Warning: rather long post - lots of reliving this day, three years ago
Today is a day that has a lot of memories. Before I begin, let me say that it is also the birthday of Beth, my daughter-in-law. She is such a wonderful person- a perfect partner for Ben, the BEST mom I have ever known, and an amazingly talented artist. I love you, Beth.
It is also a day that has some hard memories. I have sort of repressed a lot of them, but I thought I would write about some of them. Here goes:
Three years ago, on this day, Jacob was dying and we were thinking this was it. He had been in the hospital since October 26th, after experiencing rejection of the heart he had received on December 21st, 2004. This had already knocked us for the loop - the average lifespan for a person with a transplanted heart is at least 10 years. It wasn't time yet. He had been doing so well. He was a sophomore at Shorter and loving life. Richard and I had just flown home from Texas after seeing Tucker, our first grandchild. Jacob was away at school and we were sort of beginning to breathe a little -life was sort of good until he was admitted on October 26th. He, unknown to me, had become very fatigued and wasn't able to make it to class the day before. He thought he was getting the flu. His friends finally convinced him to call us and of course, we said get to the hospital.
To speed this up, he was rejecting his first transplanted heart. From that day until November 14th, he went through all kinds of vicious anti-rejection treatments. It was a horrible time for him and for us. We were all in shock, doctors, nurses, family, us - this was way, way too soon. When it was determined that the only alternative was another heart, we had to go through the whole, tedious process of being listed again.
One of the main differences this time, as opposed to the first transplant, was that Jacob was now over the age of 18, so technically, the medical staff was not supposed to talk to us. When the social worker came in to talk to Jacob about signing papers for the living will and asked us to leave the room, Richard and I both became unglued. We had been with him since day one of this journey and now we weren't supposed to be in the room while he answered the questions. Needless to say, we took it to the big doc and he took care of this. That's another long story.
But, I digress - as I said, I have a lot to say and have repressed a lot of it, but once I start writing, it's hard to stop.
So, back to Nov. 14th. On that day, Jacob was at the top of a list of heart recipients in a 1500 mile radius. It didn't look good- he was retaining so much fluid that when you walked into his room, all you could see was his stomach. The bed shook so hard from his labored breathing that you could see and hear it shaking. Our doctors had already talked to us about the possibility of putting him on a bi-vad or a biventricular device - basically, an artificial heart that would be attached to him. It was just a stop-gap measure until he could receive a heart. It would be an extremely drastic measure, but the only one that we had, unless a heart became available. Plans had been started to have this implanted on Nov. 15th at Emory. The team there had already begun the process. We just hoped he would live long enough to have the bi-vad implanted.
As the day wore on, he was quickly declining and it didn't look like he would make it through the night. Family was rushing back from Alabama, Washington, Texas and Connecticut. Some had already been here for awhile and we were all so weary and exhausted. Different friends and family would take turns helping me sit him up and rub his back. It would take two of us to hold him up - he was just that huge. I remember laying across his legs and trying to absorb the smell of them - I knew that this was it and I just wanted to remember everything about him - even how his feet smelled.
Ben, Beth and Tucker were trying to get here and we were afraid that Jacob wouldn't live long enough to see them. Finally, around 11:00 that night, Ben and Beth came in. Our wonderful friend, Kim,was keeping Tucker in the waiting room. Other friends were waiting with her or coming in. What would we have done without them? Especially Donna and Kim.
Richard, Katie, Ben, Beth and myself sat around his bed talking to him, saying our good-byes. Our doctors didn't think he would live long enough to even get the bi-vad put in. Then, suddenly, a young middle-eastern looking man in a lab coat came in and said, "My name is (couldn't understand the first part) Mohammed and we have a heart." He turned and walked off. We sat there in shock. Richard and I jumped off Jacob's bed and ran after him. We asked him to tell us who he was - there are SO many doctors in CICU that you just can't keep up with all of them - and to repeat what he had just told us. Anyway, he told us he was a resident with the transplant team and would be part of the group doing his transplant in a few hours.
We went from absolute despair to delirious shock. We told Jacob who was awake enough to understand. He also knew that he had to go through a terrible hard surgery and recovery, AGAIN. As the preparation was begun, we had to prepare him and ourselves to go through this again.
