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.
Saturday, May 17, 2014
Sam-ism #12
November 2, 2012 (age 5)
On the bathroom wall at the Ronald McDonald House East is a
hand painted tile that says "Bald is Beautiful".
Sam asks, "What's 'bald', Mom?"
Tuesday, May 13, 2014
Chapter Eighteen, More Adventures in Tube Feeding
This was the beginning of one of the worst times we had. I was so hopeful that the tube feeding would work. He was terribly nauseated, gagged and/or vomited a lot, and continued losing weight. I started having to give him shots to boost his white blood cell production. I have given lots of shots and while I didn't like giving him shots, I wasn't reluctant to do it. It was very different to poke my kiddo than it is to poke an adult patient, however.
The fact that I, his safe person, was giving him shots really undermined his trust in the world. He had always had a high pain threshold and was fairly tolerant of irritating or uncomfortable procedures, but me sticking him with needles (along with all of the other stuff he was dealing with) pushed him over the edge into a place where he couldn't tolerate anything.
The fact that I, his safe person, was giving him shots really undermined his trust in the world. He had always had a high pain threshold and was fairly tolerant of irritating or uncomfortable procedures, but me sticking him with needles (along with all of the other stuff he was dealing with) pushed him over the edge into a place where he couldn't tolerate anything.
Monday, May 12, 2014
Dr. Lerner on Coping with Fear, Anxiety, and Shame
“Everyone freaks out. Sometimes the best we can do with fear is befriend it. Expect it and understand that fear will always reappear. Eventually it subsides. It will return. The real culprits are our knee jerk responses to fear and the way we try to avoid feeling fear, anxiety and shame.
Sunday, May 11, 2014
A letter to my son on Mother's Day
Sam,
First I want to say thank you for choosing me. It's hard to explain the significance of that to you right now. My convoluted ideas about souls/energy and choosing the path that creates the person we are supposed to become are a little over your head at age 6 (despite the fact that you are simultaneously going on 3, going on 16, going on 80, going on ageless).
Anyway, thank you. Even though it's been fucking hard (yes, I just swore in a letter addressed to my 6/3/16/80/∞ year old son-- I just don't have a word that adequately replaces that one in this specific context), there is nowhere I would rather be than on the journey that is our lives together.
Friday, May 9, 2014
Chapter Seventeen, Getting Acquainted with the ER
As usual, italics were written at the time. Regular type is commentary I wrote today.
May 4, 2012
3:19pm
29% of the radiation treatments complete! White count coming up a little, though still low (ANC 800, for those interested). Staying up in PDX for the weekend, just to be close to the hospital. Sam's still a beast after sedation, but he's tolerating it better and that makes it easier for the grownups too. Spent Wednesday evening in the ER because he's been having transient, stabby headaches. Bright side: MRI showed that the shunt is working very well. Possibly too well! It will be re-evaluated in about 6 weeks, but is not concerning for now. Headaches suck though. Eating better the last couple of days and his weight is, for now, stabilized. All good news.
Sam is VERY proud of the fact that he was able to hold still for 5 whole minutes while his head MRI was done and wants to tell everyone all about it. "I wore a helmet and they put pillows on the side so my head wouldn't turn like this or like that," *turns head left and right* "I was in the machine and it made LOTS of noises, clanging and clunking, but I had plugs in my ears and I held so still!" Sweet, funny boy.
May 4, 2012
3:19pm
29% of the radiation treatments complete! White count coming up a little, though still low (ANC 800, for those interested). Staying up in PDX for the weekend, just to be close to the hospital. Sam's still a beast after sedation, but he's tolerating it better and that makes it easier for the grownups too. Spent Wednesday evening in the ER because he's been having transient, stabby headaches. Bright side: MRI showed that the shunt is working very well. Possibly too well! It will be re-evaluated in about 6 weeks, but is not concerning for now. Headaches suck though. Eating better the last couple of days and his weight is, for now, stabilized. All good news.
Sam is VERY proud of the fact that he was able to hold still for 5 whole minutes while his head MRI was done and wants to tell everyone all about it. "I wore a helmet and they put pillows on the side so my head wouldn't turn like this or like that," *turns head left and right* "I was in the machine and it made LOTS of noises, clanging and clunking, but I had plugs in my ears and I held so still!" Sweet, funny boy.
Saturday, May 3, 2014
Chapter Sixteen, Drama Bad
As in my other blog posts, italics are old Facebook posts, regular type is what I am adding today.
April 30, 2012
3:37pm
Back up in Portland for the week. Thankfully the Ronald McDonald house is able to (after a bit of run around) accommodate us. They really do provide an amazing service and, to my surprise, there's almost no branded stuff in the house. I figured there'd be golden arches at every turn, but other than the hand sanitizer, we're essentially free of the "big yellow M" (as Sam calls it).
We've already had round two of chemo and bloodwork, we're waiting now for radiation.
Bad, though expected, news of the day: Sam's officially neutropenic. Bad/good news of the day: radiation is late today because I let him eat an hour later than he was supposed to (bad move, mom), the good part: he ate.
