Sunday, February 26, 2012

Welcome to our world...

I'm told that the best place to start something new is with an introduction.  So here goes...

I'm Caroline.  A couple of years back, I married Tom.  A year ago, we had a beautiful baby boy named Aidan.  We live in the Philadelphia 'burbs with two cats (Stormy and Davey) and a house full of baby toys.  Tom and I both work full time, and Aidan's more or less a typical rough-and-tumble daycare kid. He's funny, he's unspeakably independent, and he's pretty much the cutest kid ever.  No, really.  He is.

Recently, several friends of ours have worked up the courage to start asking questions.  They've known for some time that Aidan has "medical issues" - an intentionally vague phrase that we use to discourage further conversation.  The reasons for keeping his issues to ourselves differ by the day.  Sometimes, it seems too heartbreaking to talk about.  Other times, I can't imagine anyone else wants to hear about it.  Mostly, I don't want people to think that this is *all* he is. 

The truth is that I'm always happy to talk about this, even on days when it seems so oppressive that I can't look at him without crying (there are more of those days than I'd care to admit).  To talk openly about it is to educate others, which will only benefit Aidan (and others like him) throughout his life.  Plus, it's therapeutic.  Everyone loves a soap box.  This is mine...

Ultimately, this blog is my attempt to answer the questions that people have felt awkward asking.  What's wrong with him, anyway?  When will he get better?  How did you know something was wrong?  Has he made any progress?  What does all of this MEAN?

I'll confess now that this is a learning experience for me too.  I don't have all of the answers (and neither do his doctors).  But like every other mom out there, I spend a lot of time learning what I can about my child and how to make his life as awesome as humanly possible.  For us, that includes scouring the web for elusive bits of information about a disease that has too few specialists and nowhere near enough research.  I'm not a doctor, and I don't even play one on TV.  I'm just a mom who's struggled and is ready to talk about it.


  1. I'm so proud of you, Caroline. This is wonderful. And you are totally right. Aidan is so much more than this(ese) disease(s). He is a wonderful, happy, loving, sweet boy. I am here, now and always, to listen or read or eat. I love you all so very much!!

  2. Lots of love from me too. and *smooches* for Aidan.