Mike from the hypochondroplasia yahoo group posted a message last week about an article that would be posted in the Washington Post Magazine on Sunday, November 30th. We don't normally receive our Sunday paper on Saturday, so I was excited when I got home from our long drive to find it in the driveway. After I sent the kiddos to bed, I pulled out the magazine and started reading. I haven't finished the article, yet, but I thought I'd pass it on to you, so you can have the opportunity to read it, too.
Growing Pains by Caitlin Gibson
I guess limb lengthening is a controversial topic in the dwarfism community. And I can understand why, but I always enjoy hearing both sides. Caitlin Schroeder has hypochondroplasia like Evan does and so far it has been interesting reading her perspective on dwarfism as a teenager. She seems like a smart girl who has thought this through and is very fortunate to have supportive and understanding parents. I look forward to reading the rest of the article and seeing the outcome. I can't wait to hear what you think about it!
11.29.2008
Growing Pains
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So, my experience was pretty trivial compared to "hypo" (I'm hip) but it's the only way I can sort of relate.
Anyway, as you and Rob both know, I have big ears (or, at least they stick out a lot). They were even (relatively) bigger when I was growing up. Kids called me Dumbo and Big-ear-lobe (think of my last name) and other names and I hated every minute of it. The only fight I've ever gotten into was because somebody flicked my ears in sixth grade.
But, it's funny how things affect you in the long run. My wife and I talk about what we'd want to do if one of our kids had ears that stick out. Her perspective is that we should give the kid every advantage possible, help them avoid any hardship and have the ears fixed (pinned back, surgical fix, whatever). I certainly appreciate that perspective.
My perspective is that I'd let him (or her) live with it. Frankly, overcoming what I honestly felt was torture throughout my entire life, until about my mission, has helped me become a much stronger person. In many ways it has helped be better at living the gospel (and I've needed all the help I could get).
I loved what you said at the end of your post introducing the issue about getting up on the bunk bed and getting in the car and doing chores, etc (I actually got a little misty). I can't imagine two people better suited to raise a child with hypo. Heavenly Father must trust you two a lot.
What a fascinating article and what a strong young woman!!
You know, I still don't fully understand why LPA is so against Limb Lenghtening.
I have to say, it is a VERY difficult decision which, in my opinion, should be taken by the child. I think it can be difficult as a parent to stay neuttral about this though. I personnally know what I would decide if I was a little person but I hope I can stay neutral enough to not influence Anaïs' decision when the time comes.
I enjoyed reading the article. Caitlin seems like such a beautiful person. The people I know who have had this surgery don't do it to fit in or to look "normal." What is important to them is being able to live their lives without much assistance.
To comfortably do things like driving or reaching counters you generally need to be 5ft tall.
If one has the desire, money, and most importantly the physical and mental strength to go through the process I say go for it. The controversy is over being who God made you or trying through this process to live a fuller life. Ultimately, I believe it it up to the person getting it done.
It was a great article. I am not opposed to ELL. In fact I have visited Dr. Paley and have recently found out he is leaving Sinai next year. It is uncertain where he is going right now, but Dr. Standard and Dr. Herzenberg are very experienced. Fifteen inches of potential height is not cosmetic in my opinon-it is life changing. It was a tough article to read at times because as a parent we never want to see our kids in pain, but on the other side, we do have to make the decision when they are young. I would say it is pretty likely Preston will undergo lengthening-hopefully only one or two surgeries tops since he is pretty high on the achon chart insofar as height already. Of course nothing is set in stone, but I think this article and others (100 LPs a year is a lot) will help all of us as parents. Thanks Andrea.
"Handicaps" come in many forms. When I was a child I was teased merselessly by mean kids because i had to wear "special shoes". It is something that has affected me throughout my life. So I guess, after reading the artical, what I got out of it was that you have to be very strong emotionally either way. I would think that only the person with the disability would know just how much tolerence they have. The pain factor is a great unknown, so hopefully parents give these kids a chance to make the choice on their own and are supportive whichever choice they make. I honestly believe that 8 years old is too young for a child to make a decision this large. I do not have hypo, my grandson does, so my thoughts are only based on my own history and wanting only happiness for my grandson. I know that his parents want the same thing and I trust that his welfare is all that matters to them as well. Whatever choices are made, they will be in his best intrest.
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