Hailey's Hope

From Hailey, HOPE

2010-04-19T19:44:00.008-05:00

Rachelle Glavin had just 42 minutes with her newborn daughter, but gained a lifetime legacy.

Jefferson City News Tribune
Monday, April 12, 2010

By (my friend) Angie Hutschreider

There is nothing like a mother's love.

A mother's love, like her dreams for her children, begin the moment she finds out she is pregnant. A mother's love will see her and her children through anything.

Rachelle Glavin grew up in a family that had a strong foundation of faith, and that foundation was laid by her parents, Perry Carey and Rita Carey Gerhardt and 'Gram' Ada Croy.

"My parents poured the foundation of my faith as a child, and my Gram, now 100 years old, continues to shed her amazing faith and wisdom on me," Rachelle said. "It also grew from watching my dad envision and obey God's calling to unite the children of God as one - that vision was the United As One Christian Festival which resides on the steps of Missouri's Capitol every summer."

Glavin, a Jefferson City native, and her husband, Tim, married five years ago, and one year later they had their first child, a son, Ryan.

"Honestly, we were a little scared at first by the prospect of becoming first-time parents, but after Ryan was born we knew of no greater joy. Then we found out that Hailey was on her way, and we were instantly overjoyed and excited to bring a new baby home to our family. Our hearts could never be prepared for what was in store for Hailey's life," Glavin said.

At the 20-week ultrasound, the Glavin's learned of their unexpected reality.

"Hailey was diagnosed with hologrosencephaly, which was identified by her physical abnormalities," Glavin said. "An amniocentesis was performed, which confirmed that Hailey also had full Trisomy 13. After both conditions were diagnosed, along with abnormalities of her heart and kidneys, Hailey's prognosis was inevitable - our daughter was going to die, and there was nothing, as her parents, we could do about it. That was the moment that changed our lives and literally brought us to our knees."

Given a 3 percent chance of surviving to term, Hailey faced great odds, but her parents' resolve was strong, they had a daughter and were going to honor her life and the time they had with their children.

"Throughout our journey we held on to the hope God gave us, and it was that hope that brought us to June 12, 2009, when Hailey was born full-term and lived in our arms for the greatest 42 minutes I'll ever know," Rachelle said.

Last spring, while still celebrating Hailey's life, the Glavin's began spreading awareness of Trisomy 13 and hope. Then they found further purpose in Hailey's life by working with the March of Dimes and Hailey's Hope.

"We were first introduced to the March of Dimes after sharing Hailey's story, and immediately we were on board to support their mission to reduce prematurity, birth defects and infant mortality. It's a mission we are grateful for as the parents of our healthy, happy 3-year-old son, Ryan, and it's a mission we embrace as the parents who are left to love and remember the life of our daughter, Hailey," she said. "We commemorated our team to Hailey's Hope, which is the blog we started to share our journey and Hailey's hope with the world."

The blog, (haileyshope.blogspot.com), the March of Dimes team, and Glavin's willingness to reach out to other mothers and families in their darkest hours, is all to honor her children.

"I believe this journey has opened our eyes to see and do things for which we had taken for granted. And along the way, Hailey taught us to rejoice in the blessings you have and give so that others may share in those blessings for the future. And we are so grateful for the generous love and support we received from our familiy, friends and community to be able to remember Hailey's precious life and secure the precious life of every baby," she said.

Glavin is also working to develop a Web site, Hailey's Hope Project, that will allow other families to reach out to one another, find resources and more.

"This journey is something that life doesn't prepare you for, and when you hear the words that speak to the fate of your child all hope can feel lost and obsolete, but it's not," she said. "Hope is there, living with a beating heart inside you, and she's there with you each morning and sees you through each night. But then one day when your hope parts from you, you find yourself lost once again until you realize that she's still there, now living within the beating heart inside you."

Even now, 10 months to the day after spending Hailey's 42 minutes together, the family is strong in their faith and in Hailey's legacy.

"This journey holds so many unanswered questions of 'why', 'what now' and 'what next' that I can't even begin to answer, but God knows," Glavin said.

"For me there came a point when needing the answers stopped being immportant, and what was important was His plan, and the only thing I needed was to put my love and faith in Him. How blessed we are that He has a plan for our children, and that our children are part of His plan for us."

Thinking of Hailey

2010-02-04T18:58:00.016-06:00

I've wanted to write many times over the past several months, but every time I tried, I failed. The holidays proved to be harder than I had feared, and it was all I could take just to get through them. I doubt my friends, family, or even my husband were able to see my struggle, but that was my goal. I wanted to keep the holidays as merry as I could, but waking up Christmas morning with a smile on my face was not something I thought I could do - but I did it. Throughout the day I watched Ryan open his presents and play with his new toys with a smile on my face and a piercing ache in my heart. The picture of our family is beautiful, and I for one am truly grateful that we could be together, but that's just it...we weren't all there.

I miss Hailey every second of every day. But there are many, many times when I see our family together and I look for our beautiful baby girl. I don't know what to do when my heart wants her so badly. So sometimes I'm quiet; sometimes I just sit and watch a movie; sometimes I stay at work a little longer; and usually those are the steps that build up to the times I lay in Hailey's room and cry. I miss Hailey every second of every day, but it is when I finally look up that I find her. And when I find her I'm able to smile again. My heart is renewed for a time before the missing sets in again.

