death

[anonymous]

Emily,
i read your post and just wanted to say how RIGHT you are. the things you said is where i am at. i lost my daughter traci in march she was 17 ..to cf, it will be a year next month it blows me away it feels like it just happened, but my family my friends tell me to move on learn to live alone .......all that crap.......but i cant im still grieving so much.its at the point where i dont see anyone anymore ,i think they cant handle my grief i dont know!
but your post touched me and i just wanted to tell you that!
stick around i may need you!
thanks
gail
traci(2-2-88--3-24-05)

 

[anonymous]

Emily,
i read your post and just wanted to say how RIGHT you are. the things you said is where i am at. i lost my daughter traci in march she was 17 ..to cf, it will be a year next month it blows me away it feels like it just happened, but my family my friends tell me to move on learn to live alone .......all that crap.......but i cant im still grieving so much.its at the point where i dont see anyone anymore ,i think they cant handle my grief i dont know!
but your post touched me and i just wanted to tell you that!
stick around i may need you!
thanks
gail
traci(2-2-88--3-24-05)

 

[TonyaH]

Please know I am thinking of you at this sad time. It is obvious how very much you love Josh and I wish you peace in the memory of the special bond the two of you shared.

 

[TonyaH]

Please know I am thinking of you at this sad time. It is obvious how very much you love Josh and I wish you peace in the memory of the special bond the two of you shared.

 

[momofjosh]

Gin
Thanks for your note...I went to the website. It is wonderful!! I didn't have a lot of time so I want to go back there, my 17 year old daughter is very sick right now.(just what we all need right now!) I will be talking to you again. It is so nice to have somewhere to go to talk freely about my feelings with people who really understand. I think that is what is helping me deal with all of this. Thank you again for sharing your story and daughter's memory with me.

momofjosh

 

[momofjosh]

Gin
Thanks for your note...I went to the website. It is wonderful!! I didn't have a lot of time so I want to go back there, my 17 year old daughter is very sick right now.(just what we all need right now!) I will be talking to you again. It is so nice to have somewhere to go to talk freely about my feelings with people who really understand. I think that is what is helping me deal with all of this. Thank you again for sharing your story and daughter's memory with me.

momofjosh

 

[momofjosh]

I couldn't even imagine how much it was going to hurt after Josh passed. I used to think about it, but the reality is so hard. Of course today is Valentines Day so I think about him and miss him because I always used to buy my kids something and leave it on the table for them before school. Josh was always thoughtful that way too. I remember one Mother's Day, he was in the hospital so he went down to the gift shop and bought me a gift. It was a stained glass thing to hang in the window that says "I Love You Mom" I'm sure every holiday will be hard this first year. It hurts to think of him, but on the same hand I want to because it makes me feel close to him still. I can't imagine this pain ever going away. I just keep telling myself it will get a little better some day. Josh and I were very close because of his illness, actually he was close to his whole family. I probably never mentioned that my brother (Josh's uncle Mike) does Elvis impersinations to raise money for Cystic Fibrosis. He calls himself "King for a Cure" He has raised a lot of money this year. He also started the "Great Strides Walk" in Racine. My brother never had his own children so he was always close to mine. Josh and him used to go fishing a lot and play golf while he was still able. Obviously Mike is hurting very bad too. This whole thing has brought my whole family even closer. Thank God we have each other. And thank God for this website. Sometimes I think other people are tired of me talking about it, but no one here seems to care if I ramble on. Thank you all!
momofjosh

 

[momofjosh]

I couldn't even imagine how much it was going to hurt after Josh passed. I used to think about it, but the reality is so hard. Of course today is Valentines Day so I think about him and miss him because I always used to buy my kids something and leave it on the table for them before school. Josh was always thoughtful that way too. I remember one Mother's Day, he was in the hospital so he went down to the gift shop and bought me a gift. It was a stained glass thing to hang in the window that says "I Love You Mom" I'm sure every holiday will be hard this first year. It hurts to think of him, but on the same hand I want to because it makes me feel close to him still. I can't imagine this pain ever going away. I just keep telling myself it will get a little better some day. Josh and I were very close because of his illness, actually he was close to his whole family. I probably never mentioned that my brother (Josh's uncle Mike) does Elvis impersinations to raise money for Cystic Fibrosis. He calls himself "King for a Cure" He has raised a lot of money this year. He also started the "Great Strides Walk" in Racine. My brother never had his own children so he was always close to mine. Josh and him used to go fishing a lot and play golf while he was still able. Obviously Mike is hurting very bad too. This whole thing has brought my whole family even closer. Thank God we have each other. And thank God for this website. Sometimes I think other people are tired of me talking about it, but no one here seems to care if I ramble on. Thank you all!
momofjosh

