To adult Cfers...Do you ever realize....

[anonymous]

Hello,

I have a child w/CF and wonder when he grows up if he will realize/appreciate all that we do for him. All of the appointments/hours of physio and time spent worrying about what the future holds.... As a parent of two kids one wo/CF and one w/CF you realize the time consumption dedicated to the CFer...This may sound terrible...but CFers need so much more attention to reguler daily living and the routine of meds+ Physio gets long and tough on other family members. Do you ever stop to think about how your disease effects others that Love and Take Care of you on a regular basis...

What are your thoughts on this

 

[anonymous]

I'm the parent of a CFer and a child w/o CF. Yes, the CFer takes more care but I've never thought of it being "tough" on me. It's tough on my CFer.

You're a parent and when you were expecting this baby you assumed certain risks. There were no guarantees you'd have a healthy child. Frankly, I'd rather deal with the daily challenges of CF than the constant challenges some other diseases bring. Of course, I've met parents with children that have MS, cancer, CP, Downes, etc. and they have said they wouldn't want to be in my shoes. I think it's all what you get used to.

Anyway, I would hope that my son doesn't ever stop to think about how CF affects us. I love him and wouldn't ever want him to feel indebted to me. I care for him because he's my son and he has CF, just as I care for my son w/o CF, not because I'm looking for some recognition.

Every parent makes sacrifices. Some more than others. That's life.

 

[Justsmurfin]

I respect my parents a great deal for how the have dealt with my CF and with my other issues(asthma, a rare eye condition,severe allergies). I have a brother who is 3 years older than me and is healthy but he has had his own issues, maybe it wasn't with his physical health but still.

I do admire my parents for how they have dealt. Its been matter of fact all along. I wasn't diagnosed with CF until age 16 but have had problems since 6 months old. I know they have sacrificed some to pay doctor bills,buy medicine and medical supplies,pay doctor bills etc. I don't have insurance now but when I did there was still a lot that wasn't covered.

But I know that they love me and would do anything for me, I don't ever question that. I think every child comes with their own issues

 

[Purplelungs]

I read that and since I am in a bad icky feeling mood i just wanted to say " no we are all cold and heartless and care nothing of others but ourselves" sarcasticly...but thats just my bad mood. In all seriousness I want to know why you ask this? Is your child very young? Or is he/she a teenager and have that teenagery outlook that makes you think they dont care whats done for them or whats good for them? In any case you must be in a bad icky mood yourself, meaning your just in a low spot right now. The daily routines of this disease is taking a tol on you as a parent, you get exhasted making sure your child has what they need and did all the treatments while trying not to make the non cf child feel excluded. Its a hard task. To answer your question though, yes cfers do think of how it affects those around us...sometimes so badly we dont want to be close to anyone, we dont want to date anyone we dont want to make good friendships because we dont want them to suffer when we suffer. I feel a great deal of admiration to my family and friends that stick by me. I think it has to be really hard to watch someone you love just keep getting sicker and your helpless to do anything about it. It takes really strong, compassionate, loving people to be able to handle this "job". Yes you are greatly appriciated whether or not you dont feel it or its not shown to you enough, you are greatly needed and appriciated.

 

[anonymous]

I think you said everything exactly as most of us would have purple lungs. The question as innocent as it may have been makes it sound as if we don't have a heart or respect for others. I'm thinking people with any terminal illness probly think about others more than the average person. Becky

 

[anonymous]

I really do not think the original poster was trying to imply CFers are selfish, or do not care about others. I think Purple lungs took that a little too far personally. I think it is important to stop and thank all of the people in our lives who spent hours doing our physiotherapy/meds/appointments/ worried and waited for us while we did our daily stuff. Sure they love us but it is alot for them to deal with.

 

[anonymous]

Well, here is a twist on this topic. I am an adult with cf. My parents did not properly care for me as a child, and my cf is worse today because of it. So I am angry and bitter toward them for neglecting my health growing up. If they had taken good care of me and gotten me proper medical care, I would be healthier and grateful. I'm sure most CFer's are grateful for the time their families invest in them.

 

[anonymous]

anonymous, although the treatments, physio and hours you dedicate to your CFer right now might seem like a lot, there comes a time when they WILL do it for themselves. I can't imagine a greater reward than seeing your child into his teens and adult years, probably marriage and children. I don't think you are at all sefish for asking that question, I am a wife to a CFer, not a parent but sometimes I get overwhelmed too. My husband takes care of his own stuff 99% of the time, but when he gets really sick-I liken it to taking care of a very young child. I make his food, set up all his meds, do manual chest PT and the vest, and spend countless hours worrying about him and making sure he is taken care of-sometimes forgetting my own needs (like eating, bathing, showering, sleeping) so in a sense I can relate.

