English-speakers know of nursery rhymes about children who

[Guest guest]

resemble the presumed characteristics of the day on which they were

born--dismal rhyme.

It occurs to me that often the child with cystic fibrosis is the energetic,

curious, helpful and certainly bright child in the family, no matter how

paradoxical that may seem.

I have cf, and by the time our third child came along we knew that there

was a chance that my husband was a carrier--and we were as ready as

it is possible to be. So the shortest of our three arrived--calm, peace

ful, intently following motion, responding to language from the begin

ning, and just a bit frustrated at being held too much, too long, too

tightly.

And the wit of our branch of the family. When the kid was about three,

there was smog in the air, visible and obvious. This was explained. Kid

(wcf) said, " That is awful, Mom, why don't the adults DO something

about it? " And so it has gone--to this day at age 36.5+! Born calm and

able to put up with a great deal, but just INDIGNANT that the world had

not been more REASONABLY DESIGNED!

Having a child wcf is perhaps an even greater inducement to feelings of

guilt if one parent has cf, as the increased liklihood of the child having it

(by a factor of 2!) was not known; carriers were not even known. Talk

about arriving in Holland rather than Italy. We were convinced that we

had landed on a new planet, and yes, we did blame ourselves.

Until adolescence hit and all three kids blamed us for everything BUT

cf or any other condition, allergy or whatever! We were indeed fortunate.

Although the kid and I had both nearly gone at the birth, we

had, somehow, both survived. Oddly, it was my husband who died first--

leaving the children in shock for years! I suppose I must take responsi

bility for my own conduct during the first three years afterwards, but I do

think that I was for the first time in my life DAUNTED.

Life is not usual with cf, but it is and can be loving, kind, caring, full of

wonder and amazement, and I guess I always thought of my job as a

mother as one of not just doing the basic things, domestic and medical,

but setting the tone for the children. My middle child said to me, also at

about 3.5 years, " I like having this crazy kind of mother! " Really?????

And perhaps I was, but they still find me humorous and enjoy me, and

for that I am far more fortunate than many. But one never stops worrying

about one's children, especially the one with cystic fibrosis.

Once a mother, always a mother, I think. I come from a very long-lived

family, and when my first one was born, it hit me that what if I lived to

past a hundred as so many in my mother's family did, I would still be a

mother when the child was in its eighties! DAUNTING, as is the oppo

site as well.

Love to all our children with cystic fibrosis and all the parents on this

list who work so hard on behalf of all their children!

n Rojas, typing out loud again!

ps oddly, my mother, a carrier of cf, lived to 102.5! My sister, also a

carrier and the mother of a son with cf who died when he was 12, died

at 78.

[Guest guest]

Through happy tears she says.....

" LONG LIVE MARION!!!!!!! "

Christy Mom of Wyatt 7wcf and Hunter 3wocf