Advice Requested

[mamaScarlett]

As an adopted Cfer, who is now an adult and 'been through the fire' so to speak I can tell you from the bottom of my heart all that will matter to your child, regardless of when you die is knowing that he/she had a parent that loved them with all their heart and fought for them. (speaking strictly of the adoption issue)
My biological parents both chose to leave me, and I was adopted at 7. There is no connection between that real abandonment and losing a parent that is fighting for you, if that gives you any comfort from an adopted person's perspective.
Obviously not having lost a parent to death I can't speak on that, only imagine.
Our daughter is almost 4 and Cf is part of our familys normal. She sees me do all my treatments, take pills, she's not afraid of my purple faced coughing spasms. Its important to me that she does see me taking care of myself 1. So she knows that mommy has always fought hard with every ounce of my being to be here. and 2. So that she learns the value of hard work to fight her own battles one day, whatever they may be.
One day at her cousins house, she asked 'where's Aunt Dina's vest?'. As if every mom has one! She's asked why I have to go to the doctor or take medicine and for now a simple child's explanation is all thats needed. ('to help keep my lungs healthy...etc') Usually thats enough, but if she keeps asking I keep answering until she understands in that moment what a 4 yr can understand. I've also brought her to a few checkups bc its important to me that the doctor/hospital is never the enemy or scary. Its all part of our team, and our familys routine. As time goes by we'll keep talking, keep it open, and keep re-evaluating how to handle things.

 

[mamaScarlett]

As an adopted Cfer, who is now an adult and 'been through the fire' so to speak I can tell you from the bottom of my heart all that will matter to your child, regardless of when you die is knowing that he/she had a parent that loved them with all their heart and fought for them. (speaking strictly of the adoption issue)
My biological parents both chose to leave me, and I was adopted at 7. There is no connection between that real abandonment and losing a parent that is fighting for you, if that gives you any comfort from an adopted person's perspective.
Obviously not having lost a parent to death I can't speak on that, only imagine.
Our daughter is almost 4 and Cf is part of our familys normal. She sees me do all my treatments, take pills, she's not afraid of my purple faced coughing spasms. Its important to me that she does see me taking care of myself 1. So she knows that mommy has always fought hard with every ounce of my being to be here. and 2. So that she learns the value of hard work to fight her own battles one day, whatever they may be.
One day at her cousins house, she asked 'where's Aunt Dina's vest?'. As if every mom has one! She's asked why I have to go to the doctor or take medicine and for now a simple child's explanation is all thats needed. ('to help keep my lungs healthy...etc') Usually thats enough, but if she keeps asking I keep answering until she understands in that moment what a 4 yr can understand. I've also brought her to a few checkups bc its important to me that the doctor/hospital is never the enemy or scary. Its all part of our team, and our familys routine. As time goes by we'll keep talking, keep it open, and keep re-evaluating how to handle things.

 

[mamaScarlett]

<p>As an adopted Cfer, who is now an adult and 'been through the fire' so to speak I can tell you from the bottom of my heart all that will matter to your child, regardless of when you die is knowing that he/she had a parent that loved them with all their heart and fought for them. (speaking strictly of the adoption issue)
<p>My biological parents both chose to leave me, and I was adopted at 7. There is no connection between that real abandonment and losing a parent that is fighting for you, if that gives you any comfort from an adopted person's perspective.
<p>Obviously not having lost a parent to death I can't speak on that, only imagine.
<p>Our daughter is almost 4 and Cf is part of our familys normal. She sees me do all my treatments, take pills, she's not afraid of my purple faced coughing spasms. Its important to me that she does see me taking care of myself 1. So she knows that mommy has always fought hard with every ounce of my being to be here. and 2. So that she learns the value of hard work to fight her own battles one day, whatever they may be.
<p>One day at her cousins house, she asked 'where's Aunt Dina's vest?'. As if every mom has one! She's asked why I have to go to the doctor or take medicine and for now a simple child's explanation is all thats needed. ('to help keep my lungs healthy...etc') Usually thats enough, but if she keeps asking I keep answering until she understands in that moment what a 4 yr can understand. I've also brought her to a few checkups bc its important to me that the doctor/hospital is never the enemy or scary. Its all part of our team, and our familys routine. As time goes by we'll keep talking, keep it open, and keep re-evaluating how to handle things.

