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, April 28, 2009

Hailey's Hope

I can't thank everyone enough for coming out to the walk on Sunday. It was a beautiful day and one that our family will never forget! I don't know if there are words to express how much that day really meant to us. It was a day we got to all be together to honor Hailey and the lives of every baby. It was far greater than what I had even hoped it would be.

If there was anyone there that didn't know what Hailey's Hope was all about, they do now. It was amazing to see everyone wearing their Hailey's Hope shirts. The signatures and messages written on the Hailey's Hope board were beautiful, and we will be reading them for years to come. Another amazing sight was all the steps dedicated to Hailey lined up along the walk. I walked the trail before the walk started and I just couldn't believe how far her steps traveled (which is why I could only get halfway through when the walk actually started...sorry). It was an incredible feeling to see all the people who are thinking about Hailey and showing their support. Speaking of support, our team raised over $5,000 for the March of Dimes! The March of Dimes is on a mission to helping every baby get a healthy start, and that can't happen without all of us. So thank you for your time, money and support in saving babies.

After the walk, our family talked a little about Hailey, and we announced the Hailey's Hope project. I have included my 'speech' below. I'm not a public speaker whatsoever, so of course I had to write out what I wanted to say beforehand. And that was a good thing, because the day was far more emotional for me than what I expected.

I would like to thank each of you for coming out here today. Tim and I are personally humbled to have those of you join our family in walking for "Hailey's Hope" in honor of our daughter Hailey Marie Glavin.

On February 17, during the ever anticipated 20 week ultrasound, Tim and I found out that our second child was the little girl we'd been hoping for. However, we also found that Hailey had Trisomy 13, also known as Patau Syndrome, as well as alobar holoprosencephaly, or HPE. Her little body carries an extra 13 chromosome, and her brain didn't divide like it should.

But the news didn't stop there. Given the extent of Hailey's condition, we were told that our little girl was going to die.

Never in my wildest dreams could I have imagined that parents received this kind of news. You expect either a boy or a girl, and you hope that he or she is healthy. But the thought of losing your precious baby before they even take their first breath never enters your mind.

This is where our journey with Hailey began. It began with facing the devastating inevitable. It began with pouring our love and faith in God like never before. It began with the epiphany of what faith, hope and love truly mean.

Our journey has been devastating yet exciting, sad yet joyful. When we first shared our story with Stephanie and the March of Dimes, we recognized the importance Hailey's life could bring to helping future babies. We also recognized an unknown void that had to be filled. The void that doesn't exist in our minds until we, or someone we love, hear the same words we did: "your baby is going to die".

Tim and I, as well as our family, had found ourselves in a boat we never knew existed, and in waters never explored. And to our disbelief, we were given no map and no light to guide us through this storm of unparalleled pain, guilt and confusion.

However, I'm so happy to announce "Hailey's Hope". The map, the light, and the hope that will give parents the guidance and support they so desperately need for this journey. This project is dynamic in that it will have to cover the road less traveled, and assist parents in coping and preparing for the short time they will have with their child, but they will not be alone.

From the moment they hear those unconscionable words, they will have the unconditional support of families who are in and/or have been in the same boat they are. They will receive precious resources that are needed to honor, remember and cherish every moment of their child's life. Most importantly, they will be given hope. The hope that is so easily lost during this time. The same hope that will see them through to the calm after the storm.

The "Hailey's Hope" project is in its beginning stages. We have a committee of dedicated families and professionals that will be meeting next month to outline and implement the goals of offering hope. It will begin with brochures for doctors and clinics to put in the hands of parents, and it will be backed by a website and families ready with resources and support. If anyone is interested in being on this committee, please let Stephanie or I know. We hope to have this project up and running by this time next year. From personal experience, we know just how much a little bit of hope can ease the torture your heart suffers. We also know that receiving this news is the first wave of devastation. The next and last wave is one that we have yet to face. But right now we are focused on the precious and limited time in between - Hailey's life!

Every day, every second, Hailey is fighting the odds that have been stacked against her. Odds that no child should ever have to face. That is why we are here today. To recognize the miracle of life, and to offer hope for every baby to live out that miracle!

Thank you and God Bless!

So that is "Hailey's Hope"! I've been wanting to announce it sooner, but I thought I would wait until the walk. The March of Dimes is graciously taking this project under their wing and helping to make it happen. I'm so excited for this opportunity to offer hope for families at a time when they least expect it, but at the same time when they need it the most.

From the bottom of our hearts, we thank you for your gracious love and support! We couldn't continue on like we have without you!

* I will post some pictures of the event soon. Yesterday, we took some more photos with our Now I Lay Me Down To Sleep Photographer, Amy Knollmeyer. So I'll be sure to share those with you as well.

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