Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 > i don't know why I'm feeling this way today about the whole > situation. What you're feeling is perfectly normal. My son also has a progressive loss and I can't even begin to tell you the tears I've cried over this very thing. > I feel > guilty for feeling down about their hearing loss. You feel the way you feel - it doesn't matter why you feel that way. What matters is that you feel that way and I, for one, am here to support you. Been there, done that, and I share your pain. > I hate the fact that what hearing they do have will most probably be > gone at some point in their life. I well recall the day when JD looked up at me and said when he grew up like me, his hearing would be normal. It broke my heart to have to tell him that his hearing was getting worse as time went by, not better, and that when he was my age, he wouldn't be able to hear, even with his hearing aids. What really made it bad is that my son LOVES sound and wanted nothing more than to be able to hear. > maybe I can teach them > to appreciate the sounds of life - the birds and cars, the ocean, > telling them I love them - before it is all gone. The strangest things can make us break down in tears. I recall once when JD was about 3 and one of the neighborhood kids had gotten a seashell and was running around having everyone listen to the sound of the ocean in it. Try as JD might, he just couldn't hear it. I can't even begin to tell you why at that moment it was such a big loss that he would never be able to hear such a sound, but it was - and the tears flowed. > I feel cheated out of some things in life. If you haven't read WELCOME TO HOLLAND, do so NOW! http://www.listen-up.org/edu/holland.htm It wasn't till after I heard that recited by Warren Estabrooks at a conference 17 years ago that I was able to look at JD's hearing loss with new eyes. I've met Warren a few times and correspond with him frequently, and I thank him regularly for reading that passage and telling him how much it helped me - So much so that I got permission from it's author, Perl Kingsley, so that I could put it on my website and share it with all of you. > I made me feel like she was > thinking " oh well - she can't hear me anyway - there is no point " . > It broke my heart. I quit videotaping the Christmas Programs at JD's public schools. They just didn't get it. It just broke my heart to see the other kids stand up on the stage with pride, singing the Christmas songs and JD would just stand there obviously looking lost. I don't know why it was so important to them to keep 'hush-hush' what songs were going to be sung so I could at least teach JD the words. Each year he just stood there, wanting to participate, but not being able to. I still cry whenever I look at those videos. You should have seen his face the first year he attended a school that did 'get it' and was allowed to have a copy of the words to the song so he could participate. THAT would have been worth videotaping, but of course, I didn't take my camera. > it hurts to feel that some things might be out of their grasp simply > because they may not want to put the extra effort in to it. I'll share with you an analogy I've used through the years with JD, and he knows it well. Through the years, everything I've done for him has been to ensure that all the doors along the path that he is going to take through life are open. I wouldn't let anyone close a door for JD, if a door was to be closed, it was JD who would close it. It was up to JD if he was going to go through that door or not, but it was HIS option, nobody elses. And last month, as he was preparing to cross that stage for his High School Graduation, brimming with pride, he thanked me for opening the doors for him so that his future was HIS. > So > why do I feel so isolated sometimes? That's why we're all here. It's so difficult for others to understand what we go through emotionally - which is why this group is restricted to " Parents Only " . You don't have to feel guilty about how you feel - the fact is that you feel that way, and we're here to offer you an understanding shoulder to either cry on or to support yourself with. -Kay Kay kay@... The Listen-Up Web http://www.listen-up.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 Wow Kay, that was a great post! Almost had me getting teary here at the office! It's really true that every once in a while some things really hit home about having a child with hearing loss, even when you think it's more or less routine. I remember a similar experience when Hannah asked me if her hearing loss was going to get better if she kept wearing her hearing aids - and I had to tell her no. As a guy, I'll also confirm the previous posters' comments in this thread about husbands not seeming to react so emotionally to the realization that a child has hearing loss. My wife grieved openly and loudly, and was always a very emotional person, so I tried to take it in stride and not make such a big deal about it - not that I went through that thought process, but that was the way we did things. I was forced into a more active role as my wife became disabled, and I had to handle most of the medical appointments. And since her death last year I am the only parent, so I'm taking on more of the emotions - and really glad we found Listen-Up. So thanks everyone, and hang in there! - --- Listen Up! kay@...> wrote: > > i don't know why I'm feeling this way today about the whole > > situation. > > What you're feeling is perfectly normal. My son also has a > progressive loss > and I can't even begin to tell you the tears I've cried over this > very > thing. > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 Wow Kay, that was a great post! Almost had me getting teary here at the office! It's really true that every once in a while some things really hit home about having a child with hearing loss, even when you think it's more or less routine. I remember a similar experience when Hannah asked me if her hearing loss was going to get better if she kept wearing her hearing aids - and I had to tell her no. As a guy, I'll also confirm the previous posters' comments in this thread about husbands not seeming to react so emotionally to the realization that a child has hearing loss. My wife grieved openly and loudly, and was always a very emotional person, so I tried to take it in stride and not make such a big deal about it - not that I went through that thought process, but that was the way we did things. I was forced into a more active role as my wife became disabled, and I had to handle most of the medical appointments. And since her death last year I am the only parent, so I'm taking on more of the emotions - and really glad we found Listen-Up. So thanks everyone, and hang in there! - --- Listen Up! kay@...