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, March 11, 2009

Big Brother




I'd like to introduce you to Hailey's big brother, Ryan! He's the first of the two greatest gifts God has given us. As I'm sure you can tell, he's not camera shy in the least and is a very social, outgoing little man. He has also shown me just how difficult it can be for a parent to discipline their child. He has just recently started testing the waters of boy orneriness, but he's very smart and knows how to use the gifts God's blessed him with, such as his witty charm and angelic face. These things he uses to his advantage, and believe it or not it works very well on daddy! Trust me, when he doesn't get his way he goes running to Tim more than he comes to me.

It doesn't matter what kind of mood we're in, Ryan can always make us smile! He has just been a phenomenal first child from day one, you know the kind that sparks you to want a whole houseful of kids, but I remember how nervous we were when we found out we were pregnant with him. I read all the pregnancy and parenting books I could get my hands on. I bought anything and everything we thought we needed. I baby proofed every inch of the house. But when we brought him home from the hospital our mommy-daddy instincts kicked in and we were good to go. Becoming a parent has been the greatest experience of our lives, and now we are blessed to experience that amazing love and bond all over again with Hailey.

When we told Ryan he was going to be a big brother he was extremely excited! Anytime you asked him whether he wanted a baby brother or baby sister, he would always opt for a sister. But I think he even became a little nervous, just like we were with him, as he thought about how he was going to take care of a baby. So instead of books he turned to baby dolls. For about a month that's all he would play with; changing their diaper, feeding them a bottle, burping them, singing them a song, buckling them in a car seat, you name it he did it, and he was always very serious about what he was doing. I remember one time he couldn't get a baby doll to stop crying, so he brought it to me with a worried expression on his face and said, "Fix her mommy!" I guess now he thinks he's as prepared as he's ever going to be, because he hasn't played with them since - which I think put Tim's mind at ease a bit.

Just about every day Ryan will ask me, "When will Hailey come out?" I tell him that she has to stay in mommy's tummy so she can keep growing. Then when she gets big enough she will be ready to come out. When we were having Christmas with Tim's grandma, Ryan came around the corner and saw me holding the newest baby in the family. He got so excited and asked, "Is that my baby!" Two-year-olds are so much fun! They are so very inquisitive, and it amazes me at how their innocent minds work.

When Ryan and I passed the hospital a couple months ago, I told him that's where he was born. I explained that when Hailey is big enough, we would all go to the hospital and the doctors would help get her out, and then we can take her home. His response was, "Mommy, will you be sad?" It took me a minute, then I realized what he was talking about. The last time we were all at that hospital was when my dad passed away in November. He didn't forget how sad I was. I said, "No, honey we won't be sad. We will be very happy!" Now how am I going to explain my tears when we go back there?

But he really gets excited when he tells us how he's going to take care of her and push her in her stroller. I took him shopping with me last week and he picked out a 'boo' for Hailey (a bear/blanket that Ryan has always used) and the one and only 'cute' sleeper she would ever wear. As you can imagine that was extremely hard to do, but having Ryan there helped me keep it together. It also gave him the opportunity to experience the same things other big brothers get to do in preparing for a new baby.

Tim and I have debated how and when we are going to tell Ryan that Hailey most likely will not be coming home with us. Ryan is extremely bright and intuitive, and we knew that we had to be careful with how we tell him and what we say around him. We've finally decided that we are going to wait and tell him until later on down the road. We are celebrating everyday of Hailey's life and we don't want to take that away from Ryan. I just don't think he would really understand, and how could he when it was so difficult for even Tim and I to understand at first. The truth is that he's already a big brother, and he always will be. Hailey will always be his sister, just like she is our daughter, and that was a fact from day one.

So we are all rejoicing and savoring Hailey's life, and we are doing our best to not spend our time focusing on the gloom that lies ahead. I think you will find that we love talking about Hailey! We love experiencing the same joys that other parents get to experience when expecting a new baby! And we don't want to deprive ourselves, Hailey, or Ryan of that happiness. How can there be worry or pain when Ryan comes up to tickle Hailey, give her a hug, or teach her to pray. Those are the times that remind me the most of how precious and valuable each life truly is. That's also when I thank God for my family and my beautiful children. Yes, there are some things that we won't get to experience and other things that will be a different experience, but the joy and happiness is still there and that's what our family is holding on to.
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