I want everyone who has lost a child to know that my thoughts and prayers go out to you. Over the holidays I prayed for all who were enduring the first or yet another season thinking of your child rather than holding them. And I pray that the new year will hold new found joy and comfort to ease each of our hearts.

In God's Hands,

Rachelle

*************

I am a very blessed mother in that both my children keep me busy - even Hailey. We are gearing up for the March of Dimes, March for Babies walk on April 25th, and this year the walk is dedicated in memory of Hailey! Needless to say, we are humbled for a walk to remember Hailey's Hope and the hope that each child brings to make this world a happier place to be.

Stay tuned for more exciting announcments...

A Lifetime Wish

2009-12-22T15:56:00.007-06:00

If we could have a lifetime wish
A dream that would come true
We'd pray to God with all our hearts
For yesterday and You

A thousand words can't bring you back
We know because we've tried
Neither will a thousand tears
We know because we've cried

You left behind our broken hearts
And happy memories too
But we never wanted memories
We only wanted You

Author Unknown

My First Christmas In Heaven

2009-12-17T20:22:00.002-06:00

My First Christmas In Heaven

I see the countless Christmas trees
around the world below.
With tiny lights, like Heaven's stars,
reflecting on the snow.

The sight is so spectacular,
please wipe away the tear.
For I am spending Christmas with
Jesus Christ this year.

I hear the many Christmas songs
that people hold so dear.
But the sounds of music can't compare
with the Christmas choir up here.

I have no words to tell you,
the joy their voices bring.
For it is beyond description,
to hear the angels sing.

I know how much you miss me.
I see the pain inside your heart.
But I am not so far away,
we really aren't apart.

So be happy for me, dear ones.
You know I hold you dear.
And be glad I'm spending Christmas
with Jesus Christ this year.

I sent you each a special gift,
from my heavenly home above.
I sent you each a memory
of my undying love.

After all, love is a gift,
more precious than pure gold.
It was always most important
in the stories Jesus told.

Please love and keep each other,
as my Father said to do.
For I can't count the blessings or love
He has for each of you.

So have a Merry Christmas and
wipe away that tear.
Remember, I am spending Christmas
with Jesus Christ this year.

Author Unknown

A Half a Year

2009-12-12T19:55:00.002-06:00

We Live. We Grieve. We Remember.

2009-10-20T22:27:00.011-05:00

"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." - John 14:27

It's been a little over four months now since Hailey's Day, and I feel like I am where I was then. I still feel the same joy and pain.

I'd like to share a little secret that also happens to be a fear of mine, my fear is that people will forget Hailey. I'm afraid that as time continues to move forward, as it always does, Hailey's memory, her life will become less evident and less talked about, and that scares me. I know I will always remember Hailey because I am blessed to be her mother, and while I carry a part of her she too carries a part of me...the piece of my heart that she took home with her. But I'm still living four months ago because it was then that I spent my life with my daughter, it was then and only then...and now, well every one else is in the now living on and moving on. That is where a very common and very wrong misconception starts weaving itself into the minds of some people, who we run across from time to time, and who simply don't understand...grief, and more specifically a parent's grief over the loss of their child.

**********

As I write this, my purpose is to educate people of something they might not understand. I also write this from an 'us' perspective, and when I refer to 'us' I'm referring to parents who are dealing with the tragic death of their child. The pain is indescribable. You can't relate to it unless you have experienced it for yourself...and please don't try. There is nothing...nothing to convey what it feels like to lay your child down in a small, white polished box and look at her face for what you know will be the very last time - the last image you are left to live with.

"I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth." - Psalm 121:1-2

** Don't be afraid of us. Don't turn away and avoid us. If the situation makes you uncomfortable, imagine how uncomfortable it is in our shoes - to live a life without holding your child. It is okay to talk to us, hug us and show us you care. Here is one of the best things I've heard someone say to a mother hurting:

"I'm not going to try and tell you things I know nothing about...just that we all love you and you are in our thoughts and prayers."

** If you don't know what to say, don't say anything at all. Trust me, we understand. What is the right thing to say? I honestly don't have the answer, but sometimes not knowing what to say and speaking anyway might make you wish you hadn't. I remember a couple who came up to Tim and I during Hailey's visitation and they didn't say a word. They looked at us with deep, caring eyes, shook our hands and left. And let me tell you they said just what we needed to know by showing us they cared.

"A knowing look and a long hug is perfect 100% of the time." - Leah's mommy

** Say their name. It's okay! Their picture is constantly in our head, and their name is always at the tip of our tongue. Talking about our babies is what parents do, and it's no different for us. Saying their name keeps their memory alive and flourishing. Knowing that others have not forgotten the person we love most in this world gives us a sense of pride and joy that our children live on in the minds and hearts of others.

** We grieve the way we grieve. There is NO one right way to do it! Not every mother grieves the same, not every father grieves the same, and not every couple grieves the same. If we need to cry every night before bed, every birthday, holiday or every day in between for the next three years, then that's okay. If we want to be proactive and work, then that's okay too. The best thing anyone can do is respect and understand that everyone grieves differently.