Good news of the day: Sam's in great spirits and was a TOTAL ROCK STAR while they accessed his port. He is such a rad little guy. ♥
April 30, 2012
3:37pm
Back up in Portland for the week. Thankfully the Ronald McDonald house is able to (after a bit of run around) accommodate us. They really do provide an amazing service and, to my surprise, there's almost no branded stuff in the house. I figured there'd be golden arches at every turn, but other than the hand sanitizer, we're essentially free of the "big yellow M" (as Sam calls it).
We've already had round two of chemo and bloodwork, we're waiting now for radiation.
Bad, though expected, news of the day: Sam's officially neutropenic. Bad/good news of the day: radiation is late today because I let him eat an hour later than he was supposed to (bad move, mom), the good part: he ate.
Good news of the day: Sam's in great spirits and was a TOTAL ROCK STAR while they accessed his port. He is such a rad little guy. ♥
Friday, May 2, 2014
Sam-ism #11
July 28, 2010 5:17pm (age 2)
Sam just woke up from a long, late nap. After the usual ritual of 'hiding' under the blanket and me 'finding' him by hugging him blanket and all, he said, "I need a snack, Mommy."
"What would you like to eat?" I asked.
He replied, "I need some vegetables."
Sam just woke up from a long, late nap. After the usual ritual of 'hiding' under the blanket and me 'finding' him by hugging him blanket and all, he said, "I need a snack, Mommy."
"What would you like to eat?" I asked.
He replied, "I need some vegetables."
Wednesday, April 30, 2014
Chapter Fifteen, Spider Webs and Vincristine
April 26, 2012
10:19am
Banana slugs are made of awesome.... when you're 4 1/2 years old
Sam was so crabby when I took that picture. The fact that the banana slug was able to distract him from the fit he was throwing speaks volumes for just how cool slugs are. He hadn't been able to eat that morning, he felt bad, he was still uncomfortable, and we were on our way to radiation. All of that combined to make one unhappy kiddo.
10:19am
Banana slugs are made of awesome.... when you're 4 1/2 years old
Sam was so crabby when I took that picture. The fact that the banana slug was able to distract him from the fit he was throwing speaks volumes for just how cool slugs are. He hadn't been able to eat that morning, he felt bad, he was still uncomfortable, and we were on our way to radiation. All of that combined to make one unhappy kiddo.
Sunday, April 27, 2014
Sam-ism #10
October 13, 2009 (age 2)
Sam and I were in the store walking by the aisle of trashy romance novels when suddenly he pointed to a book and shouted, “Mommy!” I looked over all of the provocative cover shots of scantily clad ladies arrayed in a half-swoon.
“Which one is Mommy?” I asked.
Sam and I were in the store walking by the aisle of trashy romance novels when suddenly he pointed to a book and shouted, “Mommy!” I looked over all of the provocative cover shots of scantily clad ladies arrayed in a half-swoon.
“Which one is Mommy?” I asked.
Saturday, April 26, 2014
Chapter Fourteen, Radiation and Percentages
I was thinking of everything as a hurdle to leap over. Each surgery, radiation treatment, round of chemo... each task getting us a step closer to an imaginary finish line. I was holding "the end of treatment" in my mind as a destination. I also had moments of overwhelming awareness that the journey itself was all of life.
Each tiny moment is all of life.
April 23, 2012
4:05pm
Hitting the road, heading back to Portland today for the first round of radiation tomorrow. Wish we were headed to the coast on such a beautiful day. I'm longing for sand between my toes! Bright side: I'm getting to spend a ton of time with my kiddo. :)
Each tiny moment is all of life.
April 23, 2012
4:05pm
Hitting the road, heading back to Portland today for the first round of radiation tomorrow. Wish we were headed to the coast on such a beautiful day. I'm longing for sand between my toes! Bright side: I'm getting to spend a ton of time with my kiddo. :)
Thursday, April 24, 2014
Sam-ism #9
September 17, 2011 1:21pm (age 4)
Me: lying on my stomach on the living room floor.
Sam: climbs on my back, "I'm a cowboy and you're my cow." Snuggles down, hugging my neck, "I love you, cow."
"I love you too, cowboy."
"Now I say, 'Yee haw!'"
"Yee haw!" I say.
"No mommy, cows don't say yee haw. That's what cowboys say. You say,'Moo!'"
Me: lying on my stomach on the living room floor.
Sam: climbs on my back, "I'm a cowboy and you're my cow." Snuggles down, hugging my neck, "I love you, cow."
"I love you too, cowboy."
"Now I say, 'Yee haw!'"
"Yee haw!" I say.
"No mommy, cows don't say yee haw. That's what cowboys say. You say,'Moo!'"
Tuesday, April 22, 2014
Chapter Thirteen, The Time Between (continued)
The day Sam had his radiation simulation (also the day of his lumbar puncture), he got four tattoos. The tiny dots, like blue-black freckles, form a constellation in the shape of a giant 'T' across his belly and down to his groin. The 'T' was the map used for lining up the giant machine that directed the radiation into his brain and spine.
