So far, so good.
I always tell my patients who have suffered a loss to expect a difficult holiday season. So many memories to deal with, expectations to temper, gatherings to weather....
I have figured all year that this 6 week stretch would be intense and painful. So far, so good. Perhaps my low expectations have made it easier to deal with. Perhaps I haven't hit the tough part yet.
I elected for a no-nonsense approach to decorating this year. We lugged all the crap out, decorated with our favorite stuff for a couple hours, and immediately put it all away. Might be good to do it this way all the time. It was like a dental cleaning; I dreaded it, but felt better when it was done.
We bought and decorated a tree for Henry this year. I find it surprisingly comforting. It's got "his" ornaments on it: Lightening McQueen and Sally, some he made, some with photos of him, some he was given. Toward the end of his illness, he became very fond of painting various cheap wooden models we got from the craft store. We put hooks in them and put them on the tree too. Who knew that tanks and fighter jets in rainbow colors would double as Christmas ornaments? I'm really happy to have them on the tree. We haven't known what to do with them, and they are so emotionally valuable. To have a way and a reason to use them, celebrate them, treasure them annually is so comforting to me.
So far, so good. Henry has been gone for 10 months on Christmas. The intense pain that accompanied Mother's day, his birthday, my birthday, so close to his death, has lessened. For this I am grateful. I'm cautiously optimistic that we will be able to enjoy, truly enjoy, the holidays and family, all the while missing him.
Tuesday, December 15, 2009
Friday, December 4, 2009
WIshlist
I'm borrowing this poem from another site. Compassion Friends is an organization for bereaved parents. They have published a poem that really spoke to me; I've modified it to my own taste.
Bereaved Parents Wish List
I wish my child hadn’t died. I wish I had him back.
I wish you wouldn’t be afraid to speak my child’s name. My child lived and was very important to me. I need to hear that he was important to you as well.
If I cry and get emotional when you talk about my child, I wish you knew that it isn’t because you have hurt me. My child’s death is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both.
Being a bereaved parent is not contagious, so I wish you wouldn’t shy away from me. I need you more than ever.
I need diversions, so I do want to hear about you; but I also want you to hear about me. I might be said and I might cry, but I wish you would let me talk about my child, my favorite topic of the day.
I know that you think of and pray for me often. I also know that my child’s death pains you, too. I wish you would let me know things through a phone call, a card or a note, or a real big hug.
I wish you wouldn’t expect my grief to be over in six months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die.
I am working very hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child, and I will always grieve that he is dead.
I wish you understood how my life has shattered. I know it is miserable for you to be around me when I’m feeling miserable. Please be as patient with me as I am with you.
When I say, "I’m doing okay," I wish you could understand that I don’t feel okay and that I struggle daily.
I wish you knew that all of the grief reactions I’m having are very normal. Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when I’m quiet and withdrawn or irritable and cranky.
I wish you understood that grief changes people. When my child died, a big part of me died with him. I am not the same person I was before my child died, and I will never be that person again.
I wish very much that you could understand – understand my loss and my grief, my silence and my tears, my void and my pain. But I wish more that you will never understand.
I'm really lucky in that most, if not all, of the people I am close to understand this poem without having read it. I think the part that spoke to me the most was the third paragraph. I can't often talk about Henry without crying, and I see it scaring people away from talking about him. I wish I could control my tears, but it's not in my genetics, so I don't even really try. I do wish I could tell people I'm happy to talk about him and share, but usually I'm crying so much I can't get it out.
Bereaved Parents Wish List
I wish my child hadn’t died. I wish I had him back.
I wish you wouldn’t be afraid to speak my child’s name. My child lived and was very important to me. I need to hear that he was important to you as well.
If I cry and get emotional when you talk about my child, I wish you knew that it isn’t because you have hurt me. My child’s death is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both.
Being a bereaved parent is not contagious, so I wish you wouldn’t shy away from me. I need you more than ever.
I need diversions, so I do want to hear about you; but I also want you to hear about me. I might be said and I might cry, but I wish you would let me talk about my child, my favorite topic of the day.