One funny story, we did have a chaplain intern who kept hovering around. Poor thing - she just didn't know what to say and was really clueless. Jacob sent his dad a text, while she was in the room, that said, "GET HER OUT OF HERE!!!!" We did.
Around 4:00 that morning, the doctors came to take Jacob to the operating room. It was such a moment - one I will never forget. It was in the wee hours of the morning, and in CICU, it is very open with the beds separated by monitors. Most children were asleep with a nurse or doctor by their bed. It was eerily quiet with just the sounds of monitors beeping and occasionally, a soft voice was heard. As we walked alongside his bed, he was awake and smiling. All the different medical and hospital personnel were smiling at him and giving him a thumbs-up. Several came over to hug us and him. It was very surreal - sort of like a parade in a silent movie. When we arrived at the operating room suites, we waited with two of the doctors - one of them was our Mohammed. We were sooooooo relieved, grateful and sobered, once again, that someone had to die in order for our child to live.
Meanwhile, we had to pack up and move out of the CICU room. Even though, he would be coming back to this room, everything had to be washed down. All of his and our personal belongings had to be removed. It was really pretty cool - they used some sort of foam cleaner and totally covered everything in the room with it.
Well, time to stop. Too many tears. Just hard to not relive this day. Just wish he was here to relive it with us.
I love you, son. You were so brave and so amazing to go through this not once, but twice. Thank you for doing this. I know there were many days you wondered if it was worth it. I am so thankful for every day we had with you.
You are always in my heart.
Sunday, November 14, 2010
Tuesday, October 12, 2010
??????
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.
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.
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.........
Monday, June 28, 2010
Housekeeping Stuff
In my first grade classroom, whenever I need to go over procedural stuff - which can make or break a classroom - I call it housekeeping time. I thought I would do that now.
1. Comments: Thank you so much for your comments. I think I may have scared some of you into not making comments. I really welcome them and would love the dialogue. I am not offended or hurt by any comments that disagree with how I feel. I also don't mind if anyone tries to persuade me to feel differently. I even don't mind if you try to preach to me. Just remember that I ask you to be truly authentic and not give comments that are based on "tapes" that are in your head. I want to hear what you truly feel about your emotions about grief or anything else. I know that sometimes, our first reaction or response to something that someone says or writes is what we think we are supposed to say. I just want to hear what you really feel. Be authentic - can you tell that is one of my favorite words? If I don't agree, don't be offended. I love disagreeing with people. Of course I think I'm right, but I can occasionally change my mind.
2. How you're reading the blog: If you are reading this from another site such as Facebook or Carepages, that is fine. but I just don't have any way of knowing it. I would really appreciate it if you would register on this blog site. You sign in with your e-mail and you can use a different e-mail than you normally do - maybe register with yahoo or hotmail any other e-mail account. If you don't want people to see your name as a follower, just establish a user name with a name people wouldn't recognize (your dog's name or some cartoon name). There are several people registered that I don't know who they are, but they are listed as a follower. I don't know why I want to know how many people are reading this. I really want to know who is, but you can prevent that. I guess I just want to know if anyone really cares. I am going to keep writing anyway, but it's nice to see others are reading this.
3. Suggestions? Anyone have any ideas of ways to improve this. I am going to try and post some pictures when I get home.Don't have any on this computer. Are the postings too long? I can't seem to make them shorter; however, I know it is unwieldy. I'll keep working on that.
4. I have thought about writing some funny and not-so-funny stories about life with Jacob. They would not necessarily go under the topic of grief, but perhaps that is part of the healing process.
That's all for now. Please feel free to give me any suggestions. Doesn't mean I'll follow them - remember, I love to disagree, but it doesn't mean I don't love and appreciate you.
1. Comments: Thank you so much for your comments. I think I may have scared some of you into not making comments. I really welcome them and would love the dialogue. I am not offended or hurt by any comments that disagree with how I feel. I also don't mind if anyone tries to persuade me to feel differently. I even don't mind if you try to preach to me. Just remember that I ask you to be truly authentic and not give comments that are based on "tapes" that are in your head. I want to hear what you truly feel about your emotions about grief or anything else. I know that sometimes, our first reaction or response to something that someone says or writes is what we think we are supposed to say. I just want to hear what you really feel. Be authentic - can you tell that is one of my favorite words? If I don't agree, don't be offended. I love disagreeing with people. Of course I think I'm right, but I can occasionally change my mind.
