As in other posts, the parts in italics were written at the time. The parts written in regular type were added today.
It's been a while since I've written here. I had to take a little time off. Partly to examine my motives in writing this and partly because life has gotten busy. I think I am ready to tell the next part of our story now though.
Here goes.
Tuesday, July 29, 2014
Saturday, June 14, 2014
Sam-ism #14
September 3, 2012 (age 5)
At 31 flavors.
"Ma, they have clown cones. Does that mean there are clowns here?"
"No, buddy."
"Oh. Well next time we come I want a clown cone, but with none of that clown stuff on it.”
At 31 flavors.
"Ma, they have clown cones. Does that mean there are clowns here?"
"No, buddy."
"Oh. Well next time we come I want a clown cone, but with none of that clown stuff on it.”
Sunday, June 8, 2014
Sam-ism #13
June 16, 2012 (Age 4)
From the back seat this evening: "Mom, I think we
should have hot dogs for dinner. The hot dog buns, ketchup, mustard, and the
round things that go inside."
"What are the round things that go inside, Sam?"
"You know, the round things." *makes a long
cylindrical gesture using both hands* "The dogs. That get hot."
Saturday, June 7, 2014
Medical Professionals and Emotional Connection
As a person who has both cared for acutely, critically, and/or chronically ill people and walked through acute, critical, and now chronic illness with my child, I have thought often about the different types of emotional connections that are formed in healthcare situations.
I am, of course, human first. As a human I am connected-- and deeply so, when I allow myself to look at it-- to every other person.
As a mother, or any of the other roles I have in the lives of people I know personally-- family, friend, acquaintance, I have another layer of connection. Each of those role defines not just my responsibility to the other persons involved in each relationship, but also my level of emotional investment.
I am a professional care giver. By choosing to be a nurse, by choosing to do the kind of nursing I have done, I have entered into an agreement with each person for which I provide care. I have agreed to feel deeply compassionate, to feel and display my human connection to each other individual while they are navigating a pivotal life experience, all without becoming so personally or emotionally involved that it obscures or overrides clinical thinking.
The relationship between healthcare professionals deserves a post all its own-- a bizarre, dark, loving, analytical, trial-by-fire, got-each-other's-back-whether-or-not-we-like-each-other, deep respect, personal attachment, professional distance, wade-into-the-fray, soft, hard, everything's-okay-even-when-it's-not, heavy duty kind of post. Maybe another day we'll go deeper into that.
Experiencing healthcare from both sides has been an interesting experience. In this case, 'interesting' has meant everything from 'devastating' to 'hilarious', with a hefty dose of 'informative' at every turn.
I talked in Chapter 8 about an imaginary membrane that separates healthcare providers from their patients. A membrane that allows genuine compassion to pass through, but shelters the caregiver from caring too much, from becoming too connected, from indulging so deeply in their own emotions that it becomes about themselves rather than about the patient, from having their judgement clouded, or from being broken by the weight of witnessed tragedy.
There is no membrane that works perfectly. There is always a patient, a family member, a situation that hits so close to home or is so tragic on a human level that it personally affects a caregiver. When the membrane has toughened to the point that nothing that affects the caregiver personally anymore, it has also toughened to the point that genuine compassion is no longer passing through. It's a delicate balance, one that requires maintenance and can easily tip in the direction of broken or, worse, the direction of calloused. Either way, when that tip happens, it's time for a break, a reassessment, perhaps a new career.
This article, "The Narrow Path" by David P. Steensma (warning-- it's a rough, sad read) is an accounting of one doctor's experience with tragedy that profoundly affected him, his reactions (both internal and external) to it, and the problems with confronting and discussing personal feelings in a profession where one is supposed to maintain a semblance of professional disconnection.
I can't help, when reading it, to put myself, my coworkers, and, most especially, the medical professionals who have cared for Sam, into that situation. I also can't help seeing myself lying in that bed, being the woman/mother/patient left without a decision to make.
I'd love to hear your thoughts about this topic. Comment below if you wish.
Thanks,
Jen
I am, of course, human first. As a human I am connected-- and deeply so, when I allow myself to look at it-- to every other person.
As a mother, or any of the other roles I have in the lives of people I know personally-- family, friend, acquaintance, I have another layer of connection. Each of those role defines not just my responsibility to the other persons involved in each relationship, but also my level of emotional investment.
I am a professional care giver. By choosing to be a nurse, by choosing to do the kind of nursing I have done, I have entered into an agreement with each person for which I provide care. I have agreed to feel deeply compassionate, to feel and display my human connection to each other individual while they are navigating a pivotal life experience, all without becoming so personally or emotionally involved that it obscures or overrides clinical thinking.
The relationship between healthcare professionals deserves a post all its own-- a bizarre, dark, loving, analytical, trial-by-fire, got-each-other's-back-whether-or-not-we-like-each-other, deep respect, personal attachment, professional distance, wade-into-the-fray, soft, hard, everything's-okay-even-when-it's-not, heavy duty kind of post. Maybe another day we'll go deeper into that.
