This is Lilah and her cousin Maggie, born just days apart.  I love this picture, because Lilah looks so normal...so interested, so engaged...because laying in bed is just about the only activity where she can hang.  It's still really hard for me to be around little girls Lilah's age--and it's probably going to get worse before it gets better.  Until recently, I've gotten away with thinking, in my head, that she is still a baby--even though she's over 2--because she still seems like a baby.  And, when it's just us at home, it's easy to not think about.  Not that I'm trying to be all "stick your head in the sand and ignore the obvious", because I'm nothing if not a realist.   But day in and day out, I'm meeting her needs, where she's at and not thinking about where she's not.  However, it's darn near impossible not to compare when I see her with her peers.

And sometimes, the emotions sneak up on me.

I have a dear friend who is  a trained counselor, (coincidence? I think not.) who told me early on in this journey that I just had to deal with the grief as it came.  That there was no preparedness or prevention to do.  No 'banking' of the bounty of joy we've experienced to throw at the waves of sadness.  "It is what it is".  This has been our mantra from the beginning, Paul and I.  I know, I know....you are standing in awe of our depth of wisdom and enlightenment, right? :)  But it's true.  And it is.  This whole thing is a million descriptions and experiences rolled into one--and it covers the expanse of emotions...from the happiest happy to the saddest sad.  And there is just not much I can do about where my heart lies on the spectrum sometimes.  And what it is right now is sad.

And the sneaking up of sadness happens something like this: 

 We go to  a birthday party where every other child is running around independently while the grown-ups are talking--as it's supposed to be.  But,  I'm sweating from holding a 30 lb child on my hip and can't hold a conversation because I'm thinking about how in the world we are going to get her and her stroller back up the steep hill at the pony farm and back to the car, and, since we can barely manage this year, how it will be next year.  

Or how, the next day at church, I fight a quivering lip as I listen to a child behind me tell her momma all that she did at children's church.  And I hear that momma "shush" her several times, as I'm thinking I would do anything in the world to just hear Lilah's voice.

And then,  I know that the 'sneaking' is over and the onslaught of grief has begun.  Because, in the grocery parking lot, I see a little girl dancing in purple ballet leotard and I absolutely lose it.  As in, must pull off the road to keep from crashing, crying so hard.  Like, wasting hours of babysitting time, driving around bawling because I just can't pull it together.  And, I'm thinking, It's not that I have always dreamed of her doing ballet, why the heck am I a basket-case?  But, I know the answer. Or the answers, I should say--because there are a million things that have me so upset.  There are so many things about Lilah's life for me to grieve that my head spins.  

My girl can't stand or crawl.  She can't talk or eat.  She will never have a best friend or a first crush.  All her thoughts are a secret to me.  I want so badly to know who she is and what she wants.  (Or maybe I know the very little that goes on in her mind already, and it's nothing more than simple likes and dislikes.  And that is even more terrifying.)  I want her to disobey me or sass me back or argue about what clothes I've chosen.  I want her to scrape her knees on the playground or discover that she really loves to read.  I want her to go on field trips, and sleep overs, and spring breaks.  

I'm still trying to find my way in all this, obviously.  I wish I could say that it gets easier, but I'm starting to suspect it doesn't---only that the sadness ebbs and flows.  But, I do know that God's desire is to love and guide us through it, asking only that we rely on Him and trust His promises.  I also know that without Him, I wouldn't make it through one day with the burden of the reality of her life.   But, hope is a powerful thing....and as hard as things get, it wins out over sadness and grief everyday of the week (and twice on Sundays:).