> wrote: > > i don't know why I'm feeling this way today about the whole > > situation. > > What you're feeling is perfectly normal. My son also has a > progressive loss > and I can't even begin to tell you the tears I've cried over this > very > thing. > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 Wow Kay, that was a great post! Almost had me getting teary here at the office! It's really true that every once in a while some things really hit home about having a child with hearing loss, even when you think it's more or less routine. I remember a similar experience when Hannah asked me if her hearing loss was going to get better if she kept wearing her hearing aids - and I had to tell her no. As a guy, I'll also confirm the previous posters' comments in this thread about husbands not seeming to react so emotionally to the realization that a child has hearing loss. My wife grieved openly and loudly, and was always a very emotional person, so I tried to take it in stride and not make such a big deal about it - not that I went through that thought process, but that was the way we did things. I was forced into a more active role as my wife became disabled, and I had to handle most of the medical appointments. And since her death last year I am the only parent, so I'm taking on more of the emotions - and really glad we found Listen-Up. So thanks everyone, and hang in there! - --- Listen Up! kay@...> wrote: > > i don't know why I'm feeling this way today about the whole > > situation. > > What you're feeling is perfectly normal. My son also has a > progressive loss > and I can't even begin to tell you the tears I've cried over this > very > thing. > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 Sara, You've gotten a lot of great responses so far. I'd venture to say that we have all been where you are. It's hard to see that it can get better right now, but it will. It won't leave your mind, but it won't consume it 24/7. I agree that some days are harder than others, but in the beginning they are ALL hard! I have to say a turning point for me was a day when I was trying to get information about school systems & their special education departments because we were moving, possibly to another county. I was trying to get information not knowing if my 2.5 year old daughter had a hearing loss, a processing disorder, something else, something in addition... I spoke with a very nice lady who took time to call me back on her son's graduation day. Her daughter is the one with hearing loss, but she had many, many other problems - to the point where her hearing loss was the least of their worries. But she still took the time to call back little ol' me whose daughter JUST had a hearing loss. She spoke so highly of her daughter, and all of her children for that matter. How they all handled her disabilities amazed me. It left an impression on me that I will never forget. We all have obstacles, big and small, many and few, and we handle them one at a time the best that we can. We all get down about this. Here are the things that I get down about: I hate the fact that my daughter has to wear her processor to hear what the rest of us hear normally. I hate that other kids (and even some adults) look at her funny, ignore her, talk about her, and treat her different. I hate that her hearing depends on a battery. I hate that she can't hear when she's in water. I hate that it is so much work for her to hear. I hate that it seems to identify who she is sometimes. I hate when people assume they know what it's like to have a hearing impaired child when they clearly don't and possibly never will. On the other hand, I love that I've been introduced to an entire world that I didn't even pay attention to before. I love the dedicated professionals that I have met along the way that work because they like helping these kids more than they like having an enormous paycheck. I love that my daughter is happier with her processor on than with it off. I love that she is more animated in a hearing world than she was in a silent one. I love that I can vacuum my daughter's room when she's sleeping. I love that I am now saying " will you please be quiet " instead of " will she ever talk again?. " My husband is the same way as yours, too. I think they grieve differently than we do. And my husband just doesn't understand that I don't want any more kids because of this. I feel comfortable with 's hearing loss, her CI and her progress. At the same time I don't want another child to go through the same thing. I think I would be sad if our next child had a hearing loss, and sad if they didn't. I mean, it makes me sad now just to put next to a " normal " child her age, much less have a hearing sibling to compare to. Gee, I can't imagine why he doesn't understand that?!?!!??! : ) Please know that you are not alone. You can come here to vent anytime. It's a tough thing to wrap your mind around, and everyone here can relate more than anyone else. Hang in there, take one day at a time and shed a tear (or a few) when you need to. Randi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 Sara, You've gotten a lot of great responses so far. I'd venture to say that we have all been where you are. It's hard to see that it can get better right now, but it will. It won't leave your mind, but it won't consume it 24/7. I agree that some days are harder than others, but in the beginning they are ALL hard! I have to say a turning point for me was a day when I was trying to get information about school systems & their special education departments because we were moving, possibly to another county. I was trying to get information not knowing if my 2.5 year old daughter