Experiencing healthcare from both sides has been an interesting experience. In this case, 'interesting' has meant everything from 'devastating' to 'hilarious', with a hefty dose of 'informative' at every turn.
I talked in Chapter 8 about an imaginary membrane that separates healthcare providers from their patients. A membrane that allows genuine compassion to pass through, but shelters the caregiver from caring too much, from becoming too connected, from indulging so deeply in their own emotions that it becomes about themselves rather than about the patient, from having their judgement clouded, or from being broken by the weight of witnessed tragedy.
There is no membrane that works perfectly. There is always a patient, a family member, a situation that hits so close to home or is so tragic on a human level that it personally affects a caregiver. When the membrane has toughened to the point that nothing that affects the caregiver personally anymore, it has also toughened to the point that genuine compassion is no longer passing through. It's a delicate balance, one that requires maintenance and can easily tip in the direction of broken or, worse, the direction of calloused. Either way, when that tip happens, it's time for a break, a reassessment, perhaps a new career.
This article, "The Narrow Path" by David P. Steensma (warning-- it's a rough, sad read) is an accounting of one doctor's experience with tragedy that profoundly affected him, his reactions (both internal and external) to it, and the problems with confronting and discussing personal feelings in a profession where one is supposed to maintain a semblance of professional disconnection.
I can't help, when reading it, to put myself, my coworkers, and, most especially, the medical professionals who have cared for Sam, into that situation. I also can't help seeing myself lying in that bed, being the woman/mother/patient left without a decision to make.
I'd love to hear your thoughts about this topic. Comment below if you wish.
Thanks,
Jen
Friday, June 6, 2014
Chapter Nineteen, Mama Bear
As in other posts, the parts in italics were written at the time. The parts written in regular type were added today.
In May of 2012 we were in the middle of radiation. Grammy, Papi, Sam, and I were all staying in Room 201 at the old Ronald McDonald House West. There was a queen sized bed that Sam and I shared, Grammy slept on a roll-away sandwiched between the edge of our bed and the wall, and Papi used a twin sized air mattress on the floor at the foot of our bed. The wagon we borrowed from the hospital and used daily to transport Sam to radiation was pulled into our room at night too so that it didn't wander away in the night. It was a tight space, made smaller by the fact that the windows were stuck shut and the "all terrain" wagon tires off-gassed terribly and sometimes the whole room smelled like black rubber. We got up multiple times a night. We carried green plastic barf-bags everywhere we went. We got up early each weekday and hauled a fairly miserable kid up the street, into the "top of the hill" 10th floor of the children's hospital, down the elevator to the 9th floor, down the hall and across the little skybridge to the adult part of the hospital, past the smells of 2 different coffee shops that made me want coffee and made Sam gag and retch, past the gift shop, past the main lobby, past surgery waiting, past a painting of red flowers, past the gondola cars going up and down, past the 2 pieces of etched metal art, past the painting of the ladies in hats having tea with their donkey, and down another elevator to the 4th floor lobby of the radiation department. Small dark patches and some fine blonde peach fuzz were all that remained of Sam's hair. The rest of his hair was spread out over the beds and floor of room 201 and no matter how much we washed the sheets or vacuumed, the fine, brittle bits of shed hair still found their way into our mouths and eyes. Sam was failing his trials on tube feeding. We tried a lot of things to get nutrition into him. Each new thing seemed like it was working, but then became unbearable after a day or two. Sam was losing weight and strength. It sucked.
BUT... it was also an amazing time.
In May of 2012 we were in the middle of radiation. Grammy, Papi, Sam, and I were all staying in Room 201 at the old Ronald McDonald House West. There was a queen sized bed that Sam and I shared, Grammy slept on a roll-away sandwiched between the edge of our bed and the wall, and Papi used a twin sized air mattress on the floor at the foot of our bed. The wagon we borrowed from the hospital and used daily to transport Sam to radiation was pulled into our room at night too so that it didn't wander away in the night. It was a tight space, made smaller by the fact that the windows were stuck shut and the "all terrain" wagon tires off-gassed terribly and sometimes the whole room smelled like black rubber. We got up multiple times a night. We carried green plastic barf-bags everywhere we went. We got up early each weekday and hauled a fairly miserable kid up the street, into the "top of the hill" 10th floor of the children's hospital, down the elevator to the 9th floor, down the hall and across the little skybridge to the adult part of the hospital, past the smells of 2 different coffee shops that made me want coffee and made Sam gag and retch, past the gift shop, past the main lobby, past surgery waiting, past a painting of red flowers, past the gondola cars going up and down, past the 2 pieces of etched metal art, past the painting of the ladies in hats having tea with their donkey, and down another elevator to the 4th floor lobby of the radiation department. Small dark patches and some fine blonde peach fuzz were all that remained of Sam's hair. The rest of his hair was spread out over the beds and floor of room 201 and no matter how much we washed the sheets or vacuumed, the fine, brittle bits of shed hair still found their way into our mouths and eyes. Sam was failing his trials on tube feeding. We tried a lot of things to get nutrition into him. Each new thing seemed like it was working, but then became unbearable after a day or two. Sam was losing weight and strength. It sucked.
BUT... it was also an amazing time.
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