2. How you're reading the blog: If you are reading this from another site such as Facebook or Carepages, that is fine. but I just don't have any way of knowing it. I would really appreciate it if you would register on this blog site. You sign in with your e-mail and you can use a different e-mail than you normally do - maybe register with yahoo or hotmail any other e-mail account. If you don't want people to see your name as a follower, just establish a user name with a name people wouldn't recognize (your dog's name or some cartoon name). There are several people registered that I don't know who they are, but they are listed as a follower. I don't know why I want to know how many people are reading this. I really want to know who is, but you can prevent that. I guess I just want to know if anyone really cares. I am going to keep writing anyway, but it's nice to see others are reading this.
3. Suggestions? Anyone have any ideas of ways to improve this. I am going to try and post some pictures when I get home.Don't have any on this computer. Are the postings too long? I can't seem to make them shorter; however, I know it is unwieldy. I'll keep working on that.
4. I have thought about writing some funny and not-so-funny stories about life with Jacob. They would not necessarily go under the topic of grief, but perhaps that is part of the healing process.
That's all for now. Please feel free to give me any suggestions. Doesn't mean I'll follow them - remember, I love to disagree, but it doesn't mean I don't love and appreciate you.
Wednesday, June 23, 2010
Treading Water
A wise reader of this blog left a comment that I like. It goes something like this: the longer you tread water, the more you get used to being in the water. I think this is where I'm at. For most of Jacob's life, I knew I would one day be at this point. Whenever I would express this thought to anyone, the usual response went something like this:
"You never know what doctors will be able to do."
"Look at all the advances they're making in medicine."
"You just need to enjoy one day at a time and not look in the future."
"God can work a miracle and heal his heart."
Well, Jacob's life is a testament to what the medical community can do. I won't go into all the details, because it is a very long story. I have lots of stories - mostly good, a few bad - about the many nurses, doctors and medical support staff that worked so hard to keep him alive and give him the quality of life that he had.
For the most part, I did enjoy each day with Jacob. I don't think I ever took the fact that he was with us for granted. I also knew that any of my children could be taken from me at any time.
So, this leads to the final statement: "God can work a miracle and heal his heart." Okay, get ready to go to deep here. You knew I was going to go here soon.
I have always struggled with calling Jacob's life a miracle. While I acknowledge the amazing events that led to us finding a doctor in Philadelphia that could treat him, his many surgeries and recoveries, and finally, going through two heart transplants at the point of death, I am just uncomfortable calling this a miracle.
Here's why: from the time I was pregnant with Jacob, people would say to me," I am praying for a miracle - I just know that God is going to heal his heart and he is going to be a healthy baby." Well, that didn't happen.
Another time: Jacob is recovering in the ICU after his first surgery. A mother whose baby is on the ECHO machine and not doing well, says to me, "I know why your son is doing so well and mine isn't:. It's because your husband is a minister and there are so many people praying for him."
Another one: I am in ICU in Philly holding Jacob after his first surgery. The baby next to him, a little girl born to very young parents and abandoned after she was born, dies while I am there. The nurses couldn't get me out of there, (Jacob was connected to so many lines), before she died. She died with no family there. A social worker came and held her after she died. I remember wondering, "God, is this really what it's like? Is Jacob doing well because so many people are praying for him, and this little girl isn't ? I don't think You really work this way, but if You do, I'm not sure I want any part of this."
Well, I think I am going to stop here. I have lots more to say, but I need to come up for air. Here is a statement I heard a very wise man at our church in Houston say one night at a prayer meeting:"If someone you love gets on an airplane and survives a plane crash, we say, 'Thank you, God, for saving my loved one.' If that airplane crashes and kills everyone, we don't praise God then." I am really messing this up, but basically, what he was saying was, "If we praise God in the good times, we have to praise Him in the really, really traumatic times."
I just don't know if I can really praise Him for Jacob's death. Do I blame God for it? No, his heart was flawed and we were so fortunate to have him for as long as we did. Do I think God could have performed a miracle? Well, if I thought He could and He chose not to, then I just don't know if I want to have much of a relationship with Him.