You have to learn how to get through a loss - not skip over it or crawl under it.

** Don't pretend to know how you would grieve the loss of a child. My initial thought was that I would fall apart. Basically crawl under a rock and be done with it all. But the experience is so very different, on many levels, from anything you could possible think in your mind. We would never, ever wish for anyone to experience even a slice of the pain we feel, but unless you lived it you won't know how you will, in reality, 'deal' with it. So please don't expect people to grieve the way you would expect yourself to grieve - you just don't know.

** There is NO time limit to grieve. You will always remember your child, and you will always miss the joy and love you experienced when, for a little while, you carried them inside or held them in your arms. I'm sure it's true, and I'm hoping that it's true, that time helps dull the pain - but the scare is still there.

FYI...three days bereavement leave doesn't cover it - not by a long shot.

** Grandparents grieve too, and they grieve twice. I imagine they suffer an intense pain to lose a grandchild they very much love, and on top of that they experience the pain of watching their child suffer and endure the greatest pain you know they could ever experience - and there's nothing they can do about it. Just know that their hearts hurt too, and they need love and support just as we do.

** We want to be with our child. What parent would want to be anywhere else? And for us, we will be with them again one day, and what a happy day that will be, but don't assume that our longing to be with our child means we are on the edge to make that happen (unless you know someone who is displaying life threatening thoughts or behavior; in which case they may be calling out for help). I miss Hailey so much, and I would love nothing more than to see her and hold her again, but like I tell Ryan - it's not our turn to go to heaven yet, but when it is we will be with her again.

Earlier this week Ryan asked me if an airplane can take us to heaven to see Hailey. I told him that when it's time for us to go to heaven Jesus will come and get us.

** It doesn't matter how long your child lived - because the amount of time we have with our children doesn't add to or lessen the amount of pain that comes with loosing your child. This is probably the most skewed perception a person might have, but I think that I can speak for the majority of us when I say that it doesn't matter if our child lived ten years or 42 minutes. It doesn't matter if our child lived for 13 weeks with her mother (miscarriage). It doesn't matter if our child was born at peace (stillbirth). They matter to us because they are our children, no matter how long we were blessed to hold them on this earth! And our hearts break all the same. It breaks for what you lost in the past and what you lost for the future.

"Blessed are those who mourn, for they will be comforted." - Matthew 5:4

"He heals the brokenhearted and binds up their wounds." -Psalm 147:3

If you could get an inside look into our minds, and touch the pain that's in our hearts, maybe then would you come close to understanding what this road of healing is really like. If we had it our way, I guarantee you that things would be very different right now. Our hearts are broken and we need time to mend. We'll never be 100%, but we start finding things to make us smile again. That may take some time, we don't know how much exactly, but eventually we'll get there.

Thank you to the mommies of Ava, Sophie and Chloe for grieving with me and sharing the life lived in the moments we cherish with our daughters.

We live. We grieve. We remember!

I want to pass along the lyrics to a song called "When Joy and Sorrow Meet" by Avalon, which was shared by Jonathan's mommy:

There's a place of quite stillness
'tween the light and shadows reach
Where the hurting and the hopeless seek everlasting peace
Words of men and songs of angels whisper comfort bittersweet
Mending grief and life eternal where joy and sorrow meet
There is a place where hope remains
In crowns of thorns and crimson stains
And tears that fall on Jesus' feet
Where joy and sorrow meet
There's a place the lost surrender and the weary will retreat
Full of grace and mercy tender in time of unbelief
For the wounded there is healing, strength is given to the weak
Broken hearts find love redeeming where joy and sorrow meet
There's a place of thirst and hunger where the roots of faith grow deep
And there is rain and rolling thunder when the road is rough and steep
There is hope in desperation there is victory in defeat
At the cross of restoration where joy and sorrow meet

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will guard your hearts and minds as you live in Christ Jesus." - Philippians 4:6-7

Hailey's Day

2009-09-19T01:54:00.012-05:00

I've tried countless times to write about this day, but after the first sentence I would drown in tears. It looks as though I've come a little further already. This time will be no different I'm afraid as the tears are pouring, but it's pressed on my heart to get it out. To finally put words in attempt to describe something indescribable.

I had referred to it so many times before as "that day", with animosity and trepidation. That day which I feared would be the end of me. A day that I expected to be filled with more pain than a mother could take...more pain than a human heart could bear...

Have you ever been so happy that you couldn't stop crying? Have you ever known a joy and love that could have only come from the place it was made? Well I have...and that is why I can't see right now...

But what I can see is my little girl's face...I can see her open her mouth when I touch her cheek...I can see every strand of hair on her head...I can see her perfect little fingers wrapped around mine...I can see....I can see it all so clear. I can see my angel, safe in the hands of God...and I can see, smell, feel, taste and touch the truth of life that He's shown me.

My tears run thick. They run in memory of the lifetime I spent with my daughter. That lifetime was spent on a single day - June 12, 2009 - in one room numbered 265. That is where we were...holding a life for a time of 42 minutes...

**********

When I reminisce on "Hailey's Day", as Ryan has declared it, the tears are released. They aren't released by pain and grief. They are released by the joy and love that consumed our hearts that day...

I can't explain what it's like to loose a child...I can't explain what it's like to have one either. Hailey's day is a memory of beauty and peace, of love and of life...the dragonfly's eye view of heaven.

