Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 Well said Cindy. That is the way it was explained to me also. What is also unusual is that my step son had leukemia, his wish was granted 11 years ago. He is now a healthy adult. Please keep trying...every child deserves a wish. chronic illness in life Rosemary, I loved 's wonderful post. However, chronic worrying is so hard, and with little support as well. I think so often of you and all your kids, but especially of . She must be so depressed and sad about her health. I hope that those doctors can do more for her, and I hope that things will therefore be a bit easier for you. Love to you, and to all parents coping with so much, n Rojas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 Well said Cindy. That is the way it was explained to me also. What is also unusual is that my step son had leukemia, his wish was granted 11 years ago. He is now a healthy adult. Please keep trying...every child deserves a wish. chronic illness in life Rosemary, I loved 's wonderful post. However, chronic worrying is so hard, and with little support as well. I think so often of you and all your kids, but especially of . She must be so depressed and sad about her health. I hope that those doctors can do more for her, and I hope that things will therefore be a bit easier for you. Love to you, and to all parents coping with so much, n Rojas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 , my son was 17 and has Cf and is not " sick " and his wish was granted last year so I dont think that is correct what you were told. I would look into that with Make a wish, It is for Children with Chronic or life threatening illness and that is what your child has, it is not about them dying, so you need to look into that,.. CF is not a curable disease so it doesnt matter if the child is 10 or 18 their wish will be granted because their cf isnt going away. I asked all of those questions so that is how I know. I don't understand how Yale could have guidelines for Make a wish it is a non profit organization. You contact them and I guarantee you they will say your child will be accepted but the doctor has to just sign that your child has cf. Your child is not ever going to get over cf. I had a friend who's child had cancer 8 years ago and is fine now but had his make a wish granted so what are they going to make him pay it back. I just dont see the rational in that Yale is saying your child isn't sick enough. Sorry for my ranting but this upset me very much. Please try Make a Wish again, I hate to see your child not get to experience this wonderful organization because of some doctors arrogance. Cindy chronic illness in life Rosemary, I loved 's wonderful post. However, chronic worrying is so hard, and with little support as well. I think so often of you and all your kids, but especially of . She must be so depressed and sad about her health. I hope that those doctors can do more for her, and I hope that things will therefore be a bit easier for you. Love to you, and to all parents coping with so much, n Rojas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 , my son was 17 and has Cf and is not " sick " and his wish was granted last year so I dont think that is correct what you were told. I would look into that with Make a wish, It is for Children with Chronic or life threatening illness and that is what your child has, it is not about them dying, so you need to look into that,.. CF is not a curable disease so it doesnt matter if the child is 10 or 18 their wish will be granted because their cf isnt going away. I asked all of those questions so that is how I know. I don't understand how Yale could have guidelines for Make a wish it is a non profit organization. You contact them and I guarantee you they will say your child will be accepted but the doctor has to just sign that your child has cf. Your child is not ever going to get over cf. I had a friend who's child had cancer 8 years ago and is fine now but had his make a wish granted so what are they going to make him pay it back. I just dont see the rational in that Yale is saying your child isn't sick enough. Sorry for my ranting but this upset me very much. Please try Make a Wish again, I hate to see your child not get to experience this wonderful organization because of some doctors arrogance. Cindy chronic illness in life Rosemary, I loved 's wonderful post. However, chronic worrying is so hard, and with little support as well. I think so often of you and all your kids, but especially of . She must be so depressed and sad about her health. I hope that those doctors can do more for her, and I hope that things will therefore be a bit easier for you. Love to you, and to all parents coping with so much, n Rojas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 Oh My Goodness Kim! That is so amazing! :)I'm crying like a baby. Wyatt has played baseball for 2 years now. One year t-ball and last season coach pitch. He's a mighty fine player if I say so myself. I could picture that being him Thanks for sharing. Christy > Cindy, > > In 