Introductions

Now I think it's appropriate for you to be introduced to my family, the motivation for and source of any expertise I have on the subject of mothers of children with CF.

First, I think it's appropriate to introduce Holly, whom you're probably most anxious to meet. As you can see, she is a beautiful and talented young woman. She is a violinist and violin teacher, but that role comes a distant third behind her roles as wife and mother. Though CF has made reaching her goals difficult and sometimes forced her to take alternate routes to reach them, she has met them. Holly has an indomitable spirit. The more her goals are threatened by obstacles, the more determined she is to overcome them. The past year has been the most difficult yet, and there were times she thought she could not make it through another day. But she survived, and is now fighting her way back to health. More about that later. (Sometimes I will let Holly speak for herself.)


In my profile, you can see me with both of my daughters and granddaughters. If you click on "View my complete profile" you can see a larger picture. As you would probably guess, that's me on the left (the one with the white hair). Vanessa, my younger daughter, and her daughter, Brigid, are in the middle. Holly, who has CF, and her daughter, Murren, are on the right. Just in case you can't tell from the photo, I am crazy about my girls. They are my joy (and just once in a while, my pain :) ), but that's just between you and me. I will be sharing more photos as I continue to blog, because each of my girls is important to this story. I hope you'll keep coming back.

For CF Moms

You and I may be very different, and yet, we have so much in common. When others ask how we are or what's up? it's "Fine," and, "Not much." Then we run into one another and suddenly the social veneer we weren't even aware of drops and we share our hearts, our concerns, our fears and sometimes even celebrate joys. The questions change to: "How are his bowel problems? Hmmm ... sinkers or floaters ... or time for GoLytely?" "What color is her mucous? Is she able to cough it up?"

And then we have advice: "You might try putting the enzymes in mashed bananas instead of applesauce. Oh, and make sure he takes a drink before he sticks his fingers in his mouth!"

We celebrate when, despite the hour-long treatments morning and night, he makes honor roll or she makes first chair in orchestra. No one else understands the phenomenal effort it took to get there. We are proud for our children.

We share one another's burdens as well. We hurt when he learns that biological children are impossible without significant intervention. And we cry together when her PFTs drop again or the oxygen tank comes home to stay.

We belong to a very exclusive club -- that of mothers of children with cystic fibrosis. It's a club we did not choose and we hope our friends never have reason to join.

Most important of all, we are proud to be moms to these incredible children. These wonderful, wise-beyond-their-years, courageous, precious children. And difficult as our lives may be, they are also filled with a joy that makes it all worthwhile. Our children make every sacrifice, every heartache worth it. No regrets.

This blog is for you. I hope you will respond to my posts, make comments and pose questions. Welcome to "Faded Genes."