Thursday, March 11, 2010
Denial is not a river in Egypt......
My brain hurts....earlier today Piper, the author of "A Matter of Life and Breath" a blog right here on Blogspot, posed some very thought provoking points that I have mulled over and over and over and over......well you get the point. She questioned the idea of being positive vs being real in the face of such a massive foe, CF of course :)
I won't sit here and lie and say that there aren't days that I am angry, there are days that I refuse to acknowledge her disease, days that she gets her medicine and her treatments but the reality gets shoved waaaaay back to the farthest reaches of my mind, days that I want to sit and cry, days that I go camera crazy and film her doing the most normal random things "just in case", there are days that I search for life insurance, burial insurance, wonder if I would make her funeral the send off of a princess or a dark solemn event.....I go there, I would be foolish and unrealistic if I didn't validate those feelings by giving them light just every once in a while. Of course Im worried, of course Im scared, I know every sound she makes, every different cough and whats wrong by the sound of it, I know the color of her snot and every other bodily fluid and excretion and know what its supposed to look like at all times and can tell you when there is even a slightest change.....
But the honest to God truth of the matter is that those dark places, those dark moments are not the reality of CF, at least not the CF that I deal with day in and day out. The reality of the CF that I see, that I deal with on a daily basis is a 3 year old little girl painting herself with permanent markers, munching on popcorn, peeling wrappers off of crayons and calling me at the top of her lungs everytime its time to wipe her boohiney. My reality is taming the squiggle wiggle worm while trying to do manual CPT, chasing after her with 5cc of Periactin because she thinks its funny to see Mommy run, and ooooooopen wide when its time for enzymes....Im grateful for these times and I thank God everyday for the life that I have, even the bad days.
That being said, just because this is my reality today, does not mean that this will always be my reality. As a matter of fact, we just got the call today to schedule a training day for Natalie's new Vest System....a corner, a revelation, a change in Natalie's condition....hence a new reality.
Just because things wont always be this way doesn't mean that I cant use my blessings and good fortune to help others, and by help, I mean staying positive, encouraging those who need it, and supporting those who need it the most in any way that I can. And what a disservice it would be to my daughter if all I ever focused on was the textbook reality of CF, and what an ugly reality it is.
I guess what it all comes down to is that the way you approach this disease is as unique as the disease itself.....we all have our own feelings, our own approach, and every single way is valid, its real, and its ours.