Saturday, May 1, 2010

Today is May 1st, this is National Cystic Fibrosis awareness month. I feel like I am constantly trying to make others aware. Wishing, hoping, praying and pleading for others to at least grasp a little bit of What Brandon and many others go through. I want so badly for others to get it. I have to understand that a lot of people see a perfect little boy and say he is fine. Its easy to forget about someone who doesn't look sick. I also find it hard for people to understand the difference of a genetic disease and non genetic disease. The horrible thing about this all is it took me having Brandon to get it myself. I have a cousin with CF just two years younger than me. I remember her breathing machine and my grandma hand clapping her chest as kids, its just what she had to do. I remember the applesauce and the enzymes, but I guess being so young I never really knew what CF was, just that it was going to take my cousins life. Life expectancy was a lot lower when we were kids. My cousin moved away when she was young and then we barely saw each other and then I just carried on with life. I still feel like I should have known more. She is now one of my best friends even though she is 34 hours away from me.

As I sit here thinking about Brandon and all he goes through I feel humbled. How often even I take for granted how easy a breath is, or the ability to eat food and my body uses it for fuel. I can only grasp from a witness standpoint of how hard it really is, how easily he gets out of breath compared to others his age. How his pleading cry to not want to eat his food comes from the pain it causes him. How he sees me pull out the tubing and his vest and he gives me a look as if he dreads this, yet knows he has too. How a boy of almost two should be worrying about a puzzle piece and learning silly songs. How my boy of almost two sits on the kitchen counter every morning to take his previcid, bactrim, zitromax, AquaAdex vitamin, chewable vitamin, cod liver oil, loratidine, 2 nasal sprays, and 3 enzymes in applesauce, like a trooper patiently waiting his goat's milk protein shake. How my boy of almost two then gets to play for an hour before he gets strapped into his vest for 30 minutes while he breathes in albuterol and HyperSal, to follow he has his lunch which is like a therapy session to try to get him to eat. He takes his nap and then wakes up to be a normal little boy playing in the sandbox and throwing balls across the yard. How every evening he takes more bactrim and singulair before we sit down for the "big" treatment. We spend the next hour and forty-five minutes going with 30 minutes vest, breathing in albuterol, hyperSal, pulmozyme and pulmicort. How after all this is done my little man has to go to bed to start the process again the next day, and the next, and the next and so on...... how not one day in his life does he get to take a break from this, or it will jeopardize his health and livelihood.How he spends three hours a day to be able to do a tenth of what we can do. How I can look in my son's eyes and see pure Joy, he really lives life and he carry's a smile with him wherever he goes. He doesn't let CF take him down. He is a rowdy dirt playing, water splashing, car vrooming, dinosaur roaring little boy. This is why I am passionate, this kid has moved mountains with a single cough. He has helped people quit smoking and want to find a meaning for their own lives. This amazing little guy makes all those who really do know him and understand a day in his life that if he can carry on on with a happy heart that they should too!

Awareness to me is not just about the negative things that takes a toll on all those with CF. It is about life and hope, joy and love. It highlights the fruit of the spirit. I feel blessed everyday because I get to live a life I never would have guessed to be, and better than I could have planned on my own. When you truly live life like you are dying and appreciate just that very moment you are in, its amazing and beautiful. A monkey at the zoo is now and amazing creation. It is hard to explain but I pray that you all get a chance to live in the now. I feel that if more people connected to things that are bigger than themselves they will learn to appreciate the small stuff. I can not predict what will happen to Brandon especially with all the new medicines that come out, but I do know that the one thing I can control is my attitude and the type of attitude I teach him. I really want people to know about CF because I love my son, my family, my cousin and, many other people love others who are fighting this disease. I want people to know about CF because there is hope. I want people to know about CF because simple things that one person could do could help save a life, like becoming an organ donor, or donating money toward development and research for new drugs. When someone gets involved or donates on any level it makes me feel loved in a love thy neighbor kind of way. I know this may sound a bit silly but its a different kind of love that I never knew of before. I am thankful, I am joyful and I am very blessed.

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