He also had his radiation mask and body mold made. The mask, made of hard plastic mesh, perfectly matched the contours of his face. It was designed to be bolted to the metal table he would lie on for the doses of radiation, keeping his head in the same precise position each time. The body mold was like a rigid foam bed, formed to him and used to hold his limbs and spine in alignment.
The mask was creepy and made me glad he was to be sedated each time.
On April 19 we headed south to spend five days at home. It would be the longest time we'd spend in our house for the next two months.
He also had his radiation mask and body mold made. The mask, made of hard plastic mesh, perfectly matched the contours of his face. It was designed to be bolted to the metal table he would lie on for the doses of radiation, keeping his head in the same precise position each time. The body mold was like a rigid foam bed, formed to him and used to hold his limbs and spine in alignment.
The mask was creepy and made me glad he was to be sedated each time.
On April 19 we headed south to spend five days at home. It would be the longest time we'd spend in our house for the next two months.
Saturday, April 19, 2014
Sam-ism #8
May 27, 2012 (age 4)
Reading a bedtime story about a sick little kid with a hero inside himself who helped him battle pain, illness, and sadness.
The illustrator personified pain as a red, masked guy... a mix between a devil, Boba Fett, and a Mexican wrestler.
I asked Sam if that's what his pain looked like too.
He considered rather seriously for a moment, then said, "It kind of looks like that, but it also kind of looks like bad fish."
Reading a bedtime story about a sick little kid with a hero inside himself who helped him battle pain, illness, and sadness.
The illustrator personified pain as a red, masked guy... a mix between a devil, Boba Fett, and a Mexican wrestler.
I asked Sam if that's what his pain looked like too.
He considered rather seriously for a moment, then said, "It kind of looks like that, but it also kind of looks like bad fish."
Friday, April 18, 2014
Chapter Twelve, The Time Between
The time that came between surgeries and the start of radiation was strange. We were feeling our way through Sam's changed abilities, navigating options, sliding out of the surreal feel of being hospitalized and into the realization that life had been irrevocably altered.
Sam, Grammy, and I packed some stuff and headed back to Portland to have the surgery to place Sam's portacath.
We had gotten into the Ronald McDonald House easily the first time, back on that Friday when Sam had his morning MRI in Springfield and then his first surgery that evening in Portland. I didn't realize what demand there was for RMH services, nor did I realize how hard it would be to get back in sometimes.
April 15, 2012 8:09pm
Sitting in a Portland hotel room (the Ronald McDonald house was full). Sam turns on the TV and, for a minute, the Simpson's are on. He's instantly glued to it. "Whoa, Mom. This is weird."
Sam, Grammy, and I packed some stuff and headed back to Portland to have the surgery to place Sam's portacath.
We had gotten into the Ronald McDonald House easily the first time, back on that Friday when Sam had his morning MRI in Springfield and then his first surgery that evening in Portland. I didn't realize what demand there was for RMH services, nor did I realize how hard it would be to get back in sometimes.
April 15, 2012 8:09pm
Sitting in a Portland hotel room (the Ronald McDonald house was full). Sam turns on the TV and, for a minute, the Simpson's are on. He's instantly glued to it. "Whoa, Mom. This is weird."
Tuesday, April 15, 2014
Monday, April 14, 2014
Bike First!
I ran across this site today and immediately thought of a bunch of kiddos (and grown ups!) who would love this camp.
It's put on by the Northwest Down Syndrome Association. The camp focuses on teaching kiddos with disabilities how to ride bikes, but anyone age 8 and up is welcome-- regardless of ability.
Financial assistance is available.
http://www.nwdsa.org/what_we_do/bike_first.html
It's put on by the Northwest Down Syndrome Association. The camp focuses on teaching kiddos with disabilities how to ride bikes, but anyone age 8 and up is welcome-- regardless of ability.
Financial assistance is available.
http://www.nwdsa.org/what_we_do/bike_first.html
Sunday, April 13, 2014
Chapter Eleven, "The most expensive gas bubble" and "Home again, home again, jiggity jig"
Italics are Facebook posts from two years ago. Intermixed are comments in regular text that I am adding today.
April 11, 2012
10:58am
Watching some TV, drinking some of mom's water, waiting for PT to come play. Possible discharge home today... :)
April 11, 2012 1:58pm
One of us is napping, the other is packing, both of us in preparation for heading home this afternoon. The discharge order is officially in and we'll hopefully leave in time to miss traffic, but you know how long discharge paperwork can take.....
April 11, 2012
10:58am
Watching some TV, drinking some of mom's water, waiting for PT to come play. Possible discharge home today... :)
April 11, 2012 1:58pm
One of us is napping, the other is packing, both of us in preparation for heading home this afternoon. The discharge order is officially in and we'll hopefully leave in time to miss traffic, but you know how long discharge paperwork can take.....
Sam-ism #6
December 11, 2012 (age 5)
Advanced gender concepts with Sam:
Me grumbling about other drivers in the front seat, him listening intently from his car seat.
"But how do you know it was a 'she' driving that car, mom?"
"I guess I don't, really. It looked like a she, but the only real way to know if someone's a she or a he is to ask them."
"Why?"
"Well, because someone could look like a she to me, but actually be a he. Or the other way around."