Okay, I am starting to drown a little. I need to tread water a bit.
More later,
Karen
"You never know what doctors will be able to do."
"Look at all the advances they're making in medicine."
"You just need to enjoy one day at a time and not look in the future."
"God can work a miracle and heal his heart."
Well, Jacob's life is a testament to what the medical community can do. I won't go into all the details, because it is a very long story. I have lots of stories - mostly good, a few bad - about the many nurses, doctors and medical support staff that worked so hard to keep him alive and give him the quality of life that he had.
For the most part, I did enjoy each day with Jacob. I don't think I ever took the fact that he was with us for granted. I also knew that any of my children could be taken from me at any time.
So, this leads to the final statement: "God can work a miracle and heal his heart." Okay, get ready to go to deep here. You knew I was going to go here soon.
I have always struggled with calling Jacob's life a miracle. While I acknowledge the amazing events that led to us finding a doctor in Philadelphia that could treat him, his many surgeries and recoveries, and finally, going through two heart transplants at the point of death, I am just uncomfortable calling this a miracle.
Here's why: from the time I was pregnant with Jacob, people would say to me," I am praying for a miracle - I just know that God is going to heal his heart and he is going to be a healthy baby." Well, that didn't happen.
Another time: Jacob is recovering in the ICU after his first surgery. A mother whose baby is on the ECHO machine and not doing well, says to me, "I know why your son is doing so well and mine isn't:. It's because your husband is a minister and there are so many people praying for him."
Another one: I am in ICU in Philly holding Jacob after his first surgery. The baby next to him, a little girl born to very young parents and abandoned after she was born, dies while I am there. The nurses couldn't get me out of there, (Jacob was connected to so many lines), before she died. She died with no family there. A social worker came and held her after she died. I remember wondering, "God, is this really what it's like? Is Jacob doing well because so many people are praying for him, and this little girl isn't ? I don't think You really work this way, but if You do, I'm not sure I want any part of this."
Well, I think I am going to stop here. I have lots more to say, but I need to come up for air. Here is a statement I heard a very wise man at our church in Houston say one night at a prayer meeting:"If someone you love gets on an airplane and survives a plane crash, we say, 'Thank you, God, for saving my loved one.' If that airplane crashes and kills everyone, we don't praise God then." I am really messing this up, but basically, what he was saying was, "If we praise God in the good times, we have to praise Him in the really, really traumatic times."
I just don't know if I can really praise Him for Jacob's death. Do I blame God for it? No, his heart was flawed and we were so fortunate to have him for as long as we did. Do I think God could have performed a miracle? Well, if I thought He could and He chose not to, then I just don't know if I want to have much of a relationship with Him.
Okay, I am starting to drown a little. I need to tread water a bit.
More later,
Karen
Tuesday, June 15, 2010
Grief - Shallow and Deep
On my journey of learning to embrace grief, I find myself thinking of a really large, Olympic-sized swimming pool (this could be because this has been an unusually hot day today so I am wishing I really was in a pool). There are some days when I am willing to dive in and go deep and explore the depths of grief in my heart; but there are other days when I just can't allow myself to go there, so I stay in the shallow end.
This post is going to be a "shallow" post. I'm not sure I am ready to write a "deep" post yet. I am also going to try and keep it shorter. I know I keep saying this, but as you can tell, I have a lot to say.
Today is the one year anniversary of Jacob's death. I've been dreading this day, but I really don't know why. There was nothing harder about this day than the other 364 days since June 14th, 2009. I didn't miss him any less yesterday than I did today. I guess it's because we made it through the year of all the "firsts": first Christmas, first birthday, etc.
I've been thinking about how in a different time, women would wear black for at least a year after they lost a spouse or child. Families would often hang a wreath with a black bow for a period of time to show their community that they were in mourning. In a way, I kind of like this tradition because it reminds those around you that your life has been shaken and rocked to its' core. This past year, I was able to go to work each day and teach my class; however, so much of my thought processes and coping skills had been shaken, that just making simple decisions was just too overwhelming sometimes. While I looked the same on the outside, I was not the same on the inside, emotionally and mentally. Perhaps, if I had been dressed in black from head to toe or wore a sign around me that said, "Caution, woman in mourning," than people around me would know that the person they knew from before Jacob's death was not the same person now. This is not a criticism of anybody - family, friends, coworkers, etc. We just live in a culture that wants things fixed quickly and this can't be fixed.
