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for the parents of cf'ers

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icefisherman

New member
First off I want to say I'm sorry to any parent who has not felt they have recieved the kind of support they need. All hell has broken out in the Adult forum, and I want all of you to know that people still care, and can understand what you are going through. I think the reason for the difference in opinions is the way that we look at cf. Parents are naturally going to be very optimistic. Us with cf on the otherhand desperatly need to find a way to deal with this disease. It has helped me to be able to vent on here about everyday life with cf, and have understanding. this site is for all of us, no matter what our outlook on life is. I hope we can all get along and understand eachother. I know one person left because of things said, and that just shouldn't happen. So just remember, our worlds are different, but our goal is the same. Thanks for your time.
Ben
23/cf
 
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DEES4

New member
Thanks for all you said....I did read some of things going on in the adult forum. I am really shocked at some of the things people are saying to each other. Maybe we do look at cf different (parents of cf children and those who have cf) but are we not all in the same battle here? Everyone in the world has varying opinions on just about every topic under the sun. I just dont understand why we cant just agree to disagree and respect each others opinion. These boards were not created for fighting and making each other feel even worse. The whole reason I ever started posting was to get support from people who understand. I was very down after reading what some of the people had to say to one another on the adult board. I will be staying on the family one from now on. Thanks Again!!
Carrie
Mom to
Daniel (no cf)
Emily (no cf)
Ethan (no cf)
Sawyer (cf) 2 1/2 years old
 
J

Jane

Digital opinion leader
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>icefisherman</b></i>

<u><i><b> our worlds are different, but our goal is the same. </b></i></u>

Ben

23/cf</end quote></div>


This should be a banner at the top of the forum page!! Good one Ben!
 
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anonymous

New member
Thanks Ben...your response here and on the original post was awesome...you are exactly what this site needs...I'm sure that you have made a lot of people feel much better...especially me...: )
 
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Seana30

New member
Thank you Ben.

Your post means a lot.

"our worlds are different, but our goal is the same"

WELL SAID!!

Seana
 
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dyza

New member
nice one Ben.
I fortunately am so thick skinned ( its the Scottish weather ) that I can read all posts, yes it bothers me....sometimes..... but on the other hand we do need to know what can happen in the future, but I am still optomistic about this, we have to be, we as parents of youngsters have to instill well-being in our kids for their future when they are old enough to do things for themselves, my son will always be my son, but he will become his own man.

Incidently my wife, Liz, finds it hard to read the posts, I try and steer her away from stuff that I know will upset her. So I guess I do all the research.
 
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JRPandTJP

New member
Choose not to read the adult board. For a long time and even still, I shelter myself from negative vibes. I am choosy about the topics I view and respond to narrowing them to only those I feel I can share in and provide help with. After our son was dx, it took a year before I could even come here...it was too painful.

in my opinion, LIFE IS TOO SHORT to have it burdened with negativity...having a child with CF has shown this to me even more clearly. Negativity can suck you in and not let go. CF adults absolutely need a place to vent, find understanding and support. The stress of making choices for oneself coupled with life in general must be tremendous at times. I think this is why we lall ash out. I also think if this was person to person in the real world, people would lead with their hearts more and respect each other. It's like driving in a car, there is a certain protection that comes from being online...this is the tough part of internet forums in my opinion.

Lead with your heart as you are and things will be okay.
 
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anonymous

New member
<img src="i/expressions/face-icon-small-sad.gif" border="0">Hi my name is Tara and I have four children my second child has cf and the other three was tested but came out of it with not having cf. The doctors told me that it's a big chance that their children may have the disease. Did your doctor tel you the same
 
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DEES4

New member
Hi Tara! I also have four children and my youngest was diagnosed at two weeks old with cf. My other children do not have cf. I know that there is a good chance that my other three may be carriers but we have not done the genetic test on them to find out. I will most definitely encourage my children to have genetic testing before having children of their own. I imagine that it will not be hard to persuade them to do this after watching what their little brother has to go through (he is doing great but I am talking about the everyday routine of meds and treatments one has to endure that has cf).
Carrie
Mom to
Daniel (no cf)
Emily (no cf)
Ethan (no cf)
Sawyer (cf)
 
T

thelizardqueen

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

The doctors told me that it's a big chance that their children may have the disease. Did your doctor tel you the same</end quote></div>

If your child has CF, and has children with someone who isn't a carrier of the CF gene, then they will not have CF kids, but rather their kid will be a carrier. If your child with CF decides to have kids with someone who is a carrier, then there's a 50% chance that their child will have CF.

