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.
Wednesday, September 29, 2010
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.
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