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.

Saturday, March 7, 2009

Those Tough Moments

This experience with Hailey is definitely amazing and life-changing, but it's also definitely not easy. Our family has acquired the strength we need to trust in the hope for tomorrow, and to subdue the hurt and pain that we will have to face one day. However, we are human and every once in awhile that pain surfaces when I start to think about one of two things: losing Hailey, and losing that part of my life that had her in it everyday.

I think about Hailey's room that I won't get to paint and decorate in baby pink and chocolate brown. I think about the new rocking chair we got for Christmas that will never serve its intended purpose. I think about our family dinners that will remain one short of filling the table. I think about all the Kodak moments that will never be captured. I think about the braids and pony tails I'll never get to help her with. I think about the red wagon we got for Ryan to pull his little sister around at the zoo. I think about family vacations, her first day of kindergarten, her high school and college graduation, her wedding, her children...everything parents treasure with their children that we will never experience with Hailey.

Then there are other times when I think about the things no parent should ever have to contemplate, especially when you're pregnant and full of a life you want and love so much. I think about the right words I'm going to have to say to an excited little boy one day. I think about the moment Hailey's heart stops beating. I think about the first and last words I'll ever get to say to our daughter. I think about how I'm ever going to hand my little girl over to a stranger. And most of all I think about the horrendous void my arms and my heart are going to feel when I leave that hospital. A feeling that I'm sure will remain for the rest of my life.

These are those tough moments I was referring to. This is when I cry, I grieve, and I turn to God the most. I referred to these as tough 'moments', because God doesn't allow them to last hours or days, just brief moments of time to grieve over what is to come and what will never be. I like to think that these episodes of sorrow are chiseling away from the iceberg of pain that awaits.

Thankfully my strength always returns, and I remind myself that this is all part of God's plan, not my own, and that His plan is the only one I want to live by. He also has a plan for Hailey, and even though it's not the same plan I have for her, it's the plan that I trust. I also realize that the hopes and dreams I had for Hailey haven't gone away, they've only changed. They have changed to mimic the understanding of God's plan for her, and it's amazing how already she has fulfilled those hopes and dreams. Our daughter has taught us lessons in appreciating life, unconditional love, unwavering faith and endless hope. These pivotal lessons I believe are in God's plan for each one of us. These lessons can't be learned from a textbook or a philosopher. That epiphany comes from knowing God, and for us it was also knowing what a true gift and blessing Hailey is and always will be. My hope and dream now is for Hailey to grow stronger so she can meet her parents and feel our warmth and love before she goes home. I want to tell her how beautiful she is, how a parent couldn't be more proud of their child, and how much we love her and will always love her. This is the first and last moment that I hope to have with my daughter, and one that I will forever treasure experiencing with Hailey on this earth.

I felt like sharing this gloomy side of reality because one, this week for some reason I've had many of these tough moments, and two, it's a very real part of this journey. Hailey reminds me more and more every day that we're not there yet. That right here, right now she continues to grow stronger, and provides me with the hope I need for that day I get to meet my little girl face-to-face.

With Hope and Love,

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