...thoughtful silence from the back seat, then he says, "Or some people could look like a she *and* a he, but really be neither. Not a he or a she, just a person."
Advanced gender concepts with Sam:
Me grumbling about other drivers in the front seat, him listening intently from his car seat.
"But how do you know it was a 'she' driving that car, mom?"
"I guess I don't, really. It looked like a she, but the only real way to know if someone's a she or a he is to ask them."
"Why?"
"Well, because someone could look like a she to me, but actually be a he. Or the other way around."
...thoughtful silence from the back seat, then he says, "Or some people could look like a she *and* a he, but really be neither. Not a he or a she, just a person."
Saturday, April 12, 2014
Sam-ism #5
July 11, 2012 8:53pm (age 5)
Sam: "Mom! Mom! Look at me! Look at me!"
Me: "I'm looking!"
Sam: (standing on top of an overturned laundry basket, naked from the waist down) "Remember how Sid the Science Kid said he was the King of Cake because he LOVED cake sooooo much?"
Me: (standing on the kitchen floor, fully clothed) "I do remember, buddy."
Sam: "Well I'm the... KING OF SALAD!!!!"
Sam: "Mom! Mom! Look at me! Look at me!"
Me: "I'm looking!"
Sam: (standing on top of an overturned laundry basket, naked from the waist down) "Remember how Sid the Science Kid said he was the King of Cake because he LOVED cake sooooo much?"
Me: (standing on the kitchen floor, fully clothed) "I do remember, buddy."
Sam: "Well I'm the... KING OF SALAD!!!!"
Thursday, April 10, 2014
Chapter 10, Recovery continues, sleep-talking-boy, and shunt internalization.
Two years ago today, Sam had his EVD (the brain drain, aka "the tube") removed and replaced with an internal drain, called a VP shunt.
The reason he needed it was because there was too much pressure in his head still and he needed to have a "pressure release" valve. A "VP shunt" is a ventriculoperitoneal shunt and essentially re-routes any excess fluid that is in the ventricles (or center part of his brain) into his peritoneum (or abdominal cavity). The fluid gets re-routed if the pressure gets too high, his body re-absorbs it, and it's all good.
The reason he needed it was because there was too much pressure in his head still and he needed to have a "pressure release" valve. A "VP shunt" is a ventriculoperitoneal shunt and essentially re-routes any excess fluid that is in the ventricles (or center part of his brain) into his peritoneum (or abdominal cavity). The fluid gets re-routed if the pressure gets too high, his body re-absorbs it, and it's all good.
Wednesday, April 9, 2014
Sam-ism #4
August 20, 2012 3:38pm (age 6)
Science by Sam.
Sam: "You'd have to make the balloons heavier than the weight so they'd fly away."
Me: "You mean lighter than, right?"
Sam: "Oh yeah. The balloon would have to be lighter than... wait. It would have to be strong. You'd have to put A LOT of air in there."
Me: "Or a lot of helium."
Sam: "What's helium?"
Me: "It's the gas they use to fill up balloons that makes them light enough to fly away."
Sam: "Yeah, they'd have to put a lot of helium in there. Or a rock. That would make it really strong."
Science by Sam.
Sam: "You'd have to make the balloons heavier than the weight so they'd fly away."
Me: "You mean lighter than, right?"
Sam: "Oh yeah. The balloon would have to be lighter than... wait. It would have to be strong. You'd have to put A LOT of air in there."
Me: "Or a lot of helium."
Sam: "What's helium?"
Me: "It's the gas they use to fill up balloons that makes them light enough to fly away."
Sam: "Yeah, they'd have to put a lot of helium in there. Or a rock. That would make it really strong."
Tuesday, April 8, 2014
Chapter Nine, The Poop Fairy (continued)
I have decided to give Sam quotes their own posts, because I think they're that wonderful.
Click on "Sam-isms" in the Posts by Topic list right over there ------->>
Today is another day that I will let my Facebook posts from the time stand relatively on their own.
April 7, 2012
So for a more real update than Sam flipping off the camera:
He's amazing. He has been angry and depressed since surgery. His smile has only rarely appeared. My brain knows that the combo of pain, fear, steroids, lack of sleep, and unfamiliar routine/environment can make anybody super cranky, but my fret-o-meter has been working itself into a bit of a tizzy. What if poking his little brain caused a personality shift? And this kid who's yelling at me, "I hate this. Never! I will never poop. Never! No!" is the new Sam?
Click on "Sam-isms" in the Posts by Topic list right over there ------->>
Today is another day that I will let my Facebook posts from the time stand relatively on their own.
April 7, 2012
So for a more real update than Sam flipping off the camera:
He's amazing. He has been angry and depressed since surgery. His smile has only rarely appeared. My brain knows that the combo of pain, fear, steroids, lack of sleep, and unfamiliar routine/environment can make anybody super cranky, but my fret-o-meter has been working itself into a bit of a tizzy. What if poking his little brain caused a personality shift? And this kid who's yelling at me, "I hate this. Never! I will never poop. Never! No!" is the new Sam?
Sam-ism #3
December 30, 2012 5:54pm (age 6)
At the Ronald McDonald House.
