Does anyone else have a problem with you friends not taking your child's CF seriously? I get so aggrevated when people close to me act like I am too worried or dramatic about my daughters CF. A few of my friends act like her diagnoses never happened, they never ask questions and blow me off when I try to talk to them about it!! An example: I was at a birthday party with my daughter and I was telling my friend about my daughters recent bronchoscopy and she basically cut me off and pointed at annother little girl in the room and said, "you know that little girls has reflux and she had a scope recently." I just wanted to adamently tell her that the two things are not comparable. And that my daughter has reflux and CF. How can she be so insensitive? I am not sure if it is because they don't care, are ignorant or feel uncomfortable talking with me about it? But I have really started learning who my true friends during this time in my life. It makes me feel so rejected as a parent, is this how my daughter is going to feel when she grows up...not wanting to tell people about her CF because it makes them feel uncomfortable? I just want to tell them to either deal with it and be my friend or go away!! What do they think I have to do every day...guess what I deal with it!!!! I am the only one who feels this way? Sorry this is so negative, but just need some support. I know I can get it here...thank goodness!
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Friends/Family not taking childs CF seriously!!!
- Thread starter lflatford
- Start date
I completely understand not only as a parent, but as the one with CF. When I am in the hospital everyone except my hubby/mom and one sister just think I am in the hospital & I do my thing & come home. They dont know the work it takes to make that hospital admit worthwhile or the work after coming home. What the schedule is like when on iv & trying to keep a "normal" life with hubby/daughter. That is just during the "rough" times then you have the everyday maintenance. People dont have any comprehension of what a day in the life of CF is like & the ones that should (the ones that should care enough to know like family, close friends etc) dont. I dont want to make light of someone elses issues or problems, but as you said...guess what I deal with? Daily! Maybe it does make people uncomfortable to hear about it because they dont know what to say or dont understand the whole CF thing, but it makes me uncomfortable not to be able to talk about my day & since/if CF is a bigger part of my day then theirs I guess I am in trouble. Thats why we have these forums although it would be nice to get a physical hug or see the smile from someone who truly gets it instead of some words on a computer screeen. Dont get me wrong....I appreciate those words, but sometimes you just need more!!!!!!!!!!!!!!!!!!!!!
I know what you mean Lynsey. After Cale's diagnosis I was a wreck! I had 2 friends that researched it and found out as much as they could. They were there for me to cry on and I will NEVER forget that! The others acted like we were just told he had the flu. I think all of things you mentioned are so true. It makes them uncomfortable, and from that comes the ignorance. Your true friends are the ones that you can talk to about this. They might not know what to say or how to comfort you, but they will listen and NOT cut you off with someone's minor little annoyance like reflux.
A 'friend' of mine told me how she cried watching Grey's Anatomy last week with the CF patient. She asked me when Cale will have that surgery...No matter how many times you tell them that there is NO prediction to what the CF future holds, they hear what they want to hear. And you can talk til you're blue in the face about how different each case is, and they just won't get it. I have learned who my 'CF' friends are and the others are ones that I don't share the details of my life with. Unfortunately that goes for some of my family members too. They just don't comprehend it all and I think they are just trying to protect their own emotions. I call them the selfish ones. Unfortunately for them they are missing out on one great kid!
A 'friend' of mine told me how she cried watching Grey's Anatomy last week with the CF patient. She asked me when Cale will have that surgery...No matter how many times you tell them that there is NO prediction to what the CF future holds, they hear what they want to hear. And you can talk til you're blue in the face about how different each case is, and they just won't get it. I have learned who my 'CF' friends are and the others are ones that I don't share the details of my life with. Unfortunately that goes for some of my family members too. They just don't comprehend it all and I think they are just trying to protect their own emotions. I call them the selfish ones. Unfortunately for them they are missing out on one great kid!
Hi! My name is Amanda and my 5 1/2 month old daughter was diagnoised 2 weeks ago today with cf. I have everybody telling me dont worry their will be a cure. Quit worring. Be positive. I have no space to mourn the fact that my baby will not be a healthy (normal) baby. No one wants to hear me be sad or concerned. They have no idea what I go through or how I feel. Everybody tells me oh i bet it is a mild case. how do you know?????? God i hope it is but they just make me feel like i should be over it. I have so many questions about cf and I need good support so if anybody wants to email me to talk please do. sabc23@yahoo.com
Thanks
Amanda, Indiana
Bryce 6 no cf, Chloe 3 no cf, Bella 5 mos cf
Thanks
Amanda, Indiana
Bryce 6 no cf, Chloe 3 no cf, Bella 5 mos cf
I have a problem with my dad understanding what I deal with, because he wasn't around me much growing up (my parents divorce when I was 7). It's tough because I feel like he doesn't care about my health in the way I really want him to. I don't mean that he doesn't care if I'm alive or dead or sick or healthy or not, just that the doesn't have any appreciation for what I deal with and how tough things get.
Amanda,
Just curious where in Indiana do you live and where do you go to Clinic? I live in Fort Wayne, and we go to clinic at Lutheran Hospital in Fort Wayne. Feel free to e-mail me at Quaintancer15@verizon.net with any questions or just to talk. My daughter, Hayley, is 20 months old and was diagnosed with CF at 3 months old.
