What's new
By:
Filters
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

An indirectly CF related problem

E

Emily65Roses

New member
I did a quick search on Barnes and Noble...
I Heard Your Daddy Died:
<a target=new class=ftalternatingbarlinklarge href="http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=1561230871&kids=y&itm=6
">http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=1561230871&kids=y&itm=6
</a>My Daddy Died and it's All God's Fault:
<a target=new class=ftalternatingbarlinklarge href="http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=0849908795&kids=y&itm=7
">http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=0849908795&kids=y&itm=7
</a>My Daddy Died:
<a target=new class=ftalternatingbarlinklarge href="http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=0964171805&kids=y&itm=8
">http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=0964171805&kids=y&itm=8
</a>Sad but Okay, My Daddy Died Today:
<a target=new class=ftalternatingbarlinklarge href="http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=0931892198&kids=y&itm=9
">http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=0931892198&kids=y&itm=9
</a>My Daddy and Me (this one seems to have really good reviews):
<a target=new class=ftalternatingbarlinklarge href="http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=1585971642&kids=y&itm=11
">http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=1585971642&kids=y&itm=11
</a>
Maybe one or two of those might help. *shrug*
 
E

Emily65Roses

New member
I did a quick search on Barnes and Noble...
I Heard Your Daddy Died:
<a target=new class=ftalternatingbarlinklarge href="http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=1561230871&kids=y&itm=6
">http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=1561230871&kids=y&itm=6
</a>My Daddy Died and it's All God's Fault:
<a target=new class=ftalternatingbarlinklarge href="http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=0849908795&kids=y&itm=7
">http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=0849908795&kids=y&itm=7
</a>My Daddy Died:
<a target=new class=ftalternatingbarlinklarge href="http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=0964171805&kids=y&itm=8
">http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=0964171805&kids=y&itm=8
</a>Sad but Okay, My Daddy Died Today:
<a target=new class=ftalternatingbarlinklarge href="http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=0931892198&kids=y&itm=9
">http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=0931892198&kids=y&itm=9
</a>My Daddy and Me (this one seems to have really good reviews):
<a target=new class=ftalternatingbarlinklarge href="http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=1585971642&kids=y&itm=11
">http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=9O0bP22DHE&isbn=1585971642&kids=y&itm=11
</a>
Maybe one or two of those might help. *shrug*
 
A

anonymous

New member
Hi Allie,

Breaks my heart to read your post. It also scares me because I am sure it won't be long before my son asks me the same question. He starts preschool this year , so I am bracing myself. I don't know what to say. It must be so hard for children to understand the situation because as an adult I have a hard time understanding. I dread going to school activites without my husband, how does a child deal with not having their parent there.
In a recent meeting with my son's Preschool we discussed our situation because I wanted us to all be on the same page. The director shared with me they no longer do Mommy/Daddy/Grandparent days, now they focus on someone special days. On these days in the past, she suggested to parents to have the child pick out a picture of the parent and put it in their pocket or bookbag.

Take Care,
Melissa
 
A

anonymous

New member
Hi Allie,

Breaks my heart to read your post. It also scares me because I am sure it won't be long before my son asks me the same question. He starts preschool this year , so I am bracing myself. I don't know what to say. It must be so hard for children to understand the situation because as an adult I have a hard time understanding. I dread going to school activites without my husband, how does a child deal with not having their parent there.
In a recent meeting with my son's Preschool we discussed our situation because I wanted us to all be on the same page. The director shared with me they no longer do Mommy/Daddy/Grandparent days, now they focus on someone special days. On these days in the past, she suggested to parents to have the child pick out a picture of the parent and put it in their pocket or bookbag.

Take Care,
Melissa
 
A

anonymous

New member
PS- Not sure if you found this website for Young Widows- www.ywbb.org They have a section for widows with kids. Sometimes I come across an idea, sometimes it just helps to talk to people in the same boat .

Melissa
 
A

anonymous

New member
PS- Not sure if you found this website for Young Widows- www.ywbb.org They have a section for widows with kids. Sometimes I come across an idea, sometimes it just helps to talk to people in the same boat .

Melissa
 
A

Allie

New member
Thank you guys all so much. I'm looking at buying one of the books for her, and I got some ideas from that board on how to talk to her. Thanks again.
 
A

Allie

New member
Thank you guys all so much. I'm looking at buying one of the books for her, and I got some ideas from that board on how to talk to her. Thanks again.
 
