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!

Tuesday, May 26, 2009

Footprints

One night I dreamed a dream. I was walking along the beach with my Lord. Across the dark sky flashed scenes from my life. For each scene, I noticed two sets of footprints in the sand, one belonging to me and one to my Lord.

When the last scene of my life shot before me I looked back at the footprints in the sand and to my suprise I noticed that many times along the path of my life there was only one set of footprints.

I realized that this was at the lowest and saddest times of my life. This always bothered me and I questioned the Lord about my dilemma.

"Lord, you told me when I decided to follow You, You would walk and talk with me all the way. But I'm aware that during the most troublesome times of my life there is only one set of footprints. I just don't understand why, when I needed You most, You leave me."

He whispered, "My preceious child, I love you and will never leave you never, ever, during your trials and testings. When you saw only one set of footprints it was then that I carried you."


- Margaret Fishback Powers

Friday, May 22, 2009

Change of Date

Since this is Memorial Day Weekend, and so many are out of town, KOMU Channel 8 News has decided to move Hailey's story to Sunday, May 31.

Have a Wonderful Memorial Day Weekend!

Tuesday, May 19, 2009

Hailey's Story in the News

Hailey's Story and Trisomy 13

Sunday, May 31 at 10:00 p.m.
KOMU Channel 8 News


Over the past couple of months we've been sharing the story of our little girl with Kaylin, reporter with KOMU Channel 8 News. She has visited with us at home, came along on a doctor's appointment, joined us for the March of Dimes walk, and attended a photo shoot we had with Amy Knollmeyer. There will also be more information listed on the KOMU website for you to check out.

From the beginning, we've hoped that our strength and willingness to share our journey of Hailey's life will make people aware of Trisomy 13, and other chromosome abnormalities that can impact babies. Most importantly we want other parents on the journey to know that they are NOT alone!

Monday, May 18, 2009

Time Is Approaching

It has come to a point now where I don't have to flip several pages in my calendar anymore. I am 33 weeks along, and I can see the weeks that are left. Sometimes I'll stare at them wondering which day it will be. I'm scared, and sometimes just down right terrified of that day. I'm excited too of course. I can't wait to meet Hailey. I can't wait to look at her beautiful face while I talk to her. I can't wait to hold her and love on her. I guess what I'm really scared of is letting her go, and that I'll be so grief stricken that I won't be able to be happy. And more than anything, I want to really celebrate the precious time I spend in that room with her. I've told myself that I can spend the rest of my life crying if need be, but for that short amount of time I want to be happy while I'm holding my baby girl. I'm afraid that's easier said than done, and I'd say it's the hardest goal a mom can ever set for herself.

So I'm praying and counting on God to continue to fuel my strength for the road that lingers ahead. My mind is never far from D-Day (Delivery Day) and meeting Hailey, and each day that passes is another day closer. And instead of another day closer to the beginning, I feel like it's another day closer to the end.

I found two verses with readings that I've been rehearsing over and over lately. Through prayer and reading God's word, I hope to reach my goal to be happy and have comfort with Hailey, even as she passes through this life in my arms.

"Be joyful always; pray continuallly; give thanks in all circumstances, for this is God's will for you in Christ Jesus." - 1 Thessalonians 5:16-18

* "Joy is one of the marks of a Christian. People know us by our joy. But when God asks us to be joyful always, He already knows we won't feel happy about everything that happens to us. Some things are too painful for us to feel happy. But, joy is more than happiness. It comes from knowing that God is in control. He also wants us to pray about everything. He wants us to talk to Him about things in our life and to thank Him because He's molding us into His image through every circumstance."

"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." - Romans 15:13

* "We can trust God for everything in our life. He cares about all of it, even the smallest, most insignificant thing. If it's important to us, it's important to Him. He wants us to firmly rely on His promise that He's in control. The more we trust His sovereignty in all situations, the more God can fill us with His joy and peace. You won't need to worry about anything because you will know that God is taking care of everything. That gives us hope. When it's in God's hands, it's secure."


Ryan Update:

I think now Ryan has a better understanding of the time we have with Hailey. He has become even more focused on her lately, and never misses an opportunity to talk to her or give her a kiss. When we watch a movie on TV, he will sit next to me and pat and rub my belly while he watches the show. It's so cute. It's like he wants her to know that he's right there in case she needs anything.

First thing every morning he pulls down the covers and says, "Good morning, Hailey!" and gives her a kiss. Then I have to beg for my 'good morning' hug and kiss. He says, "No. I just give Hailey a kiss." This morning he also felt the need to mention something I already knew: "Mommy you have the biggest belly." He's so honest!

We took him with us to the doctor last week so he could see Hailey, and needless to say he was very excited. He especially enjoyed listening to her heartbeat. Then over the weekend he surprised me by asking if Hailey was in heaven yet. I told him that she was still with us and still growing in mommy's belly. He felt good about that, as do I. And yesterday, he finally got to feel her kick! His eyes got so big! His hand is so small that she would kick one direction and then the other, so he would miss it. Then other times she would stop kicking when he tried to feel her. But she kept thumping away for him this time, and he just couldn't believe it. He told Tim, "She's kicking in mommy's tummy!" It was a priceless moment.

