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8月3日 A CF Life's important - if format messed up, click on 'blog' to fix.A CF life's important: (by Barry Dean) A CF's life's important now, we all have just a ball. Sure there are some fickle ones, but we love them warts and all. We are amazed at rumours of how some of you divide the healthy from the sick, the latter to deride. A CF's life's important now, new kids I have to meet. To check them out and smile them in, new friends are such a treat. But my days are all so long, it's all part of the art of staying fit and healthy; I'm still a valued part. (scroll down 4 the rest) A CF's life's important now, I was born with different genes. To do their job as well as yours, they just don't have the means. They are just a little different, some don't work so well. Some cause so much spit, from my cough I'm sure you'll tell. With physio twice a day I could tear out all my hair, while you're all out playing, I'm draped across a chair. There's polyps in my nose and thick mucus everywhere. So when I cough my heart out, please don't point and stare. My food does not digest, it needs a helping hand, so all these pills I have to take, and take them on demand. A CF's life's important now, there is so much to do, There's little time for play, unlike most of you. Such big names I have to learn and take them all in order. Look, here's just one day's lot and don't forget the water. Have I caught Pseudomonas, Serratia, Aspergillus or just the flu. Should I take Serotide and Tobra, or Prednisalone 1 or 2. No, No, that was last month, this time it's all new, there's AZM and Pulmozyme, Ensure and Creon too. Like you I dream of futures, High School and Uni days. Such high marks with easy, my parents to amaze. But some things in my future are all in such a haze, there's ports and pegs and buttons, no, not just another craze. Central lines and transplants, 'twood leave you in a daze. But we don't all need everything, so my hopes are always raised. A CF's life's important now, we live from day to day. We tell ourselves just do it, we know we'll be OK. Sometimes it seems so empty, is it worth the strife. To stay fit and healthy, should not be just my aim in life It seems to take more effort to go a little further, Whoever invented CF, him I'd like to murder. A Cfs life's important now, I know it, OH! so well. There's still more to my story, keep listening while I tell. God smiles at me as well, and holds me in His hand, and so I'll live my best each day, He knows all of life's plan. Life won't get me down for long, troubles won't find me sunk. Remember that negro proverb, 'God don't make no junk', 8月1日 My philosophyIf Jesus gives us abilities it is only for 1 of 2 reasons. 1. to use as a means of support - like eat, ie!!. But as I already work - and don't eat much then : 2. my abilities are to be used for teh only other reason - to help others, where possible. With this in mind, I look foreward to the happiness each sketch brings to kids - and parents; 180 so far. It's special to teh CF kids and until He directs me otherwise will remain that way. On the way (scroll down) through life though, expect your motives 2 b misunderstood, misrepresented and cop the jealousy - and worse - of some; not easy, though I try not to show it (not always successfully though). |
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