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Tuesday, July 3, 2012

Sharing Our News: Family

Since we are visiting friends and relatives, I didn’t want to have to explain Belalu’s condition over and over, so I decided to email everyone before we left. And then I sat staring at the screen.  How much should I tell them? How many details to include? What details can I include, if we don’t know how this condition will manifest itself for her?

I thought about the term “dwarfism.” I almost didn’t include it, but then I decided that I had to. If I just use the medical term and explain its effects, people may not really get how significant this is. Part of me believes that in terms of who she is, hypo is a very minor part of Belalu as a person. However, I would be naïve if I didn’t recognize that it will shape who she is as she gets older. So, if I didn’t explain that hypochondroplasia is a form of dwarfism, I felt like I was only telling part of the truth. However, I also knew that as soon as I put that word out there, it would be impossible to remove from people’s minds. In the end, I did include it. I just felt like I would be trying to hide or gloss over the truth if I didn’t. (This is for family and friends- not random strangers or even acquaintances I run into- for those folks, I do not mention dwarfism).

I also have become aware that the way I tell people about hypochondroplasia reveals my own concerns. I almost always say, “Hypochondroplasia is a milder form of dwarfism,” as if I’m trying to soften the blow of the news (For them? For me? For both). Yes, it may mean she’ll be taller than if she had another form of dwarfism, and/or she may have less medical complications, but really neither is necessarily true. But I tell myself that it gives people something to cling to when they don’t know what to say. “Oh, well that’s good! At least the complications aren’t too severe.” Or something to that effect. Really, though, I’ve come to realize that that little word, “milder,” has helped me to cope with all the unknowns. Rationally, I know that she can still easily have complications or may have problems fitting in with her classmates at times, but it’s just as possible that she won’t. So, I’m choosing to envision positive scenarios when I think about her future.

5 comments:

  1. I actually have a huge problem with all of this. In the Uk there is a great word: restricted growth condition. This is what I use, I then explain that her bones are not growing correctly and her limbs are a lot shorter. It is a LOT less shocking and stigmatizing. I know lots of people are fine with using the word dwarfism or even dwarf to describe their child. I think the mild part is a bit misleading to all, just as the whole height thing to be between 118-150 cm, that is quite difficult to process...

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    1. That is why I was so torn about whether to use the term "dwarfism" or not. It is shocking and stigmatizing, but with our friends and family I want them to fully understand what we are going through. J is having a harder time than me processing the news, and I wanted my family and close friends to know this and understand why. So far, people have been very positive and supportive. In fact, more than one person has said something to the effect "That's it? Whew!" Since a few months ago we were confronted with the possibility that she had health conditions much more debilitating. To me, dwarfism is not a bad word and it is a word that will be associated with her, whether we want it to be or not, so I prefer to use it in a positive way.

      I'm curious, if you haven't used the word "dwarfism" with your family and friends, has anyone mentioned it themselves?

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  2. It is hard for me to use the word dwarfism as well. I do use it, but not often. It will take awhile to process. We didn't find out about our sweet Madison (now 2 with achon) until she was 12 months old. They did orginally think she had hypo as well before the test came back. We are just so grateful that God chose US to be her parents. She is such a ray of sunshine in everyones life and makes our lives so much brighter. She has opened me eyes to this big world. She doesn't let anything stop her. These kids are amazing and I hope the world will see that as well.

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  3. Also, you can check out my blog thecondonstory.blogspot.com and see Madison's journey.

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  4. Thanks, Sarah. I've added it to my list. Madison is absolutely gorgeous, and I LOVE all her outfits. You have great taste. I look forward to following your family's adventures.

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