Friday, November 25, 2011

The response I dread...


(Note to MT, this is not directed at your mom)

I have been thinking about how people respond to the news that Sam has achondroplasia. I have tried very, very hard to present the information in a way that people know we are "okay" with it. That we don't see it as some awful thing.

But we still get the "I'm so sorry" or the "that's terrible!" or the pity in someone's eyes. I try to understand where people are coming from. I do. But I still see it as an inappropriate reaction.

I know that mothers of children with Down Syndrome, for example, can completely understand where I am coming from. Many a mother of a child with Down Syndrome has had someone say something to the effect of "She's so cute, too bad she has Down Syndrome". What a stupid thing to say!

My son isn't sick. He isn't going to die. He doesn't need pity. If you want to pray for him, that's fine, but pray for him like you would pray for Jack's ear infection issues. He's a perfectly healthy, happy, adorable 3 month old. He loves to watch his fan in his room and laugh at it. He loves his big brother. He is very particular about his pacifier and bottle. He loves to be swaddled and to be sung to no matter how awful my singing is. He is the hit of the daycare as everyone loves to hold him. He may have short arms and legs, but he is perfect the way he is. He doesn't need prays, pity or sadness. There's nothing terrible about him.

Dwarfism has long been seen as something for a freakshow or a curiosity. I hope that by the time Sam is an adult, people will see dwarfism as another expression of humanity instead of someone to photograph without permission, to laugh at, point at, or use as a prop in comedy.

2 comments:

  1. Hi, my son is a year old and was born with Spina Bifida, and Hydrocephalus, so I can relate to a lot of what your son is going through, although Spina Bifida is still much different it is nice to get to know other families that have a "miracle child" :). I saw where you had posted on "The Tall Chick". Mary, (The Tall Chick blogger) is my cousin, and I am just trying to learn more about this syndrome, so I can be more supportive to her. I hope you don't mind if I follow your blog.

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  2. Feel free to follow! And if you have any questions, just let me know.

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