Me: "Let's go upstairs and forage for some dinner."
Sam: "Porridge for dinner?"
Me: "Sure, you can have porridge for dinner if you want."
Sam: "No! I don't want porridge. Bears eat porridge!”
At the Ronald McDonald House.
Me: "Let's go upstairs and forage for some dinner."
Sam: "Porridge for dinner?"
Me: "Sure, you can have porridge for dinner if you want."
Sam: "No! I don't want porridge. Bears eat porridge!”
Monday, April 7, 2014
Food issues
One of the (several) super scary times that I had when Sam was ill was the time period when he was unable to eat. I haven't yet gotten to that part of the story in my "Chapter" posts, but it was awful. He was practically skeletal and was literally falling down because he was starving. We worked it out (thanks to the magic of IV nutrition and appetite stimulants), but food remained a struggle. Many of the old favorites became rejects and many of the "new faves" were horribly unhealthy. I said, many times, that I thought I might need to get him a salt lick.
This article talks about food, how it tastes during chemo, why it tastes that way, and what to do to make food more interesting.
another link:
http://www.npr.org/2014/04/07/295800503/chemo-can-make-food-taste-like-metal-heres-help?utm_medium=facebook&utm_source=npr&utm_campaign=nprnews&utm_content=04072014
This article talks about food, how it tastes during chemo, why it tastes that way, and what to do to make food more interesting.
another link:
http://www.npr.org/2014/04/07/295800503/chemo-can-make-food-taste-like-metal-heres-help?utm_medium=facebook&utm_source=npr&utm_campaign=nprnews&utm_content=04072014
Sunday, April 6, 2014
Chapter Eight, Introducing The Poop Fairy
Driving home after an oil change to finish packing so we could hit the road earlier today:
"So, when we get home, I'm going to get crackin' and get the car all packed and you're going to eat some food and take a nap."
"What does get crackin' mean, Mom?"
"Oh, it means get to work quickly and work hard."
"Oh, in that case, before I eat food and take a nap I need to crack out on going to the bathroom first.”
--- Sam and me, November 27, 2012 8:37pm
There's a funny skill that many of us who are healthcare providers have. We learn to balance our empathy with our need to protect our hearts and spirits from being broken by the tragedy we witness. The people who don't learn how to maintain that balance go one of two directions-- they either get hard and lose their empathy or they get emotionally exhausted and fragile. Some might argue that those directions are actually one and the same....
"So, when we get home, I'm going to get crackin' and get the car all packed and you're going to eat some food and take a nap."
"What does get crackin' mean, Mom?"
"Oh, it means get to work quickly and work hard."
"Oh, in that case, before I eat food and take a nap I need to crack out on going to the bathroom first.”
--- Sam and me, November 27, 2012 8:37pm
There's a funny skill that many of us who are healthcare providers have. We learn to balance our empathy with our need to protect our hearts and spirits from being broken by the tragedy we witness. The people who don't learn how to maintain that balance go one of two directions-- they either get hard and lose their empathy or they get emotionally exhausted and fragile. Some might argue that those directions are actually one and the same....
Sam-ism #2
December 16, 2012 3:00pm (age 5)
Talking to Sam about going out to a fancy restaurant:
"We could dress up and go out for dinner sometime."
"Dress up? I could wear a suit!"
"A suit? You don't have a suit, but we could get one for you."
"I do too have a suit, mom!"
"You do?"
"Yeah, my Captain America suit."
Talking to Sam about going out to a fancy restaurant:
"We could dress up and go out for dinner sometime."
"Dress up? I could wear a suit!"
"A suit? You don't have a suit, but we could get one for you."
"I do too have a suit, mom!"
"You do?"
"Yeah, my Captain America suit."
Sam-ism #1
4:39pm December 9, 2009 (age 2)
Sam: "It's in my tummy."
Me: "The fruit bar is in your tummy?"
Sam: "Yes, fig bar."
Me: "Actually it wasn't a fig bar, it was a strawberry bar."
Sam: "In my mouth and in my tummy, it was fig."
Sam: "It's in my tummy."
Me: "The fruit bar is in your tummy?"
Sam: "Yes, fig bar."
Me: "Actually it wasn't a fig bar, it was a strawberry bar."
Sam: "In my mouth and in my tummy, it was fig."
The themes of "over parenting", "helicopter parenting", and how different parenting is now (as compared to when I was a kid) have come up in multiple conversations of late. I remember being gone for HOURS at a time starting when I was pretty little. Playing in empty lots, running around with the neighbor kids, going to the park, walking up the dry creek bed and hoping there wasn't a flash flood in the mountains that blasted down and washed us away before we knew what had happened (because that happened sometimes and we all had stories about hearing the loud rush of water as it tumbled boulders downstream), catching weird worm-like creatures and pollywogs in the pools left behind after a rain, I bet our parents knew where we were considerably less than half the time.
Saturday, April 5, 2014
Chapter Seven, Diagnosis Day
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.”
---Sam and me, September 3, 2012
April 5, 2012
Diagnosis day.
