tag:blogger.com,1999:blog-8207455552139284342.post3813107714567823285..comments2024-01-24T08:47:26.674+08:00Comments on Faith, Hope and Joy: Dwarfism: Disease, disability or just different?Nicolehttp://www.blogger.com/profile/10147429806244730166noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-8207455552139284342.post-70412222470651478362010-07-13T15:46:19.447+08:002010-07-13T15:46:19.447+08:00You are so so right in all that you have said here...You are so so right in all that you have said here. My form of dwarfism (Morquio) has many complications so I don't hesitate to call it a disability because it is. Nevertheless my frustration really begins when people can not see past my wheelchair or other adaptive equipment. And I love what you said about God making those with dwarfism (and probably your daughter) short. When I was in grade school we had a neighbor who was praying for my healing and when my mom found out she felt guilty because it never crossed her mind! LOL!!! It's a hard thing for some people to really get but I bet anything your daughter, with a loving and supportive family behind her, will help them understand. :) <br><br>Danette Baker<br>Spokane, WashingtonAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8207455552139284342.post-52366192243325180282010-07-13T22:21:19.747+08:002010-07-13T22:21:19.747+08:00Thanks for the interesting post! Since we carry a ...Thanks for the interesting post! Since we carry a gene for a lethal dwarfism, I tend to think of it more as a disease- after all,it killed my child. I can understand how those whose children have types that are not lethal would disagree with viewing their child as having a long-term disease or disability, as labeling can feel offensive, and I'm sure that the dwarfism isn't what they see when they look at their child. <br>I hope you are doing well as you approach your due date! Such an exciting time for you and your family (and the little bub).Amyhttp://www.blogger.com/profile/12199373748547106950noreply@blogger.comtag:blogger.com,1999:blog-8207455552139284342.post-7571685757735688382010-07-13T22:25:58.717+08:002010-07-13T22:25:58.717+08:00Great post, Nic! Your observation about Zaccheus ...Great post, Nic! Your observation about Zaccheus is an interesting one, and I think it's a very real possibility. God's got his hand on your daughter, and regardless of her stature, she's going to be blessed. Praying for you and Bernie, and excited for the coming addition to your family.<br><br>NateAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8207455552139284342.post-48048643646351681372010-07-14T13:28:42.622+08:002010-07-14T13:28:42.622+08:00I think you got it right! I think when it comes to...I think you got it right! I think when it comes to the term disease most POLP cringe because a disease is something that people search to cure. There is no need to cure short stature. In my daughters case her condition is Osteogenesis Imperfecta otherwise known as Brittle Bones Disease or Disorder (another not so accepted term). The word disease is right in the name of her condition! This does bother me, I don't feel like my daughter needs to be cured. God made her this way and I accept her the way she is! This isn't to say that I won't do everything in my power to help her! She does receive bone strengthening IV medicines to prevent some painful fractures, ease chronic bone pain and give her a better quality of life! Just as parents of children with Achondroplasia would absolutely help get their children the decompression surgeries to treat severe Hydrocephalus (life threatening)that arrise due to their type of dwarfism. In our case we accept the term disability almost... Yes my daughter has a disability, she can not walk or even stand without the use of durable medical equipment such as pediatric walkers and wheelchairs. I am now favoring the words "differently abled" and wish that the majority of the popultaion and government would accept this as a better non offensive term. The definition of "disabled" is just so upsetting! Look it up in the dictionary and you will see this "incapable, disqualify, crippled, incapacitated, injured, restricted, limitted, not able bodied..." When I look at my differently abled daughter I don't see all that she can't do, I see all that she CAN DO, heck I don't even see her as differently abled! I see her as my Sonya! There are no lables! I think that the majority of the population is unfamiliar with the PC terms that are preferred and that's where awareness needs to shine which you are doing an awesome job of just by blogging this post! I didn't even realize that the term "handicap" wasn't PC until just recently! I agree with Danette, it's just so hard for some people to get past all the equipment and wheelchair and see the person for who they really are! Too many people just get so hung up on lables. When someone meets my daughter I want them to say "I just met a sweet girl today named Sonya" not "I just met a sweet dwarf/disabled/really different girl today." Just like your skin color doesn't define who you are, your body type doesn't either. Just my 2 cents! You are doing a fantastic job Nicole! You are so ready to be the best mom for your baby!!!Melissa Swartleyhttp://www.blogger.com/profile/11688196881304259275noreply@blogger.com