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.

Wednesday, May 13, 2009

Storytime

Never has reading a book been so hard.

Monday night I finished Ryan's book, and as we sat down on the couch to read it I started to cry. Ryan didn't notice since he was sitting in front of me and I was somehow able to keep the tears silent. So for the first few minutes Ryan just turned the pages of his book. I told Tim he would have to read it, but he chickened out too. Just as I was about to put it away for the night, the fears in my mind eased and I began to read the foreign words I had written.

I was doing pretty good until I glanced at what I would have to read next, and a flood of tears washed down my cheeks. I told Ryan that Hailey was going to live in heaven with Jesus. The following page had pictures of my dad with Ryan and he said, "Papa lives with Jesus." I told him that's right and Hailey was going to live with Jesus too. Then I went on to explain what that meant; that Hailey wouldn't be coming home with us when we leave the hospital. Immediately the 'why's' started. He wanted to know why she couldn't come home with us, then why she was going to live in heaven, then why God had made her that way. I could see right away how hard this was for him to understand. Somehow we made it out of the 'why's' and finished the book, but after the "we won't be bringing her home part" he didn't pay much attention to the rest.

It's definitely going to take some time for him to understand. I plan on reading the book and talking about what's going to happen with Hailey consistently over the next week, and to do that I obviously need more strength. Even in the conversations we have, I need to start preparing him for what to expect. To help him understand that there are things he won't be able to do anymore. Over the weekend, for example, he was telling me that he was going to share his toys with Hailey and he wanted to give her a basketball. He is so excited about having that time with Hailey, but it's time to help him focus on that one special day he'll have with her. We'll talk about her birthday party and how we'll need him to help blow out the candles for her. He'll also need to give her her birthday presents and help her unwrap them. One thing he's very much excited about is giving her the 'boo' he picked out just for her.

Last night we sat down and talked about it again, and I managed to come out dry eyed. It was interesting though, because this time he got hung up on seeing mommy and daddy cry. He said, "You don't be sad. Is daddy going to cry?" He had the most concerned look on his face, and we had a rather lengthy conversation on why we would be sad. I tell you what, some of the deepest conversations I've ever had have been with a two-year-old. They can ask the most simple questions that spark the most complex thoughts. I'm glad I knew the two things that would be the most difficult for him to understand, and what he needed to be the most prepared for, but that's all part of being a mom.

On a lighter note: After learning that Jesus made babies, Ryan asked, "Did Jesus make ketchup and mustard?"
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