I had already been told that chances were quite high that Sam had cancer. In fact, the oncology team had come by and introduced themselves before Sam even had his craniotomy. I remember Dr. N, the neuro-oncologist, in the PICU hallway saying, "We wanted to meet you, just in case. But honestly, we're hoping you never have to see us again."
We had to see them again.
Friday, April 4, 2014
Chapter Six, Post Op
Opening day 16 on the advent calendar.
"What do you think is going to be in there, Sam?"
He ponders. "Hmmm.... I think maybe a little shark."
-- December 16, 2011 7:31pm
April 4, 2012
I am going to let my Facebook posts stand mostly alone for this day. We still didn't have a diagnosis-- that would come the next day. Sam was doing well and, even though the day was hard, the weight of my fear felt like it had lightened the tiniest bit. From my bed in the window nook in our new room on the 10th floor, I could watch the helicopters come and go from the rooftop landing pads. It was good to lie there in the night, when the quiet and relative stillness made everything feel scarier than it seemed in the day, and watch those metal pods whirl in and out. Each one holding a human experiencing a pivotal life event. Each one connected by a million invisible strings to the lives and hearts of countless others. It made our trials seem smaller, less personal. At the times when it was hardest to bear what Sam was going through and my inability to protect him from all harm, it helped me to hear the rotors beating and know that we weren't alone in experiencing difficulty and we weren't the worst off.
Then, as now, anything that offered perspective was good.
"What do you think is going to be in there, Sam?"
He ponders. "Hmmm.... I think maybe a little shark."
-- December 16, 2011 7:31pm
April 4, 2012
I am going to let my Facebook posts stand mostly alone for this day. We still didn't have a diagnosis-- that would come the next day. Sam was doing well and, even though the day was hard, the weight of my fear felt like it had lightened the tiniest bit. From my bed in the window nook in our new room on the 10th floor, I could watch the helicopters come and go from the rooftop landing pads. It was good to lie there in the night, when the quiet and relative stillness made everything feel scarier than it seemed in the day, and watch those metal pods whirl in and out. Each one holding a human experiencing a pivotal life event. Each one connected by a million invisible strings to the lives and hearts of countless others. It made our trials seem smaller, less personal. At the times when it was hardest to bear what Sam was going through and my inability to protect him from all harm, it helped me to hear the rotors beating and know that we weren't alone in experiencing difficulty and we weren't the worst off.
Then, as now, anything that offered perspective was good.
Thursday, April 3, 2014
Chapter Five, The Surgery Party
Me: Day 22: today I am thankful for music. Singing with my kiddo is the best thing ever.
Janey: what songs does he like to sing with you?
Me: Moonshadow is his current favorite. He belts the bridge like a crazy person. It's hilarious! He also chooses Swing Low Sweet Chariot a lot. He always has a bunch of questions when we sing that one.
"Mom, what are vainjels?"
"What?"
"You know, (sings dramatically) 'a band uh vaaaaain-jels come in for me'. And why are they coming in for you?"
-- Facebook post and comments from November 22, 2011
April 3, 2012
I don't specifically remember how we spent the morning. I have flashes of memories, but most of them center around trying to not appear stressed out in front of Sam. I do remember going along with the story that a bunch of people were going to come get him and take him to a "surgery party". He got some premedication and was having a great time as we all paraded down the hall on the way to OR.
I remember kissing him in the hallway, smiling until my face felt like it was going to split, and telling him that I couldn't wait to hear all about his party. I don't think I cried until he was gone.
I remember how badly it hurt to watch them wheel his bed away.
Dr. S had told us the surgery would take "five to fifteen hours" depending on what they found when they got in there. We all hunkered down to wait.
Jordan, his family, and some friends waited in the waiting room.
Papi went back to the Ronald McDonald House; knowing him he spent the day cleaning or finding repair projects to volunteer for.
Grammy (my mom) and I spent most of the day in Sam's PICU room. There were two rocking chairs set up side by side in the void left by his missing bed. The monitor screen was off. The IV pump was off. The TV was off. We sat and, as we rocked, she knitted the arm of a sweater. She took apart and reknitted that same sweater arm a bunch of times during the months that followed. I held my cell phone, waiting for the calls that would come from the OR to update us on how things were going.
Janey: what songs does he like to sing with you?
Me: Moonshadow is his current favorite. He belts the bridge like a crazy person. It's hilarious! He also chooses Swing Low Sweet Chariot a lot. He always has a bunch of questions when we sing that one.
"Mom, what are vainjels?"
"What?"
"You know, (sings dramatically) 'a band uh vaaaaain-jels come in for me'. And why are they coming in for you?"
-- Facebook post and comments from November 22, 2011
April 3, 2012
I don't specifically remember how we spent the morning. I have flashes of memories, but most of them center around trying to not appear stressed out in front of Sam. I do remember going along with the story that a bunch of people were going to come get him and take him to a "surgery party". He got some premedication and was having a great time as we all paraded down the hall on the way to OR.
I remember kissing him in the hallway, smiling until my face felt like it was going to split, and telling him that I couldn't wait to hear all about his party. I don't think I cried until he was gone.
I remember how badly it hurt to watch them wheel his bed away.
