Guest guest Posted October 13, 2004 Report Share Posted October 13, 2004 Amen. I remember when my son was born with a very rare syndrome I was encouraged to join some support groups on town. I was deeply saddened to see that most of them saw themselves as parents of a disabled child. I always thought I was a parent of a child who happened to have a disability. Needless to say I found support elsewhere. Mainly from my close family and friends. Who better? Chris Disabled Kids In the recent path we discussed the topic of " blaming " ourselves for birthing club footed babies, feeling guilty, ashamed, not bonding with them, etc. Today I read an artical and it had this following paragraph in it that I thought was wonderful. In a few short words it sums up mountains of dialog. More than a decade ago, my colleague Adrienne Asch and I began a review of published narratives written by parents and persons with disabilities with what struck us as some simple truths. We wrote, " The most important thing that happens when a child with disabilities is born is that a child is born. The most important thing that happens when a couple becomes parents of a child with disabilities is that a couple becomes parents " (Ferguson & Asch, 1989, p. 108). However, when we look at the history of professional responses to the birth of such a child, we find patterns of research and practice that have, until recently, assumed that the disability itself inevitably overwhelmed all other considerations. The direction of the logic shifted, but the supposedly tragic connotations of such births were consistently presented as inherent and immutable. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2004 Report Share Posted October 13, 2004 That was beautifully stated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2004 Report Share Posted October 13, 2004 I'm sooooo glad I read this today. We just found out last week that our daughter can't hear and her club feet are the least of her issues. Honestly I've been feeling sorry for myself and for her. Which is a shame because she's the most happy baby in the world and for all that she can't hear she loves to laugh about everything and smiles all the time. I guess part of my problem has been that all her health care providers are quick to blame me because I'm diabetic and my blood sugars were out of control the first weeks of my pregnancy. So I'm feeling guiltly on a regular basis and have been feeling that way since I found out I was pregnant. Doctors are not always kind at least not in my experience. So maybe now I'll be able to look at this differently. Thanks for sharing it's helped already! > That was beautifully stated. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2004 Report Share Posted October 13, 2004 Aw sweetie, don't beat yourself up over spilled milk that may or may not have been your fault in the first place. Enjoy your daughter, enjoy motherhood, enjoy all the little bitty treasures with all your might. There are a lot of good resources out there on the web for teaching infants sign-language before they can even talk, so you can be one up on the game teaching her to communicate with you s. I'm sooooo glad I read this today. We just found out last week that our daughter can't hear and her club feet are the least of her issues. Honestly I've been feeling sorry for myself and for her. Which is a shame because she's the most happy baby in the world and for all that she can't hear she loves to laugh about everything and smiles all the time. I guess part of my problem has been that all her health care providers are quick to blame me because I'm diabetic and my blood sugars were out of control the first weeks of my pregnancy. So I'm feeling guiltly on a regular basis and have been feeling that way since I found out I was pregnant. Doctors are not always kind at least not in my experience. So maybe now I'll be able to look at this differently. Thanks for sharing it's helped already! > That was beautifully stated. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2004 Report Share Posted October 14, 2004 Some believe you must mourn the loss of the baby you didn't get before you can accept the baby you did get. Just a thought I had this morning on this topic. s. Amen. I remember when my son was born with a very rare syndrome I was encouraged to join some support groups on town. I was deeply saddened to see that most of them saw themselves as parents of a disabled child. I always thought I was a parent of a child who happened to have a disability. Needless to say I found support elsewhere. Mainly from my close family and friends. Who better? Chris Disabled Kids In the recent path we discussed the topic of " blaming " ourselves for birthing club footed babies, feeling guilty, ashamed, not bonding with them, etc. Today I read an artical and it had this following paragraph in it that I thought was wonderful. In a few short words it sums up mountains of dialog. More than a decade ago, my colleague Adrienne Asch and I began a review of published narratives written by parents and persons with disabilities with what struck us as some simple truths. We wrote, " The most important thing that happens when a child with disabilities is born is that a child is born. The most important thing that happens when a couple becomes parents of a child with disabilities is that a couple becomes parents " (Ferguson & Asch, 1989, p. 108). However, when we look at the history of professional responses to the birth of such a child, we find patterns of research and practice that have, until recently, assumed that the disability itself inevitably overwhelmed all other considerations. The direction of the logic shifted, but the supposedly tragic connotations of such births were consistently presented as inherent and immutable. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2004 Report Share Posted October 14, 2004 Just wanted to let everyone know that the Pediatric Orthopedic Foundation, Inc. will be conducting a weekly chat on Thursday's at 9pm. Our first chat will be tonight. To participate in the chat, please go to www.pediatric-orthopedic-foundation.org, click on the chat page and follow directions from there~! We would love to see you! Founder/Executive Director Pediatric Orthopedic Foundation, Inc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2004 Report Share Posted October 14, 2004 Funny, I've never thought of my son as being " disabled " . Perhaps that is thanks to Dr. Ponseti and his amazing treatment, as I know that my son will be as normal as any other child! Number23 number23@...> wrote:In the recent path we discussed the topic of " blaming " ourselves for birthing club footed babies, feeling guilty, ashamed, not bonding with them, etc. Today I read an artical and it had this following paragraph in it that I thought was wonderful. In a few short words it sums up mountains of dialog. More than a decade ago, my colleague Adrienne Asch and I began a review of published narratives written by parents and persons with disabilities with what struck us as some simple truths. We wrote, " The most important thing that happens when a child with disabilities is born is that a child is born. The most important thing that happens when a couple becomes parents of a child with disabilities is that a couple becomes parents " (Ferguson & Asch, 1989, p. 108). However, when we look at the history of professional responses to the birth of such a child, we find patterns of research and practice that have, until recently, assumed that the disability itself inevitably overwhelmed all other considerations. The direction of the logic shifted, but the supposedly tragic connotations of such births were consistently presented as inherent and immutable. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2004 Report Share Posted October 14, 2004 Funny, I've never thought of my son as being " disabled " . Perhaps that is thanks to Dr. Ponseti and his amazing treatment, as I know that my son will be as normal as any other child! Number23 number23@...> wrote:In the recent path we discussed the topic of " blaming " ourselves for birthing club footed babies, feeling guilty, ashamed, not bonding with them, etc. Today I read an artical and it had this following paragraph in it that I thought was wonderful. In a few short words it sums up mountains of dialog. More than a decade ago, my colleague Adrienne Asch and I began a review of published narratives written by parents and persons with disabilities with what struck us as some simple truths. We wrote, " The most important thing that happens when a child with disabilities is born is that a child is born. The most important thing that happens when a couple becomes parents of a child with disabilities is that a couple becomes parents " (Ferguson & Asch, 1989, p. 108). However, when we look at the history of professional responses to the birth of such a child, we find patterns of research and practice that have, until recently, assumed that the disability itself inevitably overwhelmed all other considerations. The direction of the logic shifted, but the supposedly tragic connotations of such births were consistently presented as inherent and immutable. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2004 Report Share Posted October 16, 2004 > That is the most wonderful statement I have ever > heard. > > Most people I encounter feel sorry for me. I do not > feel sorry for us, I feel greatful. > > I am greatful that this is all that ails my child and > that I was not given more to carry. For 's > treatments we go to Children's Hospital in Boston and > we see other people with children in wheelchairs on > breathing machines, and others with great big pins > sticking out of limbs attached to metal apparatusis. > > I am greatful that my son is healthy and with the > proper treatment he will go on to live a full and > happy life. > > I embrace his treatment as part of who he is and I > love him for helping me to see past myself and > learning to give more of myself to his needs. > > I feel that we are what we make out of life. > > How does the statement go " When life gives you lemons, > make lemonade " . > > Now with that I will get off of my soap box and wish > you all a wonderful day. > > Dawn > 9/14/02 > 7/20/04, BCF 5 days till casts come off after > tenonomy. I agree! WE go to Shriner's Hospital in Springfield, MA and I see kids there with no legs, missing arms, kids who scream because of neurological problems and I am grateful that clubfeet is all my son has to deal with. It's difficult for us to go weekly for the casting, it's an all-day trip even with Angel Flight, but I am extremely grateful we found a Ponseti doctor BEFORE my son had surgery. and (born 11/10/03 with bilateral clubfeet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2004 Report Share Posted October 16, 2004 > > yes! it surprises me me how few people are aware of clubfoot and > it's treatment. i have been to every baby store in town (looking for > an extra large sleepbag) and not one employee was familliar with the > treatment. The other surprising thing is how many people either had clubfeet or know someone with them. Yesterday we met with my oldest son's teacher and the gifted and talented teacher about my son's advanced reading skills. , the one with casts, was crawling around on the floor. When I mentioned he had casts on the G&T teacher got very interested and when I said he had clubfeet, said, " So did I! " . Unfortunately he didn't have a Ponseti doctor and ended up having surgery on his foot. But you couldn't tell by watching him walk that he ever had anything wrong with his feet. Quote Link to comment Share on other sites More sharing options...
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