I know that you think of and pray for me often. I also know that my child’s death pains you, too. I wish you would let me know things through a phone call, a card or a note, or a real big hug.
I wish you wouldn’t expect my grief to be over in six months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die.
I am working very hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child, and I will always grieve that he is dead.
I wish you understood how my life has shattered. I know it is miserable for you to be around me when I’m feeling miserable. Please be as patient with me as I am with you.
When I say, "I’m doing okay," I wish you could understand that I don’t feel okay and that I struggle daily.
I wish you knew that all of the grief reactions I’m having are very normal. Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when I’m quiet and withdrawn or irritable and cranky.
I wish you understood that grief changes people. When my child died, a big part of me died with him. I am not the same person I was before my child died, and I will never be that person again.
I wish very much that you could understand – understand my loss and my grief, my silence and my tears, my void and my pain. But I wish more that you will never understand.
I'm really lucky in that most, if not all, of the people I am close to understand this poem without having read it. I think the part that spoke to me the most was the third paragraph. I can't often talk about Henry without crying, and I see it scaring people away from talking about him. I wish I could control my tears, but it's not in my genetics, so I don't even really try. I do wish I could tell people I'm happy to talk about him and share, but usually I'm crying so much I can't get it out.
Doors
It's been a rough week; I'm not sure why.
I'm still struggling with quiet time. There's been a lot of it lately. I'm still unaccustomed to not being needed all of the time. The girls kinda do their own thing in the evenings, leaving me with more free time than I can remember since college. It doesn't take long for my thoughts to settle on him.
I contine to feel like I'm making progress in my grief. I'm a little frustrated too. I feel like I'm in some Hitchcockian movie, trying to walk through an endless progression of doors. I work and struggle and sweat my way through picking the lock or figuring out how the door works, and when it finally opens there is relief, and a sense of progress, and....another locked door.
I'm not sure where I think I'm supposed to be, but I'm continually surprised that I'm here. It's like every day, sometimes every hour, my brain grapples again with the fact that he's gone. My son, my smart gorgeous funny healthy son got cancer. Oh my god, he got cancer. And then he got chemo, and infections, and a central line, and TPN, and radiation, and then the goddamn thing came back and he died. Oh my god, my son died.
Over and over and over.
Is this the denial people talk about? I always thought of that more in a literal way, where you really don't believe something happened. But I do feel at some level I haven't accepted it...
I'm still struggling with quiet time. There's been a lot of it lately. I'm still unaccustomed to not being needed all of the time. The girls kinda do their own thing in the evenings, leaving me with more free time than I can remember since college. It doesn't take long for my thoughts to settle on him.
I contine to feel like I'm making progress in my grief. I'm a little frustrated too. I feel like I'm in some Hitchcockian movie, trying to walk through an endless progression of doors. I work and struggle and sweat my way through picking the lock or figuring out how the door works, and when it finally opens there is relief, and a sense of progress, and....another locked door.
I'm not sure where I think I'm supposed to be, but I'm continually surprised that I'm here. It's like every day, sometimes every hour, my brain grapples again with the fact that he's gone. My son, my smart gorgeous funny healthy son got cancer. Oh my god, he got cancer. And then he got chemo, and infections, and a central line, and TPN, and radiation, and then the goddamn thing came back and he died. Oh my god, my son died.
Over and over and over.
Is this the denial people talk about? I always thought of that more in a literal way, where you really don't believe something happened. But I do feel at some level I haven't accepted it...
Thursday, November 26, 2009
Bereavement
I have a love-hate relationship with our bereavement group.
The first group we attended, I could barely speak. I spent the entire group fighting tears. The thought that all of the families in that room with us had lost what we had lost was heart-breaking. It was like a new club. We were no longer in the cancer club, now we were in the "lost a child" club.
But, like the cancer club, membership has it's privileges. Ok, maybe not. But just as the cancer club was not a bad place to be once you got over the fact you had to be there, this club is so valuable. I guess it's better to be in a club than on your own. The club part is your option, not the "lost a child" part.
