Thursday, July 26, 2012

Our Most Beloved Star

This time last year, my water had already broken, and I was putting off going to the hospital in an attempt to prolong the need for medical intervention in an all-natural VBAC. Of course, things certainly didn't go the way I had intended, but what birth ever does? I read somewhere that only about 4% of babies are born on their due date. Norah was part of that small percent. Though it was about 31 hours between my water breaking and her arrival, Norah was right on time. These first two photos in this post were taken during Norah's first few days after birth at the U of U Hospital. I still can't bear to share her very first photos on here. They never fail to make me cry when I look at them.

On the topic of statistics, I've also heard that only about 1% of children become ICU patients. I wonder what sort of subset Norah belongs to - of pediatric patients that need prolonged support. My guess would be less than 1% of that 1%. Most families are fortunate to be in and out in a few days or weeks time. Some of my readers know what it's like to live in this alternate world. Our babies don't get to come home for things like holidays, birthdays, or other celebrations. It hurts.

But with all of the ugliness, comes so much beauty. Norah's path has been hard, long, and exhausting. But on it, we've found love in such amazing places. I can't begin to count the people I've met along the way: healthcare professionals, parents, and other children who are going through their own difficulties. These people are amazing. I've met professionals with incredible experiences that led them to their career choice. I've met kiddos that have had heart or other organ transplants. I've met kids waiting for transplants. I've met other long-termers like Norah, who are being sustained on life-support while waiting for time to simply help them grow, heal, or blossom. I've met families who have lost their children. And most recently, I met one of the sweetest girls ever: a 14-month old with such beautiful, expressive eyes. She died just a few days after we left the PICU this last time, and it has deeply affected me. I can't stop thinking about her and her lovely mama.

We have been through so much during this last year. I never could have dreamed any of this up, and nothing ever would have prepared us for it. We hurt and we cry. We laugh and we smile. We do everything we can to give Harper and Norah full lives despite our circumstances. We can't bear the thought of what we would do without the care we've received. Norah will be one year old tomorrow. I can't fully express what this means to us. I can't even fully express what it means to everyone that lives in Norah's world. And in all my full geekery, I close with a quote from Lord of the Rings, one that represents Norah in such a lovely way:

"I give you the light of EƤrendil, our most beloved star. May it be a light for you in dark places, when all other lights go out."

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