 

[JazzysMom]

I would love to see your brother do his Elvis impersonation!!! I know its hard. I know each holiday even Groundhogs Day will seem upsetting during that first year without him. It seems silly, but its another day without him by your side physically. I specify saying it that way because I want you to try & remember that he is with you. I talk to my daughter all the time about my Dad who passed away 21 years ago in March. She, of course, never met him since she will only be 8, but she feels like she knows him. I talk about him all the time, share pictures, stories etc. She asks me if I am sad that he is in Heaven. I say yes I am. She tells me (reverse roles for a moment...LOL) that he is still with me in spirit. I tell I know, but I want to be able to hug him sometimes. Thats when she gives me a hug. My point is that even tho you cant get that hug from him (which sucks by the way), please KNOW (not just think) that he is with you! I understand you thinking people get tired of hearing things. Unless they have been thru it (and even if they have sometimes), they dont get the pain! You are always welcome with open arms on here to vent, cry, chat or just share some stories! I think you should blow up a balloon, draw as heart on it with a small message & release it up to Josh! Happy Valentines Day!

 

[JazzysMom]

I would love to see your brother do his Elvis impersonation!!! I know its hard. I know each holiday even Groundhogs Day will seem upsetting during that first year without him. It seems silly, but its another day without him by your side physically. I specify saying it that way because I want you to try & remember that he is with you. I talk to my daughter all the time about my Dad who passed away 21 years ago in March. She, of course, never met him since she will only be 8, but she feels like she knows him. I talk about him all the time, share pictures, stories etc. She asks me if I am sad that he is in Heaven. I say yes I am. She tells me (reverse roles for a moment...LOL) that he is still with me in spirit. I tell I know, but I want to be able to hug him sometimes. Thats when she gives me a hug. My point is that even tho you cant get that hug from him (which sucks by the way), please KNOW (not just think) that he is with you! I understand you thinking people get tired of hearing things. Unless they have been thru it (and even if they have sometimes), they dont get the pain! You are always welcome with open arms on here to vent, cry, chat or just share some stories! I think you should blow up a balloon, draw as heart on it with a small message & release it up to Josh! Happy Valentines Day!

 

[Allie]

I know exactly what you mean about people wishing you'd quit talking about it. I'm only 9 months out, and people change the subject on me all the time. I don't think most people realize that we have a need to talk about it, to validate their lives, to show they mattered and still belong in day to day conversation. I mention my husband in conversation every single day.

Don't let anyone try to stop you from it. If nothing else, here you can usually find a willing and open audience, even if you feel like it's not relevant. YOu never know who you might be helping.

Holidays all through the first year are torture, I won't lie. I was so bad I thought I'd break down on Arbor Day. Something that has helped me is to always recognize Ry somehow on those special days, as if he were still here. I bought him a present and a card for Valentine's day, I baked him a cake on his birthday, I bought him a little thing for Hanukkah. YOu have to do what feels right for you, that was just a suggestion.

I'll be thinking of you today. The pain never goes away, but it does get less raw somedays. It goes in waves. Hang in there *hug*

 

[Allie]

I know exactly what you mean about people wishing you'd quit talking about it. I'm only 9 months out, and people change the subject on me all the time. I don't think most people realize that we have a need to talk about it, to validate their lives, to show they mattered and still belong in day to day conversation. I mention my husband in conversation every single day.

Don't let anyone try to stop you from it. If nothing else, here you can usually find a willing and open audience, even if you feel like it's not relevant. YOu never know who you might be helping.

Holidays all through the first year are torture, I won't lie. I was so bad I thought I'd break down on Arbor Day. Something that has helped me is to always recognize Ry somehow on those special days, as if he were still here. I bought him a present and a card for Valentine's day, I baked him a cake on his birthday, I bought him a little thing for Hanukkah. YOu have to do what feels right for you, that was just a suggestion.

I'll be thinking of you today. The pain never goes away, but it does get less raw somedays. It goes in waves. Hang in there *hug*

 

[momofjosh]

Allie:
I am so thankful for this website! I wish I had found it a long time ago while Josh was still here and we were dealing with tons of medical stuff. I first found it when when Josh's doctor suggested he go on hospice. (a few weeks before he died) I do have to talk about him a lot because I feel like I don't want anyone to forget him and what a wonderful person he was. Everyone used to tell me I was so strong to be dealing with all of the stuff we had to deal with; but I always thought Josh was the strong one. I just did what I had to since I was his mother. My job was to help him through whatever came our way. Thank you and thank everyone who gives me advice. This website has helped me so much!!! After Josh passed I thought " will never go on that website again." I thought I didn't want to hear anything else about doctors and CF; but shortly after I was drawn to it again and I am so glad I did. There is wonderful support here! Also I realized CF was our life and I can never forget about it nor do I want to anymore. That was our life...and I hope some day I can help someone the way everyone has helped me. I still feel connected to people w/ CF and their family and friends. People who go through similar things have a connection even though they never meet. Thank you, Thank you, Thank you!!