But then, I started thinking about if our culture adopted the "black-only while mourning" dress code - and by the way, it is my favorite color to wear, but really, all the time? - anyway, if this was all I wore, then eventually this would lead to some problems such as:
Okay, I'm starting to have to tread water here and I'm going back to the shallow end.
Good night.
This post is going to be a "shallow" post. I'm not sure I am ready to write a "deep" post yet. I am also going to try and keep it shorter. I know I keep saying this, but as you can tell, I have a lot to say.
Today is the one year anniversary of Jacob's death. I've been dreading this day, but I really don't know why. There was nothing harder about this day than the other 364 days since June 14th, 2009. I didn't miss him any less yesterday than I did today. I guess it's because we made it through the year of all the "firsts": first Christmas, first birthday, etc.
I've been thinking about how in a different time, women would wear black for at least a year after they lost a spouse or child. Families would often hang a wreath with a black bow for a period of time to show their community that they were in mourning. In a way, I kind of like this tradition because it reminds those around you that your life has been shaken and rocked to its' core. This past year, I was able to go to work each day and teach my class; however, so much of my thought processes and coping skills had been shaken, that just making simple decisions was just too overwhelming sometimes. While I looked the same on the outside, I was not the same on the inside, emotionally and mentally. Perhaps, if I had been dressed in black from head to toe or wore a sign around me that said, "Caution, woman in mourning," than people around me would know that the person they knew from before Jacob's death was not the same person now. This is not a criticism of anybody - family, friends, coworkers, etc. We just live in a culture that wants things fixed quickly and this can't be fixed.
But then, I started thinking about if our culture adopted the "black-only while mourning" dress code - and by the way, it is my favorite color to wear, but really, all the time? - anyway, if this was all I wore, then eventually this would lead to some problems such as:
- ,Who determines the proper amount of time to wear black?
- What if someone needed less than or more than a year for mourning?
- If you wear all black, can you accessorize with color? After all, what would I do with all my Vera Bradley bags my kids have given me?
- If we put a black-ribboned wreath on the door, do I use my favorite square grapevine wreath or the one that has the wrought-iron designs?
- If Richard is ready to take down the wreath and I'm not, who gets to decide?
Okay, I'm starting to have to tread water here and I'm going back to the shallow end.
Good night.
Sunday, June 13, 2010
Images of Grief
I am going to try and keep this shorter. Here goes...
What images come to your mind when you hear the word "grief?" Here's what comes to my mind:
Now remember, this is my blog and I get to write what I want. You are welcome to write a comment and share your own spiritual take on this, but I am not ready to do this.
While the depth of my grief over Jacob's death is deep, I know that it does not compare to some of the examples I listed above. It doesn't lessen it knowing that, but it does help me put life in perspective. Jacob, despite overwhelming health issues, had a wonderful life and received and gave a lot of joy. He wasn't raised in a concentration camp, he never went hungry, he had the best medical care available and he was loved by so many people. He had a great life. Saying that, I do have some images of personal images of grief related to him. Here goes and I promise this will be it for this post:
So there.
What images come to your mind when you hear the word "grief?" Here's what comes to my mind:
- a widow of a fallen soldier, dressed in black and standing by the graveside, holding the folded American flag
- an elderly woman trying to figure out how to pump gas from the gas station after her husband has died. He always did this for her and she never learned how and now she has to.
- a couple decorating a nursery for a baby that will never come home from a hospital
- a family or friend, losing a beloved dog. They know that it's not the same as a person dying, but dang it, they loved that dog and he was like a child to them.
- the look on people's faces when they are standing by the bedside of someone they love who is critically ill. There is just a certain look you have when you know they are not going to make it.
- a Middle Eastern women, shrouded in black, wailing as her child's coffin is carried through her town or village-another senseless death
- an emaciated mother in a third-world country trying to nurse another child, knowing this child will probably die, also.
- going to the Holocaust museum in Washington, D.C. and seeing pictures of people being separated from loved ones as they are transported to extermination camps.
