HI! My name is Beth and I am new to the forum. I was wondering if anyone had any ideas that they could share on how to cope with your child having CF. My daughter is 7 years old but she was diagnosed when she was four months old. I Still feel like I haven't come to terms with her illness. Does anyone have any advice?
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coping with daughter having CF
- Thread starter anonymous
- Start date
Without sounding too harsh.....hmmmm. I am not sure how to answer this. It is a part of your life now & like anything else you will have to suck it up & move on. Some days will be better than others & the bad days is a good time to come here to kick, scream, cry, vent or just have someone listen. Of course we would appreciate hearing the positive things as well & we are not just talking about CF itself. We enjoy hearing the accomplishments in life including things that might seem like bragging to you because your little one is still young. My daughter (non CF) is 7 (will be 8 in April) & when I chat with my friends from here I dont hesitate to share stories about Jazmine. She actually has started chatting herself with some great people that have the patience for it. Now I am getting off the point. There are some great books to help you, but of course at this time of the a.m. I cant remember any names so I will have to get back to you on that. In the meantime I am sure someone else will have some wiser words for you. I send my strength to you & a little extra for reserve & the knowledge of knowing that even if you feel like you are alone on the journey, you really arent!
JennifersHope
New member
Hi Beth,
Welcome to this forum.. Good for you for looking for a place to better cope with your daughters CF... I can relate to you in some ways.... I wasn't dx with CF till I was 29.. now 33... and not until very recently have I been able to even admit that I have CF.. it is very difficult to do... I could suck it up and deal with it but that really didn't help me to process things through......
What worked for me is a couple of different things... one of them being this forum and other CF forums... It is a great place to be able to relate to others, vent when you need to, and cry when you are having a bad day....also sharing good news is always welcome..
For me, with the love of my family who is constantly there for me, raising questions to help me process things, and this forum always willing to listen and offer advise or just validate my feelings... crazy feelings and all... I don't know before I knew it, I was just more accepting of things....
So talk much, post often, share what you are feeling .. it really helps.....Knowing you are not alone, or the only one going through something, or knowing we can be a sounding board for you...will hopefully help you on your journey to acceptance... I know I am not there yet.. but I am much closer now that I talk about it more....
Jennifer 33 w. CF, Addison's disease, CFRD, and to many other things to name.... HA HA
Welcome to this forum.. Good for you for looking for a place to better cope with your daughters CF... I can relate to you in some ways.... I wasn't dx with CF till I was 29.. now 33... and not until very recently have I been able to even admit that I have CF.. it is very difficult to do... I could suck it up and deal with it but that really didn't help me to process things through......
What worked for me is a couple of different things... one of them being this forum and other CF forums... It is a great place to be able to relate to others, vent when you need to, and cry when you are having a bad day....also sharing good news is always welcome..
For me, with the love of my family who is constantly there for me, raising questions to help me process things, and this forum always willing to listen and offer advise or just validate my feelings... crazy feelings and all... I don't know before I knew it, I was just more accepting of things....
So talk much, post often, share what you are feeling .. it really helps.....Knowing you are not alone, or the only one going through something, or knowing we can be a sounding board for you...will hopefully help you on your journey to acceptance... I know I am not there yet.. but I am much closer now that I talk about it more....
Jennifer 33 w. CF, Addison's disease, CFRD, and to many other things to name.... HA HA
jasonterriallen
New member
I can so realte to you my son is 9 and has CF. We found out when he was about 2 monts old. At first I didn't understand and when I read more and more about it I started getting depressed. I've been taking it day by day and most days are great but when he gets sick its bad. I try to treat him the same as my other two children and yet he is special. I guess you learn how to cope when you have a child with CF. I used to blame myself for him having this, and cry myself to sleep. I still feel this way a bit but more importantly I think of how strong and such a wonderful child he is. The people on here have dealt with this for so many years and have a lot of knowledge and big hearts. When I first joined I felt silly asking questions but everyone made me feel better about it. Now they can't shut me up lol Seriously though they all feel like family how much they have helped me deal with everything.
DS was diagnosed shortly after he was born and one of the best pieces of advice someone in the medical field gave us was to only allow yourself 15 minutes a day to dwell on the CF diagnosis. And I try to follow that -- it's hard sometimes if DS is sick or if we are prescribed yet another medication -- just a reminder that DS has a serious disease. What I regret now is during that first year after DS was born was how terrified I was --- I was scared he'd end up with another bowel obstruction, end up with pnemonia or back in the hospital, or with a feeding tube 'cuz he wouldn't eat. I was soooo scared that I didn't enjoy his being a baby and I see teeny tiny babies and think, I wish I could go back in time and just enjoy him and not worry so much.
What his diagnosis has done for me is to realize is not to take little things like work annoyances, tardiness, etc too seriously anymore. I feel I'm more laid back and not as much of a worrier. This summer my own mother was going on and on about her childhood and how horrible it was and how it's affected her and I just said, Mom, suck it up and get OVER it! Enjoy life and ENJOY being with your family instead of dwelling on the past all the time.
What his diagnosis has done for me is to realize is not to take little things like work annoyances, tardiness, etc too seriously anymore. I feel I'm more laid back and not as much of a worrier. This summer my own mother was going on and on about her childhood and how horrible it was and how it's affected her and I just said, Mom, suck it up and get OVER it! Enjoy life and ENJOY being with your family instead of dwelling on the past all the time.
Love her...Educate yourself...Understand what she is going to go through...Realize it's not a death sentence...Remember yourself being female and being normal, and try to imagine her being normal but even more BS places on her shoulders...Take care of her like no tomorrow...Realize she also has to understand how important for HER to take care of HERSELF...Look into different treatments, and supplements...Don't 100% buy into everything the doctor says...Fight, and NEVER give up against the dying of the light...(theres a ton other advice I could give, but I might mention Dr. Phil and be classified as a gargoyle...can't have that).
Hi, I am a mom of a teenage daughter with cf. I have seen just about everything or been through it with her. My best advise is to love her and be patient. And try not to nag too much it will only turn them against what they need to do, instead work together on everything. Make doing the things that have to be done FUN. Play baord games while doing her treatment.
Daychele
Daychele