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.

Thursday, May 7, 2009

My Baby Sister Was Made For Heaven

This journey has many rivers to cross and mountains to climb, and one of the most difficult hurdles we have faced is telling our son, Ryan, that his baby sister won't be coming home.

Everyday Ryan gives Hailey a hug and kiss. He talks to her and tells her 'good morning' and 'good night'. He tickles her and gently pats her. He tells me that he has to be gentle with the baby and careful when he plays with her. He is so excited about being a big brother, and he takes his job seriously. I am so proud of him. And each time he interacts and talks about Hailey it fills me this special kind of joy that I didn't know existed until now. The kind that you get when you see your children together, the only ones in this world that hold the key to your heart. Every time I see Tim and Ryan holding hands or just standing next to each other, a rush of pure happiness and a great sense of pride hits me. And now I have found that feeling is only magnified when you watch your children together, the greatest products of your life.

But then a new wave hits me when I think that Ryan is not going to get to do all the things that a big brother should, and that he is more than looking forward to. So as time approaches, we need to start preparing him and help him understand that what he expects is not to be expected.

I have written a book for Ryan called "My Baby Sister Was Made for Heaven." This weekend I hope to finish putting the book together and start reading it to him. I've thought about telling him a couple of times, but each time I do my mind instantly becomes cloudy, and I don't know where to begin or what words to say. So I knew that this book was the only way for us to prepare him, and explain things in a way we thought was best for him. And I also wanted it to be interactive and guide us in a conversation so that he knows he's a special part of Hailey's life. I guess in many ways the book is just as much for me as it is for him.

There are two expectations that I want Ryan to be aware of the most. One, Hailey won't be coming home with us. She will be living up in heaven with Jesus. And two, mommy and daddy will be sad. We will miss her very much and that's ok. So how do you crush a child's dream without crushing their heart? I have absolutely no idea...

"My Baby Sister Was Made for Heaven"

To a Big Brother, With Love for His Baby Sister

Written with a mother's unconditional and unmistakable love for her precious children,

Ryan Alan Glavin
Hailey Marie Glavin

- So Ryan is going to be a BIG brother!
- Are you going to have a baby brother or baby sister?
A baby sister!
- What is your baby sister's name?
- Do you know where your baby sister is?
In mommy's belly!
- What is Hailey doing in mommy's belly?
She's growing!

- You are so smart Ryan! I think you are ready to be a big brother, but first I need to tell you a story about your baby sister, Hailey, and how Jesus made her special.
- Did you know that Jesus makes all little babies?
He does!
- One time you were a baby, and Jesus made you too! Jesus is very careful when He makes little babies, and He makes them all very special.
- When Jesus made Hailey, He made her EXTRA special!
- Do you know why Hailey is so special?
Because she gets to live up in heaven with Jesus!

- You see, Hailey is going to keep growing in mommy's belly until she gets big enough. Then you, me and daddy are going to go to the hospital so the doctor can help her come out. And then we will all get to meet her!
- What will you say to Hailey when you meet her?
You are a very good big brother, Ryan!
- Will you sing her a song?
- Babies love songs. You are good at singing songs, and because you're Hailey's big brother I think she would like to hear you sing.
- What song will you sing?

- Remember how I said that Hailey is going to live with Jesus? That means that we won't get to take Hailey home with us when we leave the hospital, because Jesus is going to take her to live up in heaven with Him.
- Do you remember who else lives in heaven?
- It's okay for us to be sad sometimes. When you see mommy and daddy cry it's because we will miss Hailey very much. But it will be okay because Jesus and papa will be taking very good care of her.
- Do you know what else? Hailey will be an angel when she goes to heaven, and she can watch over us. And even though we won't be able to see her, we can still talk to her.
- Did you know that?
We can talk to her and she can hear us!

- We will think about Hailey all the time, and we will always love her. And you will always be her BIG brother!
- You have a very special baby sister, Ryan, which makes you a very special BIG Brother!
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