 

[dbsholes]

I am 44 with cf and a 10 year old daughter - who is the genetic offspring of my brother. I know that everyone has to figure this out for themselves but I do have a strong opinion about it and I'm going to share it. I approached the issue from the following standpoint: would it be better for a child to suddenly learn - at the age of sixteen - that they were adopted, or to have known it all along? To me it's a no-brainer: you don't hide information from your child to "protect" them because all you are doing is setting them up for a more difficult time later on. My daughter has always known that I have cf, but has learned the details of what that means at her own age-appropriate pace. Similarly, she has always known that I am actually her uncle and her uncle is actually her father (genetically at least) - and she has a great deal of fun confusing friends, teachers and classmates with this information, even though her understanding of it has also developed at her own age-appropriate pace. And naturally she has a very special and close relationship with my brother (her "Duncle") which will certainly come in handy if I do die early in her life - a spare father if you will. And she has a three-year-old half-sister/half-cousin whom she absolutely adores.

I always think it is best to treat kids as fully functioning people capable of handling complex and difficult information. They CAN handle it. Last night I mentioned that my lungs have been hurting for the past couple of days and my daughter very matter-of-factly asked if maybe I should do an extra nebulizer treatment. No drama, no fear - just life. And I believe that most of the time when parents say they are trying to "protect" their kids, the person they are really trying to protect is themselves. Adults fear a great deal. Children in reality fear very little - until it is taught to them by fearful adults.

In your case Ana, since your daughter is already eight years old and apparently knows very little about the realities of your condition, I suggest talking to a child psychologist to figure out the best way to begin providing information that she has a right to know.

David

 

[dbsholes]

I am 44 with cf and a 10 year old daughter - who is the genetic offspring of my brother. I know that everyone has to figure this out for themselves but I do have a strong opinion about it and I'm going to share it. I approached the issue from the following standpoint: would it be better for a child to suddenly learn - at the age of sixteen - that they were adopted, or to have known it all along? To me it's a no-brainer: you don't hide information from your child to "protect" them because all you are doing is setting them up for a more difficult time later on. My daughter has always known that I have cf, but has learned the details of what that means at her own age-appropriate pace. Similarly, she has always known that I am actually her uncle and her uncle is actually her father (genetically at least) - and she has a great deal of fun confusing friends, teachers and classmates with this information, even though her understanding of it has also developed at her own age-appropriate pace. And naturally she has a very special and close relationship with my brother (her "Duncle") which will certainly come in handy if I do die early in her life - a spare father if you will. And she has a three-year-old half-sister/half-cousin whom she absolutely adores.

I always think it is best to treat kids as fully functioning people capable of handling complex and difficult information. They CAN handle it. Last night I mentioned that my lungs have been hurting for the past couple of days and my daughter very matter-of-factly asked if maybe I should do an extra nebulizer treatment. No drama, no fear - just life. And I believe that most of the time when parents say they are trying to "protect" their kids, the person they are really trying to protect is themselves. Adults fear a great deal. Children in reality fear very little - until it is taught to them by fearful adults.

In your case Ana, since your daughter is already eight years old and apparently knows very little about the realities of your condition, I suggest talking to a child psychologist to figure out the best way to begin providing information that she has a right to know.

David

 

[dbsholes]

I am 44 with cf and a 10 year old daughter - who is the genetic offspring of my brother. I know that everyone has to figure this out for themselves but I do have a strong opinion about it and I'm going to share it. I approached the issue from the following standpoint: would it be better for a child to suddenly learn - at the age of sixteen - that they were adopted, or to have known it all along? To me it's a no-brainer: you don't hide information from your child to "protect" them because all you are doing is setting them up for a more difficult time later on. My daughter has always known that I have cf, but has learned the details of what that means at her own age-appropriate pace. Similarly, she has always known that I am actually her uncle and her uncle is actually her father (genetically at least) - and she has a great deal of fun confusing friends, teachers and classmates with this information, even though her understanding of it has also developed at her own age-appropriate pace. And naturally she has a very special and close relationship with my brother (her "Duncle") which will certainly come in handy if I do die early in her life - a spare father if you will. And she has a three-year-old half-sister/half-cousin whom she absolutely adores.
<br />
<br />I always think it is best to treat kids as fully functioning people capable of handling complex and difficult information. They CAN handle it. Last night I mentioned that my lungs have been hurting for the past couple of days and my daughter very matter-of-factly asked if maybe I should do an extra nebulizer treatment. No drama, no fear - just life. And I believe that most of the time when parents say they are trying to "protect" their kids, the person they are really trying to protect is themselves. Adults fear a great deal. Children in reality fear very little - until it is taught to them by fearful adults.
<br />
<br />In your case Ana, since your daughter is already eight years old and apparently knows very little about the realities of your condition, I suggest talking to a child psychologist to figure out the best way to begin providing information that she has a right to know.
<br />
<br />David

