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.

Monday, March 30, 2009

Happy Birthday Daddy!

Today was a difficult day for me. Hailey is doing great and remains very active, but my day was spent in and out of fog for a different reason. Today would have been my dad's 50th birthday.

My dad passed away November 21, 2008 unexpectedly in his sleep. They called it sudden cardiac arrest. He greeted his new life as he took a nap that Friday, knelt by his bed, before he was to be at dialysis. Over a year before, both of his kidney's had failed and dialysis was a must. There was no doubt that he needed a transplant, and I was more than willing to give my dad anything and everything he needed.

As we began the donation process we found it to be a lengthy one. It was also one that dad was extremely hesitant about, because he never asked anyone for anything. He was always a giver, never looking to receive, and the thought of getting my kidney scared him to death. He looked me straight in the eye, on more than one occasion, and told me "NO", I was not going to give him my kidney. And as most good children do, I would remind him that I was too old for him to tell me what I could and couldn't do anymore. This was something that I was simply going to do, and there was nothing he could do to stop me. I would assure him that I was perfectly healthy and this was not as big of a deal as he was making it out to be. We had the option to wait for a cadaver donor, but a living donor proved to be the most effective. I was his daughter, and there was nothing in this world that I would rather do for him than to help save his life.

He finally got used to the idea, partly because he knew that my chances of being able to donate were slim. He had a rare blood type that wasn't compatible with many others, and we knew that he was an 'O' and I was an 'A'. So he began to grin when I would tell him, "You'll owe me for the rest of your life you know", or, "You better take extremely good care of my kidney." But I remember how serious he was at one of the first consultation appointments when he asked the doctor if this procedure would affect me having children in the future. That was one of my questions as well. The doctor told us that many women go on to have normal pregnancies with one kidney.

As we continued the process, I received a call that my blood tests came back. They explained that although theoretically 'A's' are not compatible with 'O's' for transplants, my blood was type 2 (don't ask me what that means) and I was still a possible candidate to donate. Next they needed to bring dad in and see how his blood would react to mine. I was thrilled! Despite the slim chances we were given, there was still hope.

Throughout this time, dad's health continued to decline. It got so bad that I couldn't remember the way my dad used to be anymore. My dad was the hardest worker I knew. He was always busy doing something for someone, and he had working man's hands to prove it. He owned and operated his own business fixing furniture for local businesses in the area. He was the founder and president of the United As One, United We Sing Christian Festival. A vision that he brought to life in order for Christians to gather on the state capital grounds to sing, fellowship and worship God. A unity that is only allowed in two other states. In his spare time you could find him: mowing the lawn, even if he just mowed it two days before; building a pulpit for a church in need; organizing a Christian youth concert; setting up for a chili dinner fundraiser, which he was always the first to arrive and the last to leave; watching his son's track meet; helping a friend move; coming to his daughter's rescue when a drain backed up...the list is endless really. But towards those final months his time was beginning to fill with intense coughing, days of sleepless nights, increased medications, chest pains, and hospital visits that turned into stays.

Then we found out we were pregnant... less than a month before he passed away.

We were all so excited! The greatest joy in my dad's life was being a grandpa, and he was about as excited as we were. But lately he had been unable to pick up Ryan, and I remember telling him to hold on for another nine months. He still had to see a dentist and get some other things together before he could get a transplant, but I needed him to get healthy and stay strong. He had been on a sharp decline lately, and I became increasingly worried. He would always say, "I'm fine", just like a guy, but I knew, I knew that he wasn't. I remember telling a close friend that if something happened to him I didn't know what I would do. And then on November 21st, it did.

Just like that he was gone. He told me many times before that he was ready to go home. When it was his time, he was ready. My reply was simple, "I'm not ready for you to go anywhere." So I was shocked and confused and completely devastated. That is my dad! In many ways those feelings mimicked that day over a month ago. That is my daughter!

When I look back on my dad's life, I know that he accomplished everything God had planned for him to do in his 49 years on this earth. And when I look back on my daughter's life, I will know that she too will accomplish everything God has planned for her life as well. It's truly not the years in life that matter, but the life in years.

I miss my dad every single day. I need him more now than ever, to be here for me and to get me through this. I need his hug, which there is no comparison, and I need his voice, which holds all the right words... But I try not to be selfish. Today my dad is smiling. He is happy and healthy and living an eternity in heaven. There is no greater comfort than knowing where my dad is.

I had a pleasant visit with my dad today. I told him that even though today is his 50th birthday, he still needed to finish sanding Hailey's crib, and stain her toy chest. Although, I'm sure by now he has built her a dollhouse with every accessory to go in it, right down to the matching bath towels!

Today was a beautiful sunny day. Today was my dad's 50th birthday. And today was another blessed day with my family!
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