1993, 's doctor contacted The Brass Ring Society (based out > of Florida) because he wanted to give a surprise. I didn't even > know 's doctor set this up until the Brass Ring Society called > me! > > Maybe Make-A-Wish has since changed their guidelines, but we were told > that you do have to be at a certain level of bad health before they'll > grant your wish. I guess it's because there are so many kids that they > want to reach the sickest ones first. That's understandable. > > But the Brass Ring Society doesn't impose those guideslines. If you > have CF, you qualify based upon that alone. They're philosophy is they > want the kids to get their wishes while still healthy enough to enjoy > it. > > It certainly was a memorable occasion for the whole family! They flew > us round trip to Orlando, Florida. We were greeted at the airport by > Brass Ring Society volunteers -- a retired couple and one of their > retired friends. They said they loved retirement, living in Florida > and volunteering for the BRS because they got to meet people from all > over the US. > > They took us to get our rental car (also paid for the week!), but when > the learned what kind of car the rental company was giving us, one of > the volunteers protested and negotiated an upgrade: a brand new > minivan. > > Our one-week stay at the hotel was completely paid for; we got > complimentary breakfast at the buffet every morning and the hotel > manager had a huge basket of fruit put in our room with a note > welcoming us. > > The BRS gave us $300 to use for food and souvenirs. They gave us > several rolls of film and told us to take lots of pictures, then told > us to send the film to them afterward. They paid the cost of having > the film developed then sent the pictures to us! > > They gave us 3-day passes to Disney World and a one-day pass to Sea > World (my kids loved that the most). got to meet his baseball > idol, former Mets catcher , and they let him be batboy > during a spring training practice for the Florida Marlins. This > was the Marlins' inaugnaral year. > > But 's most memorable moment wasn't meeting -- yes, he's a > nice guy and does lots of charity work for cancer (his mom died of > cancer), but that part felt sort of staged. looked really > uncomfortable when met him and immediately asked how he was > feeling. knew then this was all about CF and it felt like pity. > > Despite CF, was a normal, intelligent 14-year old boy who > had played baseball since he was 6 years old -- and was doggone good > at it too (lead his league in stolen bases, was pitcher but loved > playing shortstop, second or first base most). > > No, the most memorable moment was during practice when first > baseman, Oresta Destrada, came over to after his turn at bat; > he put his hand on 's shoulder and leaned down whispering to him, > " You're doing a fine job. " Then he gave his batting gloves -- > these huge, butter-soft black leather gloves. walked 10 feet off > the ground after that. > > The next day we attended the season opener,and before the game all > these boys were crowded in the stands directly above the Marlins' > dugout, clutching balls and cards hoping to get the autographs of the > most important players. The players were on the field warming up, and > -- who was the announcer for the Marlins' -- was on the field > being interviewed about his newfound position. > > desperately wanted to go over to see if he could get Destrade's > autograph so I through the bleachers with him to where the other boys > were crowded. And soon, Destrade came out of the dugout to warm up. > was suddenly shy and afraid to call out to him, he didn't think > he'd remember him! Normally I'd allow 's shyness but something > pushed me to push him -- so I said, " Just call out his name, do it! " > > So he finally raised his voice high enough for Destrade to hear, and > Destrade turned around, spotted and waved, calling back, " Hi > ! " You should have seen the jaws drop on those other boys! > > held up his ball -- a universal sign any player understands to > mean " Will you autograph this? " In return, Destrade held up his glove, > waiting for 's pitch. He caught the ball then realized he didn't > have a pen -- so motioned us for a pen. I started digging through my > purse, found one and threw it to Destrade. Destrade signed the > ball and threw it back up to us, along with the pen. > > When we got back home, three baseballs sat prominently on 's > shelf: the one signed by , the one signed by the Marlins > after batting practice... but the most special was the one signed only > by Destrade. He was the one who recognize the hopes, dreams and stars > in 's eyes -- not the CF. > > Kim > Mom to (23 asthma and cf) and (20 asthma no cf) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 Oh My Goodness Kim! That is so amazing! :)I'm crying like a baby. Wyatt has played baseball for 2 years now. One year t-ball and last season coach pitch. He's a mighty fine player if I say so myself. I could picture that being him Thanks for sharing. Christy > Cindy, > > In 1993, 's doctor