Wednesday, May 16, 2012

Microcephaly... the second chapter

Tonight I was looking at my blog stats and realized that this post is my most popular, meaning more people have read this post than any other post on this whole entire blog!  And why?

Because it's about Microcephaly.

When you realize your kid has for-reals brain damage, this word almost always pops up.  Because when your kid has brain damage caused at birth, the doctor will measure their head, and you will inevitably see that percentile drop.  Then you will come to the internet, and the mighty Google, and type in microcephaly looking for anything that might be reassuring, anything that might give you some hope that your kid's head isn't going to be small and funny looking.

And up pops my blog post.

I just reread this post.  It seems so ignorant and silly looking back on it.  But at the same time, I remember being in that place and having those worries and not knowing the outcome of my child's life, development, looks, anything!  And based on the popularity of this post, it seems that I'm not the only one in this place.

I also looked at the picture at the bottom of that post and was shocked that my big girl was once that small.

What's weird is that when I look at pictures of Baby Sadie, she looks way more special needs than I think she does now.  Granted, I didn't see it then, and maybe I don't see it now either...but maybe also I just don't care anymore.  Still, when we go out, people don't stop and talk to us about her disability, they comment on her hair.  They tell me she has gorgeous eyelashes.  They ooh and ahh over her cuteness (how can you help yourself??  She is SSSOOOOO cute, right?).

Nobody ever notices her small head.  Even I don't notice it...until I try to put a hat on her.

Babies in hats are cute.  But one size fits all/most doesn't apply to my child.  And that's okay most of the time because who wants to cover up all that gorgeous hair anyway, right?

Sadie has a small head.  Most kids with CP have small heads.  It's a big deal until you realize it isn't.  And I hope that my post about this is helping ease the fears of other parents out there who are just beginning this journey.  And I hope that they too will realize, in time, that it's really not that big of a deal.

What is it about your child that used to really bother you or worry you that you now don't even really think about?


  1. Firstly, I would like to thank you for your blog, I am an avid reader and you write beautifully. Secondly congratulations on your pregnancy and having a boy! I am English and came across your blog when I found out that my daughter had a stroke either during pregnancy or at birth -at the beginning I wanted information and to find out how to help her, also to read about other people's experiences so as to feel less alone. I had to comment on this post as my daughter has presumed secondary microcephaly due to the brain damage she suffered, and I like you at the beginning, even before diagnosis terrified myself by googling it. Eventually the consultant explained that as the right side of her brain had been damaged, it wouldn't grow which made so much sense. I too have come a long way since diagnosis, I used to measure her head all the time and obsess about her head growth but my perspective has changed over time and the worry fades away, but I agree it is hard to find hats to fit, at the moment am looking for a bike helmet but they don't come in her size.....
    Anyway, thank you again for helping me along this new journey and I wish you all the best for your pregnancy and beyond xx ps sadie is gorgeous!!!! Xx

    1. Thank you so much Jo for these kind words! I think many people have found my blog by googling microcephaly. My hope is that, like you, I've helped a lot of people grieve, move on, and feel less alone in this journey!! Best of luck to you in finding a bike helmet...I'm sure we'll be on the hunt someday too!!

  2. I had to comment on this post because that is exactly how I came across your blog about 6 or 7 months ago when I realized that my son's head had fallen off of the charts. Out of everything that we have been through the size of his head scared me the most. I even hate the word Microcephaly. I do agree that there comes a point where you start to process things and move on (or in our case stop obsessively measuring your child's head). Your blog has meant a lot to me and I read it often. I sort of use it as my guide. Your daughter is beautiful and you are an extraordinary mom! Congrats on your uncoming baby!!