Becky, Mom to Nathan, 4 w/o CF and Hayley, 20 months w/CF
Just curious where in Indiana do you live and where do you go to Clinic? I live in Fort Wayne, and we go to clinic at Lutheran Hospital in Fort Wayne. Feel free to e-mail me at Quaintancer15@verizon.net with any questions or just to talk. My daughter, Hayley, is 20 months old and was diagnosed with CF at 3 months old.
Becky, Mom to Nathan, 4 w/o CF and Hayley, 20 months w/CF
M
melleemac
Guest
I dont think any of my family has ever took the twins diagnosis seriously. One of my brothers disappeared off the scene completely after the diagnosis (dont know where he is now). My parents refuse to quit smoking inside their house so Ive put my foot down and told them until they do the boys will not be allowed in their house. When I bring the subject up I get told that they are quitting next week, next week never comes. My boys have severe lung damage and I will not put them in a situation where I know its going to make them alot worse. To top it off , I immigrated to where I am right now, so dont have a heck of alot of friends that are even willing to understand the boys condition, either that or they just dont want to learn. Im not trying to make this sound like a sob story but at times I just feel so frustrated and so alone.
Well....no one who ever comes to this board is alone! I think after awhile, you learn to let the idiots comments bounce off you. You get so tired of trying to explain or make them understand that "No, she's not going to outgrow it", or "No, she's not getting better", etc.
I have told this story before, but for anyone knew...here it is again....I was in my local post office one morning shortly after Emily was diagnosed (We were told we would be lucky if she saw her 18th birthday...she is almost 22 now). There were two older women talking and one was almost in tears talking about her new granddaughter and some kind of problem and I was thinking "Oh, the poor thing...I know how she feels". When she actually said..........
ARE YOU READY FOR THIS??????????????????????
"She has red hair" I almost kicked her!
In the last 21 years, I guess I have just learned that people can be ignorant (not stupid) THERE IS A DIFFERENCE !!
I have told this story before, but for anyone knew...here it is again....I was in my local post office one morning shortly after Emily was diagnosed (We were told we would be lucky if she saw her 18th birthday...she is almost 22 now). There were two older women talking and one was almost in tears talking about her new granddaughter and some kind of problem and I was thinking "Oh, the poor thing...I know how she feels". When she actually said..........
ARE YOU READY FOR THIS??????????????????????
"She has red hair" I almost kicked her!
In the last 21 years, I guess I have just learned that people can be ignorant (not stupid) THERE IS A DIFFERENCE !!
Emily65Roses
New member
Even if you're going to get upset over something stupid and trivial... I like natural redheads!! I don't get why that's so bad!! <img src="i/expressions/face-icon-small-shocked.gif" border="0">
All these posts made me laugh this morning! I have been home from work with my 9mo. old son whose been vomiting, so I needed some humor! It's comforting to see I am not the only one going through this, and that we can all find ways to make light of our issues! Thanks for all of your reply's!
I have the excate OPPOSITE problem...no one wants to be "responsible" for getting Brinly sick so they are completely scared to be around her. I have friends that have taken her diagnosis to the extreme and are just almost too sweet and cautious about it, if that makes any sense? I mean we are trying to approach her cf as if she does her meds and stays healthy that she is like any other 16 mo old. We do not shield her, i mean we use Purell, etc. and would not throw her in a ball pit at Mc D's with coughing and green nosed kiddos but we are still seen in a different light. So i wonder which is better too cautious or NOT too serious??
Blythe
mom to Brinly 16 mo w/cf and Birgess 3 w/o
Blythe
mom to Brinly 16 mo w/cf and Birgess 3 w/o
My husband and I are greatly involved in the Great Strides Walk. Last year we raised almost $10000 in my daughters name for the CFF. Unfortunately it was mostly his friends who were involved. Mine seem to just not be interested in our struggles. I do agree w/ Great Strides bringing people closer together though.
Thanks
Thanks
Blythe, I live here in Richardson and my son sees Dr. Prestidge at Children's. I started making jewelry as a "stress reliever" and even designed a CF 65 roses bracelet. I love bead making! it has been theraputic and has helped me use my talents to raise money for CF.
Who does your daughter see and how is she doing?
Who does your daughter see and how is she doing?
Hi Sheli,
We go to Dallas Children's too!! We see Dr. Brown mostly but have seen Dr. Prestige off and on. We mostly talk to Margaret and Aylsee on the phone!! Brinly is doing GREAT!! She had a very rough first year, in the hospital 2x and the psuedo bug!! But we are very excited that she has had no congestion since last April. Of course we are just holding our breath as this winter approaches.
I love your website!! I infact think i bought my mother in law a cf bracelet from you last Christmas!!
How is your little boy? Does he go to Kindergarten?
Blythe
mom to Brinly 16 mo w/cf and Birgess 3.5 w/o
We go to Dallas Children's too!! We see Dr. Brown mostly but have seen Dr. Prestige off and on. We mostly talk to Margaret and Aylsee on the phone!! Brinly is doing GREAT!! She had a very rough first year, in the hospital 2x and the psuedo bug!! But we are very excited that she has had no congestion since last April. Of course we are just holding our breath as this winter approaches.
I love your website!! I infact think i bought my mother in law a cf bracelet from you last Christmas!!
How is your little boy? Does he go to Kindergarten?
Blythe
mom to Brinly 16 mo w/cf and Birgess 3.5 w/o