When and how to tell my son?

D

DarceyMaysey

Guest
I am the one with CF my six-year old son doesn't have it. Sometimes I get upset because I feel like my mom tells my son too much. For example, he came home from her house one time very upset because I was going to die. He sees me doing my meds, etc. but I don't think a child that young needs to be concerned about losing his mother.
 
D

DarceyMaysey

Guest
I am the one with CF my six-year old son doesn't have it. Sometimes I get upset because I feel like my mom tells my son too much. For example, he came home from her house one time very upset because I was going to die. He sees me doing my meds, etc. but I don't think a child that young needs to be concerned about losing his mother.
 
E

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>DarceyMaysey</b></i>

I am the one with CF my six-year old son doesn't have it. Sometimes I get upset because I feel like my mom tells my son too much. For example, he came home from her house one time very upset because I was going to die. He sees me doing my meds, etc. but I don't think a child that young needs to be concerned about losing his mother.</end quote></div>

It's better that way than if you die one day and the kid has no idea at all. That'd knock him flat on his @ss, he'd be so surprised.
 
E

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>DarceyMaysey</b></i>

I am the one with CF my six-year old son doesn't have it. Sometimes I get upset because I feel like my mom tells my son too much. For example, he came home from her house one time very upset because I was going to die. He sees me doing my meds, etc. but I don't think a child that young needs to be concerned about losing his mother.</end quote></div>

It's better that way than if you die one day and the kid has no idea at all. That'd knock him flat on his @ss, he'd be so surprised.
 
E

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>DarceyMaysey</b></i>

I am the one with CF my six-year old son doesn't have it. Sometimes I get upset because I feel like my mom tells my son too much. For example, he came home from her house one time very upset because I was going to die. He sees me doing my meds, etc. but I don't think a child that young needs to be concerned about losing his mother.</end quote></div>

It's better that way than if you die one day and the kid has no idea at all. That'd knock him flat on his @ss, he'd be so surprised.
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>

We just figure we'll let DS believe that all the other kids do their vest & nebs at home before and afterschool and before bed. Heck, sometimes he INSISTS that I have an enzyme if I'm having a snack & glass of milk with him.



Seriously, we address the questions as they come about. He LOVES the mucinex commercial with the slimey green guys, so we tell him he needs to the the vest to get the booger monsters out of there.</end quote></div>

This just hit me rather funny so I need to inquire.......
Can I ask why? Is it because you dont think he can handle being "different" or is it easier for YOU not to correct him? WHat if he pushes meds on some other child who doesnt know any better? I dont mean to sound cruel, but this is possible. If he thinks all take & do the same then he might make sure it happens. NO?!
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>

We just figure we'll let DS believe that all the other kids do their vest & nebs at home before and afterschool and before bed. Heck, sometimes he INSISTS that I have an enzyme if I'm having a snack & glass of milk with him.



Seriously, we address the questions as they come about. He LOVES the mucinex commercial with the slimey green guys, so we tell him he needs to the the vest to get the booger monsters out of there.</end quote></div>

This just hit me rather funny so I need to inquire.......
Can I ask why? Is it because you dont think he can handle being "different" or is it easier for YOU not to correct him? WHat if he pushes meds on some other child who doesnt know any better? I dont mean to sound cruel, but this is possible. If he thinks all take & do the same then he might make sure it happens. NO?!
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>

We just figure we'll let DS believe that all the other kids do their vest & nebs at home before and afterschool and before bed. Heck, sometimes he INSISTS that I have an enzyme if I'm having a snack & glass of milk with him.



Seriously, we address the questions as they come about. He LOVES the mucinex commercial with the slimey green guys, so we tell him he needs to the the vest to get the booger monsters out of there.</end quote></div>

This just hit me rather funny so I need to inquire.......
Can I ask why? Is it because you dont think he can handle being "different" or is it easier for YOU not to correct him? WHat if he pushes meds on some other child who doesnt know any better? I dont mean to sound cruel, but this is possible. If he thinks all take & do the same then he might make sure it happens. NO?!
 
