Monday, May 6, 2013
May is national Cystic Fibrosis Awareness month and usually I would post something every day on Facebook but this time, I just don't want to. I am so damn aware of it that I'm sick of it. It almost feels like a celebration of all things CF and I am just not there right now. How can I celebrate the monster that is slowly but surely stealing my child from me?? I know it's part of who he is and I should celebrate that part but I just can't. The people who go on Facebook and get to read the daily little tidbits of information, hardly ever even hearing of the disease, are the lucky ones. You get to slowly raise your awareness level and learn about the disease. Not us. We (all CF parents) get thrown into it. Tossed like a rag doll. We have to land on our feet and hit the ground running. We have to learn quickly how to take care of our children. We have to learn terminology like PICC, port, nebs, FEV1, G tubes, NG tubes, GJ tubes, Vests, Sputum, Postural drainage, Pancreatic insufficiency, etc. etc. We have to make decisions for our children based on the little medical knowledge we've gained since diagnosis and it's hard to know we are doing the right thing. Is a G tube better than a GJ tube or should we start with an NG and work our way to a G tube? The list goes on and on. I remember when Abby was a baby and I would creep into her room to make sure she was still breathing. I do that now with Michael and it means something completely different because back then I didn't REALLY think she would stop breathing. It was more of an excuse to see her in all her blissful innocence. I can't say the same now. I really DO check on him to see if he's still breathing. So yes, I am CF aware. I'm aware that my son needs a new set of lungs or he will die. I'm aware of the moments I have where I think of what it truly means if he dies. It means gone forever, no longer with us and it stops my heart, steals my breath and leaves me paralyzed with dread and fear. I'm aware of the many, many tears I've cried for him and all my children. I'm aware that I may have to bury my children and I'm aware that it shouldn't be that way. I'm aware that it's impossible for my children to have a normal childhood because so much of it is interrupted by treatments, hospital stays, medications and illnesses. I'm aware that my daughter is scared as she watches her brother wasting away from the same disease she herself has. I'm aware that someday Aiden may be an "only child". I'm aware that there is no break from this disease, no remission. I'm aware that it can take a person quickly and without warning and you can't EVER let your guard down. I'm aware that my heart aches so bad I think it's going to burst out of my chest when I hear of a parent that lost their child to this disease. I'm aware that a cure is so close we can almost reach out and touch it but I'm also aware that it won't do Michael any good. CF has ravaged his body and left his lungs too damaged to be cured. I'm aware every single minute of every single day. Oh yes, I am CF aware. Are you??