contacted The Brass Ring Society (based out > of Florida) because he wanted to give a surprise. I didn't even > know 's doctor set this up until the Brass Ring Society called > me! > > Maybe Make-A-Wish has since changed their guidelines, but we were told > that you do have to be at a certain level of bad health before they'll > grant your wish. I guess it's because there are so many kids that they > want to reach the sickest ones first. That's understandable. > > But the Brass Ring Society doesn't impose those guideslines. If you > have CF, you qualify based upon that alone. They're philosophy is they > want the kids to get their wishes while still healthy enough to enjoy > it. > > It certainly was a memorable occasion for the whole family! They flew > us round trip to Orlando, Florida. We were greeted at the airport by > Brass Ring Society volunteers -- a retired couple and one of their > retired friends. They said they loved retirement, living in Florida > and volunteering for the BRS because they got to meet people from all > over the US. > > They took us to get our rental car (also paid for the week!), but when > the learned what kind of car the rental company was giving us, one of > the volunteers protested and negotiated an upgrade: a brand new > minivan. > > Our one-week stay at the hotel was completely paid for; we got > complimentary breakfast at the buffet every morning and the hotel > manager had a huge basket of fruit put in our room with a note > welcoming us. > > The BRS gave us $300 to use for food and souvenirs. They gave us > several rolls of film and told us to take lots of pictures, then told > us to send the film to them afterward. They paid the cost of having > the film developed then sent the pictures to us! > > They gave us 3-day passes to Disney World and a one-day pass to Sea > World (my kids loved that the most). got to meet his baseball > idol, former Mets catcher , and they let him be batboy > during a spring training practice for the Florida Marlins. This > was the Marlins' inaugnaral year. > > But 's most memorable moment wasn't meeting -- yes, he's a > nice guy and does lots of charity work for cancer (his mom died of > cancer), but that part felt sort of staged. looked really > uncomfortable when met him and immediately asked how he was > feeling. knew then this was all about CF and it felt like pity. > > Despite CF, was a normal, intelligent 14-year old boy who > had played baseball since he was 6 years old -- and was doggone good > at it too (lead his league in stolen bases, was pitcher but loved > playing shortstop, second or first base most). > > No, the most memorable moment was during practice when first > baseman, Oresta Destrada, came over to after his turn at bat; > he put his hand on 's shoulder and leaned down whispering to him, > " You're doing a fine job. " Then he gave his batting gloves -- > these huge, butter-soft black leather gloves. walked 10 feet off > the ground after that. > > The next day we attended the season opener,and before the game all > these boys were crowded in the stands directly above the Marlins' > dugout, clutching balls and cards hoping to get the autographs of the > most important players. The players were on the field warming up, and > -- who was the announcer for the Marlins' -- was on the field > being interviewed about his newfound position. > > desperately wanted to go over to see if he could get Destrade's > autograph so I through the bleachers with him to where the other boys > were crowded. And soon, Destrade came out of the dugout to warm up. > was suddenly shy and afraid to call out to him, he didn't think > he'd remember him! Normally I'd allow 's shyness but something > pushed me to push him -- so I said, " Just call out his name, do it! " > > So he finally raised his voice high enough for Destrade to hear, and > Destrade turned around, spotted and waved, calling back, " Hi > ! " You should have seen the jaws drop on those other boys! > > held up his ball -- a universal sign any player understands to > mean " Will you autograph this? " In return, Destrade held up his glove, > waiting for 's pitch. He caught the ball then realized he didn't > have a pen -- so motioned us for a pen. I started digging through my > purse, found one and threw it to Destrade. Destrade signed the > ball and threw it back up to us, along with the pen. > > When we got back home, three baseballs sat prominently on 's > shelf: the one signed by , the one signed by the Marlins > after batting practice... but the most special was the one signed only > by Destrade. He was the one who recognize the hopes, dreams and stars > in 's eyes -- not the CF. > > Kim > Mom to (23 asthma and cf) and (20 asthma no cf) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 Oh My Goodness Kim! That is so amazing! :)I'm crying like a baby. Wyatt has played baseball for 2 years now. One year t-ball and last season coach pitch. He's a mighty fine player if I say so myself. I could picture that being him Thanks for sharing. Christy > Cindy, > > In 1993, 's doctor contacted The