T

thefrogprincess

New member
Definately use age appropriate terms! I don't remember NOT knowing that I have CF. We called our chest PT (back in the dark ages when that was all there was) "thumps", albuterol was "wheezy medicine"....enzymes were always enzymes though.....

Think of it like explaining where babies come from. A little kid won't understand the "medical" explaination.
 
T

thefrogprincess

New member
Definately use age appropriate terms! I don't remember NOT knowing that I have CF. We called our chest PT (back in the dark ages when that was all there was) "thumps", albuterol was "wheezy medicine"....enzymes were always enzymes though.....

Think of it like explaining where babies come from. A little kid won't understand the "medical" explaination.
 
T

thefrogprincess

New member
Definately use age appropriate terms! I don't remember NOT knowing that I have CF. We called our chest PT (back in the dark ages when that was all there was) "thumps", albuterol was "wheezy medicine"....enzymes were always enzymes though.....

Think of it like explaining where babies come from. A little kid won't understand the "medical" explaination.
 
W

wuffles

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>thefrogprincess</b></i>

Definately use age appropriate terms! I don't remember NOT knowing that I have CF. We called our chest PT (back in the dark ages when that was all there was) "thumps", albuterol was "wheezy medicine"....enzymes were always enzymes though.....</end quote></div>

Hehehe don't want to get off-track, but this reminded me... I used to call enzymes "beads". I also don't remember NOT knowing, so not sure how my parents told me...
 
W

wuffles

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>thefrogprincess</b></i>

Definately use age appropriate terms! I don't remember NOT knowing that I have CF. We called our chest PT (back in the dark ages when that was all there was) "thumps", albuterol was "wheezy medicine"....enzymes were always enzymes though.....</end quote></div>

Hehehe don't want to get off-track, but this reminded me... I used to call enzymes "beads". I also don't remember NOT knowing, so not sure how my parents told me...
 
W

wuffles

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>thefrogprincess</b></i>

Definately use age appropriate terms! I don't remember NOT knowing that I have CF. We called our chest PT (back in the dark ages when that was all there was) "thumps", albuterol was "wheezy medicine"....enzymes were always enzymes though.....</end quote></div>

Hehehe don't want to get off-track, but this reminded me... I used to call enzymes "beads". I also don't remember NOT knowing, so not sure how my parents told me...
 
S

sweetwhite30

New member
My recent explanation to my four year old because he asked mommy why am i so special but i did not realize what he was asking at first until he was like aww not that the other thing, i drew him a picture of his lungs and put dots in it and drew on another paper clear lungs,I said your special for many reason most important i love you and secondly because you have a issue that requires that vest for these lungs and i showed him on paper what the vest does and told him,he then said ok love you mommy and went about his day. It can be sometimes more better to draw and tell a child because they absorb it more this way i feel.He calls his creon now "guardian pills" i just take it in stride.
 
S

sweetwhite30

New member
My recent explanation to my four year old because he asked mommy why am i so special but i did not realize what he was asking at first until he was like aww not that the other thing, i drew him a picture of his lungs and put dots in it and drew on another paper clear lungs,I said your special for many reason most important i love you and secondly because you have a issue that requires that vest for these lungs and i showed him on paper what the vest does and told him,he then said ok love you mommy and went about his day. It can be sometimes more better to draw and tell a child because they absorb it more this way i feel.He calls his creon now "guardian pills" i just take it in stride.
 
S

sweetwhite30

New member
My recent explanation to my four year old because he asked mommy why am i so special but i did not realize what he was asking at first until he was like aww not that the other thing, i drew him a picture of his lungs and put dots in it and drew on another paper clear lungs,I said your special for many reason most important i love you and secondly because you have a issue that requires that vest for these lungs and i showed him on paper what the vest does and told him,he then said ok love you mommy and went about his day. It can be sometimes more better to draw and tell a child because they absorb it more this way i feel.He calls his creon now "guardian pills" i just take it in stride.
 