Oh how I miss this day...I miss my beautiful baby girl

Hailey's Day was just over three months ago, but for me, her day is every day. I carry it with me always, and it will forever bring a smile to my lips and a tear to my cheek. I smile because my heart overflows with joy, and I cry because my heart still aches. But every day is Hailey's Day...a day of God's love, His promise, and His plan to give us hope and a future - and those things can only be found when you have faith in Him.

**********

I need to be honest. Hailey's Day ended much differently than it started. The sun rose to light, and the sun set to darkness. I never knew such pain, just as I had never known such joy. Hailey's Day was the best day of my life - but not the worst. To say it was also the worst day of my life would mean that it would be the one day I would want to go away...to forget and pretend it never happened. Never would I trade June 12, 2009 for a day without pain. This was the day I lived for...on this day I felt the warmth of an angel held in my arms...I captured a glimpse of heaven...and it was the day that brought me closer to God, and brought me to my daughter.

**********

There are no words to narrate the pain of the setting sun. That's not what Hailey's Day is about. Hailey's Day is about the rising sun and its light that shines brighter than any other star. And when the sun settles into it's place over the horizon, there is one other that eagerly awaits it's fulfillment of light.

Is the day over? No...Hailey's Day was just the beginning...

Testament of Faith

2009-09-03T20:40:00.009-05:00

I want to take a moment and introduce you to the man that is my dad. I have been fortunate enough to have been raised by someone who was such a great testament of faith. I have witnessed how God can take an ordinary man to do extraordinary things. It's hard to think of anything more extraordinary than to witness the power of God's children united as one body of Christ...the way God had intended...

Blessings to All,

On August 29, 2009, Missouri's state capital welcomed over 6,000 Christians to the United As One Christian Festival.

Eight years ago, a man named Perry Carey envisioned a choir clothed in robes of different colors coming together to sing and praise God. After many sleepless nights, Perry knew what it meant and what he had to do. It was a calling to unite the children of God, divided by denominational walls, to gather on common ground (the lawn of Missouri's state capital) for one purpose, for one day - to praise and worship our one and only God. His dream, his vision gave way to the United As One Christian Festival in Jefferson City, MO. After seven years, this festival has grown from 500 to 6,500 witnesses to the power of God's children UNITED - united as one body of Christ! That is something that can't be ignored!

"A Man with a Vision" is in memory of Perry Carey, our dad, who listened and obeyed to what God set on his heart to do. And he didn't stop until his dying breath...

The 2008 Christian Festival became the last that dad would see on this earth. On November 21, 2008 dad passed away peacefully while taking a nap. Dad suffered from kidney failure and his condition worsened from other health complications. During the dark days of battling with his illness and trials, he became even closer to God. He always said, "I can't quit on God; He's never quite on me." So he kept going and kept working at uniting the children of God in the community. He succeeded!

Dad had a different view of the Christian Festival this year, but this event wouldn't have been made possible without the dedicated volunteers that continued on to make this dream a reality. Thank You!

And for one day, over 6,000 Christians gathered on the capital lawn to stand United As One!

God Bless!
Rachelle Glavin & Zach Carey

Piece of Trivia: Missouri is one of only two states, Alaska being the other, that allows Christians to organize on capital grounds to exercise the greatest freedom of all.
~
For more information about the United As One Christian Festival visit http://www.unitedasone.info/

This year's Christian Festival was also featured in Sunday's paper of the News Tribune. "United as One Christian founder dies, but his event flourishes" http://www.newstribune.com/articles/2009/08/30/news_local/123local10united09.txt

"Divine inspiration led Perry Carey to organize Christian festival"
http://www.newstribune.com/articles/2008/08/25/news_local/128localnews02portrait.txt

A New Road

2009-07-29T21:02:00.005-05:00

Over the past six months, I have cried harder and longer than ever before, but I've also experienced more joy, more love, more life than I ever knew existed. We've found ourselves traveling a new road, and though we don't know what lies ahead, we continue forward with our angel on one side and God on the other.

Stronger in FAITH... Comforted by HOPE ... Happy with LOVE

Thank you for continuing to keep our family in your thoughts and prayers. Our hearts are healing and overflowing with the love and gratitude we hold for everyone. Thank you so much!

Love,
Hailey's Mommy

More of Hailey's story to come...

42 Minutes

2009-07-12T21:24:00.014-05:00

It has been one month today. One month since Hailey was born, and one month since God called her home. One month has passed since we held an angel in our arms for 42 minutes.

As I write this, I write through a teary fog. I miss my baby girl so much. I miss the sweet smell of her skin and the soft touch of her hand. I miss kissing her chubby cheeks. I miss how complete we were when I held her in my arms. And I miss the memories we would have made yesterday, today and tomorrow. But for as long as I live, there will be no greater memory than the one we shared for 42 minutes...

Thursday, June 11

8:00 p.m. - Tim and I arrived at St. Mary's hospital and were welcomed by our labor and delivery nurse, Robyn.
9:00 p.m. - After we settled in, I was given a pill to help soften the cervix.
11:00 p.m. - The pill kicked me into labor and contractions were every 2-3 minutes.

