Question for parents with CF??

[anonymous]

My husband has CF and we are starting to discuss the possibilities of starting a family. My question to your parenst out there with CF, how do you get over the fact that you may not be able to be the "best parent" that you can be because you are not able to be as active, etc? how do you get over that guilt? ( I know my husband has concerns about that). And more importnatly, I Know that kids get sick often... how do you deal with that? Does that put added stress on the non CF parent? Any help or insight you could give us... thank you.

 

[anonymous]

How is your husband's health? Can he have babies or are you thinking of adopting? I don't know of CF makes any difference in adoption. i think there was a thread here a while ago where several CF paretns said they'd adopted.

I have very little limitations from my CF and so it hasn't really effected my parenting. I can run and play and do all the things that parents like to be able to do with their kids and I haven't yet had to go to the hospital, so CF isn't a big role in our lives. I don't know how it would be different if my health was more limited. My son does bring home germs and I have gotten sick from him, but luckily we haven't had anything to serious go through and nothing that has adeversely affected my CF. I do get a flu shot each year, but I don't get him one - or anyone else in the family - but that is about the only real precaution I take as to his illnesses.

Wanderlost 28 W/ CF

 

[HollyCatheryn]

<P>The first thing I think I'd say is that being healthy doesn't necessarily mean a person is a good parent. And parents with limited health, activity or mobility can give their kids every ounce of love that any other good parent can give. Kids are incredibly adaptible and whatever they grow up with is their "norm." If they grow up eating vegetarian then they think that is normal. If they grow up with no TV, then that is their normal. The same goes for activity level. We take walks, but mostly I sit outside while my daughter runs or rides around. We work around the house together and play games and do "school." I honestly don't have any guilt about how my CF affects her. But, I also have the benefit of having grown up with a mother with chronic health issues (not CF) and I know that her physical health did not make our family any better or worse than anyone else's. If anything, I think our family is better than a lot of "healthy" families because we really maximize our time together. We do a lot more as a family than most and we focus our attention and energy on each other. I'm not criticizing anyone, I'm just saying that I don't feel like my health cheats my daughter out of any of the joys of life.I have gone to the hospital four times since her birth and each time we adapt. During all but the most recent stay she stayed with me (because my husband was working). When she was a baby, we piled up in best and nursed and slept most of the time. When she was a year old, we took our stroller and a couple of toys. When she was 2 1/2, we took some toys and found some good PBS cartoons. At 2 1/2 she also really enjoyed going to physical therapy with me. As far as bringing home germs, there are several things you can consider. We homeschool and plan on continuing. This minimizes her bringing home foreign germs (that is not our reason for homeschooling, but it is a nice bonus). We never did daycare, which is just a breeding ground for snotty noses, ear infections, and respiratory infections. We breastfed and that protected her from dozens of viral things that we came in contact with - one short 24-hour flu (which my husband and I also had - hubby brought it home from school) and a three-day bout of croup. She's still the healthiest three-year-old I know. We also are very careful about our nutrition. We take Reliv which keeps our immune systems up and keeps our bodies healing optimally. If you did choose to do public school and/or daycare, your best bet would be to make sure the daycare was as small as possible and to be very wary and mindful of not dropping your child off if you saw others there with obvious signs of illness (palor, snotty noses, coughing, wheezing). The other thing would be to bathe your child upon bringing them home. I have not been any sicker since becoming a mother than I was before. Actually, I have been healthier. The best advise I can give is to look at everything you know about parenting as a suggestion. You can do things any way that works best for you. Even the American Academy of Pediatrics holds up their recommendations as just that, a recommendation. If you know something won't work for you, don't do it. If you try something that isn't in the books, but it is what you all need, go for it. You are the expert on your family/child.I would also recommend visiting <A href="http://www.geocities.com/MurrensNatureMama">www.geocities.com/MurrensNatureMama</A> and <A href="http://www.cysticfibrosismaleinfertility.com">www.cysticfibrosismaleinfertility.com</A> for info on becoming a father with CF. I'm also hoping to get some info put together on adoption by the end of the year. Feel free to ask more questions here or to email me at <A href="mailto:jaloughlin3@sbcglobal.net">jaloughlin3@sbcglobal.net</A></P>

 

[JazzysMom]

When my daughter was just starting to walk I made a point of teaching her to help pick up toys etc. I didnt do this because of "CF" per say, but because I didnt want to have one of those kids that thought I was their "servant". It worked out well because it turns out that I need her help doing simple things sometimes. I have good/bad days & my daughter is quite aware of this. She gets lots of one on one time with me doing the things that Daddy doesnt do, but she also does the more "active" things with Daddy that I cant do. One time "guilt" sets in is when she thinks I might have to go into the hospital. Everytime I have a doctors appointment she thinks I wont come home. Understandably since it has happened. As a rule she is happy with our "arrangements" of activities. I am still the soccer mom who will yell & cheer louder than everyone, I still go into class & on trips. I just cant play the soccer or walk the mall with her (usually). As far as germs.....it was rough when she was in Pre K because all the kids were still "learning" about handwashing etc. I was a little sicker that year then others, but since then it has gotten better. We take extra precautions at home to avoid germs & if her or I start feeling "funny" we jump right on it to avoid longevity or severity. Oddly most of her problems have been things I dont catch easily (or that dont affect me badly) like ringworm, pinworms (this was a pain in the butt .. literally) which is quite common among younger students. I found out quickly that a lot of what is contagious doesnt necessarily affect my lungs. Everything is a balancing act. Some days will be easier than others, but its truly worth it. I think I have more "guilt" about her not having any siblings to play with then having a Mom who cant do everything. On the otherhand it has taught her to entertain herself, to be independant & be creative. You have to look at the bright side of things! I hope this helped a little.