V

vmhoward

New member
My son is 6 in April. He just recently began asking questions about his treatments etc... Mostly because these are all he has known since birth. I think that going to school changed some things for him and he began to see that not all kids go to the nurse to take meds at lunch time. and not all kids had a button or a Port. He was just completely excited when I told him that I had met Leah and her son and how her son has a port and a button "just like him" But we talk as the need arises, he asks questions and I answer them in a way that he can understand. Of coarse I dont want to start now telling him statistics and age expectancies cause that would just make him worried and depressed. We take each day as it comes. The doctor asked me last visit how things were and I told him just that, I said we tkae it one day at a time. Some days are better than others. And with his PFT's at 47% we just enjoy the timeos with him and pray for the best. I have to tell you that since he started gaining weight with the G Tube that he has gotten alot better. But all in all He is the most calm person in the house about CF. And has some of the most thought provoking questions and concerns. But we answer them the best we can and go on.

I hope you are able to find the right words to say and you will know when it is time, and if you dont, he will.

Another option is something we have taken advantage of at our hospital. We have a Child Life Specialist at the Pediatric Ward. And the last time Garran was in to get his Port placed we asked him to come in and talk with him about the procedure. He was able to talk to garran about the surgery and he helped him become more comfortable with everything. Even brought in pictures and stuffed animals with a port. He was great! Maybe that is another option for you as well. Just a thought.
 
V

vmhoward

New member
My son is 6 in April. He just recently began asking questions about his treatments etc... Mostly because these are all he has known since birth. I think that going to school changed some things for him and he began to see that not all kids go to the nurse to take meds at lunch time. and not all kids had a button or a Port. He was just completely excited when I told him that I had met Leah and her son and how her son has a port and a button "just like him" But we talk as the need arises, he asks questions and I answer them in a way that he can understand. Of coarse I dont want to start now telling him statistics and age expectancies cause that would just make him worried and depressed. We take each day as it comes. The doctor asked me last visit how things were and I told him just that, I said we tkae it one day at a time. Some days are better than others. And with his PFT's at 47% we just enjoy the timeos with him and pray for the best. I have to tell you that since he started gaining weight with the G Tube that he has gotten alot better. But all in all He is the most calm person in the house about CF. And has some of the most thought provoking questions and concerns. But we answer them the best we can and go on.

I hope you are able to find the right words to say and you will know when it is time, and if you dont, he will.

Another option is something we have taken advantage of at our hospital. We have a Child Life Specialist at the Pediatric Ward. And the last time Garran was in to get his Port placed we asked him to come in and talk with him about the procedure. He was able to talk to garran about the surgery and he helped him become more comfortable with everything. Even brought in pictures and stuffed animals with a port. He was great! Maybe that is another option for you as well. Just a thought.
 
V

vmhoward

New member
My son is 6 in April. He just recently began asking questions about his treatments etc... Mostly because these are all he has known since birth. I think that going to school changed some things for him and he began to see that not all kids go to the nurse to take meds at lunch time. and not all kids had a button or a Port. He was just completely excited when I told him that I had met Leah and her son and how her son has a port and a button "just like him" But we talk as the need arises, he asks questions and I answer them in a way that he can understand. Of coarse I dont want to start now telling him statistics and age expectancies cause that would just make him worried and depressed. We take each day as it comes. The doctor asked me last visit how things were and I told him just that, I said we tkae it one day at a time. Some days are better than others. And with his PFT's at 47% we just enjoy the timeos with him and pray for the best. I have to tell you that since he started gaining weight with the G Tube that he has gotten alot better. But all in all He is the most calm person in the house about CF. And has some of the most thought provoking questions and concerns. But we answer them the best we can and go on.

I hope you are able to find the right words to say and you will know when it is time, and if you dont, he will.

Another option is something we have taken advantage of at our hospital. We have a Child Life Specialist at the Pediatric Ward. And the last time Garran was in to get his Port placed we asked him to come in and talk with him about the procedure. He was able to talk to garran about the surgery and he helped him become more comfortable with everything. Even brought in pictures and stuffed animals with a port. He was great! Maybe that is another option for you as well. Just a thought.
 
You must log in or register to reply here.
Top