Wednesday, April 18, 2012

lay it down

I said I was going to lay it down.
I was going to fight for her but try much harder to just be happy.  To find the joy in life again and not focus so much attention on this giant question that lingers in our life.
What is wrong with our daughter?  What is causing her symptoms?

I said I was going to lay it down. 
And I did...
 I realized today as I took the kids for our walk and the sun was shining that I was happy. 
I wasn't irritated or frustrated or even remotely conflicted with my thoughts.
I was simply happy.
I was in the moment with them and I laughed. 
Mabel cried all morning and I felt frustrated with her, but in a normal way.  In a way that mom's typically feel when their kids are crying and they can't console them.  It felt normal. 

 As Mabel sat outside in the stroller and I looked out at her, I could clearly tell that she couldn't see.  Some days her vision is virtually gone and today was one of those days.  Her eyes were clouded and she didn't even realize that she was outside or that no one was around her.  I stood at the window and she didn't even bother to look around-her gaze was upward only.
And although I mentioned it, I walked outside afterward and didn't carry that sadness with me.
I laid it down.
 This evening we went to the park.  As the bigger kids were playing I noticed my mother in law walking down the sidewalk with my girl.  She looked limp and weak, as always.  Her hands were gnarled up and her fingers were crossed.  She was visibly irritable with herself; as she gets often these days.  And in that moment, I chose to look at her and smile. 
A few minutes later, I took her into my arms and carried on a conversation with Rache and some other girls.  I didn't once let my thoughts go fleeting in another direction.
I didn't feel sorry for her or for myself. 
And it felt good...
 Days are passing and she is doing less.  She used to sit well but now she throws her body back almost immediately because she doesn't want to sit up.  We aren't sure if her hip is hurting or if she just doesn't have the energy or initiative to want to do it.  Either way, it is a regression because she was sitting for longer periods.  I could focus on it. 
And some days I might.
But today--I didn't. 
Today I said to someone, "She's almost two.  Weird right?"
But it didn't feel sad.  It felt honest and true and not sad.
She is almost two.  And it is weird.  But only because she's my baby and I think it would be weird no matter what these last two years looked like.  It's just so hard to believe. 
 Today I just feel really proud of myself and thankful for days like today.
Days where I can follow through with my goal to lay it all down and enjoy the small things about our life. 
Sure, she may be sitting next to me in her bouncer right now screaming like she has been for the past 45 minutes because that's all she does most of the day anymore, but that's ok.
Today it's ok. 
Tomorrow I may joke that I won't make it through the day and I may fall on my face in the middle of the toy room and cry like a weak, sad child. 
Tomorrow I may weep for the baby that I thought would be turning two in a sundress and singing.
Tomorrow I might get angry and take that anger out on the people I love the most.
Tomorrow I may pass a typically developing child who has no medical needs and it may make me really jealous.

But today....
Not today.
Today was the day that I did what I said I was going to do.
And I laid it down.

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