A

anonymous

New member
Maybe you can find a support group for kids who have lost a parent with CF. This way she can talk to the other kids and not feel so alone. My heart aches for both of you. She sounds like a sweet little girl who really loved her daddy.
Hugs, Joan
 
A

anonymous

New member
Maybe you can find a support group for kids who have lost a parent with CF. This way she can talk to the other kids and not feel so alone. My heart aches for both of you. She sounds like a sweet little girl who really loved her daddy.
Hugs, Joan
 
L

lovingBenandCambree

New member
Allie,
I can't imagine the pain that it causes you to see how Ahava is dealing with such things as you are dealing with them yourself and probably can't understand it all being in your 30's. I can't imagine what a 5 year olds thinking is. It broke my heart to hear about this. As a mother I can not imagine trying to explain something so fragile. I wish that I could give you some amazing advice that would just make it all better for all of you but unfortunately this life is sometimes more than can be explained. I hope that as things come that you will share them with us. I dread the day that my little girl will be in the same situation. I know that I can learn from your experiences in how to deal with these difficult questions. this is all difficult for me to think about and as I read things that you post I think of my husband and the pain that could come our way. I feel like I am ranting on and on but I just want to thank you for sharing all that you go through!

Emilee
 
L

lovingBenandCambree

New member
Allie,
I can't imagine the pain that it causes you to see how Ahava is dealing with such things as you are dealing with them yourself and probably can't understand it all being in your 30's. I can't imagine what a 5 year olds thinking is. It broke my heart to hear about this. As a mother I can not imagine trying to explain something so fragile. I wish that I could give you some amazing advice that would just make it all better for all of you but unfortunately this life is sometimes more than can be explained. I hope that as things come that you will share them with us. I dread the day that my little girl will be in the same situation. I know that I can learn from your experiences in how to deal with these difficult questions. this is all difficult for me to think about and as I read things that you post I think of my husband and the pain that could come our way. I feel like I am ranting on and on but I just want to thank you for sharing all that you go through!

Emilee
 
F

Faust

New member
Even though she is only 5, she does sound extremely smart, just tell her that sometimes when people are born, we are born with problems, and then point out some other people with obvious infirmaties like in wheelchairs and such. Tell her that her father was one of those people born like that, and how it has nothing to do with anything other than sometimes people are just born like that. Tell her that many people are born with their own problems similar to that all the time, and she is very lucky to not have been born with any problems, and to be thankful. And then of course follow it up with the typical daddy loves her alot and is watching down on her and all that stuff.


Maybe if you can show her how her daddy is like other people who are sick, and maybe even others who were sick and have died, she might be able to understand it better.

Good luck.
 
F

Faust

New member
Even though she is only 5, she does sound extremely smart, just tell her that sometimes when people are born, we are born with problems, and then point out some other people with obvious infirmaties like in wheelchairs and such. Tell her that her father was one of those people born like that, and how it has nothing to do with anything other than sometimes people are just born like that. Tell her that many people are born with their own problems similar to that all the time, and she is very lucky to not have been born with any problems, and to be thankful. And then of course follow it up with the typical daddy loves her alot and is watching down on her and all that stuff.


Maybe if you can show her how her daddy is like other people who are sick, and maybe even others who were sick and have died, she might be able to understand it better.

Good luck.
 
A

Allie

New member
For Emilee or anyone else who wants to know the story thus far:

I talked to Ahava some more about it and answered some questions that she's asked a lot of in the past few months.

<b>Why did he have to die?</b>

He was very sick honey, and there wasn't anything that could make him better.

<b> Was I bad? </b>

No hon, it wasn't anything any of us did or didn't do. He just got too sick, he couldn't breathe anymore.

<b> Will I ever see him again? </b>

Not for a long, long time, when we all go to heaven.

<b> Does this mean I don't have a Dad anymore? </b>

No, honey, you still have a Dad, he just can't be here with us.

<b> Are you going to get CF? Am I? </b>

No honey, your Dad was born with it. Neither of us have anything to worry about.

<b> Is he happy? </b>

I think so, yes. I think he misses us a lot, but he's healthy and with God now.

<b> Is he ever coming home? What if I ask God? </b>

People can't come back from Heaven, I'm afraid. I wish we could have him back, but we just can't.

<b> Well...can we visit him in heaven? Like before? </b> (when we used to visit him in the hospital)

No baby, no one knows how to get there.

<b> Well Dad figured it out Mom, geez. </b>

I know, but we can't get there unfortunately. God only tells you how to get there when you're supposed to be there.