Now remember, this is my blog and I get to write what I want. You are welcome to write a comment and share your own spiritual take on this, but I am not ready to do this.
While the depth of my grief over Jacob's death is deep, I know that it does not compare to some of the examples I listed above. It doesn't lessen it knowing that, but it does help me put life in perspective. Jacob, despite overwhelming health issues, had a wonderful life and received and gave a lot of joy. He wasn't raised in a concentration camp, he never went hungry, he had the best medical care available and he was loved by so many people. He had a great life. Saying that, I do have some images of personal images of grief related to him. Here goes and I promise this will be it for this post:
- looking at the picture of Ben and Katie's face at the gravesite. They loved him and never complained about his health needs always coming before their needs when they were growing up. I have a lot of stories about this.
- speed-dialing my family on my cellphone and going down the list - Richard (#2), Ben (#4), Katie (5), Jacob (#6) - my heart always hurts when I realize Jacob won't answer anymore.
- memories of my standing by his casket and patting it constantly at the visitation and the gravesite ceremony. I know the part of him that I loved isn't there anymore - the body is just a shell and all that, but this was the shell of my son. I wanted to help him get dressed, tie his shoes, wash his clothes, ruffle his hair, etc., one more time.
- sitting by his bed so many times and wondering if I would get to bring my son home again.
- Finally, I need to stop because this is too hard - watching him go into cardiac arrest and trying to revive him. Constantly saying, "Jacob, Jakey, come on honey, mom's here, stay with me, you can do this. Jacob, I love you, it's okay, I love you, sweetie. Mom's here." And then, watching doctors and nurses trying to revive him, knowing he's gone, but surely he'll rally one more time. Seeing Katie and Richard by his bedside telling him goodbye. And then, Ben and Beth coming in after he's gone and weeping by his bedside. Finally, our extended family - grandparents, aunts and uncles, nephews and nieces, cousins, and of course, so many wonderful friends, telling him goodbye.
So there.
Saturday, June 12, 2010
The "A-Team" (sorry, dear brother)
Okay, I had to do this. My wonderful brother, Ben, just posted a comment on Facebook about how stupid it was to have a movie remake of that wonderful television series, "The A-Team." I realize this show was pretty cheesy, but here's what I liked about it and the movie: good guys are obvious and bad guys are jerks. Good guys beat the bad guys, but you don't really see them get hurt. Just some silly, fun entertainment and a good way to spend an afternoon when you are tired of spending it with Grief - your new best friend.
So, what does the A-Team have to do with grief? You knew I was getting to that. Over the last 21 years, I have read a lot of books and talked with many people about the subject of pain and suffering. It would be so noble of me to say that Jacob and I never asked why. Well, sorry, we did. There were many times when he was in the hospital and he would look at me with the huge, brown eyes and ask, "Why, Momma, why me?" I had no profound words to say to him, because I would ask the same question when I was by myself. All I could say to him was that we were in this together. Sometimes he would say, "Mom, this really sucks, doesn't it?" He knew I hated that expression, but he was right. It did and it still does.
Back to the A-Team - some of the wisest advice I have received from friends, family, doctors, books, etc. is that when you are experiencing a very deep loss, it is necessary to surround yourself with an A-Team group of people. Okay, I know that really sounds like something Richard would write, but it just means that I have to make sure I am surrounded by people that will help me through this dark time in my life. I am so fortunate to have a loving, extended family, wonderful friends, and a very supportive work environment. Perhaps one of the best A-Teams I had this year was my class of 19 six year olds. There were many days when I would come to school crying and yet, when my students walked in, I knew I had to get to work and the tears would stop. On the days when they didn't, my wonderful team and other staff members would step in and take care of me and my class. My students were absolutely incredible. They never met Jacob, yet they always wanted to sit in his chair and hear stories about him and my other children. I brought his blue, canvas director chair to my classroom and every day, one child would get to sit in his chair.
Okay, I'll wrap up this A-Team idea: the best A-Team I have is my husband, Richard. After that, it would be my two older children, Ben and Katie. Richard is the perfect mate for me- we have been married for almost 34 years and I love him more now than when I married him. He is steadfast, calm, dependable, funny, really, really cute and quirky (a must for me), and sometimes, really weird. I am not letting him edit this blog - I tried with the first post and we almost had a fight..... seriously. He wants to write for the reader. I am writing this for me. I'll write more later about Richard, Ben and Katie and how they have helped me deal with this overwhelming grief.
