Williams Syndrome Wednesday: I’m not special and my brain hurts

I’m tired of reading things like “God only gives special children to special parents” and “she couldn’t have come to better parents”  or best “special needs parents are the bravest/strongest/whateverest”. Pffht. My child is special. ALL children are special, but one of mine needs a little more than most. This has very little to do with the kind of person I am or am not.

That being said, I am the kind of person who needs to know things. I’m a why? what next? and when? person. So it comes as no surprise that I struggle a little with the “Why? Because.” aspect of having a child with Williams Syndrome. I have read that WS children are born to parents of all ages, all races, with all types of conception stories. It’s a rare syndrome, but not one that discriminates. It picks the not-so-special parents too.

So in attempt to answer the Why’s I’ve enrolled in an online course called Useful Genetics. In doing so I have learned a few things about myself:

1. I am willing to do just about anything for my little girl.

2.: There are reasons that they tell you to take biology in high school and this is one of them.

3: We are complex beings.

4. Genetics makes my brain hurt.

I wish finding answers to complex questions was easier than Useful Genetics. I wish I was one of the ones who could accept the “special people = special kids” theory, feel all puffed up about myself and move on. And, I still kind of wish I was one of the ones who never has to think about this stuff at all. Or transcription, translation, codons… you probably took biology and already know what those are. Sigh.

I’m not sure I’ll ever know why our perfect Obi came to be the way she is.  But I do look forward to closing the book on feeling like why matters.

Oh yeah, I’m only in the first week.

2 Comments

  1. Marlene

    November 7, 2013 at 6:26 am

    I didn’t take biology either. The whole making a person thing seems so complicated that it’s a wonder any of us are born at all. I remember asking “if Down Syndrome is 3 copies of the 21st chromosome instead of 2, why can’t the body just pick the best 2 out of 3?” Nobody could really answer it. The best I’ve come up with is an analogy. Like making pancakes, you can have the typical recipe that gives you big fluffy pancakes, or you can add more water and milk and get yummy crepes. They are a little different, but both are delicious.

    Reply
  2. lianacote

    November 7, 2013 at 7:55 am

    I just laughed to myself because I can hear Dad in the Biology comment.

    Reply

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