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, June 23, 2009

One Day at a Time

I've tried several times to write over the past week, but every time I tried my thoughts and words would get jumbled up and I just couldn't do it. And though it's still hard for me to find the words to suit my feelings I figured I'd give it another try.

It's been over a week now since Hailey's birthday, and a week since we commemorated her new life in heaven. I can't say that I know exactly where the time has gone since then, and to be honest I think I've spent a great deal of it exhausted and in a fog. During this time I've also struggled with what it is exactly that I'm supposed to be doing, because what I'm supposed to be doing right now I can't, and that really hurts. There are times when I'm doing the littlest things around the house that I'll stop and cry because it just doesn't feel right. And then I begin to think about all the other things I should be doing at that moment. I see myself feeding Hailey or changing her diaper, or simply holding her in my arms. I see myself doing all those things that a mother should be doing after just giving birth. I guess I just get lost sometimes, and I suppose that's a normal part of the grieving process as you adapt to change and adjust to a new way of living without holding the one thing you want most in this world.

I didn't know quite what to expect in this chapter of healing, and honestly I tried not to give it too much thought. But I've found it has definitely brought with it a few surprises courtesy of God's love and comfort. One of my fears has always been the emptiness that I was sure to feel the second I stepped foot outside that hospital without my baby. The emptiness of my arms that would resonate to my heart. But to my surprise that feeling didn't exist for me then and it still doesn't. My heart was so full of the life and love I had just shared with my little girl that made it impossible for me to fill empty. She is too much a part of me and who I am to feel like there's nothing there, like she's not there. And while my arms didn't hold Hailey anymore, they still held the other gifts in my life, my son and my husband. Blessings that I will never again take for granted. Please don't be mistaken, leaving that hospital was the second to the hardest thing I've ever had to do in my life, but I knew I still had Hailey with me. I had her with me in a new way now. A way that we're not use to having people in our lives because we're human and we need and want things that we can see and touch. I don't think we always realize how much we live our lives with our minds instead of our hearts. Now we are having to adjust to Hailey living in our hearts instead of by our mind's sight. It will take some time, but I believe once we do that, we'll find her presence is just as real, and even greater, than it was when I held her for those 42 minutes.

Something else that has surprised me is feeling like a family of four. Of course I knew that I would now have two amazing children, and I would tell people that if they asked, but everywhere we go I always see us as a family of four. It's difficult for me to explain what I mean by that but when Tim, Ryan and I are all together, Hailey is always there too. Even when I look at Tim and Ryan, I instantly feel Hailey, and that feeling is just as real to me as anything my eyes can see. We've embedded her so deeply in our hearts that she will always be with us wherever we go, and she is and always will be part of our family. In a way I think that right there might be some proof that we are learning how to live on with Hailey.

To describe loosing a child...Looking at your child's face for what you know will be the last time...I'm not even going to try because there's no words to describe it. You know it only if you've experienced it, but what I can tell you is that sting of pain you felt as you read those words is only the tip of the iceberg. So what do you say, what do you do after holding your child's life in your hands? It's different for everyone, but as I laid down on the night of June 12, I found I didn't know quite what to say to God. But on that night, and every night since, I have prayed the same simple prayer that holds every thought and every feeling; "Thank you, Jesus. Thank you." In that prayer I thank Him for Hailey, and for choosing me to be her mommy. I thank Him for the time I had with her, and that He is taking care of her now. I also thank Him for my family, and for all the blessings He continues to send my way. I also thank Him for dying on that cross for me, and preparing a place for my family to be together again without ever having to say 'good-bye'. And then I cry. I cry because I miss my little girl, and I cry because I can't believe how blessed I am. My tears are of joy and sorrow, never one without the other.

I've found the best guideline on this part of our journey is to walk with God and simply take it one day at a time.
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