The headline read:
Bloods Gang Member Found With 100 Bags Of Heroin Hidden In His Anus (Which Appears To Be A New Record)
Ok, the headline is from The Smoking Gun version of the story. But here's a link to a site that some might argue is more reputable: link to anus story
I have no words. I'm flummoxed.
Friday, February 22, 2013
Friday, February 15, 2013
All IBD, All the Time
Loyal blog non-readers: I know it's been a long, long time since I've posted. And I also know that I'm the only one who will read this, but I looked back at the blog recently, and there's some good stuff here. If I do say so myself (which I do).
So today I was sitting here, minding my own business (who else's business would I be minding), and I received an IBD email. I'm on the email list for the Digestive Health SmartBrief, and I generally scroll through the topics to see if there's a link that tickles my fancy. I was also in the middle of an email exchange with the father of a recent no colon recipient (hence "all IBD, all the time").
Here's where it got interesting. Here's the title of the email link: Red flags for patients after colon surgery.
Having been someone whose had colon (well, actually, no colon) surgery, I found this interesting. So I clicked.
Apparently, discharge instructions for patients who undergo colon surgery are very poor, so researchers from Baylor College of Medicine, the Houston Veteran's Affairs and Health Services Research Center, and Rice University have produced a consensus suggesting which post-surgical events should provoke patients to either call their doctors, or urgently call 911. Here are the conclusions of this joint effort:
Patients should call their physician if they experience:
"Honey, my wound opened and there's blood and pus everywhere. You think I ought to call the doctor?"
"Hmmm. That's interesting. My abdomen looks like I swallowed a basketball. Wonder if I should call somebody."
I'm sorry. I know that some people are afraid to "bother" their doctor. Don't be. Taking out part/all of your colon is a serious procedure and should only be performed by a trained physician. It should not be done at home.
So today I was sitting here, minding my own business (who else's business would I be minding), and I received an IBD email. I'm on the email list for the Digestive Health SmartBrief, and I generally scroll through the topics to see if there's a link that tickles my fancy. I was also in the middle of an email exchange with the father of a recent no colon recipient (hence "all IBD, all the time").
Here's where it got interesting. Here's the title of the email link: Red flags for patients after colon surgery.
Having been someone whose had colon (well, actually, no colon) surgery, I found this interesting. So I clicked.
Apparently, discharge instructions for patients who undergo colon surgery are very poor, so researchers from Baylor College of Medicine, the Houston Veteran's Affairs and Health Services Research Center, and Rice University have produced a consensus suggesting which post-surgical events should provoke patients to either call their doctors, or urgently call 911. Here are the conclusions of this joint effort:
Patients should call their physician if they experience:
- Wound drainage
- Wound opening
- Wound redness or changes in the appearance of the surrounding skin or around the ostomy
- No bowel movement or lack of gas/stool from the rectum for more than 24 hours
- Increased abdominal pain
- Vomiting
- Abdominal swelling
- High ostomy output and or dark urine or no urine
- Fever greater than 101.5
- Patient is not able to take anything by mouth for more than 24 hours.
- Have shortness of breath or are unable to breathe
- Have chest pain
"Honey, my wound opened and there's blood and pus everywhere. You think I ought to call the doctor?"
"Hmmm. That's interesting. My abdomen looks like I swallowed a basketball. Wonder if I should call somebody."
I'm sorry. I know that some people are afraid to "bother" their doctor. Don't be. Taking out part/all of your colon is a serious procedure and should only be performed by a trained physician. It should not be done at home.
Do NOT let anything concerning fester and bother you. Call the doctor hospital.
Wednesday, June 27, 2012
Long Time Coming
Inspiration can come in many forms, from many different places.
This is not a “safe” post; I’m tackling something near and dear to the hearts of those of us with no colons. But, it’s a bit of an embarrassing topic.
Incontinence.
I have two words for you: shit happens.
I had a little touch o’ the incontinence last night. That’s all I ever have any more. A touch. Those of us with no colons affectionately refer to it as “leakage.”
I have never had a huge incontinence problem, and I’ve never had any issues during the day. Sometimes, I have nighttime issues, but I can go months (I think that I’ve even gone years) between bouts. Even a “bout” is nothing that makes its way out of my jammies or boxers.