Friday, June 12

4:15 a.m. - Offered an epidural, but decided to hold off a little longer.
4:20 a.m. - Called Robyn back in to get me the epidural. : )
4:55 a.m. - Dilated to a 6.
5:25 a.m. - Dilated to a 9 and called Dr. Dodson. We called our parents and our photographer, Amy Knollmeyer.
5:45 a.m. - Dr. Dodson arrived and we prepared to meet our baby girl. Hailey had been breached, but she had gotten herself in position and we could see her beautiful head of hair. Her heart was still beating.
6:03 a.m. - One little push and she was here!

42 Minutes...

Pure joy consumes me and true love draws me in to the most beautiful sight of heaven. She is beautiful. Every four pounds, six ounces, sixteen and three quarter inches of her is perfectly and indescribably beautiful. I'm captivated, and my eyes never once leave her presence.

Tim cuts the cord and so begins Hailey's journey to my arms.

There are no words to describe what it's like to hold my daughter for the first time. All I know is that we were meant to be...right here, right now. I feel as if all my life, I was meant to live for this moment. This moment to experience God's love and love for an angel.

The speech I had rehearsed escapes me and I am left without words. What I manage to say out loud only stutters what my heart feels as it is conquered by the precious gift I'm holding. My first words to her are, "Hello, baby girl. It's mommy." Followed by a series of, "I love you," "You are so beautiful," "Everything's going to be okay," and "Mommy and Daddy are here." Tim and I admire her from head to toe. I shower her with kisses and hold her tight. As I stroke the side of her cheek, she moves her head and opens her mouth slightly. She lets out a quiet attempt at a cry, and relaxes comfortably back in my embrace. This is the only movement she makes, but Tim and I are ecstatic.

We are so captivated by Hailey that we don't realize the minutes that are ticking by. Several times Dr. Dodson comes to listen to Hailey's heartbeat. Nineties, Fifties, Twenties. The last time she lifts the scope from Hailey's chest and says, "I don't hear a heartbeat anymore." A few tears blur my vision as I let everyone in the room know, "She's okay. She's more than okay now."

I kiss her once more and whisper, "Thank you."

God's Gift...Our Angel Baby

2009-07-02T11:09:00.005-05:00

Our journey started with a gift from God...our angel baby. I made this memorial to honor Hailey's life, and to honor the life she gave to us. I hope you find the same faith, hope and love for life that Hailey has shown us.

No matter how short, every life has a purpose in this world...otherwise they would never have existed.

Grateful Hearts

2009-07-01T18:49:00.004-05:00

I sincerely apologize for this post coming long overdue. It's been almost three weeks now since Hailey's birthday, or "Hailey's Day" as Ryan calls it, and while our hearts are still on the mend we've been trying to take things slow. We've been spending as much time with our family as we can, and I've just tried not to get so overwhelmed with everything on my 'to do' list. There's also so much I want to share with everyone from the moment Hailey was placed in our arms to how we are coping with moving forward, but I promise I will get to all that as soon as I can.

However, what I want to do now is say THANK YOU! And like I said, I apologize for falling off the reservation over the past few weeks and not saying those two words sooner. Those two words hold how grateful and humbled we are for the prayers, the kind words and the acts of kindness that have been sent our way. I really can't stress enough how grateful we are and how much it really means to us. Your caring for Hailey and our family has brought us through these rough waters and kept our hope alive.

Another day becomes possible as prayers continue to be answered and thoughts continue to be fulfilled.

THANK YOU!

Growing in comfort and love,

The Glavin Family

One Day at a Time

2009-06-23T00:59:00.004-05:00

I've tried several times to write over the past week, but every time I tried my thoughts and words would get jumbled up and I just couldn't do it. And though it's still hard for me to find the words to suit my feelings I figured I'd give it another try.

It's been over a week now since Hailey's birthday, and a week since we commemorated her new life in heaven. I can't say that I know exactly where the time has gone since then, and to be honest I think I've spent a great deal of it exhausted and in a fog. During this time I've also struggled with what it is exactly that I'm supposed to be doing, because what I'm supposed to be doing right now I can't, and that really hurts. There are times when I'm doing the littlest things around the house that I'll stop and cry because it just doesn't feel right. And then I begin to think about all the other things I should be doing at that moment. I see myself feeding Hailey or changing her diaper, or simply holding her in my arms. I see myself doing all those things that a mother should be doing after just giving birth. I guess I just get lost sometimes, and I suppose that's a normal part of the grieving process as you adapt to change and adjust to a new way of living without holding the one thing you want most in this world.

I didn't know quite what to expect in this chapter of healing, and honestly I tried not to give it too much thought. But I've found it has definitely brought with it a few surprises courtesy of God's love and comfort. One of my fears has always been the emptiness that I was sure to feel the second I stepped foot outside that hospital without my baby. The emptiness of my arms that would resonate to my heart. But to my surprise that feeling didn't exist for me then and it still doesn't. My heart was so full of the life and love I had just shared with my little girl that made it impossible for me to fill empty. She is too much a part of me and who I am to feel like there's nothing there, like she's not there. And while my arms didn't hold Hailey anymore, they still held the other gifts in my life, my son and my husband. Blessings that I will never again take for granted. Please don't be mistaken, leaving that hospital was the second to the hardest thing I've ever had to do in my life, but I knew I still had Hailey with me. I had her with me in a new way now. A way that we're not use to having people in our lives because we're human and we need and want things that we can see and touch. I don't think we always realize how much we live our lives with our minds instead of our hearts. Now we are having to adjust to Hailey living in our hearts instead of by our mind's sight. It will take some time, but I believe once we do that, we'll find her presence is just as real, and even greater, than it was when I held her for those 42 minutes.

