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.

Saturday, May 30, 2009

The Journey

I've tried to think of how to adequately describe this journey for others to understand, but the truth is it's impossible to convey its depth. The emotions you feel and the thoughts you think are incomparable to anything else you experience in life. They are emotions and thoughts that you are utterly unprepared for when you receive fatal news of your child. Furthermore, they are emotions and thoughts that a parent never expects to think or feel when they are full of life. Full of the life they want and love so much!

I suppose I would say that this journey is one of faith, hope and love. It's realizing your faith in God's love to offer hope for the journey. It's a journey with your child, an unmistakable gift from God, created for His holy purpose in realizing that there is so much more to life than what we make it out to be. You come to understand the true meaning of the gifts God's blessed each and every one of us with. They are small words that we reference nearly everyday, but that we never give much meaning to when we say them. Those gifts are of FAITH, HOPE and LOVE. The seemingly 'little' things in life that make up life. They set the foundation for each of us to live our lives according to God's will. I'm guilty of taking these things for granted, of taking life for granted and the time He's given me to really live for my children, my family, and ultimately, Him. But He's opened my eyes to the depth of their meaning since blessing me with a beautiful baby girl, Hailey.

"Right now three things remain: faith, hope and love. But the greatest of these is love." - 1 Corinthians 13:13

Our minds and our hearts were shaken and awaken by the true meaning of God's love and the plan He has for each of us. Know that God's love will always remain, even when we think it doesn't. Even when we go through the darkest of days and we feel like there's no hope. His love for us keeps Him with us always, and He is our hope! We just have to have faith.

God gave us a gift. Our gift was a beautiful baby girl. However, what I was expecting was a healthy little girl that would look like me, and grow up to be as strong-willed as her daddy. I was expecting to take her home from the hospital and raise her to be a better woman than myself. To tell her to shoot for the stars and aim for the moon, and discover pure happiness. But when our gift was revealed, we were shocked to find that she wasn't what we expected...she was so much more! Within her pure happiness already exists. She's surpassed the stars and the moon, and has achieved greatness. She inspires me to be a better person than I am today, and she will be welcomed into our Father's home. Her beauty far exceeds anything else in this world, and she has the strongest will I'll ever know. And we will experience the joy of holding her for her entire life.

Here are some other things I've outlined that you face on this journey...

* Your faith and love for God is tested. The question is whether you rely on your misunderstanding, or trust in His knowing. He has a plan for you and your child, and that plan is always far greater than our own.

* You recognize the pain a parent feels when there's nothing you can do to save you're child. When you can't fix it.

* You spend the first half of your pregnancy making plans for your child's life. From the moment they're born to the time they go off to college, get married and have children of their own. You envision your children playing together and family vacations. Then the next half you spend trying to come to terms with those empty dreams and memories.

* You're given an option, a 'choice', to terminate your child's life based on 'medical reasons' and their 'incompatibility with life'. I never would've considered ending my child's life as a 'choice', but when this option is presented to you when you're at your lowest, when no hope is offered, it penitrates your mind. And I'm ashamed to say that, but at that moment your heart as been shattered, your mind has been severed from reality, and the torture of emotions you feel is unbearable - and then you're told it could all go away. Honestly, you think you'll endure that torment until it's over, and the sooner the better. But in no way is that true! If there's anything I want to emphasize the most, it's that a child's life has purpose no matter how short, and their amazing life is measured by the sound of their heart.

* You face the unknown of knowing. You know the fate of your child, but you're left without knowing when that day will come. Is this my last day with my baby? Am I ready? But we have chosen to focus and cherish this precious time we have with Hailey. Living day by day, and celebrating every minute of it. She has reminded us that we all share the same fate, and we should all live everyday cherishing the time we have with our children, family and friends.

* You face the unexpected. You don't know what God has in store for you, but one thing is for sure, He doesn't make mistakes. When He blesses you with new life, you don't expect to have it taken away before you have a chance to see it or touch it. And you don't expect something NEW and ALIVE to be so fragile and die. After all, pregnancy is about life, not death. When you're expecting a baby, you're expecting the joy of the new life that will be delivered, not the subsequent pain of death. But God doesn't make mistakes. He blesses you in ways you least expect, when you least expect it.

* You face a chaos of conflicting emotions that you never knew could coexist. Joy and sorrow, understanding and confusion, comfort and torment, anticipation and fear. They are all undoubtedly part of the journey and a part of life. There are just very few circumstance in life when they appear side-by-side. To conquer the fear, pain and devastation is to live in the present. Live day by day. Don't waste your time reliving the past - it won't change. And don't lose time anticipating and fearing the future - it has yet to be realized. So focus on the present. Give thanks to God for the blessings He has freely given, and do not take them for granted. They may not be there tomorrow. And make decisions based on God's will, not your own. In other words, ask yourself, "What would Jesus do?" You'll find it's not always the easiest thing to do, but it shapes who you are as a person, and prepares you for the future.

* You face the missing, the emptiness, your heart will feel before the time has come for you to feel it.

* It's perfectly natural, and completely normal for for you to feel the pain and heartache of this journey. But if you let it consume you and dwell inside you, you will miss the joy and life you have with your child.

* You're faced with making funeral arrangements and burying your own child. One that you still feel kick and move inside you. One that you have not yet held in your arms. You're faced with trying to explain to her little brother that things are going to be different. You watch as other pregnant mommies shop and prepare the nursery. While others are packing their diaper bags for the hospital, you are making a list of everything you need to capture and remember your child's entire life.

* You have a much greater appreciation for life. You also have a greater appreciation for the life you carry, and the pure joy that comes from expecting a miracle. There's no such thing as a bad day when you're reminded of how how precious your child is with every kick.

This journey also tests your faith and is a testament of faith. The faith you have in God, as well as the faith you have in yourself. If you have faith in God, then you have comfort in knowing that ultimately everything will be OK.

This is the reality of the journey. It's bittersweet. And the hardest part will be when the time comes for me to say 'goodbye' to my baby girl, and the emptiness that will follow. But these two things I will remember:

One. In life, there is a beginning and an end. In God, the end is the beginning - the beginning of an everlasting beginning!

Two. We share our children. They are God's children and our gift from Him. When they leave our hands, they enter into His, forever!

But right now Ms. Hailey is nestled up inside, happy and full of life! She is our baby girl, and she's more than we ever expected!
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