I've thought a lot about what to write here on the eve of our third Christmas without Hannah. But I've decided, for a change, not to write about our family.
I want to share the remarkable story of Hallie Green, a precious little girl who was born six days ago in Atlanta, Georgia. About six months ago, Hallie's parents found out that she would be born with Trisomy 13, a genetic disorder which causes a multitude of birth defects. In fact, 80% of babies born with Trisomy 13 do not survive their first year of life.
Let me share some of what Hallie's dad wrote on their blog yesterday, on Hallie's fifth day of life:
"I can't write a word until I thank all of you who have sent gifts to our house, texted, wrote on the Hope For Hallie Facebook wall, brought meals, and most importantly... prayed for our family and Hallie.
I've got to be honest, when I first saw the signs and hashtags labeled "Hope for Hallie," I was a little nervous. I guess I wanted to make sure people knew what to hope for. The prayers for a miracle of full recovery in Hallie's health have been a braver prayer than I honestly was willing to pray. Probably out of the fear that God might not "fix" her. I also didn't want to assume that Hallie's health was the indicator of God's goodness to us. We've seen God's goodness in so many ways, and greatly through each of you. The bottom line is this: please don't hinge your willingness to believe in God on Hallie's survival.
The reality is, she won't.
I want to follow that horrible sentence with this. Hallie's survival was never our "Hope for Hallie." We knew the day we heard the words "Trisomy 13," Hallie's life would be short, and maybe just hours/days if she survived birth. Our "Hope for Hallie" is that people would see life as a gift, and draw near to God. Based on your comments here, and based on the Facebook wall, I would say: mission accomplished. More people know Hallie's name within the last five days than will know my name throughout my entire life. Please don't feel sorry for Hallie...or us.
We will continue to enjoy every moment we are given with Hallie. We're heartbroken. Extremely heartbroken. We cry...probably hourly. God's purpose for Hallie does not exempt us from the pain of losing her. Don't be misled into thinking we're all laughing and celebrating all of the time.
Hallie is perfectly-made for us. She has a cleft lip and palate, no eyes, and we're pretty sure she's deaf. But she's still perfect to us. Her soul shines through her.
Finally, I'll leave you with a shot taken last night shortly after we arrived home from the hospital. One of our "Hope for Hallie" participants (and later found out, a close family friend) went to Bass Pro Shop to do some family photos with Santa. She was holding a "Hope for Hallie" sign in the photo. Santa asked about it, and was moved by our story. He wanted to help bring some Christmas cheer to our family. And...at 9pm last night, after working a strenuous, all-day schedule, he drove the 30 miles south to our home to make us smile.
This single act of selflessness and love has got to be a top-three moment for me in my life. I would compare it to the "Move that Bus!" Extreme Home Makeover emotion. Incredible. He came with two elves (thanks Kristin and Lauren), and brought gifts for our girls and us, prayed for our family, and then lead us all in "Silent Night." I'll have a video of the girls' reaction up...well...soon. Santa, thank you for honoring our family in such a sacrificial way. (I see God's love all over this.)
Here is Santa loving on Hallie, our Christmas miracle...."
Isn't that just the most beautiful picture you've ever seen?
Hallie went to be with Jesus about 12:30 this morning, and is spending Christmas Eve with Him, which is soooo much better than spending it with Santa.
Please keep Chris and Katie Green, along with Bella and Farrah, Hallie's big sisters, in your prayers in the days ahead. You might even write a word of encouragement to them on the "Hope for Hallie" facebook page.