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.

Tuesday, February 24, 2009

Celebrate today! Tomorrow will worry about itself.


Celebrate today!
I wanted to start by sharing this important fact...Hailey is alive! She kicks, she stretches, she gives me a nudge to let me know she is strong, and that she is very much alive! At the end of the day, I thank God for the gift of life that is still inside me. I thank Him for the precious time He has granted me to spend loving my family. He is truly amazing!

I will admit that sometimes after I have counted my blessings, I cry. It's hard not to, because I begin to think about what tomorrow might bring. Will it be Hailey's last? I know it's coming. Then my mind wonders to Ryan and Tim. The truth is, none of us know. We don't know when, where, or how. When my dad died in his sleep 3 months ago, I was reminded about something our preacher once said, "Imagine if you knew when you were going to die." That's an interesting thought to ponder. There's an old saying that's been rubbed raw, but I would imagine it applies: "Live today like it's your last."

I've heard it countless times, but it never resonated with me until a week ago when I began living hour by hour with Hailey - knowing the time was near, but not knowing exactly when. It's devastating, knowing your unborn child will die, and knowing there's nothing you can do about it. But that's the truth of life. So am I to live each hour grieving for the loss that has yet to be, or do I live each hour celebrating Hailey's life? I have decided that with the strength and courage God has given me, I am going to touch every kick, smile at every stretch, and count every nudge my daughter blesses me with. And I will be reminded of how precious life is, how precious Hailey is, and how God blesses us in ways we could never imagine! A blessing in disguise, so to speak.

Tomorrow will worry about itself. I am fully aware that one day, whether it's tomorrow, next week, or 3 months from now, my daughter's heart will stop beating. It is on that day, that we will grieve and morn our loss...but today her heart is beating! So why worry about what tomorrow may or may not bring, when we could and should be celebrating the life and joy God has given us today!

I know everyone feels this is a devastating and sad thing to happen to us given the road of heartache we've been on - and for the first 3 days I felt the same way. Yes, I expected a healthy baby. Yes, I expected to start the New Year without pain and sadness. Yes, I expected a lot of things, but life is full of the unexpected. Hailey's health was unexpected, but I guarantee that the unexpected has blessed us more than anything we ever expected.

But now I am tired of saying 'good-bye' before I've had a chance to say 'hello'. Today Hailey lives, and her life has proven to hold such meaning and purpose in these 20 weeks and counting. She has changed our hearts, our minds, and our lives in ways that I never knew was possible. She has made us feel and experience emotions that we never fully understood. She has been on the hearts and minds of so many this last week, and I just don't know how many babies can accomplish what others (including me) strive for in a lifetime. Why wouldn't I want to rejoice in the life of such a special little girl?

We are so proud to be Ryan and Hailey's parents. We couldn't be any more proud, or love our children any more than we already do. But Hailey has made it possible for us to appreciate and celebrate our children more, when she reminded us that we just don't know when, where, or how.

So Celebrate today and be happy! Tomorrow will worry about itself - and when tomorrow comes...CELEBRATE TODAY!
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