In the cancer club you shared what to feed your kids when they had chemo, how bad certain meds were, where to park on which days in the hospital lot. In the "lost a child" club, you learn that Halloween is going to be more painful than you expected, how not to kill someone who tells you about their miraculous recovery because they prayed, what to do with the empty Christmas stocking.
This is the love part of the relationship.
I've noticed a pattern. A few days before we have a meeting, my emotional center of gravity shifts. I start to feel it pulling me down. Things that I often take in stride make me very sad. Last week the day of the bereavement group I cried all the way home from work. Our schedule so far has been every other week, but one month we went to 3 weeks in a row. Mr. Smak and I were both VERY down after that. Maybe it's coincidence, it's not like that's the only time it happens, but I'm seeing a pattern. This is the hate part.
Last week we went. The girls love to go, which continues to surprise me. It's a big time commitment for us, a long trip down and back, but they are disappointed when we can't make it. Anyway, last week we hit traffic, arrived quite late, and ended up driving a total of 3.5 hours for a 45 minute meeting. We sort of decided on the way down that we were probably going to quit going soon.
I don't know what word to put on it, but the group changes how I'm feeling. It is comforting, but that's not the word I'm looking for. There is something about taking the trip that we drove so many times with/for Henry that is in a sense honoring him. Invariably I cry, and leave emotionally drained. But there's a sense of relief....still not the right word. Kind of the emotional version of how your body feels after a very intense workout.
Mr. Smak and I were surprised at how good we felt when we left last week. The experience requires us to dedicate several hours to Henry, focus on him, his story, our pain and loss, and know that we are doing it again in a couple of weeks. In that sense it's meditative, or religious, I guess.
The first group we attended, I could barely speak. I spent the entire group fighting tears. The thought that all of the families in that room with us had lost what we had lost was heart-breaking. It was like a new club. We were no longer in the cancer club, now we were in the "lost a child" club.
But, like the cancer club, membership has it's privileges. Ok, maybe not. But just as the cancer club was not a bad place to be once you got over the fact you had to be there, this club is so valuable. I guess it's better to be in a club than on your own. The club part is your option, not the "lost a child" part.
In the cancer club you shared what to feed your kids when they had chemo, how bad certain meds were, where to park on which days in the hospital lot. In the "lost a child" club, you learn that Halloween is going to be more painful than you expected, how not to kill someone who tells you about their miraculous recovery because they prayed, what to do with the empty Christmas stocking.
This is the love part of the relationship.
I've noticed a pattern. A few days before we have a meeting, my emotional center of gravity shifts. I start to feel it pulling me down. Things that I often take in stride make me very sad. Last week the day of the bereavement group I cried all the way home from work. Our schedule so far has been every other week, but one month we went to 3 weeks in a row. Mr. Smak and I were both VERY down after that. Maybe it's coincidence, it's not like that's the only time it happens, but I'm seeing a pattern. This is the hate part.
Last week we went. The girls love to go, which continues to surprise me. It's a big time commitment for us, a long trip down and back, but they are disappointed when we can't make it. Anyway, last week we hit traffic, arrived quite late, and ended up driving a total of 3.5 hours for a 45 minute meeting. We sort of decided on the way down that we were probably going to quit going soon.
I don't know what word to put on it, but the group changes how I'm feeling. It is comforting, but that's not the word I'm looking for. There is something about taking the trip that we drove so many times with/for Henry that is in a sense honoring him. Invariably I cry, and leave emotionally drained. But there's a sense of relief....still not the right word. Kind of the emotional version of how your body feels after a very intense workout.
Mr. Smak and I were surprised at how good we felt when we left last week. The experience requires us to dedicate several hours to Henry, focus on him, his story, our pain and loss, and know that we are doing it again in a couple of weeks. In that sense it's meditative, or religious, I guess.
Tuesday, November 17, 2009
Alone, Part 2
What fabulous comments on my last post...I received several in private email as well. As always, thanks to you all for the support.
I do feel it important to clarify, however, that my many theist friends are not at all excluding of me, or proselytizing, or in any way pushing me away. Many many have been so helpful, and supportive. I guess it's sort of a cultural difference...a different map of the world that makes me feel isolated. What they turn to for comfort is not comforting to me.
