The eye of the hurricane

Last night I told Jamie, "We need to talk to the social worker at the hospital. We've got to figure out what we're going to do with her." I was referring to decisions regarding what to do with little Kaylee Hope once she's gone.

Jamie responded, "Send her home in her cute little carseat? Okay!"

I love that attitude! Kaylee Hope is not gone yet and we need to remember that. Yesterday Jamie told me, "I recognize that it's our fault, but I wish people wouldn't think of her as dead already."

Jamie's right. It is our fault that people tend to think of her as being gone already. We're in a strange place right now. Kaylee Hope is moving around, very much alive and kicking! And yet we've been given a death sentence and we've communicated that death sentence to everyone else. Doctors aren't talking in terms of her chances at survival. They're talking in terms of how long we have until she passes.

Of course, we've communicated that because it's reality and we want to be honest. We don't expect our little girl to live. We hold onto a faint glimmer of hope that the next ultrasound will be clean, or at least better, and there will be a fighting chance that she'll somehow pull through. But we also want to be realistic and plan for what's expected.

We're also trying to enjoy her life while she's here. It's why she has a favorite color and is why she gets piggyback rides (via Jamie on my back). It's why I lean over and put my hand on her when Jamie whispers in the middle of church, "She's moving!" even though I'm fully aware of how absurd it probably looks to everyone else for me to so publicly be reaching my hand across my wife's stomach in church.

We love this little girl and we're savoring each moment we have with her. We feel as though we're in the eye of a hurricane. The first two days last Tuesday and Wednesday brought the heartbreaking, totally unexpected storm. Right now we're in the calm of the storm to a certain degree. At some point though we fully expect the tail end of the storm to whip itself into a frenzy. Once it's over, we know there will be hurt and pain and a scar that will never go away.

But for now, Kaylee Hope is with us. She's not gone yet. Death eventually comes to each of us. For some it's at 90, for others at 50, and for others it comes before they make it to birth. Yet we celebrate life while each heart is beating today. It's no different with our little girl.

Kaylee Hope's heart is beating. The one chamber left pumping is still going strong. Her little arms are stretching all over. She starts dancing when the car starts moving or when Pastor Steve starts talking in church. She reminds us of her presence every day and we do our best to remind her of our love for her.

So we hold onto these moments and we cherish this time. And please, think of our little girl as being very much alive until you see a post on here announcing her memorial service. We've certainly had our share of grief and mourning over the pending loss and will continue to carry that sorrow with us. But in the midst of the sadness, we're trying to have a better perspective of enjoying her while she's here and waiting to mourn until she's gone.