I realize this is long, but it was sent to me & I thought it was very powerful...so I decided to share! "Raising a child with CF teaches you things you never thought you would need to know or ever have to learn to deal with in a million years. This is what I have learned… I have learned that bravery comes in all shapes and sizes. On two separate occasions, I have watched nurses try to thread a catheter through Sean’s veins in his arm up into his chest only to find out afterwards, the numbing medicine didn’t work. Both times, Sean felt the entire procedure. And both times Sean didn’t shed a tear. He has been hospitalized six times, sat still through three cat scans, had seven PICC line procedures and has had 2 sinus surgeries. He swallows anywhere between 20-25 pills a day, spends over an hour of his time doing his treatments and has had more x-rays, blood draws, physicals and tests than I care to count. And while I would be lying if I said that Sean has never complained or tried to get out of something he didn’t want to do. I can honestly say that almost without exception, he sits patiently through all that is thrown at him and he handles it all with a maturity and understanding beyond his years. Sean also has taught me that breathing is not a right, but a privilege. Sean literally fights for his breath every day. He wakes up at 5:30 every morning to do his treatments before going to school and squeezes in his second set between homework, chores, sports and play. We hear him coughing on and off all day and most nights. In fact, coughing is such a part of his life, for the most part, it blends in with the background noise of our family routine. But if his coughing changes even just slightly, we all take notice. We mentally take note and spend the next few hours, days or even weeks listening and waiting and wondering… I now know that the only conversation harder than the dreaded “birds and bees talk” is sitting down with your son and explaining what a life expectancy means and what that life expectancy is for a person living with CF today. I have learned that hugs and kisses are often more for the moms than for the children. We all know that moms are supposed to have supernatural powers. We wipe away tears, soothe scraped knees, search for monsters under the beds and basically make all the bad things in our life disappear. But as a mom of a child with CF, that job is a little bit harder. You see…. In our house we actually have monsters lurking in the dark. It is called Cystic Fibrosis. And no matter what I do, I simply don’t have the power to make my son’s disease go away. I have wiped away thousands of tears, given at least a million kisses, but I can give my son the one thing he really needs. Instead I keep doing the only thing I know how to do. I keep on kissing, hugging and loving on the outside. But on the inside I am hoping and praying and wishing I could do more. I also have learned that life isn’t fair and that it isn’t always divided up into neat, even portions. Bad things sometimes happen to good people. Children do get sick. And sometimes you just have to give up the whole Polyanna-every-thing-is-going-to-be-okay act and just admit that “CF sucks” that you hate is with every ounce of your being. It is okay to feel sorry for yourself just a little bit every once in awhile, as long as you are able to pick yourself up, dust yourself off, and come up fighting even harder for the next round. However, not all the lessons that CF has taught me are difficult or painful. There ARE good things about CF. For example, I have a very strong understanding that an entire person cannot be defined by one small genetic mutation and just because you are labeled “sick” doesn’t mean you have to act that way. And that same person’s life can’t be confined by a single number of a predicted life span. Statistics may give out “averages,” but that doesn’t mean my son can’t be “above average” and lead a full and amazing life. Life is precious and full of surprises. It is meant to be lived full tilt, without regrets and with open minds, hearts and spirits. Sean has taught me that and more. "
Posted on: Wed, 17 Jul 2013 03:03:26 +0000
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