tag:blogger.com,1999:blog-447392662850613354.post1746719394277979708..comments2024-02-25T10:24:30.868-05:00Comments on Special needs disability parenting BLOOM: 'I hope in me she sees something of herself'BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-447392662850613354.post-1684620755180155962010-07-06T11:52:14.290-04:002010-07-06T11:52:14.290-04:00Hi -- I just received this comment but for some re...Hi -- I just received this comment but for some reason it will not post, so I am posting it!<br /><br />----------------------<br /><br />Heather Morgan has left a new comment on your post "'I hope in me she sees something of herself'": <br /><br />I too share disability with my daughter. Kaitlyn is 9.5 and because of my poor experience with surgeries, we have so far been able to avoid surgical intervention, opting instead for afo's, a pavloc harness and other options. I was born with bilateral clubfoot and other challenges - she was born with bilateral hip dysplasia and the muscular challenges associated with clubfoot.<br /><br />Some days I am glad that I have the experiences I do behind me - I know where to go to get the help Kaitlyn needs. I know how to be her advocate, and how she feels in 37 degree heat with afo's chaffing at her legs - I know, because I have them on as well. And I can say quite truthfully, "if I can do it, so can you".<br /><br />But it also hurts in a place I cannot even describe to see her wrestle with the same problems as I have, and especially as she reaches puberty and the teen years, wonder how I will help her to navigate the body image and self esteem issues I know she will face.<br /><br />Thanks so much for highlighting the reality of this experience for those facing generational disability.BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-16436682128601483062010-07-06T10:48:32.152-04:002010-07-06T10:48:32.152-04:00I too share disability with my daughter. Kaitlyn ...I too share disability with my daughter. Kaitlyn is 9.5 and because of my poor experience with surgeries, we have so far been able to avoid surgical intervention, opting instead for afo's, a pavloc harness and other options. I was born with bilateral clubfoot and other challenges - she was born with bilateral hip dysplasia and the muscular challenges associated with clubfoot.<br /><br />Some days I am glad that I have the experiences I do behind me - I know where to go to get the help Kaitlyn needs. I know how to be her advocate, and how she feels in 37 degree heat with afo's chaffing at her legs - I know, because I have them on as well. And I can say quite truthfully, "if I can do it, so can you".<br /><br />But it also hurts in a place I cannot even describe to see her wrestle with the same problems as I have, and especially as she reaches puberty and the teen years, wonder how I will help her to navigate the body image and self esteem issues I know she will face.<br /><br />Thanks so much for highlighting the reality of this experience for those facing generational disability.Heather Morganhttp://www.lifespark.canoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-67423503186669945922010-05-19T13:57:28.969-04:002010-05-19T13:57:28.969-04:00Dearest Ellen,
Your daugther will one day see som...Dearest Ellen,<br /><br />Your daugther will one day see something of herself in you, as see wholeheartedly explains, "It is often said that children are a blessing, but you will forever be my saving grace."<br /><br />Yours truly,<br /><br />Matt KamaratakisAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-43400290544577926312010-05-19T12:56:14.887-04:002010-05-19T12:56:14.887-04:00So powerful Ellen. Your writing is poignant and r...So powerful Ellen. Your writing is poignant and real. As a sorority sister and college classmate I am embarrassed that I had no idea what you were living with. This is an amazing insight into your life and of those living with disabilites. Your positive spirit is truly an inspiration. I can't wait read more. I have just joined the blogging world and you will be one of my role models for sure.Sara Connerhttp://saraconner.tumblr.comnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-16822872684194814662010-05-18T21:08:05.172-04:002010-05-18T21:08:05.172-04:00Ellen, I loved this post! You're always so th...Ellen, I loved this post! You're always so thoughtful, and you do a great service to your kids with your positive, can-do attitude.Mayahttp://marfmom.comnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-39271188200381065932010-05-18T19:50:21.886-04:002010-05-18T19:50:21.886-04:00Ellen, I found this a fascinating piece -- especia...Ellen, I found this a fascinating piece -- especially in regards to the pain issues, and how Leah's fractures call up your own body's memories of 3 dozen fractures. I can't imagine how hard it must be to quiet those visceral reactions so that you can be present with Leah. <br /><br />I also found this very telling and honest:<br /><br />I’ve often heard parents say, “If I could bear the pain for my child, I would.” I have never said or even thought such a thing. I hate the pain. I just want it to go away and leave both of us alone.<br /><br />That is very much the reaction I had to Ben's recent hospitalizations and hearing him and other children in pain. <br /><br />I think you are a tremendous role model to Leah and to all of your children and that your everyday lives with OI provide fodder for important lessons in what matters in life.<br /><br />I hope you will share more with us about your research re assisted reproduction and genetic screening and your personal parenting experiences. Thanks again!BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-9762681807481076062010-05-18T19:42:16.155-04:002010-05-18T19:42:16.155-04:00I'll plug Elizabeth's interview of Bonnie ...I'll plug Elizabeth's interview of Bonnie Rough as well. I found it to be a very thought-provoking interview and cannot wait to read her book.Ellen Painter Dollarhttps://www.blogger.com/profile/04249909035254149073noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-82935268944422631182010-05-18T19:30:53.837-04:002010-05-18T19:30:53.837-04:00Elizabeth -- yes, readers should check out your in...Elizabeth -- yes, readers should check out your interview at:<br /><br />http://elizabethaquino.blogspot.com/2010/05/interview-and-giveaway.htmlBLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-67615482548328171352010-05-18T18:44:34.727-04:002010-05-18T18:44:34.727-04:00Ellen, thank you for sharing your story with us. B...Ellen, thank you for sharing your story with us. Both you and your daughter are beautiful -- I love, especially, how your heads are tilted toward one another. I look forward to your book!<br /><br />Louise -- This is certainly perfect timing alongside my own blog interview of Bonnie J. Rough and the release of her new book!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.com