Hi, I am the mother of a 3 yr. old girl with CF. She was diagnosed at 8 weeks old and I immediately accepted it, or so I thought. I did a lot of fundraising and all that I could to make sure she stayed healthy. Now, suddenly, I am having trouble with it. I am making myself sick with worry and am losing weight, which I cannot afford to lose. She has never been hospitalized but has chronic sinusitis, reflux, ear infections and is tiny for her age. We have arranged our schedules so that one of us is always home with her, to avoid the day care situation but this gives us little family/couple time. If anyone one has tips on how they cope or tricks of the trade for CF I would appreciate it. I know that I need to be strong and accepting of her CF for her sake as well as mine. If I do not accept it and cope well then neither will she. I am starting counseling this week but if anyone has tips on how to get through the tough times I would like to hear about it.Thanks,A.M.
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Coping & Acceptance
- Thread starter anonymous
- Start date
just a thought - why are you hesitant to put your daughter in a daycare? is that because of germs and stuff? because in that case, it's useless - if not now, she'll be with kids when she goes to school, so it's better for her to build up her immune system now. also, her being in daycare occasionally would give you and your husband some "couple" time and will give your daughter friends her age. i'm soon-to-be 21 and have CF and my mom didn't put me in kindergarten because of the germs and stuff and that basically sucked, because all my neighbour girl friends did go to kindergarten and had more friends and favourite teachers which they went back to visit until like the third grade. [just a childhood memory]. apart from that blabbering... just relax. take a time out. maybe leave your daughter with grandparents and take a little vacation with your husband. because CF can be hard on couplehood, as you probably know already.
Hi AM, hang in there, this too shall pass. I go through times when everything about cf gets me down more than other times. My daughter is now 6. I never let her go to daycare or preschool either. At that age kids have no idea how to cover well when coughing, they rub their runny noses and then hold hands, and all the other stuff young kids do. I feel that as they get older and social graces are better our kids have a better chance with the germ issues. Don't get me wrong though, germs will always be an issue and theywill be everywhere. Everyone has their opinions on this and we all need to do what we feel led to do. Some cf kids can fight colds better than others. I have a friend whoes son never missed a day of school last year. My daughter missed 67 days. Both have cf. I have found it to be helpful to have a friend that I trust, and one that understands the importance of letting me know when they have a cold, to take care of my daughter once in a while. Preferably one with a child close to the same age. Right now I don't have anyone and I know how hard it is. My friend moved away. Do you have any other kids? You have made a good move by sharing here. Many people care and will give support. Hang in there and keep in touch, Michelle
If you are considering day care and even if you're not, always be open and honest with your daughter about her CF. Teach her now how to wash her hands properly and cover her mouth when she coughs. Let her know that she should be careful about sharring food, ect. with others. If you teach her about her body and how it works, she'll be excited for the independance. When she starts school, she'll be able to answer questions on her own that others ask. Have her play an active role in her check-ups. Take some time before you go to think of questions you can both ask, and make sure the doctor directs answers to HER as well. (my parents tell me that when I was three, I used to interupt the doc and say "I'm the one with CF, talk to me, please!) All this will give her independance and you peace of mind. It is very easy to throw yourself into carring for her and neglect yourself and relationships. But you and your husband need to have a strong relationship b/c this is always going to be stressful. Try day care one or two days a week and see how she responds. She does need to build up immunities, and spend time w/ your husband. Plan a weekend get away, just the two of you. Do her therapies as a family. Be open with her and let her know that mom and dad have needs too ( I know most 3 yr olds won't really grasp this, but she'll be happy to see the two of you happy togeather). For you personally, I suggest you find something that helps you relax, that you can do while at home. I suggest yoga. You can do it at home and your daughter can join you. You can taylor it to your needs and you will feel more relaxed and centered. Hang in there,Debbie 22 yr old w/ CF in CO
My daughter was dx at 6 weeks. I went through all of the emotions...anger, fear, confusion, anger...and then fought to get a grip on it. Read everything I could, raised money, and learned to love this blessed girl. And then it hit...with a vengence. I became heart sick, feared losing my daughter to this awful disease...and worry was getting me no where.So I just take it one day at a time. Mylee is tiny for her age. However, she manages to stay reasonably healthy. I am thankful for the healthy days and pray through the sick ones. Just as a side note...we put mylee in a home daycare. There are only 5 kids (including my two). That has made a world of difference. She's not in a big daycare, but to some small extent is still exposed to all of those wonderful germs that she needs to become immuned to. You need to protect her without keeping her in a bubble, but you also need some family time, too. That's the only way we can all survive this. We need the support of our families and some time doing normal things.Good luck.ChristieMommy to twins malachi wo cf and Mylee wcf