You rock for coming here and facing this, asking questions and doing research-sometimes people ignore and chose the ignorance is bliss path which does alot of harm.
things my mom did right-
She was super into nutrition. As a kid, sure I hated it sometimes, but she forced us to eat whole wheat bread, vegetables and no soda or processed foods were in the house. She didn't buy into the american wonderbread prepackaged diet that even the medical field will tell you is ok to eat. Most of our foods were homemade.
We grew up on a farm, and of course not everyone can do that but you can keep the principle...she had home grown vegetables all the time that we had to help
grow as little kids. (today you can have little pots on the window sill or a small patch in the backyard) aside from the health benefits it keep kids interested in nature, and keeps them outside.
She knew alot about herbs and vitamins. She learned all she could about it and its a HUGE reason why I was never sick.
She never ever EVER skipped my therapy.
In the rebellious teen years if I wouldn't do my vest, she hand clapped me whether I wanted it or not. (this was while raising/caring for a house of 8 other kids...so yeah, its time consuming but what about having kids isn't, right?) Also, my chest pt became a family affair-a brother or sister would help w it if she couldn't.
She never decided that bc I had cf, I couldn't act or play like everyone else. I was never kept inside from the snow, never kept out of the mud or the barn. When I was on ivs and up to it, we went on long walks to keep my energy up. I rode my bike everywhere...all that stuff. We weren't allowed to sit inside and loaf-if it was nice out, we had to be outside playing.
She researched alternative therapies/natural therapies and used them.
What was done wrong-
honestly, in the cf department of my life my mom didn't do much wrong. But, I would say that as the years went on and I got into my mid-late teens, she should have given me more of a voice during doctor visits and such. Not that my wishes weren't listened to, but I think the doctors could have helped me more with the teenage rebellion stuff if I had been able to speak up more and they had had more private time with me.
I feel that my mom didn't have enough of a relationship w me outside of cf. I think that when it came to me, she was so spent that she almost said (whether conciously or subconciously) 'this health care is all i have for christian....' and there was not enough attention paid to me outside of cf. As a kid she was a great hands on mom but when the teen years came, i was emotionally and mentally on my own. This had little to do with cf-there were alot of other issues present in my childhood bc of a messy adoption and alcohol abuse in my family, so this had more to do with that likely. But I guess I'm saying, esp if u have other kids...dont' catch yourself ignoring your child in other areas of life besides cf. They are a whole person and cf can't define them.
As far as my dad, he played absolutely no role in my cf care, or the rest of my life for that matter so that may be another story. But definitely, make your significant other a large role in care as well. Mommy is always mommy, but you need a partner to step in when you feel u will lose your top. And avail yourselves of the social workers at the cf center if you parents are losing steam individually or as a team.
To sum up,
Treat your kid normally. I would never limit my child bc of having this. Push them into physical activities and push a natural lifestyle of eating and living. Doh't say they can't do something now or in the future bc of this. They said I wouldn't live to 12 and here I am, 25, with an 8 month old baby, married and eating up life!
Some above have said to not force the treatments and meds...maybe that was their personal experience, but with all due respect, i don't agree. Regardless of what approach you take, your child will go through some type of rebelling with meds. They won't want to do them. All you can do is hope that when maturity comes what you instilled with take over. So instill doing meds, not skipping them, tell your child the truth about their illness, (at an appropriate age), and that they will reap rewards if they work. You get what you put into it.
Your LO is in a lucky position bc when I was born, our parents were told we wouldn't live to 12. Now they're told 38...and a cure (or life saving therapy, whatever u want to call it) is on the way, so with a good lifestlye your lo is looking at a normal life.
Even with all my treatments, I would say I have a normal life. I work hard for what I've gotten. Maybe I have to work harder than others but I have a basically normal happy life.