But I recently changed up my diet a little bit, and I’ve noticed some lack of consistency in my feces. Now, we’ve talked about this before. There are at least two meanings for “consistency.” The first is “the condition of cohering or holding together and retaining form” and the second is “the achievement of a level of performance that does not vary greatly in quality over time.” Both meanings apply here. The “consistency” of my poop has varied greatly over the last few weeks from straight liquid to semi-formed (and, folks, with no colon, “semi-formed” is as good as it gets). The “consistency” has also varied greatly in that I’ll poop liquid at 6:30 a.m., semi-formed at 8:00 a.m., liquid again after lunch, semi-formed—well, you get the picture.
I’ve never woken up in a pool of crap. (Though I take great offense when someone is critical of a professional athlete’s performance and describes the athlete as having “shit the bed.”) There was the Indian food incident of 1997, when I still had my mid-surgery colostomy bag, which will be the subject of a future post. That was a disgusting night. Poor Sela.
I did ask my surgeon if incontinence was something that would worsen over time, particularly as I get old and decrepit. I asked whether I should expect to be in adult diapers at some point. The answer is no. I should be able to maintain continence as if I had a colon. And that’s good news.
Here’s one of my annoyances with incontinence and leaking, though. It irritates the crap out of the skin on my bum. That stuff sitting there, while I sleep, just makes the skin burn. When I go and then wipe, I feel like my butt’s on fire (great image!). There are a bunch of products out there to help out with this. I’m sure all of you are aware of one or more. My product of choice is Calmoseptine (WARNING: TAKE A GANDER AT SITE DISCLAIMER NO. 2 TO YOUR RIGHT).
And, burning butt is a no colon affliction independent from incontinence. You go to the bathroom a lot, you wipe a lot, your butt will burn. So Jedediah and I go through our fair share of Calmoseptine. I like to have it nearby at all times. I have some in my desk drawer at work. I’ve considered carrying it in my briefcase (afraid the tube will open and spill) and in my car (not sure about the temperature variations and their effect on the efficacy of the ointment). I usually buy 6 or 12 tubes at a time (I go through a tube about every two months).
This is not a “safe” post; I’m tackling something near and dear to the hearts of those of us with no colons. But, it’s a bit of an embarrassing topic.
Incontinence.
I have two words for you: shit happens.
I had a little touch o’ the incontinence last night. That’s all I ever have any more. A touch. Those of us with no colons affectionately refer to it as “leakage.”
I have never had a huge incontinence problem, and I’ve never had any issues during the day. Sometimes, I have nighttime issues, but I can go months (I think that I’ve even gone years) between bouts. Even a “bout” is nothing that makes its way out of my jammies or boxers.
But I recently changed up my diet a little bit, and I’ve noticed some lack of consistency in my feces. Now, we’ve talked about this before. There are at least two meanings for “consistency.” The first is “the condition of cohering or holding together and retaining form” and the second is “the achievement of a level of performance that does not vary greatly in quality over time.” Both meanings apply here. The “consistency” of my poop has varied greatly over the last few weeks from straight liquid to semi-formed (and, folks, with no colon, “semi-formed” is as good as it gets). The “consistency” has also varied greatly in that I’ll poop liquid at 6:30 a.m., semi-formed at 8:00 a.m., liquid again after lunch, semi-formed—well, you get the picture.
I’ve never woken up in a pool of crap. (Though I take great offense when someone is critical of a professional athlete’s performance and describes the athlete as having “shit the bed.”) There was the Indian food incident of 1997, when I still had my mid-surgery colostomy bag, which will be the subject of a future post. That was a disgusting night. Poor Sela.
I did ask my surgeon if incontinence was something that would worsen over time, particularly as I get old and decrepit. I asked whether I should expect to be in adult diapers at some point. The answer is no. I should be able to maintain continence as if I had a colon. And that’s good news.
Here’s one of my annoyances with incontinence and leaking, though. It irritates the crap out of the skin on my bum. That stuff sitting there, while I sleep, just makes the skin burn. When I go and then wipe, I feel like my butt’s on fire (great image!). There are a bunch of products out there to help out with this. I’m sure all of you are aware of one or more. My product of choice is Calmoseptine (WARNING: TAKE A GANDER AT SITE DISCLAIMER NO. 2 TO YOUR RIGHT).
And, burning butt is a no colon affliction independent from incontinence. You go to the bathroom a lot, you wipe a lot, your butt will burn. So Jedediah and I go through our fair share of Calmoseptine. I like to have it nearby at all times. I have some in my desk drawer at work. I’ve considered carrying it in my briefcase (afraid the tube will open and spill) and in my car (not sure about the temperature variations and their effect on the efficacy of the ointment). I usually buy 6 or 12 tubes at a time (I go through a tube about every two months).
