My best friend called and her 3 year old son has been diagnosed with CF..

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anonymous

New member
CFHockeyMom, I don't think this person is coming here so we can be judgemental towards her friend. She has come here for support and your situation and circumstances may be VERY different than her friends. I don't think it's your place to judge her feelings, she came her for support and advice so let's provide her with that.

I can come up with many rationalizations for why her friend may feel this way. Guilt because she feels it is her fault (we all know it isn't), fear that her child may not live a long and productive life (we all know this is not true), anger that this happened to her family and her child... Also, her lack of knowledge may lead her to believe this child may not live long (which again, we all know is not the truth under MOST circumstances) and it's really hard for some people to bond with those who they believe they may loose soon. Keep in mind none of us have actually talked to the friend and the truth of a statement can frequently get "lost in translation". Maybe that's what the friend really meant, maybe she provided a bit more information to her friend, as to why she felt that way. We may never know, but I don't think we should attack her feelings at such a tender time.

I understand that you felt differently when your child was diagnosed, but as Jenica said- everybody grieves differently. Maybe she doesn't have a husband to turn to like you did. Who knows.

Julie (wife to Mark 24 w/CF)
 
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anonymous

New member
I really think that it is the shock of it all... She is really just having a hard time seeing the situation years down the road. I think she feels that he will die "soon" and this is her way of dealing with it... I can't critize her because I HAVE NO IDEA what she is going through... So, I can't understand her reasoning either... but I do pray for her and I do keep hoping that she will snap out of it and realize what she has right now... but for now, I am letting her get mad and throw tantrums... later, I will try to help her through the "issues" at hand... Thanks so much for all of your wonderful advice
 
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anonymous

New member
Amy, was that last post you? It sounds like you are a really good friend and it is wonderful that you are here. If she is worried about what is "down the road" please email me, or have her email me (when she is ready). My husband is 24, has CF and leads a very normal and active life-as most CFers do. If you, or she would like to hear about the few aspects of CF that do somewhat limit his activities (only on occasion) please email me. If she is not ready to hear it now, at least you can have our info for when she is. division902@hotmail.com. There are also quite a few other adult CFers on here who lead very normal lives and I know would be willing to talk to you and or your friend. Emily, Coll or Luke (that is all that is coming to my mind right now) are great people to talk to as well.

I can only imagine that this is her way of greiving and is somewhat "healty" in the behaviroal pattern of dealing with this. In my opinion, if she is still this way in a week or so, she could probably use a reality check from a good friend like you, but for now it seems as though you are doing all the right things and just being a supportive friend. I wish I knew more good people like you,

Take care,

Julie (wife to Mark 24 w/CF)
 
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Emily65Roses

New member
Just figured I'd verify what Julie said. I won't verify that I'm a great person to talk to, because that's a matter of opinion. Haha. But I am always very much right here if anyone wants to talk to me... about anything at all. <img src="i/expressions/rose.gif" border="0">
 
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EmilysMom

New member
Amy,
Me too! ALways right here. And I have to admit, I heard the same comment from a mom when Emily was little about "not wanting to get too close to her son". and didn't really understand it at the time, but that was her way of dealing with the issue at the time. Your friend is in a serious emotional state right now. Things may be said that aren't meant or said and misinterpreted. Let her vent and just be there for her. You sound like a very good friend !!
 
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anonymous

New member
Hi Amy

Everyone's situation w/CF is different. It's unfair for any of us to judge what your friend is going through. I think a lot of moms experience feelings of not wanting to bond with their child immediately after finding out they have cf. It doesn't make your friend any less of a mom. My heart aches for her. This must be so difficult.

May I make a suggestion? Encourage your friend to talk with a professional. This helped my family and I so much as we learned to come to terms with our son's CF diagnosis. Try and do some research to find an expert who deals with chronic illnesses (you could try getting a referral from either your friend's cf clinic social worker or local children's hospital - - I wouldn't just try to find a therapist through the phone book). Some problems are just too overwhelming to deal with on your own and it sounds like your friend is really struggling with this one. She's lucky to have you as a listening ear.

Carey
 
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anonymous

New member
Just wanted to make sure you knew I didn't forge you. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Julie
 
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anonymous

New member
Hi I'm Clare and am the friend of a mum with the 18 month old, we live in England I don't know if any of you do? I think your site is fantastic and have told my friend about it but she is not ready to come and look yet so I shall. thanks for everything you've written it is so helpful and enlightening
 
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anonymous

New member
Please do stick around, you may find her glancing over your shoulder one of these days. My husband and I are not from england, but I know there are a few on this site who are. Have you located the UK CF site? if not, I will try to see if I can find the link for you-it may prove to be benificial if you/your friend (when she is ready) want to talk to some other families with CF children. Take care and please keep us updated on how your friend's little one is doing.