Brass Ring Society (based out > of Florida) because he wanted to give a surprise. I didn't even > know 's doctor set this up until the Brass Ring Society called > me! > > Maybe Make-A-Wish has since changed their guidelines, but we were told > that you do have to be at a certain level of bad health before they'll > grant your wish. I guess it's because there are so many kids that they > want to reach the sickest ones first. That's understandable. > > But the Brass Ring Society doesn't impose those guideslines. If you > have CF, you qualify based upon that alone. They're philosophy is they > want the kids to get their wishes while still healthy enough to enjoy > it. > > It certainly was a memorable occasion for the whole family! They flew > us round trip to Orlando, Florida. We were greeted at the airport by > Brass Ring Society volunteers -- a retired couple and one of their > retired friends. They said they loved retirement, living in Florida > and volunteering for the BRS because they got to meet people from all > over the US. > > They took us to get our rental car (also paid for the week!), but when > the learned what kind of car the rental company was giving us, one of > the volunteers protested and negotiated an upgrade: a brand new > minivan. > > Our one-week stay at the hotel was completely paid for; we got > complimentary breakfast at the buffet every morning and the hotel > manager had a huge basket of fruit put in our room with a note > welcoming us. > > The BRS gave us $300 to use for food and souvenirs. They gave us > several rolls of film and told us to take lots of pictures, then told > us to send the film to them afterward. They paid the cost of having > the film developed then sent the pictures to us! > > They gave us 3-day passes to Disney World and a one-day pass to Sea > World (my kids loved that the most). got to meet his baseball > idol, former Mets catcher , and they let him be batboy > during a spring training practice for the Florida Marlins. This > was the Marlins' inaugnaral year. > > But 's most memorable moment wasn't meeting -- yes, he's a > nice guy and does lots of charity work for cancer (his mom died of > cancer), but that part felt sort of staged. looked really > uncomfortable when met him and immediately asked how he was > feeling. knew then this was all about CF and it felt like pity. > > Despite CF, was a normal, intelligent 14-year old boy who > had played baseball since he was 6 years old -- and was doggone good > at it too (lead his league in stolen bases, was pitcher but loved > playing shortstop, second or first base most). > > No, the most memorable moment was during practice when first > baseman, Oresta Destrada, came over to after his turn at bat; > he put his hand on 's shoulder and leaned down whispering to him, > " You're doing a fine job. " Then he gave his batting gloves -- > these huge, butter-soft black leather gloves. walked 10 feet off > the ground after that. > > The next day we attended the season opener,and before the game all > these boys were crowded in the stands directly above the Marlins' > dugout, clutching balls and cards hoping to get the autographs of the > most important players. The players were on the field warming up, and > -- who was the announcer for the Marlins' -- was on the field > being interviewed about his newfound position. > > desperately wanted to go over to see if he could get Destrade's > autograph so I through the bleachers with him to where the other boys > were crowded. And soon, Destrade came out of the dugout to warm up. > was suddenly shy and afraid to call out to him, he didn't think > he'd remember him! Normally I'd allow 's shyness but something > pushed me to push him -- so I said, " Just call out his name, do it! " > > So he finally raised his voice high enough for Destrade to hear, and > Destrade turned around, spotted and waved, calling back, " Hi > ! " You should have seen the jaws drop on those other boys! > > held up his ball -- a universal sign any player understands to > mean " Will you autograph this? " In return, Destrade held up his glove, > waiting for 's pitch. He caught the ball then realized he didn't > have a pen -- so motioned us for a pen. I started digging through my > purse, found one and threw it to Destrade. Destrade signed the > ball and threw it back up to us, along with the pen. > > When we got back home, three baseballs sat prominently on 's > shelf: the one signed by , the one signed by the Marlins > after batting practice... but the most special was the one signed only > by Destrade. He was the one who recognize the hopes, dreams and stars > in 's eyes -- not the CF. > > Kim > Mom to (23 asthma and cf) and (20 asthma no cf) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2002 Report Share Posted December 16, 2002 I think since its her WISH and if SHE wants all to go why not? You are all her parents!!! I go with my 3 children and husband=5 people. Try to prepare the child so she can say that cause I think it would be great. I would love to go somewhere and indroduce my current husband as my EX husband......LOL Rosemary in New York with 3 children with CF - they are 12, 10, 6...I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for this - TOBI after their medication! