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The eye of the hurricane

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Wide White: The eye of the hurricane

Tuesday, March 01, 2011

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.

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Anonymous Anonymous declared,

I loved this. This is why we are wearing purple (will send pics tomorrow!) because we have hope for Miss Kaylee remember to pray!

A. Katie

3/01/2011 7:57 AM  
Anonymous Mitch declared,

I am wearing purple today to remind myself to pray for her little life today. I am glad you are remembering the hope. Love you guys.

3/01/2011 7:59 AM  
Blogger Keithslady declared,

I realized last weekend that I'm expecting her to make it. I'm prepared for something different, but not expecting it. I realized it as I stood in line to purchase 5 new purple shirts/jackets at Goodwill. I already have a quite a few purple items in my closet (more than I realized) but I expected to need more if I would be wearing purple every day while we wait for her.

I know that your story is your own, and as much as others can be an encouragement it's not quite "your" story. That said, when you have a free minute you might be interested in reading resolvedtoworship's birth story of her now 3-year-old. Prenatal diagnosis of a massive abdominal tumor leading to level 2 ultrasounds and high risk docs. For weeks the tumor grew, pressing on vital organs--the experienced doctor had never seen one do otherwise. Then, it shrunk, and eventually vanished. One in a million. An ultrasound really is seeing through a glass darkly.

I'm with you, keeping the faith--the substance of things hoped for! Beat on, Kaylee Hope!

3/01/2011 8:15 AM  
Blogger MNScooter declared,

The beat goes on. We're rejoicing over that news.

Go Kaylee Hope!

Love, Scott & Geri

3/01/2011 10:56 AM  
Anonymous Anonymous declared,

I don't really "know" you, but you, Jamie, Carson,Keira and Kaylee Hope have touched me. You will be in my thoughts and prayers. Enjoy her.
Love, Susan Adkins (Chip's wife)

3/01/2011 12:10 PM  
Blogger Kara Jo declared,

Celebrating Kaylee Hope with you today!!! Rejoicing and smiling as I picture her moving around and the two of you taking the time to stop and smell the roses--in church or wherever it may be. (And I think it would be very sweet if I saw a loving daddy place his hand on his pregnant wife's belly in church, btw!)

Has Miss Kaylee Hope been down a slide yet? Swung on a swing at the park? It's almost warm enough!

3/01/2011 4:50 PM  
Anonymous Anonymous declared,

After reading the awesome messages left by other people, I've had the same mentality as "Keithslady". Right now all I can think about is the miracle stories of survival that I've read about and been told of. I read/hear those and I think, "That's going to be Kaylee." Don't get me wrong, I'm acknowledging the fact that maybe the odds aren't the best, but until it's announced that Miss Beautiful did not defy those odds...I'm going to keep on hoping and praying that she will. Love you all!!


3/01/2011 5:51 PM  
Blogger Janet L declared,

Focusing on "life" and praising the LORD for it. My sister was thought to be a "tumor" in the days before amnio and ultrasound....not so!!

Thank you for sharing...

3/01/2011 6:49 PM  

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