Something else that has surprised me is feeling like a family of four. Of course I knew that I would now have two amazing children, and I would tell people that if they asked, but everywhere we go I always see us as a family of four. It's difficult for me to explain what I mean by that but when Tim, Ryan and I are all together, Hailey is always there too. Even when I look at Tim and Ryan, I instantly feel Hailey, and that feeling is just as real to me as anything my eyes can see. We've embedded her so deeply in our hearts that she will always be with us wherever we go, and she is and always will be part of our family. In a way I think that right there might be some proof that we are learning how to live on with Hailey.

To describe loosing a child...Looking at your child's face for what you know will be the last time...I'm not even going to try because there's no words to describe it. You know it only if you've experienced it, but what I can tell you is that sting of pain you felt as you read those words is only the tip of the iceberg. So what do you say, what do you do after holding your child's life in your hands? It's different for everyone, but as I laid down on the night of June 12, I found I didn't know quite what to say to God. But on that night, and every night since, I have prayed the same simple prayer that holds every thought and every feeling; "Thank you, Jesus. Thank you." In that prayer I thank Him for Hailey, and for choosing me to be her mommy. I thank Him for the time I had with her, and that He is taking care of her now. I also thank Him for my family, and for all the blessings He continues to send my way. I also thank Him for dying on that cross for me, and preparing a place for my family to be together again without ever having to say 'good-bye'. And then I cry. I cry because I miss my little girl, and I cry because I can't believe how blessed I am. My tears are of joy and sorrow, never one without the other.

I've found the best guideline on this part of our journey is to walk with God and simply take it one day at a time.

Letter from Mommy

2009-06-16T14:49:00.002-05:00

My Sweet Baby Girl,

For 42 minutes I held your life in my arms. And it was an experience that I have never, and will never in my life know again. There are no words to describe the strength of our time with one another. I was so captivated by your presence in my arms that all words escaped me. I simply didn't know what to say to someone so perfect. But what needed to be said was said, and what needed to be felt was felt. Everything was already there between us, as they have been from the beginning.

As I looked upon your beautiful face, I knew I was looking at the face of an angel...our angel. I was looking at the little girl that has changed my life forever, and you did so without ever having to say a single word. You have changed everything about me through the kicks and movements we shared, through the steady sound of your heartbeat, through the smell of your skin and the touch of your hand. You have taken me on a journey unlike any other. On a journey that shook me and woke me to a life unlived and a woman unknown. You've saved me with your strength and your courage, and by the unconditional hope you've given me. You've shown me what it means to appreciate life, and what it means to live life with unwavering faith, hope and love for God. And all this is because of you, my angel, of our unexpected gift from above.

Today my heart is complete yet broken, but that's because my heart has never loved like this before. And though the pain of losing a piece of my heart is great, the joy of knowing you and loving you is so much greater. Mommy is going to miss you so much, but my heart is comforted knowing that you are safe in God's hands, and that you are home.

We love you sweet girl, more than words can say or the heart can feel. We love you for all that you are and all the joy you've brought to our lives. And I can rest assured knowing that the plans God has for me will eventually bring me back to you.

Until that happy day, baby girl, hold on to that piece of mommy's heart that's yours so that you always remember the precious time we've shared, and how much you are a part of me and who I am.

I love you so much baby girl!

Love Always,

Mommy

This is the letter that was read at Hailey's memorial service yesterday. There is so much that I want to share, and I will, but this week may be a little slow. But I'll just say that yesterday was perfectly amazing in every way! Our family is doing pretty well, and we greatly appreciate the continued prayers as we embark on this next chapter of healing.

God Bless!

Announcement

2009-06-13T22:46:00.003-05:00

Hailey Marie Glavin was born Friday, June 12, 2009 at St. Mary's Health Center in Jefferson City.

Hailey spent her life cradled in the arms of her loving parents. In 42 minutes, Hailey's life was complete as she peacefully went home, but not before leaving her footprint in this world and in the hearts of many.

Twenty weeks into life, Hailey was diagnosed with trisomy 13. Her condition was said to be "incompatible with life," but Hailey proved otherwise. Although her life only lasted moments, they are moments that others will live and experience for a lifetime.

Hailey's proud and blessed parents, Tim and Rachelle Glavin, and big brother, Ryan Glavin, survive at their home in Jefferson City, MO.

Her loving family also includes maternal grandparents, Nick and Rita Carey Gerhardt of Jefferson City, MO.; paternal grandparents, Ralph and Jean Glavin of Frankenstein, MO.; aunt, Jamie Glavin of Linn, MO.; uncles, Zach Carey and Toby and Laura Glavin, all of Jefferson city, MO.; cousin Lexi Glavin; and great-great grandmother, Ada Croy of Centertown, MO. Great-grandparents include: Jim Croy of California, MO., Pat McDow of Jefferson City, MO., Dorothy Mudd of Jefferson City, MO., and Catherine Kever of Loose Creek, MO.

