Re: I'm shaking my head as to what subject to call this!

[Guest guest]

Joanne,

Thanks so much for all you wrote. It means a lot to me especially from someone

like yourself who has the disease. What a promising thing too that you and your

sister are still here with us and healthy. What has it been like for you? Were

your parents worried about putting you in school because of all the bugs and

viruses lurking? I am goingback to work this Jan. but luckily my hubby is going

tostay homewithmy boys. It worries me so much, thinking about the future. But

you areright, I need to just stay here in thepresent and enjoy each andevery day

that he is healthy.

Again, thanks somuch.

Love and stuff

Chery

Re: I'm shaking my head as to what subject to call this!

Cheryl,

I am not the mom of a CF child, but I am the one with CF. But I have asked my

parents over the years how they dealt with it all. I know that I was never

aware that they were upset or concerned about my sister and I, who both have

CF. I am 39 now and my sister is 48. I know my sister and I showed no

signs of CF for many years, but they did the enzymes and the treatments and

maybe that was the key to keeping it from making havoc with our lungs. I

know when I was a teenager, and I would cough more, but still felt very

healthy, I protested when the doctor would say I had to do the chest

physiotherapy. But we did it and I think it did help me from getting colds

to go into my lungs. My parents say that they believed the docs, but back

when I was diagnosed, things were still new on CF and no support like there

is now through the wonders of email. They relyed on reading articles, and

books and talking to our doctor. My dad did research into the cure of CF. He

was positive he would find the cure through is research he did every night in

our basement. My sister and I had no idea he did research into it. He had

many great ideas. Who knows, maybe he did find a cure, but it sits among his

papers now. My sister and I were diagnosed in 1969. I was 4 and my sister was

14.

Your son will surprise you with his fight and determination. I tell many

parents that yes their child get the CF gene, but I think we get another

" fighting, determined " gene that no one else gets and we get far on that. So

hang in there, your son will be the best thing to happen to you and your

family. Hope he is doing great today.

Joanne Schum

luckylungsforjo@...

>

>

> Hi All,

>

> I just have to let out my feelings again regarding my son's diagnosis. Can

> any of you out there give me your story? Did you think in the beginning it

> was a mistake? Maybe like me, your child didn't present with any

> problems/symptoms? My mother keeps telling me that I should be happy and

> grateful. I know that but its just so hard to accept when he is doing so

> well. Can they ever make a mistake? Is that so wrong of me to hope for

> that? I still continue with everything I have to do, meds, enzymes,

> therapy, etc. Maybe that is why he is doing so well.

>

> These past 9 months still feel like a nightmare that I am waiting to wake

> up from. Unfortunately, I've been awake the whole darn time!!!

>

> I have stopped nursing, it has been almost a month now. Do you think that

> might make him start presenting with some symptoms? He is on whole milk,

> and has had no problems.

>

> Sorry for my emotions, just can't seem to get my head around all this.

>

> Any advice, comments etc. are appreciated.

>

> Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2 yrs. wocf, Matty 9 mo. wcf