Well the day we have been waiting for 2 days off. Zach made this decision and I am so proud of him for it. By this time Thursday he will be resting in his hospital room the proud new recipient of a g-tube.
Many people have questioned his decision to get the tube placed now. I am proud of him for coming to the conclusion that his weight battle may never end without the help of the tube. It was an extremely grown-up decision for a 13 year old to make.
I can't imagine how hard it is for him. He has this "rare" disease, that no one in our family has. He knows 1 other person with CF (a girl his age in his school). He is almost 14, struggles to maintain a weight of 80-85 pounds (most kids his age are at least 100 or better), he is barely 5 foot tall (shortest boy in his class). He's active, but now that puberty has started being active and having trouble maintaining or gaining weight is really affecting his activity tolerance.
He often feels like he is battling this alone. I don't know how many times I have listened to him fight me on treatments because "you don't have to do them, no one else has to do them, why do I have to???" We hate this disease so much. Some days it seems like its a never ending battle. But then there are those days that it feels like we are finally beating this. Those are the days you live for. Those days when your kid just does his treatments without a fight, takes all his meds, doesn't hate life because he was dealt this shitty hand. The days when he stands up and says "YOU WILL NOT DEFEAT ME OR DEFINE ME". Those are the days we live for.
I am proud of him for deciding it was time to get the g-tube. I am proud of him for finally taking control of his health and starting to make decisions for himself.