Guest guest Posted June 14, 2003 Report Share Posted June 14, 2003 I think we all go nuts when our child is diagnosed with cf. I went nuts. I am sure that my husband did, and I am absolutely certain that my own mo ther did, though I think my father kept his cool quite well. But, as I myself have cf, and my husband (as we found out during my preg nancy with the third one) has a nephew wcf and my sister had a son wcf, we did not have that feeling that we had to master an encyclopedia by yes terday. And one does not; we learn as we go, and each baby, with or without cystic fibrosis is unique and somehow we get through it. Somehow. I got through it in part because a close friend next door to me had four kids, two who were fine, one with muscular dystrophy, and one who was blind. Sort of perked me up to reality: illness and disability are what they are no matter what form they take; we are not alone. So, we became students, compliant parents with compliant kids (two had less severe conditions), and got on with it. It did help that we were surrounded by university cf clinics, children's hospitals and had superb medical care--far better than what I have in my dotage in this era. But we got through it. We dealt with each issue and we did not WORRY; we just coped. And we were fortunate in that my three kids with strange conditions and I with several survived. But my husband did not, and we were in shock. So, all I have to say is love those who love you, love anyone whom you do love in your life well, bec ause we truly do not know what may happen. We did not push people away and they did not reject us. Many came forward to help during my hus band's final illness and to comfort the children, who were in there 16-20. If this is something you would prefer to delete--do it, but I myself do care about those worried and young parents with new diagnoses! Love to all at cfparents, new members, long-standing members and the in- between ones, lurkers and posters alike! n Rojas, who continues to enjoy her children; enjoy all whom you can! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2003 Report Share Posted June 14, 2003 n, Very well said. I agree with you completely, one should always remember " It could always be worse " . Katy Mom to Austin almost 4 w/o CF & Piper 11 months w/CF Mcesana@... wrote: I think we all go nuts when our child is diagnosed with cf. I went nuts. I am sure that my husband did, and I am absolutely certain that my own mo ther did, though I think my father kept his cool quite well. But, as I myself have cf, and my husband (as we found out during my preg nancy with the third one) has a nephew wcf and my sister had a son wcf, we did not have that feeling that we had to master an encyclopedia by yes terday. And one does not; we learn as we go, and each baby, with or without cystic fibrosis is unique and somehow we get through it. Somehow. I got through it in part because a close friend next door to me had four kids, two who were fine, one with muscular dystrophy, and one who was blind. Sort of perked me up to reality: illness and disability are what they are no matter what form they take; we are not alone. So, we became students, compliant parents with compliant kids (two had less severe conditions), and got on with it. It did help that we were surrounded by university cf clinics, children's hospitals and had superb medical care--far better than what I have in my dotage in this era. But we got through it. We dealt with each issue and we did not WORRY; we just coped. And we were fortunate in that my three kids with strange conditions and I with several survived. But my husband did not, and we were in shock. So, all I have to say is love those who love you, love anyone whom you do love in your life well, bec ause we truly do not know what may happen. We did not push people away and they did not reject us. Many came forward to help during my hus band's final illness and to comfort the children, who were in there 16-20. If this is something you would prefer to delete--do it, but I myself do care about those worried and young parents with new diagnoses! Love to all at cfparents, new members, long-standing members and the in- between ones, lurkers and posters alike! n Rojas, who continues to enjoy her children; enjoy all whom you can! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2003 Report Share Posted June 15, 2003 Dear n, As usual you are so right! There is always a silver lining to everything. a's best friend was born with spina bifida, they have been friends since birth. Her friend is on a wheel chair, I think that this has given a a lot more perspective about her own situation than anything I could ever teach her. Love to all of you, > I think we all go nuts when our child is diagnosed with cf. I went nuts. I > am sure that my husband did, and I am absolutely certain that my own mo > ther did, though I think my father kept his cool quite well. > > But, as I myself have cf, and my husband (as we found out during my preg > nancy with the third one) has a nephew wcf and my sister had a son wcf, > we did not have that feeling that we had to master an encyclopedia by yes > terday. And one does not; we learn as we go, and each baby, with or without > cystic fibrosis is unique and somehow we get through it. Somehow. > I got through it in part because a close friend next door to me had four > kids, > two who were fine, one with muscular dystrophy, and one who was blind. > > Sort of perked me up to reality: illness and disability are what they are no > matter what form they take; we are not alone. So, we became students, > compliant parents with compliant kids (two had less severe conditions), and > got on with it. It did help that we were surrounded by university cf clinics, > children's hospitals and had superb medical care--far better than > what I have in my dotage in this era. But we got through it. We dealt with > each issue and we did not WORRY; we just coped. And we were fortunate > in that my three kids with strange conditions and I with several survived. > > But my husband did not, and we were in shock. So, all I have to say is love > those who love you, love anyone whom you do love in your life well, bec > ause we truly do not know what may happen. We did not push people away and > they did not reject us. Many came forward to help during my hus > band's final illness and to comfort the children, who were in there 16-20. > > If this is something you would prefer to delete--do it, but I myself do care > about those worried and young parents with new diagnoses! > > Love to all at cfparents, new members, long-standing members and the in- > between ones, lurkers and posters alike! > > n Rojas, who continues to enjoy her children; enjoy all whom you can! > > > > Quote Link to comment Share on other sites More sharing options...
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