There has been the occasional acquaintance who says something useful like "How can you believe you'll never see him again? Wouldn't it soothe you to know that you'll see him again in heaven?" to which I (would like to) reply, "I'd like to believe he'll be alive in my Christmas stocking on December 25, but that doesn't make it so." The truth is that I don't believe I'll ever see him, hold him, talk to him again. I think when you're done, when the neurons in the brain stop firing for long enough, that you're gone. What many see as the soul, I see as physics.
In so many ways, I think this is liberating. As a commenter noted, there is no "why" in physics. There is no blame, there is no plan. There is random chance that a cell in Henry's brain underwent a genetic transformation after which it no longer obeyed the laws of it's fellow brain cells, and grew and grew and grew until it killed him. It happens predictably, based on probability. There's nothing and no one to be angry about. I got to skip that part of grief.
There is of course a flip side. When there is no god, no one skippering the boat, the question of futility looms large. Perhaps that is something that theists struggle with as well....my guess is that it has a different flavor.
I appreciate all of the support and suggestions, there were several leads I hope to pursue.
I do feel it important to clarify, however, that my many theist friends are not at all excluding of me, or proselytizing, or in any way pushing me away. Many many have been so helpful, and supportive. I guess it's sort of a cultural difference...a different map of the world that makes me feel isolated. What they turn to for comfort is not comforting to me.
There has been the occasional acquaintance who says something useful like "How can you believe you'll never see him again? Wouldn't it soothe you to know that you'll see him again in heaven?" to which I (would like to) reply, "I'd like to believe he'll be alive in my Christmas stocking on December 25, but that doesn't make it so." The truth is that I don't believe I'll ever see him, hold him, talk to him again. I think when you're done, when the neurons in the brain stop firing for long enough, that you're gone. What many see as the soul, I see as physics.
In so many ways, I think this is liberating. As a commenter noted, there is no "why" in physics. There is no blame, there is no plan. There is random chance that a cell in Henry's brain underwent a genetic transformation after which it no longer obeyed the laws of it's fellow brain cells, and grew and grew and grew until it killed him. It happens predictably, based on probability. There's nothing and no one to be angry about. I got to skip that part of grief.
There is of course a flip side. When there is no god, no one skippering the boat, the question of futility looms large. Perhaps that is something that theists struggle with as well....my guess is that it has a different flavor.
I appreciate all of the support and suggestions, there were several leads I hope to pursue.
Sunday, November 15, 2009
Alone
In the final analysis, we are all really alone.
Sometimes I feel more alone than others.
I have a very supportive family, and a wonderful network of friends.
The grieving support group has provided me with another group of people who can relate to me and to whom I can relate in ways that my friends and family thankfully cannot.
But I have yet to happen upon another non-theist** who has lost a child.
I've read, and continue to read, several blogs of parents who have lost a child. Most are openly religious, in a structured sense. Church, prayer, reading and quoting the bible. Some are less structured, and appear to believe in god but in a less formal way. Angels, seeing loved ones in heaven, more prayer.
Allow me to formally digress into a disclaimer. I have nothing against religion. It is a useful and powerful tool in the lives of many, including many people whom I love and respect. It's just that I don't believe in god, and I can't imagine ever believing in god, just as strongly as those who do fervently believe in god can't imagine not doing so. It's part of the deep fabric of my being since I went through my own self-directed religious journey in my late teens. It may be arrogance, but I think that I've thought about god a lot more than many people who believe in god.
Anyhoo, I feel like the only one (my husband excepted.) I haven't met/read/heard of a fellow non-theist grieving a child. Of course, they exist...they must. I wish I could find some. We as grieving parents have so many emotions and experiences in common; our real and cyber-relationships are so supportive. But I get lost, feel shut out at times, when the healing turns to god and the relief that people seem to get from that belief and relationship. I just can't go there.
Where is the nearest Pseudo-Buddhist Non-theist American Grieving Parent support group?