 

[TleighsHusband]

Here is another possible point of view. How old were you when you found out the realities for your own cf? These issues (and adoption with her brother being adopted) were never hidden but were never the focus of attention. Perhaps looking at how you handled the realities as a kid wil help you talk with your own children.

 

[TleighsHusband]

Here is another possible point of view. How old were you when you found out the realities for your own cf? These issues (and adoption with her brother being adopted) were never hidden but were never the focus of attention. Perhaps looking at how you handled the realities as a kid wil help you talk with your own children.

 

[TleighsHusband]

Here is another possible point of view. How old were you when you found out the realities for your own cf? These issues (and adoption with her brother being adopted) were never hidden but were never the focus of attention. Perhaps looking at how you handled the realities as a kid wil help you talk with your own children.

 

[TleighsHusband]

Here is another possible point of view. How old were you when you found out the realities for your own cf? These issues (and adoption with her brother being adopted) were never hidden but were never the focus of attention. Perhaps looking at how you handled the realities as a kid wil help you talk with your own children.

 

[TleighsHusband]

Here is another possible point of view. How old were you when you found out the realities for your own cf? These issues (and adoption with her brother being adopted) were never hidden but were never the focus of attention. Perhaps looking at how you handled the realities as a kid wil help you talk with your own children.

 

[TleighsHusband]

Here is another possible point of view. How old were you when you found out the realities for your own cf? These issues (and adoption with her brother being adopted) were never hidden but were never the focus of attention. Perhaps looking at how you handled the realities as a kid wil help you talk with your own children.

 

[Hammer]

Well I have some advice on this topic. I am 31 and have a 12 year old step-daughter who knows that I have CF and knew that I had to do things differently to take care of myself. Last October I got really sick and went down hill really quickly. Ended up on a vent and had a life saving transplant. ( I am doing great now!) The reality of how sick I really was all fell on her within a couple of months. She told me herself a few weeks ago that she wished someone would have told her how sick I really was. I don't think it would have prepared her for truely was yet to come but she made me promise from now on, if I am getting sick again that I tell her. I told her that I would be upfront with her. I told her we didn't tell her everything because we didn't know for sure what would happen and that I didn't want to scare her. We actually did have a small talk about that someday I may die from the disease. I told her that I would work really hard to stay healthy. She was upset about this and really didn't want to talk about it but I thought it was necessary. I told her that we will keep hoping and praying everyday that these new lungs that I have keep working and that the doctors keep coming up with new meds to keep me healthy. I told her we will just be hoping like we did before. Than we talked about how lucky we are that I am healthy now and that we get to spend so much time together. I told her how lucky I was to have her and that we have plenty of time to do lots of fun things. We ended on a good and positive note. It was tough, we actually had the talk in the car when it was just the two of us. I am glad we did it. I really did feel bad that this little girl had to learn so much in a time of crisis. I never even talked about transplant with her before than. I think little bits of info at a time is a good thing. The social worker at the hospital was also a great resource to talk with as a family while we were in the hospital and I was getting sicker. I recommend getting your social workers advice.