Dr. S had told us the surgery would take "five to fifteen hours" depending on what they found when they got in there. We all hunkered down to wait.
Jordan, his family, and some friends waited in the waiting room.
Papi went back to the Ronald McDonald House; knowing him he spent the day cleaning or finding repair projects to volunteer for.
Grammy (my mom) and I spent most of the day in Sam's PICU room. There were two rocking chairs set up side by side in the void left by his missing bed. The monitor screen was off. The IV pump was off. The TV was off. We sat and, as we rocked, she knitted the arm of a sweater. She took apart and reknitted that same sweater arm a bunch of times during the months that followed. I held my cell phone, waiting for the calls that would come from the OR to update us on how things were going.
Wednesday, April 2, 2014
Chapter Four, Do Not Unplug the Coffee Maker
"Princesses can't fly, right Mom?”
--Sam, December 12, 2011 8:45am
April 2, 2012
It's funny, looking back, to realize how few days we actually spent in the PICU. At the time, it felt like a year. Or longer. There weren't windows to look out of in the unit and day/night routines were interrupted by the constant monitor alarms, assessments, meds, and vital sign checks. Time passed in a weird way. It felt like pushing fire through cold molasses, odd bursts of melting speed mixed with the slowest slow imaginable. There were crystalized moments of brilliant, painful awareness too, hanging bright like frozen dew on a spider's web.
There was a baby (or young toddler perhaps, I was just judging age by sound) in the room next to us who spent quite a while screaming. Sam got worried, as he often does when other people are distressed, and asked me to put on the call light so he could tell the nurse to "stop giving that baby colace". Colace is a stool softener and was, at the time, the worst tasting medicine Sam could imagine. To his four year old mind, there was nothing worse they could have been doing to that kiddo than administering colace. I wish that, months later, when it was Sam's turn to be screaming in the PICU, colace was still the worst thing imaginable... but that's a story for another day.
--Sam, December 12, 2011 8:45am
April 2, 2012
It's funny, looking back, to realize how few days we actually spent in the PICU. At the time, it felt like a year. Or longer. There weren't windows to look out of in the unit and day/night routines were interrupted by the constant monitor alarms, assessments, meds, and vital sign checks. Time passed in a weird way. It felt like pushing fire through cold molasses, odd bursts of melting speed mixed with the slowest slow imaginable. There were crystalized moments of brilliant, painful awareness too, hanging bright like frozen dew on a spider's web.
There was a baby (or young toddler perhaps, I was just judging age by sound) in the room next to us who spent quite a while screaming. Sam got worried, as he often does when other people are distressed, and asked me to put on the call light so he could tell the nurse to "stop giving that baby colace". Colace is a stool softener and was, at the time, the worst tasting medicine Sam could imagine. To his four year old mind, there was nothing worse they could have been doing to that kiddo than administering colace. I wish that, months later, when it was Sam's turn to be screaming in the PICU, colace was still the worst thing imaginable... but that's a story for another day.
Tuesday, April 1, 2014
Chapter Three, Wagon Ride
"I'm gonna grow way, way up and then I'm gonna be THE MAN." --Sam July 14, 2010 3:21pm, after being measured against his growth chart. My thought at the time-- "I am not sure if I should be excited or terrified."
April 1, 2012
The picture from this day became the picture that represented Sam a lot during the course of his treatment. I love the funny little smile he has on his face. You can see it below. That picture got used for multiple fundraisers and was posted on about a bajillion people's Facebook walls along with good wishes, prayers, and healing thoughts. We were so fortunate in all of the love and support we received.
April 1, 2012
The picture from this day became the picture that represented Sam a lot during the course of his treatment. I love the funny little smile he has on his face. You can see it below. That picture got used for multiple fundraisers and was posted on about a bajillion people's Facebook walls along with good wishes, prayers, and healing thoughts. We were so fortunate in all of the love and support we received.
Monday, March 31, 2014
Chapter Two, Markers
Chapter Two
The room is dark. We are alone for the first time all day. He's been napping off and on.
He says groggily from the depths of the blankets, "Mom, my feet feel funny."
"Are they asleep?"
"No, they are like the rest of me."
"Half asleep?"
"No. Half awake."
--Sam and me, March 31, 2012 7:31pm
Saturday March 31st, 2012 was our first whole day in the hospital.
I posted this photo and caption on Facebook:
The room is dark. We are alone for the first time all day. He's been napping off and on.
He says groggily from the depths of the blankets, "Mom, my feet feel funny."
"Are they asleep?"
"No, they are like the rest of me."
"Half asleep?"
"No. Half awake."
--Sam and me, March 31, 2012 7:31pm
Saturday March 31st, 2012 was our first whole day in the hospital.
I posted this photo and caption on Facebook:
This kid is seriously amazing. I could not feel more blessed to be his mother than I do today. I HATE what we're doing, I HATE what he's going through, but I could not love, cherish, or admire him more.
Sunday, March 30, 2014
Chapter One, The beginning
February 23, 2012 8:31pm (Facebook post)
"I can see things in my imagination. Want to watch me?"
"Sure Sam."
"Ok, watch."
