It's NOT an end all...

Okay... so this has been eating at me for awhile now.... I sent out my first email for the 2011 Great Strides walk... (which is also the first ever Great Strides walk for me).The email explained that Kaitlyn was recently diagnosed and that I was participating in the Great Strides walk. I sent them about 2 weeks ago. A couple days later I received an email back from a friend that said "SORRY TO HEAR THAT BUT IT ISN'T A END ALL! ENJOY THE TIME YOU HAVE TOGETHER AND GOD TAKES CARE OF THE REST"... I am hoping this friend meant the words to be comforting or inspirational maybe, but that is not how they are effecting me.  Am I imagining the insinuated "time you have LEFT together"? I haven't responded to this email, I am not sure how. Part of me wants to say, "would you say the same if it was one of your children?" "Would you have the nerve to say it to someone who has lost their loved one to CF?" Another part of me wants to say "Damn right it's not an end all! It's just the beginning."

It really is a beginning. It's a beginning of a life long fight for Kaitlyn. It's a beginning of hours spent everyday fighting to stay healthy.... A beginning of vest therapy and nebulizer treatments, of enzyme replacements, and special vitamins. It's a beginning of frequent infections and antibiotics. It's a beginning of even more frequent doctors visits, lab work and "preventative hospitalizations" (not to mention the not so preventative ones). It's the beginning of a more careful lifestyle, because God forbid she get sick. It's the beginning of us panicking every time our daughter so much as coughs.  It's the beginning of our fight to save our daughter! This disease may not be quite the "death sentence" it once was, but it's still hanging there over her head for the rest of her life. I read everyday of someone who lost a son, daughter, sister, brother, mother, father, aunt, uncle, friend, or some other loved one to CF. Some of these people are in there 20's, or 30's, some in there 40's even, but there are still plenty that are still children. Try telling one of their loved ones that a CF diagnosis isn't an "end all".

This comment hurts for another reason... this doesn't come from some random stranger. This comes from a "friend". Someone I've known since high school. Someone who has known my daughter her whole life. If the roles were reversed, I can't imagine saying such a thing to him. I have been trying my best to stay positive through all of this. Especially right now as I wait (impatiently of course) for Gabby's test results to see if she too has CF. This fight is hard enough for one, but I am not sure how we'd handle it if both of our girls have this. (Luckily Josh is safe, since he isn't my biological child and it is not likely Chrissy is also a carrier.... he has had no symptoms, so they just say he'll need to be tested later in life to see if he's a carrier.... because he could potentially have a child with CF if he is. Hopefully he isn't and it will never be an issue, but he is aware that in the future it will need to be done.)

I've tried figuring out why this is bothering me so much.... is it really just the words he used, or is it maybe a little bit of me just being mad at the situation? Maybe it's a little of both....  I admit I am still trying to come to terms with all this. It's still very fresh and raw. I have good days and bad. I have angry moments and sad moments, (but I have a lot more happy ones).... for now I guess I just have to breathe through it.