 

[Hammer]

Well I have some advice on this topic. I am 31 and have a 12 year old step-daughter who knows that I have CF and knew that I had to do things differently to take care of myself. Last October I got really sick and went down hill really quickly. Ended up on a vent and had a life saving transplant. ( I am doing great now!) The reality of how sick I really was all fell on her within a couple of months. She told me herself a few weeks ago that she wished someone would have told her how sick I really was. I don't think it would have prepared her for truely was yet to come but she made me promise from now on, if I am getting sick again that I tell her. I told her that I would be upfront with her. I told her we didn't tell her everything because we didn't know for sure what would happen and that I didn't want to scare her. We actually did have a small talk about that someday I may die from the disease. I told her that I would work really hard to stay healthy. She was upset about this and really didn't want to talk about it but I thought it was necessary. I told her that we will keep hoping and praying everyday that these new lungs that I have keep working and that the doctors keep coming up with new meds to keep me healthy. I told her we will just be hoping like we did before. Than we talked about how lucky we are that I am healthy now and that we get to spend so much time together. I told her how lucky I was to have her and that we have plenty of time to do lots of fun things. We ended on a good and positive note. It was tough, we actually had the talk in the car when it was just the two of us. I am glad we did it. I really did feel bad that this little girl had to learn so much in a time of crisis. I never even talked about transplant with her before than. I think little bits of info at a time is a good thing. The social worker at the hospital was also a great resource to talk with as a family while we were in the hospital and I was getting sicker. I recommend getting your social workers advice.

 

[Hammer]

Well I have some advice on this topic. I am 31 and have a 12 year old step-daughter who knows that I have CF and knew that I had to do things differently to take care of myself. Last October I got really sick and went down hill really quickly. Ended up on a vent and had a life saving transplant. ( I am doing great now!) The reality of how sick I really was all fell on her within a couple of months. She told me herself a few weeks ago that she wished someone would have told her how sick I really was. I don't think it would have prepared her for truely was yet to come but she made me promise from now on, if I am getting sick again that I tell her. I told her that I would be upfront with her. I told her we didn't tell her everything because we didn't know for sure what would happen and that I didn't want to scare her. We actually did have a small talk about that someday I may die from the disease. I told her that I would work really hard to stay healthy. She was upset about this and really didn't want to talk about it but I thought it was necessary. I told her that we will keep hoping and praying everyday that these new lungs that I have keep working and that the doctors keep coming up with new meds to keep me healthy. I told her we will just be hoping like we did before. Than we talked about how lucky we are that I am healthy now and that we get to spend so much time together. I told her how lucky I was to have her and that we have plenty of time to do lots of fun things. We ended on a good and positive note. It was tough, we actually had the talk in the car when it was just the two of us. I am glad we did it. I really did feel bad that this little girl had to learn so much in a time of crisis. I never even talked about transplant with her before than. I think little bits of info at a time is a good thing. The social worker at the hospital was also a great resource to talk with as a family while we were in the hospital and I was getting sicker. I recommend getting your social workers advice.
<br />

 

[StillFighting]

Thanks for everyone`s perspective..if I can sum up from what I am understanding is to provide information on a need to know basis and be honest about the information provided.

My daughter does see me do all my treatments and knows when I go to the hospital. She knows that I am doing this to keep my lungs healthy. As she asks questions, I will continue to discuss the issue with her.

mamaScarlett, I am surprised to read that your biological parents abandoned you at the age of 7. That must have been a devastating experience for you! I am having difficulties understanding and I hope that you were able to adapt with such knowledge.

Keep well,

Ana

 

[StillFighting]

Thanks for everyone`s perspective..if I can sum up from what I am understanding is to provide information on a need to know basis and be honest about the information provided.

My daughter does see me do all my treatments and knows when I go to the hospital. She knows that I am doing this to keep my lungs healthy. As she asks questions, I will continue to discuss the issue with her.

mamaScarlett, I am surprised to read that your biological parents abandoned you at the age of 7. That must have been a devastating experience for you! I am having difficulties understanding and I hope that you were able to adapt with such knowledge.

Keep well,

Ana

 

[StillFighting]

Thanks for everyone`s perspective..if I can sum up from what I am understanding is to provide information on a need to know basis and be honest about the information provided.
<br />
<br />My daughter does see me do all my treatments and knows when I go to the hospital. She knows that I am doing this to keep my lungs healthy. As she asks questions, I will continue to discuss the issue with her.
<br />
<br />mamaScarlett, I am surprised to read that your biological parents abandoned you at the age of 7. That must have been a devastating experience for you! I am having difficulties understanding and I hope that you were able to adapt with such knowledge.
<br />
<br />Keep well,
<br />
<br />Ana
<br />