To parents of a CFer

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Countjyro

New member
Dear any parent who has a child with CF,

From time to time I tend to wonder how my parents feel about me having CF. I was wondering if any parents out there would share in how they feel about their child having it. Do you feel guilt? Do you wish you didn't have kids? What is up?

Please do let me know any information you feel, thanks.

Sincerely,
Bryan
 
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JazzysMom

New member
I am a CFer instead of a parent of a CFer, but I can tell U how my Mom feels without her stating her feelings. Her emotions are so obvious. She is 100000% feeling guilty. Defensive in a away at times also. I think she would handle it better if my Dad was alive, but the guilt would still be there. It comes out in tears, certain statements & her actions. I am sure she has no idea about this otherwise she wouldnt let it happen. She wants to appear "in control" & if guilt was showing she would deny it.
 
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MOME2RT

New member
My son is 3 & I do feel guilty. You see, my husband & I have been together since we were 15. We have ALWAYS wanted kids!!!!!!!!! Then when it was time to have kids we had a problem.......It took us a good while to conceive. Everything was awesome until the day Reece was born & we found out "something" was wrong. In the back of our minds we were thinking WHY did we pursue in trying soooooooooooo hard at becoming parents......at that moment. NOW we are sooooooooooo honored to be Reeces' momma & daddy!!!!!!! He is the light of our world & we would change NOTHING about him....God sent him to us "this way" for a reason.....& I think the reason was to show us no matter how much we want something, we are not in control....but there is good in EVERYTHING no matter how BAD you think it could be. Reece is ALWAYS teaching me things.....acceptance, ambition, & most of LOVE. Sure its hard at times & sometimes I think I'm never gonna get through the day....BUT I stop myself & look into those clear blue eyes & see what Reece is going through & WILL go through the REST of his beautiful LIFE. Its NOT about me anymore, its ALL about him. I thank God for him EVERYDAY......Reece knows that he is my DREAM COME TRUE!!!!!!!!!!!!!!!!!!!!!! Leah mommy 2 Reece w/CF <img src="i/expressions/angel_ani.gif" border="0">
 
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anonymous

New member
I am the mother of Mikayla (4) and Elisha (12 weeks) and they both have CF. Seriously it is so hard to put these feelings into words because the moment your child is born all you want to do is protect them. Your whole world is changed and you can't imagine life without them. Then you sit and think about their illness....something which for the moment you can't see and everyone else is completely oblivious to. What can I say it hurts and yes there is moments of guilt. But life is worth living and I will help my girls every step of the way.

When I deal with their day to day routine, everything is fine. I am a strong person and I will do whatever needs to be done...the hard part comes when the kids are asleep, the house is quiet, and all you are left with is your thoughts. My mind will wander down the path of what will happen and I will get upset to know of the trials they will be put through and questions of how is this fair come into play. Then a better reality hits me....they are alive! Both of my girls are an absolute blessing and they have already made this world a better place. I know they have an important journey ahead of them....but then I still wish I could take the CF away.

I guess you might say that a parents feelings on this (at least mine) are very up and down. Mostly up as we need to be positive, but there are always silent downs that occur....if only for a few minutes at a time. Never once has the thought of wishing we didn't have kids enter, just the wish that the disease didn't exist.

I am worried though that my girls may be angry when they eventually find out that it is a genetic condition.
 
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Countjyro

New member
Thank you Diana and Leah! I talk to my parents time to time, but I still never am sure if they are just being nice or what, sometimes it's hard to believe that they are really happy with you. You have convinced me that they are, and I'm ever so grateful!

In response to your post Diana, I don't think you need to worry about being "blamed" by your kids for them having it, I went through that stage and was upset at them, but then I realized that they just wanted kids, and that if their dream has come true, why should I be selfish enough to dislike them for something they didn't know would happen. I doubt your children will be angry with you forever, if anything, only a stage of life.

Once again, thank you both very much!

Sincerely,
Bryan
 
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skh

Guest
My daughter is 14 and we found out she had CF when she was 11. Do I feel guilty? Yes. My daughter is my sunshine and I am so happy that she is a part of my life. But as her mom I feel that I should be able to make everything "right". I struggle with that daily. I hate that she has to do her treatments every morning and evening. I hate that she needs to take her enzymes with her meals. But I love her!

I hope that I am a good support for her and that together we will get through this. I am a firm believer that there will be a cure and CF will stand for "Cure Found". That thought gets me through each day.

I agree with the earlier post that during the day it's not so hard when life is busy. It's during the night when things are quiet and I can't sleep and my mind starts to go off in different directions that I struggle. During the day I need to be the brave one and I think I put up a pretty good front. But at night or when I am the only one in the house that's when it's tough.

Sue
 
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anonymous

New member
My daughter is only 2.5 and while I would do anything to take away her CF, I don't feel guilty for her having it - in my opinion there is no reason to feel guitly. I do feel lots of saddness for her and sometimes for our family in general bc of her CF but she has been the best thing in my 27 years of life so far and I look so forward to having more great experiences with her. I never wish I didn't have her, only that she didn't have CF ( for her own sake not mine). Basically, she just rocks - CF or not!
 