Thank you for reading this. I know it is long. I'll try to stay on topic better. This is all new and pretty random right now.
Good Night!
Karen
So, what does the A-Team have to do with grief? You knew I was getting to that. Over the last 21 years, I have read a lot of books and talked with many people about the subject of pain and suffering. It would be so noble of me to say that Jacob and I never asked why. Well, sorry, we did. There were many times when he was in the hospital and he would look at me with the huge, brown eyes and ask, "Why, Momma, why me?" I had no profound words to say to him, because I would ask the same question when I was by myself. All I could say to him was that we were in this together. Sometimes he would say, "Mom, this really sucks, doesn't it?" He knew I hated that expression, but he was right. It did and it still does.
Back to the A-Team - some of the wisest advice I have received from friends, family, doctors, books, etc. is that when you are experiencing a very deep loss, it is necessary to surround yourself with an A-Team group of people. Okay, I know that really sounds like something Richard would write, but it just means that I have to make sure I am surrounded by people that will help me through this dark time in my life. I am so fortunate to have a loving, extended family, wonderful friends, and a very supportive work environment. Perhaps one of the best A-Teams I had this year was my class of 19 six year olds. There were many days when I would come to school crying and yet, when my students walked in, I knew I had to get to work and the tears would stop. On the days when they didn't, my wonderful team and other staff members would step in and take care of me and my class. My students were absolutely incredible. They never met Jacob, yet they always wanted to sit in his chair and hear stories about him and my other children. I brought his blue, canvas director chair to my classroom and every day, one child would get to sit in his chair.
Okay, I'll wrap up this A-Team idea: the best A-Team I have is my husband, Richard. After that, it would be my two older children, Ben and Katie. Richard is the perfect mate for me- we have been married for almost 34 years and I love him more now than when I married him. He is steadfast, calm, dependable, funny, really, really cute and quirky (a must for me), and sometimes, really weird. I am not letting him edit this blog - I tried with the first post and we almost had a fight..... seriously. He wants to write for the reader. I am writing this for me. I'll write more later about Richard, Ben and Katie and how they have helped me deal with this overwhelming grief.
Thank you for reading this. I know it is long. I'll try to stay on topic better. This is all new and pretty random right now.
Good Night!
Karen
The Friendship Begins
I have started to write some comments to myself on what grief is. This is sort of like journaling, which is supposed to be helpful for someone dealing with getting through grief. I have resisted doing it because I don't think you ever get "through" grief. It becomes part of who you are. This is my journey of grief and is something that while deeply personal, is evident to all who see and know me. If you want to read more explanations about Jacob and his life, go to http://www.carepages.com/. and type in "jacob's journey." You will have to register, but it is a secure site.
So.....here goes......
So.....here goes......
Grief has changed me. I will always remember watching an interview of one of the women who lost her husband in the Twin Towers durintg the 911 attack. Here's sort of how it went:
Interviewer: "How has the sudden loss of your husband affected you?
Widow: "I will never be the same. My friends look at me and say they want the old person back. I am the face of grief and I WILL NEVER BE THE SAME."
I just remember hearing the deep hurt in her voice that people actually thought she could get on with her life. I knew that one day I would be experiencing that deep, gut-wrenching kind of grief. I hoped, I hoped, I hoped I wouldn't have to - but I am above all, very much a realist, and I knew I would outlive Jacob. As we are approaching the one year anniversary of his death, I am learning to embrace grief. It is my constant companion, so why not get to know it better? There are nano-seconds when grief is not right in my face -that brief moment between sleeping and waking up when life seems as it should be. That's about it; as my first graders would say, we are BFF - best friends forever.
So, in order to be a good friend, I have decided to embrace this grief and learn to live with it. Many of my friends have said that perhaps I need to see a counselor to help me deal with this grief. My response is that a counselor can not bring Jacob back, so why would I waste that time and money doing that (there's that pragmatic side coming out). My family doctor says that I am doing all the right things: surrounding myself with supportive friends and family members, going to work everyday, exercising, developing new hobbies and interests, taking meds to help, so what else is there to do?