had a hearing loss, a processing disorder, something else, something in addition... I spoke with a very nice lady who took time to call me back on her son's graduation day. Her daughter is the one with hearing loss, but she had many, many other problems - to the point where her hearing loss was the least of their worries. But she still took the time to call back little ol' me whose daughter JUST had a hearing loss. She spoke so highly of her daughter, and all of her children for that matter. How they all handled her disabilities amazed me. It left an impression on me that I will never forget. We all have obstacles, big and small, many and few, and we handle them one at a time the best that we can. We all get down about this. Here are the things that I get down about: I hate the fact that my daughter has to wear her processor to hear what the rest of us hear normally. I hate that other kids (and even some adults) look at her funny, ignore her, talk about her, and treat her different. I hate that her hearing depends on a battery. I hate that she can't hear when she's in water. I hate that it is so much work for her to hear. I hate that it seems to identify who she is sometimes. I hate when people assume they know what it's like to have a hearing impaired child when they clearly don't and possibly never will. On the other hand, I love that I've been introduced to an entire world that I didn't even pay attention to before. I love the dedicated professionals that I have met along the way that work because they like helping these kids more than they like having an enormous paycheck. I love that my daughter is happier with her processor on than with it off. I love that she is more animated in a hearing world than she was in a silent one. I love that I can vacuum my daughter's room when she's sleeping. I love that I am now saying " will you please be quiet " instead of " will she ever talk again?. " My husband is the same way as yours, too. I think they grieve differently than we do. And my husband just doesn't understand that I don't want any more kids because of this. I feel comfortable with 's hearing loss, her CI and her progress. At the same time I don't want another child to go through the same thing. I think I would be sad if our next child had a hearing loss, and sad if they didn't. I mean, it makes me sad now just to put next to a " normal " child her age, much less have a hearing sibling to compare to. Gee, I can't imagine why he doesn't understand that?!?!!??! : ) Please know that you are not alone. You can come here to vent anytime. It's a tough thing to wrap your mind around, and everyone here can relate more than anyone else. Hang in there, take one day at a time and shed a tear (or a few) when you need to. Randi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 Sara, You've gotten a lot of great responses so far. I'd venture to say that we have all been where you are. It's hard to see that it can get better right now, but it will. It won't leave your mind, but it won't consume it 24/7. I agree that some days are harder than others, but in the beginning they are ALL hard! I have to say a turning point for me was a day when I was trying to get information about school systems & their special education departments because we were moving, possibly to another county. I was trying to get information not knowing if my 2.5 year old daughter had a hearing loss, a processing disorder, something else, something in addition... I spoke with a very nice lady who took time to call me back on her son's graduation day. Her daughter is the one with hearing loss, but she had many, many other problems - to the point where her hearing loss was the least of their worries. But she still took the time to call back little ol' me whose daughter JUST had a hearing loss. She spoke so highly of her daughter, and all of her children for that matter. How they all handled her disabilities amazed me. It left an impression on me that I will never forget. We all have obstacles, big and small, many and few, and we handle them one at a time the best that we can. We all get down about this. Here are the things that I get down about: I hate the fact that my daughter has to wear her processor to hear what the rest of us hear normally. I hate that other kids (and even some adults) look at her funny, ignore her, talk about her, and treat her different. I hate that her hearing depends on a battery. I hate that she can't hear when she's in water. I hate that it is so much work for her to hear. I hate that it seems to identify who she is sometimes. I hate when people assume they know what it's like to have a hearing impaired child when they clearly don't and possibly never will. On the other hand, I love that I've been introduced to an entire world that I didn't even pay attention to before. I love the dedicated professionals that I have met along the way that work because they like helping these kids more than they like having an enormous paycheck. I love that my daughter is happier with her processor on than with it off. I love that she is more animated in a hearing world than she was in a silent one. I love that I can vacuum my daughter's room when she's sleeping. I love that I am now saying " will you please be quiet " instead of " will she ever talk again?. " My husband is the same way as yours, too. I think they grieve differently than we do. And my husband just doesn't understand that I don't want any more kids because of this. I feel comfortable with 's hearing loss, her CI and her progress. At the same time I don't want another child to go through the same thing. I think I would be sad if our next child had a hearing loss, and sad if they didn't. I mean, it makes me sad now just to put next to a " normal " child her age, much less have a hearing sibling to compare to. Gee, I can't imagine why he doesn't understand that?!?!!??! : ) Please know that you are not alone. You can come here to vent anytime. It's a tough thing to wrap your mind around, and everyone here can relate more than anyone else. Hang in there, take one day at a time and shed a tear (or a few) when you need to. Randi Quote Link to comment Share on other sites More sharing options...
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