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, April 15, 2009

Preparing for the Worst, Hoping for the Best

It seems like I've focused a lot on the worst case scenario involving Hailey, but I want to be clear on something; our family is preparing for the worst, but everyday we are hoping and praying for the best.

We are believers in miracles. Life itself is a miracle, and so is Hailey. The miracle we are asking God for is strength. Strength for Hailey to make it through the delivery. Strength for her to feel our touch and hear our voice. Strength for her to live longer than anyone expected. I also ask God to heal Hailey. To heal her heart and mind, so she can live a lifetime under our love and care. But I always finish my request with, "if it is in your will." I'll be honest, the one thing I fear the most is losing Hailey before I can feel her heart beating against mine. I want to be in the presence of this amazing little girl, whose life has forever changed me. However, Hailey's life is in God's hands. I know that, and I know that there is no safer place for her to be. So whatever God has planned for her, whatever His will may be, then that is what I trust to happen.

I think in a situation like this it's important for parents to be prepared for the worst. Just think how shocked and confused you would be if a disaster struck that you were not prepared for. I don't want to be taken off guard if the worst should happen and I chose to ignore it. I especially don't want to miss out on capturing every single moment I have with Hailey that will be everything I have to hold and treasure for a lifetime. So to prepare for that day we have our Now I Lay Me Down to Sleep photographer to take pictures, we have a birthday cake and presents to celebrate, we have the perfect outfit to send her home in, we have hand and foot molding kits to put on our desks at work, we have a checklist of things to keep and put in her baby book, we have her first bible to read her, we have the bracelet I made just for her to wear, and the list goes on. It is extremely difficult to think about these things, things no parent should have to think about, but down the road I will also be more prepared to grieve and remember her life and all the time I had with her.

Another startling aspect of this journey is preparing for a funeral while I'm still pregnant. It's like I've made a jump start for the finish line before the gun's gone off. How do you do that? How can you possibly plan to bury your child before you've even held her in your arms? I recently had dinner with an amazing mom who had to say 'good-bye' to her two beautiful baby girls only a couple of weeks after saying 'hello'. She shared with me what someone had told her; planning your child's funeral is going to be one of the only acts you have as their parent. I had never thought of it like that before, but it's true. I will never get to plan Hailey's one year birthday party, her sweet sixteen, her high school and college graduation parties, her wedding, all those times when parents rejoice in celebrating their child's life. Instead I am left with one main event, planning a funeral: the burial, the obituary, the flowers, the pamplets, the slideshow. A funeral that I am pouring all my love into in order to make it a celebration and a perfect reflection of Hailey and her incredible life.

These are the types of things I'm preparing for, both mentally and physically. And I can't imagine the boat I would be in if I hadn't prepared myself. But all the while, I continually hold on to the miracle of miracles, and praying that my baby girl will have the medical field saying, "I can't explain it." It becomes a balancing act really, projecting the bad, predicting the good, but the most important thing is to never give up HOPE. Even when the worst happens, never give up on the hope and future God has planned for you.

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11

So I continue to plan and prepare for the day we will say 'hello' and 'good-bye' all in one breath, just as I continue to hope and pray for the day we witness a miracle!

I love you so much baby girl!
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