Julie (wife to Mark 24 w/CF)
 
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Emily65Roses

New member
There's also a UK site for CFers called People with Cystic Fibrosis. Here's the link:
<a target=new class=ftalternatingbarlinklarge href="http://pwcf.net/
">http://pwcf.net/
</a>
 
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anonymous

New member
Well, good news, I guess... I called my friend last night and we talked only a very few minutes, but she made the comment that she hated to go out of town next month because she didn't want to be away from her baby very long, but that she knew she and her husband needed the time together... I was glad to hear that... She seemed to be handling the medicine stuff better too. She said that the baby was such a trooper and that she was proud of how he has taken the medicines without a fight! What a blessing. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I will just keep calling... until she tells me to quit! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
<img src="i/expressions/face-icon-small-smile.gif" border="0">Clare here again thank you so much for the link have added it to my favourites, still unsure what to say to my friend she is in numb shock at the moment and George is having injections 4 times a day at the hospital, anti-biotics I think, so that he can be at home, his sweat test was 120 which means nothing to me they are going to do another sweat test on Thursday and take it from there I guess but again I would like to thank all of you for your information it has been enlightening.
 
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anonymous

New member
Who is the anonymous poster at 2:40, right before claire? I am just trying to keep track of who is who as far as friends of parents who have children with CF.

Claire, you and your friend are in the UK?

Amy, are you the initial poster or a subsequent poster? If you don't mind, whereabouts do you live?

If you aren't the initial poster; initial poster are you still out there somewhere? How is the friend doing?

I just want to keep everybody straight and not get them all jumbled together.

Julie
 
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anonymous

New member
I am so sorry... I didn't realize I wasn't typing my name... Yes I am the initial poster... sorry for the confusion. But I did say above my friend is doing some better.... that is me up above with the two smiley faces... so she seems to be better. She and her husband are going to meet us in a few weeks for a "mini- get away" sort of... I think that it will be good for her to step back and see that it is not as gloomy as she once thought. I will tell her about yall, I think that she may come and find a great amount of comfort. I am going to call her tomorrow night and check her out.
Hope that i answered some of your questions.. I am just glad that she sounded so much better the other night!
AMY... who will try not to forget my name anymore!
 
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anonymous

New member
Amy, that is great to hear that she is doing better. It certainlywon't change overnight but it is so wonderful that you are there to be supportive of her. This website is a great place, as is the CFF website so she can get in touch with some local CF parents in her area. Also, sometimes we communicate off the board via email just because the particular question is very personal or it's clairification from one person to another, and sometimes it's just easier, so if you or your friend every need to talk to anyone, please save my email address: division902@hotmail.com. It may help her, and help you to help her, for there to be communication with not only parents of CFers-so you/she can get some of your questions answered about what life is like in "the beginning" of CF treatment, but as I posted before (not sure if I directed it to you thought because I was a bit confused as to who was typing what), it may also prove benificial for her to ask questions of some older CFers, and those who live our daily lives with CFers. Just to reconfirm that a normal life is still possible and just to get an idea of what someone's daily activities entail. A lot of parents with young CFers seem to be curious about how life is from and older CFer, and understandably so.

I must say that you are really an amazing friend and major props to you for being here for her through this. Not everybody has a friend like you,

Take care,

Julie (wife to Mark 24 w/cF)
 
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anonymous

New member
<img src="i/expressions/face-icon-small-sad.gif" border="0">how did your friend find out her child has cf? My son is getting tested on June 22.
 
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anonymous

New member
I am not the initial poster, but most children are diagnosed via a sweat test. If that sweat test is borderline, or they continue with undiagnosed symptoms and no explanation of the problem, many parents opt for the blood test. Most hospital CF tests only analyze for the 25 most common, a lab called genzyme tests for the most common 25-95. There is a company called ambry genetics <a target=new class=ftalternatingbarlinklarge href="http://www.ambrygen.com/">http://www.ambrygen.com/</a> I woudl hightly recommend them if you have to go that route.


Julie (wife to mark 24 w/CF) diagnosed via sweat test at 18 months in 1982.
 
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