Anyway, somebody had to talk about fecal incontinence. And I guess I thought that I was just the guy for the job.
Thursday, May 31, 2012
I Had Nothing On My Mind
I have nothing no colon related particularly on my mind presently.
I added the “presently” because it sounded like BritEnglish (my own made up word for the form of “English” spoken in England—even though “English” should be sufficient since it is, well, England, and we should probably refer to “American English” whenever we talk about what we speak over here, not that I have any idea why I went on this tangent), and Sela and I started watching “Downton Abbey” the other night.
But I thought that I was in need of a blog post, so I am reaching down into the hermetically-sealed spinning barrel of IBD topics, and coming up with, “THE NEW YORK KNICKS!” Ok, that was a cheap and easy shot that only ardent sports fans will get.
No, the topic du jour is. . .probiotics.
Yes, loyal readers, probiotics AGAIN. Why? Because I have more to say on the topic, that’s why. And also because it’s my damn blog, and don’t you forget it! (Actually, I’d love some topic ideas from you guys).
I was at an education event a couple of years ago when the keynote speaker addressed the line of thinking that one of the main reasons for the increase in incidents of IBD over the last couple of decades is that we are too clean and have successfully decreased the amount of “good bacteria” along with the bad. Making us less healthy overall. One IBD anecdote he shared. Lots of immigrants to the US in the mid-1900s came here escaping squalor in Eastern Europe. But it wasn’t those immigrants who contracted IBD—it was their kids and grandkids born and raised in the US.
This is a HUGE freaking topic. I haven’t even scratched the surface, and I don’t intend to do so because I’m not qualified. (I know what you’re saying. “Dude’s not qualified to say half the stuff he says on the blog. HERE’s where he’s drawing a line.” Yep.)
In some corners of GI medicine, “probiotics” used to be a dirty word—ranking right up there with holistic medicine. Now, though, there are some studies backing up the efficacy of probiotics, particularly in the treatment of UC and with respect to care for ileo-anal pouches (i.e. NO COLONS).
Why am I bringing this up again? Hold your horses! I’m getting to that! Jeez, patience?
I was under the mistaken impression that all probiotics were roughly created equal and that the only real variance was the number of live cultures. More live cultures were more better. Those were the laws of probiotics as I thought I knew.
I can now say definitively that, for me, this is not the case. I’ve tried the Cadillac of live cultures, [Take a gander at site disclaimer No. 2 to your right and recall that I am not endorsing any product in any manner whatsoever] VSL#3, and at least three other brands of probiotics.
Of these four probiotics, my pouch performed equally well on three of them, VSL#3 and two others. VSL#3 capsules have 225 billion live cultures, and the three others I have tried have 1 billion, 1.5 billion and 13 billion. The one that did not help at all? The 13 billion one. Don’t know why.
My conclusion is that my prior understanding of the differences among probiotics was woefully incorrect. Which one am I using? The 1.5 billion one. Why? Because Costco has the best price on that one. And ‘cause it works for me. Really well.
I added the “presently” because it sounded like BritEnglish (my own made up word for the form of “English” spoken in England—even though “English” should be sufficient since it is, well, England, and we should probably refer to “American English” whenever we talk about what we speak over here, not that I have any idea why I went on this tangent), and Sela and I started watching “Downton Abbey” the other night.
But I thought that I was in need of a blog post, so I am reaching down into the hermetically-sealed spinning barrel of IBD topics, and coming up with, “THE NEW YORK KNICKS!” Ok, that was a cheap and easy shot that only ardent sports fans will get.
No, the topic du jour is. . .probiotics.
Yes, loyal readers, probiotics AGAIN. Why? Because I have more to say on the topic, that’s why. And also because it’s my damn blog, and don’t you forget it! (Actually, I’d love some topic ideas from you guys).
I was at an education event a couple of years ago when the keynote speaker addressed the line of thinking that one of the main reasons for the increase in incidents of IBD over the last couple of decades is that we are too clean and have successfully decreased the amount of “good bacteria” along with the bad. Making us less healthy overall. One IBD anecdote he shared. Lots of immigrants to the US in the mid-1900s came here escaping squalor in Eastern Europe. But it wasn’t those immigrants who contracted IBD—it was their kids and grandkids born and raised in the US.