Well, I am going to start writing about what it feels like to embrace grief. I am not writing to help anyone else, though if it does, I'm glad. If you want to share your own journey while I am writing this, please do this. I only ask that you be authentic and tolerant of my and other's words. I am writing this for purely selfish, therapeutic reasons. If you want to respond, please do.
Please don't worry about me if you read something that alarms you. I am not going off the deep end. I do believe in the natural order of the universe, children are not supposed to die before there parents. I know all the theological responses that people are thinking. Please don't tell them to me. I have had a lifetime to explore why life is so hard sometimes. Grief is not unknown to me or my family. My father died after a lengthy illness when I was ten, so grief was something I was raised with. I had a wonderful model from my mother about how to pick yourself after a devastating loss and keep putting one foot in front of the other.
But, back to the reason for this blog.....
But, back to the reason for this blog.....
At this time, one year ago, life seemed to be pretty calm, for once. Ben and his family were doing well in Texas. Katie was well established in her job and busy with friends. Richard was enjoying his new job with Lifeway. I was looking forward to a nice summer with no graduate school to think about. I was even toying with the idea of returning to school for a doctorate, but was going to take the summer off. We were able to go to church as normal people - not as a staff family- and if we wanted to go somewhere on the weekend, we could. This was something we had never been able to do in our 33 years of marriage. We were ready to enjoy the empty nest. We had just moved Jacob into a house in Rome where he was living with three of his good friends from Shorter. He had just completed a Maymester at Shorter and was going to summer school. He was determined to graduate on time. His second heart transplant had set him back a semester and he was bent on graduating with his friends. Before the summer session started, he was going to go to a yearbook retreat with the yearbook staff from Shorter.
I remember that he was so nervous about picking a friend up from Douglasville and driving through Atlanta during rush hour traffic on a Wednesday morning. Jacob was a very cautious driver and had never driven through Atlanta before. I remember that he expressed enough anxiety about this, that I offered to drive him and his friend to the retreat up in Northeast Georgia. I guess being his mom gave me an extra intuitive sense that he was more than just nervous about this. As I look back, I realize that he wasn't feeling well, but he was pushing himself to go to this retreat. We did call the transplant nurse before he left. We were nervous about some fluid retention he was having. This was a chronic problem he had had most of his life. She told me what to do, said she trusted me to know if I though he was well enough to go on the retreat. Oh, how I wish she hadn't trusted me that much. We should have taken him to the hospital then.
But on to reality.....On Friday, June 12th (what would have been my dad's 84th birthday), I was so enjoying my summer vacation. I met my friend, Gayle, and we went shopping (one of my favorite hobbies) to a neat little place in Smyrna called, "Pie In The Sky." I bought a green, overnight bag there. This is significant to me only because for years, I had kept an overnight bag packed and ready for our many emergency trips to the hospital. I had finally unpacked that bag - a big statement to me that Jacob was doing well. I wasn't going to buy the bag because I really didn't need it; however, I thought it would be nice to have when I travelled with Richard during the summer - again, a beginning of a new phase in my life. Memories of those emotions still haunt me when I use this bag, but that's for another post. Gayle and I had lunch with my wonderful daughter and just had an all-around good day. It's funny (not really funny, but don't know the right word), how life changes so fast. I pulled into the garage that afternoon, unpacking all my shopping treasures.
Jacob drove in at the same time. He had survived his first trip driving through the city. I was ready to greet him and congratulate him on his driving trip. He walked into the garage and I will never forget this moment.....he looked at me, started crying and said, "Momma, I don't feel so good." His feet were so swollen, as well as his hands, face, etc. I took one look and knew something was wrong.
So, my pretty, new, green bag was packed quickly for its' initial trip -not for a weekend get-away with my husband, but for frantic, panic-filled trip to Egleston. It's funny how the mind works - I remember quickly packing that bag, throwing my "hospital" clothes into it, hoping this was just for nothing, wondering if I was overpacking. I was sure we were just here for the weekend. We would get Jacob some IV diuretics and be on our way home in a few days. This was just a little bump in my summer plans. We had done this so many times in his 21 years. I knew he was sick and was very worried, but he had ALWAYS rallied and overcome each setback. Little did I know that I was beginning a new lifelong journey of embracing grief.
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