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anonymous

New member
<img src="i/expressions/heart.gif" border="0"> My son 17 years old and has cf. He is the love of my life and is my only son. He was diagnosed when he was one month old because of an I.O. He born premature and was so small. When I saw him with the surgery clothing (for a big man...) and going to surgery I praid to God asking to take him if he was going to suffer...<img src="i/expressions/sad_eyes.gif" border="0">
At that time I didn't know that he has cf neither the doctors... that day all started. I can say that if I knew about cf I won't get pregnant, I'm not talking about abortion, that is against my believes. His father and I got divorce, but if we could stayed together I won't get pregnant again because I don't get the point in giving birth to such amazing people with such a load of suffering.
Maybe I clean my mind by making him live the fullest of life, full adrenaline. He loves surfing and I sent him last summer to Costa Rica...
Enjoy life while you can because we don't know what tomorrow may bring...
If any one of you like the beach, then you are invited to come to Venezuela and ride some waves, my home is your home <img src="i/expressions/face-icon-small-cool.gif" border="0">

Sorry for my bad english... I'm spanish speaking

With Love - A mother of a CF'r
 
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Allie

New member
I can answer for RY's parents. Yes, yes, and yes. Especially his mother, who is one of the softest hearted people I have ever known. When Ry was so sick, she broke down and cried and told Ry she was sorry, which Ry completely did not understand lol. Because she didn't know. But it really bothered her, especially as he had more problems with it. I think some people deal with guilt different/better than others.
 
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anonymous

New member
DS is 2 1/2 and was diagnosed at birth. I don't feel guilty. I did feel a LOT of anger and sorrow at first. I was so afraid he was going to die at first because of his surgery to fix a bowel obstruction. Then I was afraid he'd get sick again. I regret not being able to enjoy his just being a baby. I missed out on a lot of baby milestones because I was concerned with his eating, coughing... I have learned to be a bit more patient. Not to let the little annoying things it life bug me 'cuz there are much much more important things to deal with. Some days I'm really really confident. Other times I'm still scared to death.

DS is such a joy. He's a funny little guy. Yeah, I dread the month that he's on Tobi 'cuz it seems like we're pressed for time. I hate it when the doctors add yet another drug. Reminds me again that he has a disease. But then I tell myself that these treatments will help him.
 
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EmilysMom

New member
There are days when I wish Emily away, but those are days when her temper is up....it has nothing to do with CF !!
She has a nasty temper (like her momm). I had the whole guilt crap thing in the very early days, but it's not like we did this on purpose.....we like every other new parent assumed we would have a nice healthy baby. What a joke that was on us! You never think that your baby won't be healthy and least of all, will be born with such a nasty thing as CF. There are stages (I guess) that you go through after a diagnosis of any kind and we went through all those and then moved on. I wouldn't trade her for the world....the CF has madew her who she is.....A strong, independent, intelligent, well-spoken young woman who takes no sh*t from anyone and speaks her mind.
Go Emily !!!
 
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Emily65Roses

New member
*taps the microphone* I'd like your attention please everyone!! *AHEM!* I would like you all to meet my mother Barbara, president of the Emily Fan Club.

<img src="i/expressions/face-icon-small-wink.gif" border="0"> Ahahahhaa.
 
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Countjyro

New member
It's nice to have a fan club isn't it?

Thank you everybody for your words, sometimes it is hard for me to talk to my parents about these things, and it's nice to know I can put my trust in you all to come through and help out. Your words mean a lot. Thank you.

Sincerely,
Bryan
 
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JazzysMom

New member
Emily have a TEMPER never, never I say! <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-shocked.gif" border="0">
 
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rose4cale

New member
I never really felt guilt and I AM thankful that I was able to have my kids. My son is 3 and when he was diagnosed, I felt like I was being punished, I felt helpless, I felt sorrow, my heart was so heavy, I myself wanted to die at that minute because I couldn't imagine having to watch my child suffer and be sick. Then I kicked my own a$$ back into reality and figured out that feeling sorry for ourselves wasn't going to fix anything and it wasn't going to make him feel better. Everyday is a roller coaster ride. Some days are better then others. I hope that I can build a relationship with both of my kids that they can come to talk to me about anything. I never want them to doubt for a split second my love for them. If I could take CF away from Cale I would. I think every parent would. But since that isn't an option, all I can do is be there for him and teach him. Now, if I were to knowingly become pregnant again, realizing that the potential for CF is there and that child had CF, then the guilt might come into play, because I took a gamble. But with Cale, I had no clue.
 
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rose4cale

New member
I never really felt guilt and I AM thankful that I was able to have my kids. My son is 3 and when he was diagnosed, I felt like I was being punished, I felt helpless, I felt sorrow, my heart was so heavy, I myself wanted to die at that minute because I couldn't imagine having to watch my child suffer and be sick. Then I kicked my own a$$ back into reality and figured out that feeling sorry for ourselves wasn't going to fix anything and it wasn't going to make him feel better. Everyday is a roller coaster ride. Some days are better then others. I hope that I can build a relationship with both of my kids that they can come to talk to me about anything. I never want them to doubt for a split second my love for them. If I could take CF away from Cale I would. I think every parent would. But since that isn't an option, all I can do is be there for him and teach him. Now, if I were to knowingly become pregnant again, realizing that the potential for CF is there and that child had CF, then the guilt might come into play, because I took a gamble. But with Cale, I had no clue.
 
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