Baby Girl

I won't lie:
I miss my daughter.
I miss my child.
I miss my Tikva.
It hurts, especially at the end of the day when the house empties of the bustle of our sweet and loving community and the vulnerability of night returns.
I look at the photo of Tikva as she is breathing her last breaths, and the one of her after she has gone to sleep for the last time, and I think...
A baby isn't supposed to die.
A baby shouldn't have had to work so hard to live.
Tikva looks old and tired and wise, as if she has lived a whole lifetime.
Already the photos begin to replace in my mind's eye the images of Tikva that I saw every day as I went to her at the hospital.
Will I remember what she looked like years from now?
Or will I remember her essence, the feel of her that is indescribable but inside me now?
Will it hurt less tomorrow than it does today, even though today it feels like it hurts more than it did yesterday?

Today I spent a few hours reorganizing Dahlia's room, clearing the clutter and putting away her toys in new containers.
It felt good, soothing, distracting.
Yet there were moments when I realized that Tikva would never have a chance to play with these toys as I'd imagined she would.
When I realized that Dahlia would never get the chance to play with her little sister Tikva.
I always knew I would have two daughters, but I never imagined them not growing up together.

Yesterday I held a friend's 10 week old baby boy.
I was struck by how robust he looked and felt in my arms.
All these weeks I spent with Tikva, I did not see her as my sick child.
In my eyes, she was only my child, my daughter, my sweet baby girl.
But yesterday as I held this little guy, it struck me just how sick Tikva was.
Just how hard it is to be robust when you can't breathe, when you are supported by machines for breath and nourishment, when you are on so many different drugs, when you can't really move very much, when you don't spend most of your time being held.
The other night I watched the videos of Tikva which Dave took over the past month, videos taken when she was doing well.
For the first time, I was able to see something I hadn't seen before: She was working SO HARD to breathe.
She did remarkably well, unexpectedly well for a baby with a CDH as severe as hers.
She got all the way to breathing with a nasal canula for a time, but those breaths took so much out of her.
She used up all her energy and then she got pooped.
And then her fragility became really clear.

I miss you Baby Girl.