Forty-two minutes...a lifetime of love...

God's Gift...Our Angel Baby

Twenty weeks into life, Hailey was diagnosed with alobar holoprosencephaly (HPE). Further testing showed that she had full Trisomy 13, also called Patau syndrome. Trisomy 13 affects about 1 in 16,000 babies. HPE affects about 1 in 10,000 babies and of those only 3% survive to delivery. With the severity of Hailey's condition, she is given little chance of surviving to term. But our family was dedicated to giving her that chance, no matter how small, and she gave us every hope for the future.

On June 12, 2009, our angel baby was born and delivered into our loving arms. There is where she spent her life and gave us the best 42 minutes of ours. Our journey led us to this moment in time, the moment we met our little girl face to face, and the precious time we shared with her. Now Hailey is safe in the hands of God until we meet again.

God has blessed our family in ways we didn't understand at first. But through our faith and trust in Him, we came to realize just how much purpose Hailey's life serves on this earth. Hailey has unlocked the deeper meaning of faith, hope and love, and has forever changed the lives of many. We are blessed to be part of such an incredible life and incredible journey.

Psalm 139:13-16

For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

Thursday, February 26, 2009

Planning Day...

I almost forgot to mention how smooth yesterday went. It was a gorgeous day outside (unlike the rainy day we had today) and just as I expected, God gave me that calm sense of peace to get me through the day. Quite honestly I felt like He did all the work. I stopped by our church, we are blessed members of Capital City Christian Church, and had a nice discussion with Troy about the memorial service that is sure to be reflective of Hailey's life. I stopped by Rivercity florist and picked out flowers almost as beautiful as Hailey is. What I thought were going to be difficult questions for me to ask at the funeral home, contained very simple answers with no strings attached. At the end of the day, I knew that I would have nothing to worry about later, because the day we celebrate Hailey's homecoming in heaven is going to be beautiful and special in every way.

One of the highlights of the day was getting to share my story with Angie at the Jefferson City News Tribune. When I found out that March 13 is National Trisomy 13 Awareness Day, I felt this sudden urge to do something. So I contacted the News Tribune, not really knowing what to expect since I'd never done anything like that before, and was humbled to find Angie very interested in learning more about Hailey. Yesterday, I was able to sit down with her and talk about Trisomy 13 and Hailey's condition. I was also delighted to talk about what a miracle Hailey is, and the amazing journey God is leading us on. I left there feeling lighter than I have in a while, knowing that Hailey's beautiful story was in good hands and that we were possibly going to reach other families sharing a similar story just made me smile - and I'm still smiling about it! The article is expected to run in next Sunday's paper (March 8), and will be posted on here as well. * As a side note to show that God can do all things great and small - When I got to the News Tribune I found front row parking, and when I got out, I found that the parking meter had an hour and sixteen minutes left! Really, how often does that happen? I'm telling you, I didn't do anything yesterday except show up, and God took care of the rest.

Pictures! Today we took pictures of our family at Amy Knollmeyer's studio, and it was incredible. It meant so much for us to capture these happy moments as a family. We just had a great time being together and laughing, and displaying the love we have for Ryan and Hailey. I'm more convinced now than ever that Ryan should definitely consider a career in modeling. He had no problem whatsoever doing his thing (whether it was Amy's thing or his own), and of course radiating his natural handsomeness for the camera. If only I had that kind of self-confidence! It was really great, and I can't wait to share the photos with you when we get them. I know this site is lacking pictures, but I was planning to wait until we got with Amy since I need a lot of help to be photogenic.

God Bless!
But Jesus said, "Let the little ones come to me, and do not keep them away; for such is the kingdom of heaven." - Matthew 19:14