This is a HUGE freaking topic. I haven’t even scratched the surface, and I don’t intend to do so because I’m not qualified. (I know what you’re saying. “Dude’s not qualified to say half the stuff he says on the blog. HERE’s where he’s drawing a line.” Yep.)
In some corners of GI medicine, “probiotics” used to be a dirty word—ranking right up there with holistic medicine. Now, though, there are some studies backing up the efficacy of probiotics, particularly in the treatment of UC and with respect to care for ileo-anal pouches (i.e. NO COLONS).
Why am I bringing this up again? Hold your horses! I’m getting to that! Jeez, patience?
I was under the mistaken impression that all probiotics were roughly created equal and that the only real variance was the number of live cultures. More live cultures were more better. Those were the laws of probiotics as I thought I knew.
I can now say definitively that, for me, this is not the case. I’ve tried the Cadillac of live cultures, [Take a gander at site disclaimer No. 2 to your right and recall that I am not endorsing any product in any manner whatsoever] VSL#3, and at least three other brands of probiotics.
Of these four probiotics, my pouch performed equally well on three of them, VSL#3 and two others. VSL#3 capsules have 225 billion live cultures, and the three others I have tried have 1 billion, 1.5 billion and 13 billion. The one that did not help at all? The 13 billion one. Don’t know why.
My conclusion is that my prior understanding of the differences among probiotics was woefully incorrect. Which one am I using? The 1.5 billion one. Why? Because Costco has the best price on that one. And ‘cause it works for me. Really well.
Thursday, May 24, 2012
Emissions
I think it’s the cashews.
Yep, it HAS to be the cashews.
The cashews have been the only recent addition to my diet. So they have to be the root of the problem, don’t they?
I’m going “all in” on this. I’m pinning my gas on the cashews.
I don’t have space for this gas. My no colon is no big. An air bubble the size of, well, a CASHEW can make me feel bloaty. “Bloaty” is not a word, but you know what I mean.
I’ve done, unquestionably, the best farting in the 15+ years since my surgery over the last 72 hours. “Best” as in most consistent, smelliest, driest. What hasn’t been nearly as good (or rewarding) has been the relief that I should feel after discharge. The gas seems to spontaneously reproduce itself. It’s a never-ending geyser of gas.
Damn you, jumbo jar of cashews from Costco! Damn You!
Yep, it HAS to be the cashews.
The cashews have been the only recent addition to my diet. So they have to be the root of the problem, don’t they?
I’m going “all in” on this. I’m pinning my gas on the cashews.
I don’t have space for this gas. My no colon is no big. An air bubble the size of, well, a CASHEW can make me feel bloaty. “Bloaty” is not a word, but you know what I mean.
I’ve done, unquestionably, the best farting in the 15+ years since my surgery over the last 72 hours. “Best” as in most consistent, smelliest, driest. What hasn’t been nearly as good (or rewarding) has been the relief that I should feel after discharge. The gas seems to spontaneously reproduce itself. It’s a never-ending geyser of gas.
Damn you, jumbo jar of cashews from Costco! Damn You!
Monday, May 14, 2012
"My No Colon No Feels Good" Redux
This is not EXACTLY a repost. But I guess it kind of is.
I couldn’t find the original. When I have more time, I’ll look for it again, and I’ll see how consistent my messaging really is.
I’m having one of those days (following one of those nights).
A “my no colon no feels good” kind of night and day.
I won’t bore you with the gory details. They’re gory. Kind of like the stomach flu (one way traffic—down only) on steroids.
It does present a conundrum, however, and this is something that I’ve pondered for over 15 years.
Is this really a “my no colon no feels good” thing? You know, something special to people with my constitution? Or, is this a garden variety bug or “I ate something that didn’t agree with me” thing? Something that affects even the commoners?
Allow me to get philosophical for a moment. I figure I’m actually getting “biological,” as opposed to “philosophical,” but I also figure that any moron can strive to say something philosophical without sounding like a total idiot, but when the same moron tries to say something grounded in actual science, well, he/she could be wrong and actually sound moronic.
And, if there is one thing that I won’t TOLERATE on this blog, it’s moronosy.
I paused there for a few moments. I’m certain you couldn’t tell. I kind of blacked out due to the “no colon no feels good” thing, but I’m back. Where was I?
Compounding my loss of thought progression is the fact that, after briefly blacking out, I just returned from ANOTHER trip to the loo. No colon isn’t meant to hold this much feces. Make. It. Stop.
