Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 Very eloquently said and I agree to a certain extent but maybe my situation is different in that the time spent on treatments and money spent on co-pays have killed us. With the kids sick at different times many plans are changed. My kids are to the age of undertstanding and HATING IT! My husband was my soulmate - whom I adored but CF has reaked havoc everywhere in my life. His coping skills are escape and denial and I live in the real world. yes I hope hope for a cure, but for me I sometimes think of the Titanic --- with one child its easy to be hopeful with 3 you wonder " What are the odds of all three getting a lifeboat? " I am really an optimist and a realist. , you sound like I did 7 years ago...when we thought only my daughter had it. 2 diagnosis' later I am optimistic but a realist maybe even a cynic...........Hope is what keeps us going. Without it why would any us get up and spend 3-4 hours a day doing treatments. My life is my children. Your wife is lucky you are so supportive..........STAY THAT WAY!!!!!!!!!!! Its the day in day out living with CF that wears you down. What CF Center are you at? Rosemary in NY with 3 children (13, 11 and 7) with CF. I have a dog named TOBI and have coined the phrase " BREATHE DAMMIT " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 My sentiments exactly! You really don't have to look to far to find someone that is worse off than you or your family. It has been 13 years since my daughters diagnosis. They have made such great strides in the treatment of CF. The information we got at that point told us that children may not live to see grade school. This was just not true. I wish I had the wonderful cf parents group then. The day that our doctor gave us the information he told us, " This is the price you pay for loving someone. " To this day, it rings true in our family, this disease has brought us closer and stronger and the small insignificant stuff just doesn't matter. Our comment has always been, " So what are they going to do, give my kid Cystic Fibrosis! " Life is always a choice. Our family chooses to live each day to the fullest. When we go to bed we know that we have loving children and spouses and that if we don't wake up tomorrow that it can't get any better than this. Tina W. Re: 's Son - Strength Ok, what I am going to say now will sound like religion but it's not (although you may want to take it in that way). Note that there is no mentioning of religion or God, just the mentioning of a little story (which you may replace with any other wordly event). In the Old Testament there is a story of 's son being sold as a slave and the father thinking that he died. For twenty years, the father thinks the son was dead and could not find comfort. He mourned for all 20 years. Later on, he finds out that ph not only is alive but is the vice-King of the whole civilized world. Basically, what happened is that mourned for 20 years when he didn't need to. Had he known what was going on, he should have been rejoicing exceedingly. We should take a lesson from the story. I don't think we are on the level of being able to be happy when death occurs, but we should at least be on the level of not becoming sad when the sad events didn't happen yet. From the beginning of my knowing about CF in my child, my question has been: " what's the worse case scenario and is there hope " . I want to know what's the worse scenario in order to know if there is reason to be happy - if the child will live ok, then there's no reason to worry. A child with an OK life is a major blessing - many people today can't have children and many don't even find their soulmate. " is there hope " - If there is hope, then too, let's be happy and confident that the best outcome will be achieved. It would be a terrible loss if we were to worry for so many years when later on, it's found that our fears didn't materialize. Even if the worse materializes, we have done the right thing in living our lives in the best way we could. It takes training not to be pessimistic, but it's something we must do. So, in summary, I tell my wife: " the operation will go well, the child will recover well and the cure will be found in 30 years from now - don't worry about what you " don't know " . > Dear , > I know I am a bit behind in some of my posts today as I have been away > at conf. BUT. > I do want to send best wishes for all the get well thoughts I can for > that wee one of yours. Surgery so young is harder mentally on the > parents. Our had surgery at 2 days & of course we were all scared > to death ............She is fine and all of 19+ years now , You'll be > looking back one day too with great results. Progress is being made.. > > LOVE & HUGS, > grandmomBEV > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 True, very true. Very insightful too. What a great addition to this list you are turning out to be! Mom of , 5 with CF and one on the way Re: 's Son - Strength Ok, what I am going to say now will sound like religion but it's not (although you may want to take it in that way). Note that there is no mentioning of religion or God, just the mentioning of a little story (which you may replace with any other wordly event). In the Old Testament there is a story of 's son being sold as a slave and the father thinking that he died. For twenty years, the father thinks the son was dead and could not find comfort. He mourned for all 20 years. Later on, he finds out that ph not only is alive but is the vice-King of the whole civilized world. Basically, what happened is that mourned for 20 years when he didn't need to. Had he known what was going on, he should have been rejoicing exceedingly. We should take a lesson from the story. I don't think we are on the level of being able to be happy when death occurs, but we should at least be on the level of not becoming sad when the sad events didn't happen yet. From the beginning of my knowing about CF in my child, my question has been: " what's the worse case scenario and is there hope " . I want to know what's the worse scenario in order to know if there is reason to be happy - if the child will live ok, then there's no reason to worry. A child with an OK life is a major blessing - many people today can't have children and many don't even find their soulmate. " is there hope " - If there is hope, then too, let's be happy and confident that the best outcome will be achieved. It would be a terrible loss if we were to worry for so many years when later on, it's found that our fears didn't materialize. Even if the worse materializes, we have done the right thing in living our lives in the best way we could. It takes training not to be pessimistic, but it's something we must do. So, in summary, I tell my wife: " the operation will go well, the child will recover well and the cure will be found in 30 years from now - don't worry about what you " don't know " . > Dear , > I know I am a bit behind in some of my posts today as I have been away > at conf. BUT. > I do want to send best wishes for all the get well thoughts I can for > that wee one of yours. Surgery so young is harder mentally on the > parents. Our had surgery at 2 days & of course we were all scared > to death ............She is fine and all of 19+ years now , You'll be > looking back one day too with great results. Progress is being made.. > > LOVE & HUGS, > grandmomBEV > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 Don't ever worry about typos and misspellings.........n is the queen followed by me her loyal servant........ I am glad your son is at Columbia....its the best in the area and that he is doing well. Rosemary in NY with 3 children (13, 11 and 7) with CF. I have a dog named TOBI and have coined the phrase " BREATHE DAMMIT " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 ; Rosemary is right; I send out the most amasing things--kind of look like they were written in Polish in our alphabet; we have greater things on our minds than typing, grammar or word useage--at the moment! Type away! Send it off! n, the Queen (I like that one!) of terrible typing! On lots of lists! Re: Re: 's Son - Strength > Don't ever worry about typos and misspellings.........n is the queen > followed by me her loyal servant........ > > I am glad your son is at Columbia....its the best in the area and that he is > doing well. > > Rosemary in NY with 3 children (13, 11 and 7) > with CF. I have a dog named TOBI and have > coined the phrase " BREATHE DAMMIT " > > > Quote Link to comment Share on other sites More sharing options...
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