Julie (wife to Mark 24 w/CF)

 

[Purplelungs]

"I read that and since I am in a bad icky feeling mood i just wanted to say " no we are all cold and heartless and care nothing of others but ourselves" sarcasticly...but thats just my bad mood."
I said it was my bad mood. I dont feel to good right now and lots of people here would understand when you dont feel well you get in a bad mood and the silliest things get to you. I really didnt mean that. It was just what my first thought was...geez people.

 

[anonymous]

To the original poster. Yes, I really do appreciate the sacrifices and great pains my parents went through to care for me & my sibling w/ CF. I did not, however realize or really even think of it until I was in my mid-late 20's and was past that selfish, self absorbed stage a lot of teenagers/young adults go through. I didn't say ALL, but a lot.
Like someone said, it just was a way of life to all of us growing up & I guess I really didn't stop to think about the time/effort my parents put into caring for me until later.
I have thanked my parents more than once for all the care and sacrifices they did on my behalf.
So hang in there, it will be appreciated. It also makes your children feel secure now to know that you've "got their back" even though they may not voice it or act like it.
You're doing great, hang in there!

 

[JazzysMom]

I have attempted to respond a few times so far on this, but I had to truly think about it because its something that I cant say I have ever thought about before. One thing I can say is that my parents spoiled me with material things which at the time I thought was great, but didnt appreciate. I never really considered the "pain" my parents went through with my CF. My parents didnt make sure I got my treatments like I should have. It was never instilled in me the need to maintain my health. Of course I had my hospital admits, but for the most part CF didnt interfere with my life. They made sure I had my oral meds & I know it cost a fortunate for them to have health insurance, but I can honestly say that I felt they didnt make any more of a sacrafice for me then they did for my other siblings without CF or that I do for my daughter. There was one time I was in the hospital for Christmas & my parents Christmas dinner consisted of a cold pizza & left over wine that someone from the hospital floor gave them. My mother & I both remember that, but it was just something that we remember happening. It just seemed normal parenting to me. Even today with me at 37 year old & my Mom at 70. She keeps tabs on me & called me every day while I was in the hospital, but there doesnt seem to be "pain" in her way. I can say that there is "guilt". That has always been there. Even today I cant tell her everything that is discussed at the doctor because she cries. I guess I should appreciate the attempt more, but I just dont see what I got as any more than what I deserved & what any parent should give. I cant quite get all my feelings about this down properly so if this sounds really cold hearted, I'm not sure I mean it to be.

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>I really do not think the original poster was trying to imply CFers are selfish, or do not care about others. I think Purple lungs took that a little too far personally. I think it is important to stop and thank all of the people in our lives who spent hours doing our physiotherapy/meds/appointments/ worried and waited for us while we did our daily stuff. Sure they love us but it is alot for them to deal with.<hr></blockquote>

I too agree that the original poster wasn't complaining, but just needed to vent and probably needs some encouragement. Just as CFers sometimes ask "why me" on a bad day - so do CF parents! While I'm in no way equating having CF to loving someone w/CF - let's face it, parents of healthy children have it easier in many ways.

 

[JennaB]

I didn't appreciate my mom at all when I was young. In fact, her over-proctectiveness got on my ever last nerve. Now, as an adult, I look back on all of the late night treatments, early morning treatments, talks, doctor trips, etc - and yes, I appreciate every bit of it.

 

[Mockingbird]

I'm backing purple lungs' bad mood on this one. This question kind of pisses me off. I really don't like being reminded how much of a burden I am. I don't know what your intent was in asking this question, but you really stepped over the line. <img src="i/expressions/face-icon-small-mad.gif" border="0"> If it was support you were looking for, i can understand that, but this is the wrong way to get it.

To the person who first replied, though, I want to thank you. It's taken me years to accept that people take care of me because they love me and they just want to for no other reason. Otherwise, every minute of my life would be consumed by guilt that I'll never be able to give back everything that has been given to me. you experesed exactly what so many other people in my life have expresed, and it's people like you who make CF a battle worth fighting.

 

[JenniferNJ]

I think it is okay for parents to come on here and vent if they want or ask questions or share ...... I did get a little upset because emotionally I hate being a burden to my family.. I hate it hate it hate it.. I feel like I am taking years off their lives because they worry so much about me.. at least my dad does....and so does his wife.... so I see both sides one the parent feeling overwhelmed but I can see why it would bother some CFers as well because at least for me.. I do feel like a burden and that bothers me..but the orginal poster is not responsible for MY emotions or feelings and should be free to share what is on their mind.. just my thoughts

To answer the question .. nope my parents didn't do anything for me growing up other then provide a place for me to live.. My parents lives were such a mess. I didn't have a regular dr. I went to the walk in urgent care centers my whole life and was sick all the time.. That is one of the reasons I was not dx till 29 I saw a different doctor almost everytime I went to the dr. But

Now my dad is very involved in my life and I so appreciate all he does for me. I couldn't make it without him and I know it. I hope that you feel appreciated andl loved but if you don't right now it will come I am sure...