*sits totally still for about 10 seconds, staring into space*
"Did you see me imagining, Mom?"
Chapter one
March 30, 2014
Two years ago today my only child, Sam, was diagnosed with a brain tumor. He’d been having issues with his vision, headaches, unexplained vomiting… he was clearly ill and getting worse. We had gone to see Dr. Debbie, Sam’s pediatrician, on a Wednesday and she had ordered an MRI. Early Friday morning, before showers or breakfast, we went to my hospital (where I work as a nurse), so that he could be sedated to have his images taken. A couple of my coworkers had agreed to do his imaging and manage his sedation. This was a big favor to ask, especially of the anesthesiologist, as we didn’t routinely take pediatric cases at the time… but I wanted people I knew and trusted taking care of my boy.
"I can see things in my imagination. Want to watch me?"
"Sure Sam."
"Ok, watch."
*sits totally still for about 10 seconds, staring into space*
"Did you see me imagining, Mom?"
Chapter one
March 30, 2014
Two years ago today my only child, Sam, was diagnosed with a brain tumor. He’d been having issues with his vision, headaches, unexplained vomiting… he was clearly ill and getting worse. We had gone to see Dr. Debbie, Sam’s pediatrician, on a Wednesday and she had ordered an MRI. Early Friday morning, before showers or breakfast, we went to my hospital (where I work as a nurse), so that he could be sedated to have his images taken. A couple of my coworkers had agreed to do his imaging and manage his sedation. This was a big favor to ask, especially of the anesthesiologist, as we didn’t routinely take pediatric cases at the time… but I wanted people I knew and trusted taking care of my boy.
Saturday, March 29, 2014
Prologue
I wrote this on March 29, 2012.
I had no idea how incredible (in great and terrible ways) the journey we were beginning would be....
Alrighty then. People have been bugging me to start a blog (or something) about all of the stuff my kid says. I didn't plan on starting it today. Honestly, I didn't plan on starting it at all. Posting funny kid stuff on Facebook has been plenty to keep up with for me, but circumstances are changing and I decided that stay focused and slightly less than crazy, I needed to write something.
So here I am writing about my child, myself, and our life together. His name is Sam. He's four years old. Or, as he says it, "Half way between four and five". I am a single mom, nearly forty, and a nurse. He's always been precocious. No rocket scientist at two years old or Mozart or anything, but certainly precocious. He's a funny, sweet, overwhelmingly energetic information sponge. He REMEMBERS things. It kinda creeps me out sometimes. He NOTICES things. Details, connections, nuances of meaning, and the emotions of others.
He started getting sick about 2 months ago. Cold symptoms. Headache. Vomiting. All intermittent. We went to see the wonderful nurse practitioner at Sam's pediatrician's office. She and I together decided it was a virus with headaches made worse by his (possibly) crappy vision. So, I put an eye exam on the "let's make it happen soon" list. In retrospect, I should have put it on the "let's make it happen now" list. There's a pun on hindsight being 20/20 and eye exams waiting to be made here, but I don't have the wherewithal to make it happen.
The last week has been really hard. The illness, whatever it is, has been visiting daily. Without the cold symptoms this time. Headaches and vomiting. I cannot tell you how hard it is to watch my little guy get all squinty with pain, lie his head down, and say, "I just want to go to bed, Mommy." A four year old who WANTS to go to bed??? Back to the doctor we went. We're scheduled for an MRI of his brain tomorrow morning.
I had no idea how incredible (in great and terrible ways) the journey we were beginning would be....
Alrighty then. People have been bugging me to start a blog (or something) about all of the stuff my kid says. I didn't plan on starting it today. Honestly, I didn't plan on starting it at all. Posting funny kid stuff on Facebook has been plenty to keep up with for me, but circumstances are changing and I decided that stay focused and slightly less than crazy, I needed to write something.
So here I am writing about my child, myself, and our life together. His name is Sam. He's four years old. Or, as he says it, "Half way between four and five". I am a single mom, nearly forty, and a nurse. He's always been precocious. No rocket scientist at two years old or Mozart or anything, but certainly precocious. He's a funny, sweet, overwhelmingly energetic information sponge. He REMEMBERS things. It kinda creeps me out sometimes. He NOTICES things. Details, connections, nuances of meaning, and the emotions of others.
He started getting sick about 2 months ago. Cold symptoms. Headache. Vomiting. All intermittent. We went to see the wonderful nurse practitioner at Sam's pediatrician's office. She and I together decided it was a virus with headaches made worse by his (possibly) crappy vision. So, I put an eye exam on the "let's make it happen soon" list. In retrospect, I should have put it on the "let's make it happen now" list. There's a pun on hindsight being 20/20 and eye exams waiting to be made here, but I don't have the wherewithal to make it happen.
The last week has been really hard. The illness, whatever it is, has been visiting daily. Without the cold symptoms this time. Headaches and vomiting. I cannot tell you how hard it is to watch my little guy get all squinty with pain, lie his head down, and say, "I just want to go to bed, Mommy." A four year old who WANTS to go to bed??? Back to the doctor we went. We're scheduled for an MRI of his brain tomorrow morning.
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