" that Jacob died.
Well, my very wise son responded that he doesn't base his view of God's goodness on circumstances that happen around him or around others. He said that our view of God is so very finite and limited and we try to put Him in a box that is comfortable for us, but He is so much greater than what we can perceive. Ben, please feel free to edit this. I think this is sort of what you said.
I think I can agree with this; however, I'm just not sure I really have any desire to praise God, regardless of the circumstances.
Okay, I have a lot more to say, but I have to get ready for church. I have put off getting ready long enough and I am starting to come up with excuses on why I don't want to go. Here I go.........
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