daughters diagnosed in 2005

[froggymama]

Lisa, My daughter was diagnosed over a year ago and I still have a hard time dealing with the reality of CF. It's just unfathomable to have a child with this disease, and it's not surprising you are still dealing with the emotions that come with that. I find solace in writing about it, talking to other moms and dads, putting my energy into raising money for CF, and this helps me feel like I'm taking control over an otherwise uncontrollable situation. And of course there is hope. Hope for that elusive cure, that I believe in my heart is only a few years away. In the mean time, I try to enjoy every moment and tell myself everyday that my child is a miracle and I am sooooo very lucky to be her mama! Peace. xoxo

 

[GrammyB]

Thank you, Amysmom, for your reply. My little granddaughter was born last August, diagnosed within her first two weeks of life, because of the screening blood test in VA. She is doing very well so far. I found this forum and have read regularly, but I've found recently that I need to withdraw a bit. My heart breaks at many of the stories, and at the same time I am so amazed at the pluck of the young adults on here who have learned to live with this condition and have amazing outlooks.

I applaud you all and pray for you daily.

 

[GrammyB]

Thank you, Amysmom, for your reply. My little granddaughter was born last August, diagnosed within her first two weeks of life, because of the screening blood test in VA. She is doing very well so far. I found this forum and have read regularly, but I've found recently that I need to withdraw a bit. My heart breaks at many of the stories, and at the same time I am so amazed at the pluck of the young adults on here who have learned to live with this condition and have amazing outlooks.

I applaud you all and pray for you daily.

 

[GrammyB]

Thank you, Amysmom, for your reply. My little granddaughter was born last August, diagnosed within her first two weeks of life, because of the screening blood test in VA. She is doing very well so far. I found this forum and have read regularly, but I've found recently that I need to withdraw a bit. My heart breaks at many of the stories, and at the same time I am so amazed at the pluck of the young adults on here who have learned to live with this condition and have amazing outlooks.

I applaud you all and pray for you daily.

 

[tammykrumrey]

Lisa,
I, too, have two daughters, who both have CF. My story sounds a bit like yours in the fact that it took a while for the first to be dx with CF (a long story...) and I was pregnant with my second at the time of the dx. The difference is that CF had already been a part of my life for about 7 years when my oldest was dx, because my sisters son was born with blockage at birth due to CF. I knew a lot about the disease, just never in my wildest dreams thought that I too would be a carrier, and marry a carrier. I am now much more educated, thanks to the internet, and sites like this.

Even though my family had been dealing with CF for 7 years, I was still in complete shock with my daughters own CF dx. I didn't see it coming, and was in denial as well, even though my sister had mentioned to me at least once that she thought Kayla should be tested for CF.

I do think it gets a bit easier. Or maybe you just become numb to it. I don't really know. Both of my girls have done pretty well. My oldest has only had one hospital stay due to lung issues (had several during the first few years because of digestive issues since she was dx late). My youngest has never had a hospital stay, but I am afraid that the time may be drawing near...

Even before my daughters were born, I was helping raise money for the CF Foundation, because of my nephew. I volunteered where I could, and participated in the events that I enjoyed. I was actually asked to help organize a big fund raising event in honor of my nephew, and was in the process of that when my oldest was dx. And after that, I never looked back.

I guess one of my ways of handling it is by staying involved in fundraising for the CFF. It just seems to help me. I love educating people about CF. It just has become part of who I am, as well as my family. My girls hear and see me working on it a lot. They know that I am doing everything that I can, as well as taking care of them and teaching them how to do what they can to keep themselves better.

I know it is hard, especially when all of your children have CF. I just know that God has a plan, I am not sure what exactly it is though<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[tammykrumrey]

Lisa,
I, too, have two daughters, who both have CF. My story sounds a bit like yours in the fact that it took a while for the first to be dx with CF (a long story...) and I was pregnant with my second at the time of the dx. The difference is that CF had already been a part of my life for about 7 years when my oldest was dx, because my sisters son was born with blockage at birth due to CF. I knew a lot about the disease, just never in my wildest dreams thought that I too would be a carrier, and marry a carrier. I am now much more educated, thanks to the internet, and sites like this.

Even though my family had been dealing with CF for 7 years, I was still in complete shock with my daughters own CF dx. I didn't see it coming, and was in denial as well, even though my sister had mentioned to me at least once that she thought Kayla should be tested for CF.

I do think it gets a bit easier. Or maybe you just become numb to it. I don't really know. Both of my girls have done pretty well. My oldest has only had one hospital stay due to lung issues (had several during the first few years because of digestive issues since she was dx late). My youngest has never had a hospital stay, but I am afraid that the time may be drawing near...

Even before my daughters were born, I was helping raise money for the CF Foundation, because of my nephew. I volunteered where I could, and participated in the events that I enjoyed. I was actually asked to help organize a big fund raising event in honor of my nephew, and was in the process of that when my oldest was dx. And after that, I never looked back.

I guess one of my ways of handling it is by staying involved in fundraising for the CFF. It just seems to help me. I love educating people about CF. It just has become part of who I am, as well as my family. My girls hear and see me working on it a lot. They know that I am doing everything that I can, as well as taking care of them and teaching them how to do what they can to keep themselves better.

I know it is hard, especially when all of your children have CF. I just know that God has a plan, I am not sure what exactly it is though<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[tammykrumrey]

Lisa,
I, too, have two daughters, who both have CF. My story sounds a bit like yours in the fact that it took a while for the first to be dx with CF (a long story...) and I was pregnant with my second at the time of the dx. The difference is that CF had already been a part of my life for about 7 years when my oldest was dx, because my sisters son was born with blockage at birth due to CF. I knew a lot about the disease, just never in my wildest dreams thought that I too would be a carrier, and marry a carrier. I am now much more educated, thanks to the internet, and sites like this.

Even though my family had been dealing with CF for 7 years, I was still in complete shock with my daughters own CF dx. I didn't see it coming, and was in denial as well, even though my sister had mentioned to me at least once that she thought Kayla should be tested for CF.

I do think it gets a bit easier. Or maybe you just become numb to it. I don't really know. Both of my girls have done pretty well. My oldest has only had one hospital stay due to lung issues (had several during the first few years because of digestive issues since she was dx late). My youngest has never had a hospital stay, but I am afraid that the time may be drawing near...

Even before my daughters were born, I was helping raise money for the CF Foundation, because of my nephew. I volunteered where I could, and participated in the events that I enjoyed. I was actually asked to help organize a big fund raising event in honor of my nephew, and was in the process of that when my oldest was dx. And after that, I never looked back.

I guess one of my ways of handling it is by staying involved in fundraising for the CFF. It just seems to help me. I love educating people about CF. It just has become part of who I am, as well as my family. My girls hear and see me working on it a lot. They know that I am doing everything that I can, as well as taking care of them and teaching them how to do what they can to keep themselves better.

I know it is hard, especially when all of your children have CF. I just know that God has a plan, I am not sure what exactly it is though<img src="i/expressions/face-icon-small-smile.gif" border="0">