momofjosh

 

[momofjosh]

Allie:
I am so thankful for this website! I wish I had found it a long time ago while Josh was still here and we were dealing with tons of medical stuff. I first found it when when Josh's doctor suggested he go on hospice. (a few weeks before he died) I do have to talk about him a lot because I feel like I don't want anyone to forget him and what a wonderful person he was. Everyone used to tell me I was so strong to be dealing with all of the stuff we had to deal with; but I always thought Josh was the strong one. I just did what I had to since I was his mother. My job was to help him through whatever came our way. Thank you and thank everyone who gives me advice. This website has helped me so much!!! After Josh passed I thought " will never go on that website again." I thought I didn't want to hear anything else about doctors and CF; but shortly after I was drawn to it again and I am so glad I did. There is wonderful support here! Also I realized CF was our life and I can never forget about it nor do I want to anymore. That was our life...and I hope some day I can help someone the way everyone has helped me. I still feel connected to people w/ CF and their family and friends. People who go through similar things have a connection even though they never meet. Thank you, Thank you, Thank you!!

momofjosh

 

[JazzysMom]

Its a funny thing......CF seems to keep people connected forever even when the one who had CF passes on. We are one big, extended family. Most of us have never met each other in person yet we seem so close. I think its because CF has so many aspects & variations to it that there is no other illness (or very few) that can compare to the intensity. I, by no means, what to undermine the severity of other illnesses> Yet we all know that CF is so complicated & sneaky that for the most part unless you have an "obvious" sign of problems like being on O2 in public...... people say we "look" healthy so our fight & problems are minimized. That fight is only truly known among the CF community. I mean <u>TRULY</u> known!

 

[JazzysMom]

Its a funny thing......CF seems to keep people connected forever even when the one who had CF passes on. We are one big, extended family. Most of us have never met each other in person yet we seem so close. I think its because CF has so many aspects & variations to it that there is no other illness (or very few) that can compare to the intensity. I, by no means, what to undermine the severity of other illnesses> Yet we all know that CF is so complicated & sneaky that for the most part unless you have an "obvious" sign of problems like being on O2 in public...... people say we "look" healthy so our fight & problems are minimized. That fight is only truly known among the CF community. I mean <u>TRULY</u> known!

 

[Allie]

I'm the same way, momofjosh, I wish a million times over that I had found this website while Ry was still with me. It would have helped so much for support and answers to questions that I just had to muddle through on my own. After Ry passed, I got rid of everything medical of his. I never wanted to hear the words "Cystic Fibrosis" again. But a few months after he died, it was almost like I needed that part of him in my life too, strange as it sounds.

I love being on here, where I can talk freely about Ry, and all the medical crap we went through, and my information is helpful to others and I feel like it makes Ry's life mean something to people. I hate that it's almost taboo to talk about him, especially his death. Ry was my emotional anchor, so finding my way without him has been ahrd, and there have been so many people on here that have helped. If you ever want to chat, you can contact me at ym AIM addy : RyAllieAhava

 

[Allie]

I'm the same way, momofjosh, I wish a million times over that I had found this website while Ry was still with me. It would have helped so much for support and answers to questions that I just had to muddle through on my own. After Ry passed, I got rid of everything medical of his. I never wanted to hear the words "Cystic Fibrosis" again. But a few months after he died, it was almost like I needed that part of him in my life too, strange as it sounds.

I love being on here, where I can talk freely about Ry, and all the medical crap we went through, and my information is helpful to others and I feel like it makes Ry's life mean something to people. I hate that it's almost taboo to talk about him, especially his death. Ry was my emotional anchor, so finding my way without him has been ahrd, and there have been so many people on here that have helped. If you ever want to chat, you can contact me at ym AIM addy : RyAllieAhava

 

[skh]

I feel the same way. It has almost become an obsession of mine to check this site periodically throughout the day. No matter if I post or not I just feel that this is my support group and this is helping me deal with my daughter's illness. I didn't realize how much I needed this and I am so glad that you are all here!

Sue

 

[skh]

I feel the same way. It has almost become an obsession of mine to check this site periodically throughout the day. No matter if I post or not I just feel that this is my support group and this is helping me deal with my daughter's illness. I didn't realize how much I needed this and I am so glad that you are all here!

Sue