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2002 Report Share Posted December 16, 2002 I think since its her WISH and if SHE wants all to go why not? You are all her parents!!! I go with my 3 children and husband=5 people. Try to prepare the child so she can say that cause I think it would be great. I would love to go somewhere and indroduce my current husband as my EX husband......LOL Rosemary in New York with 3 children with CF - they are 12, 10, 6...I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for this - TOBI after their medication! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2002 Report Share Posted December 16, 2002 When my daughter was granted her wish last year, we went to Disney in Florida and they allowed Grandma to go, but she had to pay her own airfare, Disney admissions and food, but she had a place to stay for free! Trish Make A Wish Hello- I kind of have a strange question for all of you who have been granted a make a wish for your child. My stepdaughter got approved for a wish and they are coming tomorrow. Her dad and I and her mom and stepdad are all close and share 50/50 (one week on, one week off) we moved a few blocks away from them so we could do this. My stepdaughter wants to go to Hawaii and take all of us (total of 5). Do they send all of us or just her mom and dad? I don't care because I think her mom and dad should be the two to go but I don't want her to be disappointed. Thanks for answering such a lame question!!!! Becky - stepmom to 9 yr old w/cf ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2002 Report Share Posted December 16, 2002 When my daughter was granted her wish last year, we went to Disney in Florida and they allowed Grandma to go, but she had to pay her own airfare, Disney admissions and food, but she had a place to stay for free! Trish Make A Wish Hello- I kind of have a strange question for all of you who have been granted a make a wish for your child. My stepdaughter got approved for a wish and they are coming tomorrow. Her dad and I and her mom and stepdad are all close and share 50/50 (one week on, one week off) we moved a few blocks away from them so we could do this. My stepdaughter wants to go to Hawaii and take all of us (total of 5). Do they send all of us or just her mom and dad? I don't care because I think her mom and dad should be the two to go but I don't want her to be disappointed. Thanks for answering such a lame question!!!! Becky - stepmom to 9 yr old w/cf ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2002 Report Share Posted December 16, 2002 Becky, My ex and I also share custody of my son Josh w/cf. He lives about 1/4 of a mile up the road from us for that exact reason. When Josh was offered his wish the social worker asked if it would be a problem between the families because apparently they have had parents fight over it before. The way it was explained to me is that all of the children would be included and two adults. If the parents are divorced then they provide two rooms. What will probably happen is that the step parents will probably have to pay their own airfare, and maybe any difference that the hotel might require for double occupancy. Who knows, they might not even charge extra because of the nature of the trip. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2002 Report Share Posted December 16, 2002 Becky, My ex and I also share custody of my son Josh w/cf. He lives about 1/4 of a mile up the road from us for that exact reason. When Josh was offered his wish the social worker asked if it would be a problem between the families because apparently they have had parents fight over it before. The way it was explained to me is that all of the children would be included and two adults. If the parents are divorced then they provide two rooms. What will probably happen is that the step parents will probably have to pay their own airfare, and maybe any difference that the hotel might require for double occupancy. Who knows, they might not even charge extra because of the nature of the trip. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2002 Report Share Posted December 16, 2002 Becky, My ex and I also share custody of my son Josh w/cf. He lives about 1/4 of a mile up the road from us for that exact reason. When Josh was offered his wish the social worker asked if it would be a problem between the families because apparently they have had parents fight over it before. The way it was explained to me is that all of the children would be included and two adults. If the parents are divorced then they provide two rooms. What will probably happen is that the step parents will probably have to pay their own airfare, and maybe any difference that the hotel might require for double occupancy. Who knows, they might not even charge extra because of the nature of the trip. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.