Hailey is welcomed into heaven by uncle Benjamin Carey; maternal grandpa, Perry Carey; and great-grandparents, Andy Croy, Liz Croy, Garland Farrington, Francis Kever, and Wilma and Felix Glavin.

Visitation will be held on Monday, June 15, 2009, from 2-3 p.m. at Capital City Christian Church, 1512 Swifts Hwy., Jefferson City. Memorial services will follow at the church at 3 p.m. with Rev. Troy Easley and Rev. Gary Baker officiating. Interment will follow in California City Cemetery at California, MO.

Expressions of sympathy may be made to the March of Dimes.

Arrangements are under the direction of Houser-Millard Funeral Directors, 2613 West Main St., Jefferson City, MO.

Happy Birthday Hailey!

2009-06-12T17:43:00.004-05:00

Hailey Marie Glavin

Born Friday, June 12 at 6:03 a.m.

Weight: 4 lbs. 6 oz.
Length: 16 3/4 in.

She had ten fingers, ten toes, and was perfect in every way! She embraced us for 42 miraculous minutes before going home.

Hailey's visitation and memorial service will be held on Monday, June 15 at Capital City Christian Church located at 1512 Swifts Hwy, Jefferson City, MO. This is an open invitation to rejoice in God's greatness, and celebrate Ms. Hailey's life. Visitation is from 2:00 p.m. - 3:00 p.m. with the memorial service immediately following.

I will write more soon, but please, please know that your prayers were answered for our family! Thank you!

A Look Back on Our Journey

2009-06-11T09:25:00.000-05:00

Journey of Hope

2009-06-10T21:31:00.006-05:00

“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.”

This is our journey. Our journey is of the plans God has for us, and part of our plan was Hailey. Our precious little girl sent to prosper our hearts and give us hope and a future that has forever been changed for the better.

“Then you will call upon me, and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you,” declares the Lord. - Jeremiah 29:11-14

Now as we approach the day when we meet our angel baby for the first and last time, we call upon the Lord and pray for His comfort and love to embrace each one of us. To give our hearts the strength to focus on the joy of this special day, and to heal when the day is done. We know He is listening, and we have found Him. We reached out to Him with our whole heart, and He is right here with us with us every step of the way.

3 More Days

2009-06-08T21:35:00.005-05:00

It's Monday night now, which means we only have three more days until Tim and I head to the hospital. It also means we're that much closer to meeting our little girl!

I truly believe that we've made a wise decision in planning for Hailey's birthday. We've found that we are better prepared now that we are focused on that day with a date intact. I'm also relieved that I don't have to worry anymore whether or not everyone will be able to make it for her special day. Dr. Dodson will be there when we go to the hospital and when we deliver. Our amazing photographer and friend, Amy Knollmeyer, has graciously cleared her schedule to capture every moment of Hailey's life. Our church and the funeral home know the game plan now. There was just so many things that I was worried about, things pregnant mommies don't expect to worry about when they're about to have a baby. I know I've had four months to adjust to all the planning and preparing, but sometimes it gets to me that I'm planning a birthday and funeral all at the same time, and it's stressful. But my worries are no more, thanks to the wonderful people who have made themselves readily available for us. Now I just get to concentrate on the amazing day that lies ahead. I especially think this time has been beneficial for Tim and Ryan. Over the past four months, I have had Hailey to remind me of what is and what is to come. But for them, they've only had my big belly to look at. Now I think they are both in the zone, and it's all coming together, as we look forward to meeting Hailey in just a few short days.

Of course Ryan is very excited to finally meet his baby sister. We've talked about it quite a bit over the weekend, and when I asked him questions he knew the answers. He knows that Hailey is going to live up in heaven with Jesus. We talked about her birthday party, and he knew what he was going to help with - which is everything. He's in charge of giving the presents to her, helping her open them, blowing out the candles, and eating the cake. He also wants to play his guitar for her which will keep us all entertained. I think he understands how special that time is going to be with her, but I know that there will be times when he questions why she's not with us. Tonight he asked me if she was going to sleep on the couch or in her bed. He was so serious that I just had to smile.

Thursday I plan on taking Ryan with me to pick out a little birthday cake and some balloons that he will bring to the hospital on Friday. That evening we are going out to eat with our family to have a pre-birthday party. I've been hooked on McDonald's and McAlister's this pregnancy, and since I've had more than enough McDonald's to last a lifetime I think we'll be eating at McAlister's...although...I could fit McDonald's in for lunch! But that will be a good time, and I'm looking forward to it. We also plan to take Ryan along with us so he can see the room where Hailey will be born. That way when he comes back on Friday he will be a little more comfortable with everything.

Well that's all the updates I have for now, but I want to thank everyone so much for the extra prayers this week. I believe it's giving us the strength to focus on the joy of Hailey's birthday!

Hailey...Coming Soon!