Oh yeah. Philosophical. I’m thinking that taking the colon out of the equation screws up the equilibrium from mouth to anus, so to speak. Messes with the order of things, you might say. Leading me to this question:
Excluding pouchitis (clearly a no colon phenomena), would someone with no colon experience the same intestinal issues under the same conditions and the same diet as someone with a colon? In other words, is the “my no colon no feels good” situation a function of my “no colon” or just “no feels good”?
Let me insert some real life data:
But if this is some foreign situation, an affliction for which there is virtually no market (who is going to spend billions and billions to design a medication for the “no colon no feels good”?), then I am, well, shit out of luck. (Get it? “Shit” out of luck? I’ve been sitting on that one for quite a while. . .)
Feel free to comment or email me with your concern over my condition (he said in a shameless grab for sympathy).
I couldn’t find the original. When I have more time, I’ll look for it again, and I’ll see how consistent my messaging really is.
I’m having one of those days (following one of those nights).
A “my no colon no feels good” kind of night and day.
I won’t bore you with the gory details. They’re gory. Kind of like the stomach flu (one way traffic—down only) on steroids.
It does present a conundrum, however, and this is something that I’ve pondered for over 15 years.
Is this really a “my no colon no feels good” thing? You know, something special to people with my constitution? Or, is this a garden variety bug or “I ate something that didn’t agree with me” thing? Something that affects even the commoners?
Allow me to get philosophical for a moment. I figure I’m actually getting “biological,” as opposed to “philosophical,” but I also figure that any moron can strive to say something philosophical without sounding like a total idiot, but when the same moron tries to say something grounded in actual science, well, he/she could be wrong and actually sound moronic.
And, if there is one thing that I won’t TOLERATE on this blog, it’s moronosy.
I paused there for a few moments. I’m certain you couldn’t tell. I kind of blacked out due to the “no colon no feels good” thing, but I’m back. Where was I?
Compounding my loss of thought progression is the fact that, after briefly blacking out, I just returned from ANOTHER trip to the loo. No colon isn’t meant to hold this much feces. Make. It. Stop.
Oh yeah. Philosophical. I’m thinking that taking the colon out of the equation screws up the equilibrium from mouth to anus, so to speak. Messes with the order of things, you might say. Leading me to this question:
Excluding pouchitis (clearly a no colon phenomena), would someone with no colon experience the same intestinal issues under the same conditions and the same diet as someone with a colon? In other words, is the “my no colon no feels good” situation a function of my “no colon” or just “no feels good”?
Let me insert some real life data:
- FACT: I haven’t vomited since Day 3 after my second surgery (despite my system’s best efforts following the Epcot Center “Mission Space” Incident).
- FACT: I haven’t had the stomach flu since I became no colon.
- FACT: I have never suffered from constipation since I became no colon.
- FACT: I sometimes wear white socks with dark shoes and dark socks with white shoes, being forced to suffer endless ridicule from Sela, Tinkerbell and Elly Mae (Jed just shakes his head).
But if this is some foreign situation, an affliction for which there is virtually no market (who is going to spend billions and billions to design a medication for the “no colon no feels good”?), then I am, well, shit out of luck. (Get it? “Shit” out of luck? I’ve been sitting on that one for quite a while. . .)
Feel free to comment or email me with your concern over my condition (he said in a shameless grab for sympathy).
Wednesday, May 9, 2012
Indentured Servitude? Hardly
Parenting a child with any chronic illness is, to put it lightly, a challenge.
I strongly believe that IBD is “different,” but that’s a topic for another day.
Other parenting topics that we will save for another day include advocating for your child with regard to healthcare and (key the “Schoolhouse Rock” music) Knowledge is Power!
In fact, today we’re not going to focus on your child or children with IBD at all. We’re going to concentrate on your other children. So, this post may not apply to you at all, and if it doesn’t, move along, move along, there’s nothing to see here.
When I speak to parents, one of my messages is, “We tend to treat our kids with IBD differently, don’t we? Maybe we let them out of chores. Maybe we let them do things that we don’t let their siblings do. Right?”
[At this point, every parent’s head is bobbling up and down.]
Then I say, “It’s ok. It’s natural. And there’s nothing you can do about it because you’re always going to have a tendency to want your sick child to get the most out of the time that he/she feels well. But, remember that you have other children.”
Oh, yeah.
This is far from an exact science, and specific family dynamics will affect how you navigate through this part of your challenge. But here are a couple of tips.
