Disclaimer: There are probably some grammatical errors and misspelled words. Richard will fix this when he reads this. He loves to do this.
Tonight, a friend of mine joined a club I'm a member of - it's the club nobody wants to belong to - it's the group of mothers and fathers who have lost a child. In the grand order of the universe, this is just not supposed to happen. Children are not supposed to die before their parents! This is not how life is supposed to be. You are supposed to be born, grow up, give your parents lots of gray hairs, and then stand at their bedside when they die. Parents are not supposed to watch their children die. Surely, surely, God, you did not plan for this when you were creating this universe.
Okay, for all you theologins out there, yes, I know all about the effect of sin in this world. Remember, I am the granddaughter and daughter of Methodist ministers and the wife and mother of Baptist ministers (sorry, Mom and Daddy). But really, can anyone, I mean anyone, really explain the death of a child to a grieving mother? Where is Dietrich Bonhoffer (sp?) or C.S. Lewis when you need him?
So, the only thing that really brings comfort to me right now is to think about Mary, the mother of Jesus. She knew what it was like to lose her son. I bet she had her moments of anger. I know that she was grieving at the foot of the cross where her son died.
Another thing that gets me through these dark days is to look at other parents that have lost their children and see that they make it through each day. They are my inspiration. I asked a friend of mine, who lost her son ten years ago, this question: "Will I ever get to a point where I can be silly and have fun again?" Her answer was yes, but in a different way.
Those are the people I draw my strength from - they know that feeling of dreaming about your son and in your dreams, he is alive and life is as it was.....but then, you wake up, and life comes crashing back to reality.
Or...you don't dream about him, but in that moment between sleep and waking up, you think that your life is back to normal and he is still here.
Or... you speed-dial your children on your cell-phone as you drive home - Katie #4, Ben #5, Jacob #6...wait, I can't call him anymore. I can't even hear his voice on voicemail anymore.
Or...you're buying valentines to send to your children and you go to the section for sons. This year, you can only buy for one son, not two.
Or...the list goes on. Too many to write about.
So...to wrap this up. I am so sorry that my friend, Denise, has to join this group. I wish there wasn't any need for this group, and trust me, when I get to Heaven, and I better get there,(are you listening, God?), I do plan to have a very long talk with you-know-who and find ask Him this question....WHAT WERE YOU THINKING????? This does not fit the cosmic order that you so beautifully designed.I know we are supposed to believe that You have a plan for our lives, but frankly, if this is it, I think I would like to have plan B.
Okay...I am going to stop. If you are still reading this, and why would you, go hug your children, your spouse, your partner, your friends, anyone whom you love and would be grieving for if they were suddenly gone tomorrow.
My friend, Denise, would want you to.
Wednesday, February 16, 2011
Tuesday, February 15, 2011
Hello Again
Well, I haven't written in awhile and I'm sure you're thinking, "Well, Karen must be doing pretty good since she hasn't ranted on her blog in awhile." That sounds rather narcissistic (sp?) of me, because, probably, no one really cares if I have written. Frankly, I just haven't had the energy to write. It takes a lot of emotion to write and I needed all the energy I could save to get through the holidays and start a new year.
In some ways, I'm doing okay. Not really, but it felt good to write that. The rawness (is that a word?) of grief has eased a little. I have also learned that it is important and necessary to allow myself to do things that give me pleasure. For those of you who know my family, you know we never relax before the work is done. I'm learning that it is vital, if not critical, for me to do things that bring joy and beauty to my life. Here's some of those things:
1. Spending time (lots of it) at our cabin and listening to the babbling creek that runs behind the back porch. Yes, the creek really does babble.
2. Going for long walks or drives in the mountains. There is something so therapeutic about just seeing the mountains - even from a distance.
3. Knitting - believe it or not, knitting has a lot of therapeutic value. There is actual research that shows it helps the brain in the same way that yoga or meditation does. I love to knit and it has brought so many wonderful new friends into my life. I don't really knit all that well, but that doesn't bother me. I'll write about the philosophical benefits to knitting on another post.
4. Shopping with my daughter or anyone who wants to go with me - I love to shop, especially with my daughter. I especially love to go shopping with other people and help them spend THEIR money.
5. Listening to certain kinds of music - can't take really meaningful music right now - just something kind of cheesy. I've discovered that I like "rap lite" - the clean kind of rap like they sing on Glee. Anything I can laugh at.
Okay, enough.
I just thought I would say hello, again, and see how everyone is doing. I actually have another post to write about a friend of mine who just lost her son. I think I will write that as a new post.
In some ways, I'm doing okay. Not really, but it felt good to write that. The rawness (is that a word?) of grief has eased a little. I have also learned that it is important and necessary to allow myself to do things that give me pleasure. For those of you who know my family, you know we never relax before the work is done. I'm learning that it is vital, if not critical, for me to do things that bring joy and beauty to my life. Here's some of those things:
1. Spending time (lots of it) at our cabin and listening to the babbling creek that runs behind the back porch. Yes, the creek really does babble.
2. Going for long walks or drives in the mountains. There is something so therapeutic about just seeing the mountains - even from a distance.
3. Knitting - believe it or not, knitting has a lot of therapeutic value. There is actual research that shows it helps the brain in the same way that yoga or meditation does. I love to knit and it has brought so many wonderful new friends into my life. I don't really knit all that well, but that doesn't bother me. I'll write about the philosophical benefits to knitting on another post.
4. Shopping with my daughter or anyone who wants to go with me - I love to shop, especially with my daughter. I especially love to go shopping with other people and help them spend THEIR money.
5. Listening to certain kinds of music - can't take really meaningful music right now - just something kind of cheesy. I've discovered that I like "rap lite" - the clean kind of rap like they sing on Glee. Anything I can laugh at.
Okay, enough.
I just thought I would say hello, again, and see how everyone is doing. I actually have another post to write about a friend of mine who just lost her son. I think I will write that as a new post.
Sunday, November 14, 2010
November 14- what a day
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.
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.
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.
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