The Anniversary

It's been 4 years now that we got Leah's diagnosis.  That means that it's been 4 years since my life felt normal.  I've been trying to think about what was going on during those last few days before our lives changed.  I was starting to put thing on a baby registry, researching brands of car seats, and bookmarking some of my favorite bedding items.  None of it had anything to do with Spina Bifida.  The night before, I was excited to see her on the ultrasound in the morning.  Since I was close to 20 weeks, it had been a while since I'd seen the baby.  I think the last ultrasound was at 9 weeks so I was looking forward to seeing how much more baby had grown.  Nothing, though, could have prepared us for what was to come.  

It was a rough few days following the diagnosis, by far the hardest of our lives.  For 5 days, we met with doctors, researched Spina Bifida, and figured out how our life would be different.  The most overwhelming part of the whole process was finding out about everything that could possibly  go wrong, be different, happen to her during her whole life.  All worst case scenarios.   It wasn't until we started talking to other families that we got a much clearer picture of what is more likely going to be our reality.  I suppose doctors and specialists have to tell us every single thing that we could encounter, but they make it seem so bleak.  In reality, our life is nothing but bleak.  It's joyful, happy, satisfying, and enjoyable.

Four years later, we are definitely in a better place that we were.  I wish I could have had a peek into this 4 years ago to make me realize that we would be okay.  I follow several blogs with other kids with a variety of special needs. One mom wrote this the other day, and I found it to be incredibly powerful and really resonated with me:

The thing about time is that sometimes the joy and bliss of the present can actually reach back in time and almost change the events of the past. Now when I recall that terrible day I think, “It was just her. Our sweet, spunky, amazing little girl. It was her all along.” And now I wouldn’t change a thing.

Wow!  Yes, yes all of that.  Thank you for putting into words exactly how I feel about that day, that feels so long ago but also like it was yesterday.

I know that she’s going to be fine.  This is her life, it will always be her life and she won’t know any different.  I am the one who has to come to terms with her life being different than how I imagined it.  That being said, if Spina Bifida comes with her, then I’ll take it because I want all of her.  It's taken me a long time to believe that.  There are still days when I wish SB away, but I banish those thoughts quickly because it would change Leah.  And I love her just the way she is.