**My newly preferred word for my belief system. Atheist is so loaded these days. I'm not anti-god, I just don't believe in one.
Sometimes I feel more alone than others.
I have a very supportive family, and a wonderful network of friends.
The grieving support group has provided me with another group of people who can relate to me and to whom I can relate in ways that my friends and family thankfully cannot.
But I have yet to happen upon another non-theist** who has lost a child.
I've read, and continue to read, several blogs of parents who have lost a child. Most are openly religious, in a structured sense. Church, prayer, reading and quoting the bible. Some are less structured, and appear to believe in god but in a less formal way. Angels, seeing loved ones in heaven, more prayer.
Allow me to formally digress into a disclaimer. I have nothing against religion. It is a useful and powerful tool in the lives of many, including many people whom I love and respect. It's just that I don't believe in god, and I can't imagine ever believing in god, just as strongly as those who do fervently believe in god can't imagine not doing so. It's part of the deep fabric of my being since I went through my own self-directed religious journey in my late teens. It may be arrogance, but I think that I've thought about god a lot more than many people who believe in god.
Anyhoo, I feel like the only one (my husband excepted.) I haven't met/read/heard of a fellow non-theist grieving a child. Of course, they exist...they must. I wish I could find some. We as grieving parents have so many emotions and experiences in common; our real and cyber-relationships are so supportive. But I get lost, feel shut out at times, when the healing turns to god and the relief that people seem to get from that belief and relationship. I just can't go there.
Where is the nearest Pseudo-Buddhist Non-theist American Grieving Parent support group?
**My newly preferred word for my belief system. Atheist is so loaded these days. I'm not anti-god, I just don't believe in one.
Saturday, November 14, 2009
The end of Dr. Smak?
I'll skip to the end. I'm not going to quit blogging. Yet.
This blog is faltering for me. Like my life over the past few years, it has changed into something altogether different than when it started.
Initially, I started blogging after finding I really enjoyed the medical blogs I was reading. There's a camaraderie in medical blogging that was fun. I was new to being a family doctor, and found delight and wonder in my day to day interactions with patients.
Just as my creative juices for medblogging were beginning to dry up, Henry got sick. I really didn't intend for this blog to turn into my group therapy sessions, but somewhere it did. It's hard for me to put into words how valuable this, and you as my readers, have been through the last 2 years. There was such relief in getting my thoughts and feelings out into the keyboard, and such support with each comment left.
This stage seems to be evaporating as well. My emotions are more stable, less intense, and more consistent. Predictability does not make for interesting blogging. For two years I've yearned for predictability; I'm not complaining. But I find my inspiration for blogging has diminished.
So I'm not sure what to do with Dr. Smak. She loves her patients, but finds it less and less often that they surprise her (at least, in good ways that are worth blogging about.) She misses Henry, but there too finds that the poignant moments or memories are more and more rare. She has lots more going on in her life, but does not think much of it of interest to her blog audience.
In short, I'm still blogging. But less.
This blog is faltering for me. Like my life over the past few years, it has changed into something altogether different than when it started.
Initially, I started blogging after finding I really enjoyed the medical blogs I was reading. There's a camaraderie in medical blogging that was fun. I was new to being a family doctor, and found delight and wonder in my day to day interactions with patients.
Just as my creative juices for medblogging were beginning to dry up, Henry got sick. I really didn't intend for this blog to turn into my group therapy sessions, but somewhere it did. It's hard for me to put into words how valuable this, and you as my readers, have been through the last 2 years. There was such relief in getting my thoughts and feelings out into the keyboard, and such support with each comment left.
This stage seems to be evaporating as well. My emotions are more stable, less intense, and more consistent. Predictability does not make for interesting blogging. For two years I've yearned for predictability; I'm not complaining. But I find my inspiration for blogging has diminished.
So I'm not sure what to do with Dr. Smak. She loves her patients, but finds it less and less often that they surprise her (at least, in good ways that are worth blogging about.) She misses Henry, but there too finds that the poignant moments or memories are more and more rare. She has lots more going on in her life, but does not think much of it of interest to her blog audience.
In short, I'm still blogging. But less.
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