Jennifer

 

[JazzysMom]

I dont believe the original poster meant to offend anyone. I was initially offended because I never really thought about the topic. For those that got totally offended & replied to her what I consider a little too harshly.....remember that no matter how close you are to a CFer unless you ARE the CFer you can not imagine the thoughts & physical aspect. Just like we cant imagine the thoughts & emotional aspect of a caregiver. My Mom & Husband are at odds about this topic. My mother feels she has almost more of a right to speak because she has more time invested (30 years) versus my husband who has 8 years, but a lot tougher time. I have gone through a lot in the last 8 years that I didnt growing up. Its also a different type of relationship involved. Where as my Mom was the caregiver solely. My husband is a caregiver & my equal. I personally, being a caregiver for others who were sick as well as caring for my daughter & being a CFer, just feel that its part of parenting. If you get a child with an illness then I believe there is a reason & you deal with it. Some deal better than others. Some have more support & resources than others, but you deal with it like anything else.

 

[anonymous]

To the original writer, I want you to know that I have CF and I appreciate all you are doing for your child, and I am sure that your child does also. My parents were wonderful to me, doing the best they could when I was little (I am now 53, so the information and care available when I was little was a lot less than it is now) as well as during my adult years. I am now the mother of two teenagers, and I can just tell you from my own experience that kids in general, and teens in particular, are not very adept at expressing their appreciation for all that you do - whether or not they have an illness. I think the ability to express heartfelt appreciation comes with maturity. Be patient.

My parents were wracked with guilt for so many years because they thought they had done something wrong to cause my CF. Eventually, with more information, they got over that. I find myself often wracked with guilt over all that I put my husband and children through every day. I have been near death a couple of times, and worse than my own suffering is watching the fear in the eyes of my loved ones. A dear friend of mine once told me that my being sick is actually a gift to my children because it helps them learn early on the cycle of life, the joy of giving, the art of compassion, and tools for making decisions. She is right, but it's still hard. Guilt, fear, anger, resentment - they are all normal emotions. They pop up, and you just have to acknowledge them. But remember that there is one emotion that trumps them all, and that is love. Always be forgiving (of yourself as well as others), try not to be judgemental, and never, ever go to bed angry at anyone you love. I wish you the best.

Debi, 53 with CF

 

[anonymous]

Maybe not but they definatly didn't choose their words properly. When I read it. It looks as if a generalization that we have no empathy for the people that care for us. To put us all in the same basket is wrong. Of course we appreciate people no matter what kind of support it is that is given. So yea it made me mad to read it too. Honestly to ask termianally ill people if we realize what others do for us or if we stop and think about how our disease effects others. Is just ignorance because anyone that HAS CF knows that we think of being burdens often. We think of the effects whether were coughing our heads off in public, whether were at home doing our nebs and family is there. Whether were not able to work. Whether we can pay our bills this month or not. Whether our health care is going to pay for this or that. What tomorrow is going to bring. Come on... Be real.... Becky in Mich

 

[CFHockeyMom]

I can definitely see how this question might provoke some negative reactions. The question itself is presented in a fairly negative context. I read it as this parent looking for some kind of pat on the back.

As a parent, I've always taken care of my children out of love, CF or not. Yes, Sean needs more care than Neil does but he didn't ask for it to be that way so why should he carry the burden of worrying about how is illness affects us. I'm glad to take care of both of my kids regardless of their "appreciation", now or in the future.

When they look back on what I've contributed to their lives, I'd prefer they look back with fond memories of being a kid and knowing they were/are loved and remember the little things: driving them to school so they don't have to wait in the pouring rain for the bus, running interference for them with their dad when they wreck the family car, cooking their favorite dinner on their birthday, taking them to DisneyWorld, letting them stay up just another ten minutes, etc.

Now, maybe the poster was just curious to know if CFers ever thought about how much work it was for their parents. If that's the case then it's kind of a needless question because anyone with a serious illness or disability knows the impact they have on the people around them. Not to mention, there are plenty of kids out there without any health problems that parents have had to go the extra mile for. Maybe some of those kids have thanked their parents and maybe some haven't. I would think that just seeing you child (CFer in this case) turn into a happy/healthy adult would be thanks enough.

 

[anonymous]

I think this is a wonderful question!

It is hard to think how your CF affects others when you are always so occupied in your own daily care of pills,vest,physio,high calorie diets,doctors appointments. And of course the time spent on why me . But the fact is there are ALOT of people in our lives who live for US to have a better quality of life ( sacrificing their quality of life) and I think we forget to thank them sometimes.

We should remember how much our illness affects others around us. They get tired of fighting too, just like us.