Hailey Update:

We went to the doctor last Thursday and had an ultrasound done. They checked to see if there was any fluid on her brain and heart, and everything looked good! The amniotic fluid levels looked good too, no build up, which is something that I was concerned about. She is approximately 2 lbs. 11 oz., and her heartbeat was a strong 152. I felt really good when we left, and seeing her again proved what a miracle she truly is! It's because of her amazing strength that we've come this far, and I'm very hopeful that our blessed journey will continue for the remaining weeks to come!

Wednesday, May 13, 2009

The Dragonfly Story

Once, in a little pond, in the muddy water under the lily pads, there lived a little water beetle in a community of water beetles. They lived a simple and comfortable life in the pond with few disturbances and interruptions.

Once in a while, sadness would come to the community when one of their fellow beetles would climb the stem of a lily pad and would never be seen again. They knew when this happened; their friend was dead, gone forever.

Then, one day, one little water beetle felt an irresistible urge to climb up that stem. However, he was determined that he would not leave forever. He would come back and tell his friends what he had found at the top.

When he reached the top and climbed out of the water onto the surface of the lily pad, he was so tired, and the sun felt so warm, that he decided he must take a nap. As he slept, his body changed and when he woke up, he had turned into a beautiful blue-tailed dragonfly with broad wings and a slender body designed for flying.

So, fly he did! And, as he soared he saw the beauty of a whole new world and a far superior way of life to what he had never known existed.

Then he remembered his beetle friends and how they were thinking by now he was dead. He wanted to go back to tell them, and explain to them that he was now more alive than he had ever been before. His life had been fulfilled rather than ended.

But, his new body would not go down into the water. He could not get back to tell his friends the good news. Then he understood that their time would come, when they, too, would know what he now knew. So, he raised his wings and flew off into his joyous new life!


~Author Unknown~


This story has given me a great sense of comfort and perspective of what is in store for each of us as long as we believe in God and accept Him as our Lord and Savior. It is also what awaits Hailey. Instead of living her life in a world of good and bad, she will fly to a place where only good exists, a place far greater than what our minds can imagaine. The place our father has prepared for us, so that we may spend an eternity with Him.

"Do not let your hearts be troubled. Trust in God; trust also in me. In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am." - John 14:1-3

Thank you, Michelle, for passing this story along.

Storytime

Never has reading a book been so hard.

Monday night I finished Ryan's book, and as we sat down on the couch to read it I started to cry. Ryan didn't notice since he was sitting in front of me and I was somehow able to keep the tears silent. So for the first few minutes Ryan just turned the pages of his book. I told Tim he would have to read it, but he chickened out too. Just as I was about to put it away for the night, the fears in my mind eased and I began to read the foreign words I had written.

I was doing pretty good until I glanced at what I would have to read next, and a flood of tears washed down my cheeks. I told Ryan that Hailey was going to live in heaven with Jesus. The following page had pictures of my dad with Ryan and he said, "Papa lives with Jesus." I told him that's right and Hailey was going to live with Jesus too. Then I went on to explain what that meant; that Hailey wouldn't be coming home with us when we leave the hospital. Immediately the 'why's' started. He wanted to know why she couldn't come home with us, then why she was going to live in heaven, then why God had made her that way. I could see right away how hard this was for him to understand. Somehow we made it out of the 'why's' and finished the book, but after the "we won't be bringing her home part" he didn't pay much attention to the rest.

It's definitely going to take some time for him to understand. I plan on reading the book and talking about what's going to happen with Hailey consistently over the next week, and to do that I obviously need more strength. Even in the conversations we have, I need to start preparing him for what to expect. To help him understand that there are things he won't be able to do anymore. Over the weekend, for example, he was telling me that he was going to share his toys with Hailey and he wanted to give her a basketball. He is so excited about having that time with Hailey, but it's time to help him focus on that one special day he'll have with her. We'll talk about her birthday party and how we'll need him to help blow out the candles for her. He'll also need to give her her birthday presents and help her unwrap them. One thing he's very much excited about is giving her the 'boo' he picked out just for her.

Last night we sat down and talked about it again, and I managed to come out dry eyed. It was interesting though, because this time he got hung up on seeing mommy and daddy cry. He said, "You don't be sad. Is daddy going to cry?" He had the most concerned look on his face, and we had a rather lengthy conversation on why we would be sad. I tell you what, some of the deepest conversations I've ever had have been with a two-year-old. They can ask the most simple questions that spark the most complex thoughts. I'm glad I knew the two things that would be the most difficult for him to understand, and what he needed to be the most prepared for, but that's all part of being a mom.

On a lighter note: After learning that Jesus made babies, Ryan asked, "Did Jesus make ketchup and mustard?"

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
and
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?
Hailey!
- 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?
Papa!
- 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!

Sunday, May 3, 2009

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