is 4

[Guest guest]

Folks,

Our family celebrated my daughter (w/CF) 's 4th birthday this

weekend... and like many of you, each year I remember the joy of her birth,

followed several weeks later by the devasting heartache of her and her

older brother's diagnosis with CF. I remember looking at all the " little

girl " dresses given to when she was born, and wondering which one I

would have to bury her in. She seemed so fragile back then. I remember the

fog I lived in for nearly a year, going thru the motions of living while at

the same time daydreaming about driving my car into oncoming traffic just

so it could all end. This all sounds so melodramatic, but it was how I

really felt.

To all of you with newborns, going thru the tough postpartum period made

tougher by the news of CF, I just wanted to write to say the pain does

pass! And life does eventually return to normal. As I look back on that

time now, four years later, I barely recognize myself. CF isn't a big part

of our lives in our family. It isn't the crippling disease I feared. It

is not going to take my children from me tomorrow, or next year or even ten

years from now. It is something we have to deal with, everyday, and it is

a real pain in the butt, but at least it is a disease that there are new,

effective treatments for, and there is some hope of curing it in my

children's lifetimes. In the meantime, they can run and jump and sing and

play and go to school and learn like all the other kids, something so few

special needs children can do. And I can do something to help my kids, I

can tirelessly raise money for CF and hope that some brilliant scientist or

doctor will figure out how to defeat this disease soon. I know they are

getting close. I get a lot of satisfaction out of being able to fight the

monster that threatens my children.

is a scrappy, pink cheeked, chubby, healthy, energetic, smart

little girl. No one would ever guess, out of all of the kids in her class

at preschool, that she is the one with CF. She takes her enzymes four at a

time with a single gulp of water. She is not intimidated by any adult,

even one wearing a white coat. She has a maturity that I don't think I had

until I was 20, and I really admire her.

Happy birthday, !

Janet