She seemed satified with the conversation, and decided that she wanted to make him a card for Valentine's day. So we made him a big heart with a bunch of different colors of paper, and we wrote on how we love him and miss him and send him bunches of hugs and kisses. Then, when I suggested that we take it to the cemetary on Valentnie's day, she looked at me like I was an idiot and said "he'll never get it that way!" So she got an envelope and addressed it to him, in heaven. We put a stamp on it and put it in the mailbox.

This is going to be ongoing, but she seems happier that he ahs a letter from her, and I wanted to keep those whom it concerns posted.
 
A

Allie

New member
For Emilee or anyone else who wants to know the story thus far:

I talked to Ahava some more about it and answered some questions that she's asked a lot of in the past few months.

<b>Why did he have to die?</b>

He was very sick honey, and there wasn't anything that could make him better.

<b> Was I bad? </b>

No hon, it wasn't anything any of us did or didn't do. He just got too sick, he couldn't breathe anymore.

<b> Will I ever see him again? </b>

Not for a long, long time, when we all go to heaven.

<b> Does this mean I don't have a Dad anymore? </b>

No, honey, you still have a Dad, he just can't be here with us.

<b> Are you going to get CF? Am I? </b>

No honey, your Dad was born with it. Neither of us have anything to worry about.

<b> Is he happy? </b>

I think so, yes. I think he misses us a lot, but he's healthy and with God now.

<b> Is he ever coming home? What if I ask God? </b>

People can't come back from Heaven, I'm afraid. I wish we could have him back, but we just can't.

<b> Well...can we visit him in heaven? Like before? </b> (when we used to visit him in the hospital)

No baby, no one knows how to get there.

<b> Well Dad figured it out Mom, geez. </b>

I know, but we can't get there unfortunately. God only tells you how to get there when you're supposed to be there.

She seemed satified with the conversation, and decided that she wanted to make him a card for Valentine's day. So we made him a big heart with a bunch of different colors of paper, and we wrote on how we love him and miss him and send him bunches of hugs and kisses. Then, when I suggested that we take it to the cemetary on Valentnie's day, she looked at me like I was an idiot and said "he'll never get it that way!" So she got an envelope and addressed it to him, in heaven. We put a stamp on it and put it in the mailbox.

This is going to be ongoing, but she seems happier that he ahs a letter from her, and I wanted to keep those whom it concerns posted.
 
E

Emily65Roses

New member
*cry* Oh my god, that child is so cute.
"Well Dad figured it out Mom, geez."
Hehehehe. I'm glad you guys did the Valentine. And I love the "he'll never get it that way!! DUH!!" attitude. She is sooooo her father. lol
 
E

Emily65Roses

New member
*cry* Oh my god, that child is so cute.
"Well Dad figured it out Mom, geez."
Hehehehe. I'm glad you guys did the Valentine. And I love the "he'll never get it that way!! DUH!!" attitude. She is sooooo her father. lol
 
J

JazzysMom

New member
I think you handled it EXCELLENTLY Allie. Can I just add one thing which I have read in many "How to handle death for kids books". Try not to say Ry was "sick" even tho he was. Maybe refer to it as his lungs didnt work properly etc. Even tho its not an issue yet at some point she might think "sick" can be a very general term & worry. I had that with Jazmine. She asked me if everyone who got sick will die, but she meant like sick as in colds etc etc. Same type of thing as telling kids that when someone dies they just go to sleep & never wake up. In a kids mind they are taking that literally & might be afraid to go to sleep. As far as the envelope & postage stamp for the card.....I dont know why you wouldnt think of that...I mean I know postage went up in price & I am assuming it would have to be sent "air mail" (LOL), but she wanted to be sure he got it! SILLY MOM! <img src="i/expressions/face-icon-small-tongue.gif" border="0">
 
J

JazzysMom

New member
I think you handled it EXCELLENTLY Allie. Can I just add one thing which I have read in many "How to handle death for kids books". Try not to say Ry was "sick" even tho he was. Maybe refer to it as his lungs didnt work properly etc. Even tho its not an issue yet at some point she might think "sick" can be a very general term & worry. I had that with Jazmine. She asked me if everyone who got sick will die, but she meant like sick as in colds etc etc. Same type of thing as telling kids that when someone dies they just go to sleep & never wake up. In a kids mind they are taking that literally & might be afraid to go to sleep. As far as the envelope & postage stamp for the card.....I dont know why you wouldnt think of that...I mean I know postage went up in price & I am assuming it would have to be sent "air mail" (LOL), but she wanted to be sure he got it! SILLY MOM! <img src="i/expressions/face-icon-small-tongue.gif" border="0">
 
You must log in or register to reply here.
Top