Re: Re: Pregnancy thoughts...GUILT

[Guest guest]

I have thought about this for decades. I was born in the late 1930's

and just discovering the pancreatic involvement of cf, great though

it was later for all of us, I did not learn that cf was hereditary, for a

fact,

despite the many cousins who seemed to have something like what

I did until 1971. That is when I really began to think--a lot, daily for

hours. Why? Because I had already had my children, learned that

my youngest had cf, that my husband's nephew had cf--and still the

CFTR had not been found nor the convoluted conditions that result

in mutaions. I suspect that we would have had the kids anyway, but

there is that moment when my youngest, now 38, scrutinizes me and

says " Well, nowadays, they could have prevented this (by selection

and implantation of ova and sperm. " I tell kid that in 1976 this country

made a decision not to test all newborns for cf nor to test families in

which carrier state was likely to occur. " Kid " looks at me with big blue-

grey eyes with a yellow ring around the iris into my very dark ones.

I say, " Would you have preferred not to have existed and been born? "

" Kid says " Of course not, dumby! " (We have these very immature dis

cussions about the great issues of the universe. The older kids are a

bit more " adult " about our discussions.

So, as a person wcf who is a mother of a cf child, did my husband,

Hans Steinkellner, and I ever feel GUILTY? You bet we did, and as I

am miraculously still alive, I still do, and I do not hesitate to say that if

my youngest should pass before I do, I may become intimately familiar

with tranquilizers or something equivalent for a while.

However, am I proud of the kids, 2 carriers and 1 wcf?--you can bet on it!

Would I take this from them in a heart-beat--you bet--because I can

not know, and likely will not, whether that 3d one will have as long a life

as I have been priviliged to enjoy, nor what symptoms the carriers may

yet develop, and they have plenty!

So, gang, as those of you who know me know, I am a neuropsycholog

ist. I know to tell myself to take responsibility, and not waste time on

guilt! Not so easily done.

We have had a wonderful family life; the " kids " have great lives, and

my own life continues to be a joy--except when I get REALLY SICK!!!!!

I would guess that most parents, wcf or no cf, being nonetheless carriers,

can understand that it is hard to see anything good in this

Constant Fixation of Cystic Fibrosis--but we keep trying, do we not?

Love to all of you at cfparents,

n Rojas

ps and then there are the grandchildren, grandnieces, grandnephews...

[Guest guest]

That was the most beautiful reply I believe I have ever seen. More power to

ya!!!!! I cannot imagine my life without any of my three children. is

just now getting to that " hard " stage of the disease, I think. She actually

told me to call her dr. today to order a new antibiotic to see if it would get

her through her softball tournament this weekend, which is the last one of

the season for fastpitch. It is the Dizzy Dean World Series and she definately

does not want to miss that. She will be going in the hospital I am sure when

we go Aug. 5 for a regularly scheduled visit. But....

I cannot imagine not getting to see her play softball, or anything else she

does for that matter. That would be such a deprivation. She is a very special

child, not only to our family, but our entire community. Everyone always

asks about her, and remembers her. Her life may be different, you never know.

You know, life doesn't come with guarantees. I totally believe it is better to

have lived and loved ( a child in this case) than never to have loved at all.

I just wanted to say " You go girl!!!!! " Your reply to the pregnancy

discussion was awesome and I totally agree. The hurt will come when we all

pass, but

look at the awesome experiences in between.

Just my two cents worth.....

Sue Pettit

mom to (16 wocf), (12 wocf), and (11 wcf) diagnosed at

8 days of age at LeBonheur Childrens Medical Center in Memphis, Tennessee

[Guest guest]

n,

Very well put!

I have always wanted a house full of kids--mine and adopted both.

After six miscarriages, I finally gave up.

Knowing about CF as I do now, it may have been a blessing not to have those

kids. And given a choice I don't know if I would have still wanted to have

them.

Maybe its just because I know now how it feels to lose one. And how bad it

is when they are suffering.

Then I think of the great years, the smiles, the giggles and snuggles and I

wish I could have had at least one. :+{

And then I wonder if I would have been up to the task of taking care of a

child with CF.

But, that's not a choice I will have to find out about.

It is definitely a decision that would have to be made on the individual

circumstances and couple.

Oh, well--there's the two-cents from the non-Mom.

Give all those great kids out there a hug from me.

Aunt B