First and foremost, you must remember and be sensitive to the fact that each of your kids are dealing with all of the same every day issues that all kids deal with, and you need to be there for them as best you can. While it may be the last thing you want to discuss and you may deem it “unimportant” given that you are awaiting medical test results, your daughter’s bad experience on the bus merits your attention.
Second, you must let your other children, in an age appropriate manner, know what is going on. I was 8 when I was diagnosed with UC, and my sister, KK, was then 6. KK recently confided in me that she thought I was dying. My parents never had the, “Han’s tummy is sick, but he’s going to get better” discussion with her. My parents needed to understand that her life was turned every bit as upside down as everybody else’s by my illness.
Chores around the house are also tough. It’s not like Sela and I ask our kids to go down to the creek with a washboard and scrub their clothes, but setting and clearing the table, putting stuff away, taking out garbage, caring for (no codename needed) Izzy the dog—those are things we expect from our kids.
Here’s the tightrope. We’re not going to ask Jed or Tink to do any of these things when they don’t feel well enough to do them. But we also don’t want our healthy kids to carry more of a share of the load. The last thing we want is for Elly Mae to be “mad” at or “resent” Jed or Tink for being sick.
I remember a discussion that I had with Tinkerbell when Jedediah was at his sickest—in and out of the hospital. Tink was 14, and Jed was 12. I went to speak to Tink and I said, “Don’t think for a minute that your mom and I don’t recognize that you’re getting short shrift. We absolutely recognize that we haven’t been there for you as much as we would have liked, and we’ll make it up to you.”
Tink’s response still brings tears to my eyes. “Dad, it’s ok, Jed needs you.”
I figured we must be doing something right. But most of all, it was just another example of Tink’s awesomeness.
I strongly believe that IBD is “different,” but that’s a topic for another day.
Other parenting topics that we will save for another day include advocating for your child with regard to healthcare and (key the “Schoolhouse Rock” music) Knowledge is Power!
In fact, today we’re not going to focus on your child or children with IBD at all. We’re going to concentrate on your other children. So, this post may not apply to you at all, and if it doesn’t, move along, move along, there’s nothing to see here.
When I speak to parents, one of my messages is, “We tend to treat our kids with IBD differently, don’t we? Maybe we let them out of chores. Maybe we let them do things that we don’t let their siblings do. Right?”
[At this point, every parent’s head is bobbling up and down.]
Then I say, “It’s ok. It’s natural. And there’s nothing you can do about it because you’re always going to have a tendency to want your sick child to get the most out of the time that he/she feels well. But, remember that you have other children.”
Oh, yeah.
This is far from an exact science, and specific family dynamics will affect how you navigate through this part of your challenge. But here are a couple of tips.
First and foremost, you must remember and be sensitive to the fact that each of your kids are dealing with all of the same every day issues that all kids deal with, and you need to be there for them as best you can. While it may be the last thing you want to discuss and you may deem it “unimportant” given that you are awaiting medical test results, your daughter’s bad experience on the bus merits your attention.
Second, you must let your other children, in an age appropriate manner, know what is going on. I was 8 when I was diagnosed with UC, and my sister, KK, was then 6. KK recently confided in me that she thought I was dying. My parents never had the, “Han’s tummy is sick, but he’s going to get better” discussion with her. My parents needed to understand that her life was turned every bit as upside down as everybody else’s by my illness.
Chores around the house are also tough. It’s not like Sela and I ask our kids to go down to the creek with a washboard and scrub their clothes, but setting and clearing the table, putting stuff away, taking out garbage, caring for (no codename needed) Izzy the dog—those are things we expect from our kids.
Here’s the tightrope. We’re not going to ask Jed or Tink to do any of these things when they don’t feel well enough to do them. But we also don’t want our healthy kids to carry more of a share of the load. The last thing we want is for Elly Mae to be “mad” at or “resent” Jed or Tink for being sick.
I remember a discussion that I had with Tinkerbell when Jedediah was at his sickest—in and out of the hospital. Tink was 14, and Jed was 12. I went to speak to Tink and I said, “Don’t think for a minute that your mom and I don’t recognize that you’re getting short shrift. We absolutely recognize that we haven’t been there for you as much as we would have liked, and we’ll make it up to you.”
Tink’s response still brings tears to my eyes. “Dad, it’s ok, Jed needs you.”
I figured we must be doing something right. But most of all, it was just another example of Tink’s awesomeness.
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