If your carrier children decide to have kids with a carrier, then I believe you have a 25% chance of having kids with CF. If a carrier decides to have kids with a non-carrier, then their child will only be a carrier.

In other words, you need 2 seperate copies of the defective gene to have a CF kid. So for your doctor to say that most likely your kids kids will have CF is not true. So long as carrier testing is done and comes back negative, there should be no problem at all.
 
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anonymous

New member
hi im jo my daughter is 8months old i found out she ad cf wen she was 4months we were in and out of hospital cos didnt know wot was wrong they did all these tests wen they came bk sayin she ad cf i was very upset didnt know wot 2 do i just want 2 talk 2 some1 thanks from jo nicoles mum
 
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anonymous

New member
Hi this Tara responding back to you, thank you for answering my questions. How and when do you talk to your other children about their brother's illness. I told my oldest child that her little brother is sick and what he had and how he received it, but how do you know that they understand I know she's the oldest but she's still a child and I know it's hard for her to cope with everything. I tried to explain to my at the time three year old because he wanted to know why his big brother was taken alot of medication. I son with cf is doing very well. Sometimes I still cry about the whole cf thing and I wonder what I did wrong. Even though I know it was nothing I did wrong. I just can't see my life without him.

Shabrinna 11
Adrian (cf) 6
Isaiah 4
Katrina 5 months
 
A

anonymous

New member
Hi jo I went through the same thing as you did with my son. He sarted getting sick at the age of five months. When went through all the hospital trips. They kept saying that he had asthma but veryone never thought that it could of been cf that he had. They kept saying that his body wasn't taking to any of the meds that they were giving him and that they was missing something. They finally called me into their office and said that they thought that it was best to test him for cf even though he didn't seem like he had it.They gave him the test and then we was called back to the doctor's office a week before Thanksgiven in 2001. I will never forget that moment when the result was read to me. I broke down and cried they had to take my son out of the room so that I could gather myself together. You know that I didn't know what cf was until that moment. Then they told me that he had asthma too. All I could thank of was my son will be gone from me forever. Than I finally started looking up information about cf. I started feeling better, after finding out I had other people around me that known people that had children that had cf and found away to deal with it. If they could do it than so can I had to be stronge for not only me but for the entire family, as well as him. I'm glade I found this website to help me too.
Tara
mother of
Shabrinna 11
Adrian (cf) 6
Isaiah 4
Katrina 5 months
 
E

EnergyGal

New member
Hi Ben

I usually do not post on the family forum but for some reason saw your post and decided to read it. I love your quote.

I sometimes think it is good to talk about all sides of the equation about life but it is best to focus on the goal of living, the best way possible. That is all we have control over. Living in the moment is what living is about.

We all can share so much.
 
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Alyssa

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

The doctors told me that it's a big chance that their children may have the disease. Did your doctor tel you the same</end quote></div>


<b>To Tara -- your doctor did not explain this to you in a very well </b>-- ditto to what Liz and the others have probably already said (I didn't really read them all through) Just wanted to clarify his wording was not all that accurate -- there are some pretty straight forward issues with this genetic disease. Yes, your child with CF has both genes so they will always pass on one gene to their child -- but the other piece of the puzzle has to do with the partner that they choose.

Here is a link to Julies page that has the genetic chart that shows exactly the chances (25%, 25% and 50%) for different scenarios depending on who is a carrier, non carrier or person with CF. Please check it out.


<a target=_blank class=ftalternatingbarlinklarge href="http://cysticfibrosismaleinfertility.com/Where_to_begin_carrierTesting.html">http://cysticfibrosismaleinfer...in_carrierTesting.html</a>
 
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