Knowing

Sometimes I catch myself thinking...
Right now we should have a 3 year old and a 15 month old.  And things would be wonderful.  And we'd be expecting or talking about trying for a 3rd.  And things would be perfect.

But the reality is, Annabelle had SMA.  She always had it, from the moment of her conception, and she would have it if she were alive today.  And although I'd give a lot to have her in my arms again, our reality would be far from the fantasies I allow to play out in my head - even for just a moment.

Our reality would be specialists, feeding tubes, heartache.

I see families out with their children with severe disabilities and I wonder how they do it day after day.  I know how desperately they love their children and how hard they are trying to make the most of each day - living a normal life as best they can.  And I also know how exhausting that is.  For only 2 months we carried on - trying to give Annabelle and our whole family sweet memories of a normal life together.  It takes everything.

I often want to run up to the mom or dad or sibling and tell them how incredibly brave they are.  But I never do.  Because what would I say?  I know nothing of the years they've endured.  Besides, trying to empathize usually comes across as contrite.  I hate to say it, but I know that first hand.  Maybe one day I'll have the courage to do it, but for now, at least I try to hide my tears.

There are many ugly childhood diseases out there.  Most we've probably never even heard of.  But you've heard of SMA now.  I'm not sure what awareness will do, but here we are - knowing.