2009-06-05T18:40:00.007-05:00

Over the past week I've been juggling this thought that our meeting with Hailey was coming soon. Yesterday that feeling was so strong that it couldn't be ignored. So I did a lot of thinking and praying. I've always thought that I would continue on through the pregnancy until Hailey let me know it was time. I would wait until I went into labor, or alternatively, until my inner being lay quietly at rest. However, that plan was challenged as this tugging on my heart and mind grew more intense. I questioned where this second opinion came from, but after much prayer I believe it was God nudging me to get ready, to be prepared.

So we've decided that next Friday we will take the first step towards meeting our daughter face-to-face. We will go in Thursday night and induce then on Friday morning. At that time she will also have defied the odds and the 3% chance that was given for her to survive to term. Her strength and love has endured! So during this next week of anticipation, we will be packing our bags and preparing our hearts to spend the most precious time of Hailey's life. And if Ms. Hailey decides to greet us sooner, then we will be ready.

I can't tell you how nervous I am, and maybe not for the reason you're thinking. I am nervous because I'm going to finally meet the person who has forever changed my life and who I am. I've never asked myself this before now, but who would you like to meet most in this world? Who do you look up to? Who inspires you? Who's made you think about the depth, the reality, the truth of life? For me, that person is not a world leader or missionary. It's not a famous activist or saint. It's not a celebrity or sports legend. It's this itty bitty gift inside me who enjoys keeping me up all night and sharing my energy all day. It's a little girl with a face that reflects pureness and beauty, and a heart that displays strength and courage. It's my angel baby! And soon I'll get to meet her and hold her in my arms. I'll be speaking my first words to her and spending her whole life with her. What an honor, what a joy that will be! *Side note: Of course the ultimate being I'd like to meet, and that I plan to meet face-to-face someday is and always will be my holy father. The One that created me, died for me, and blessed me with the most amazing gifts life has to offer.

So that's the headline: "Ms. Hailey Marie Glavin...Coming Soon!"

We will keep you posted on when our angel is delivered into our arms and into God's hands.

With all our hearts, we thank you for sharing your footsteps on this journey. We thank you for your love and support. Your prayers have made it possible for us to embrace another day.

In God I Trust,
Rachelle

The Journey

2009-05-30T16:09:00.011-05:00

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!

Footprints

2009-05-26T09:41:00.003-05:00

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

Change of Date

2009-05-22T08:54:00.002-05:00

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!

Hailey's Story in the News

2009-05-19T14:27:00.005-05:00

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!

Time Is Approaching

2009-05-18T10:59:00.013-05:00

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!

The Dragonfly Story

2009-05-13T14:40:00.009-05:00

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

2009-05-13T11:00:00.010-05:00

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?"

My Baby Sister Was Made For Heaven

2009-05-07T20:56:00.006-05:00

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!

March of Dimes Photos

2009-05-03T15:01:00.003-05:00

Hailey's Hope

2009-04-28T15:50:00.010-05:00

I can't thank everyone enough for coming out to the walk on Sunday. It was a beautiful day and one that our family will never forget! I don't know if there are words to express how much that day really meant to us. It was a day we got to all be together to honor Hailey and the lives of every baby. It was far greater than what I had even hoped it would be.

If there was anyone there that didn't know what Hailey's Hope was all about, they do now. It was amazing to see everyone wearing their Hailey's Hope shirts. The signatures and messages written on the Hailey's Hope board were beautiful, and we will be reading them for years to come. Another amazing sight was all the steps dedicated to Hailey lined up along the walk. I walked the trail before the walk started and I just couldn't believe how far her steps traveled (which is why I could only get halfway through when the walk actually started...sorry). It was an incredible feeling to see all the people who are thinking about Hailey and showing their support. Speaking of support, our team raised over $5,000 for the March of Dimes! The March of Dimes is on a mission to helping every baby get a healthy start, and that can't happen without all of us. So thank you for your time, money and support in saving babies.

After the walk, our family talked a little about Hailey, and we announced the Hailey's Hope project. I have included my 'speech' below. I'm not a public speaker whatsoever, so of course I had to write out what I wanted to say beforehand. And that was a good thing, because the day was far more emotional for me than what I expected.

I would like to thank each of you for coming out here today. Tim and I are personally humbled to have those of you join our family in walking for "Hailey's Hope" in honor of our daughter Hailey Marie Glavin.

On February 17, during the ever anticipated 20 week ultrasound, Tim and I found out that our second child was the little girl we'd been hoping for. However, we also found that Hailey had Trisomy 13, also known as Patau Syndrome, as well as alobar holoprosencephaly, or HPE. Her little body carries an extra 13 chromosome, and her brain didn't divide like it should.

But the news didn't stop there. Given the extent of Hailey's condition, we were told that our little girl was going to die.

Never in my wildest dreams could I have imagined that parents received this kind of news. You expect either a boy or a girl, and you hope that he or she is healthy. But the thought of losing your precious baby before they even take their first breath never enters your mind.

This is where our journey with Hailey began. It began with facing the devastating inevitable. It began with pouring our love and faith in God like never before. It began with the epiphany of what faith, hope and love truly mean.

Our journey has been devastating yet exciting, sad yet joyful. When we first shared our story with Stephanie and the March of Dimes, we recognized the importance Hailey's life could bring to helping future babies. We also recognized an unknown void that had to be filled. The void that doesn't exist in our minds until we, or someone we love, hear the same words we did: "your baby is going to die".

Tim and I, as well as our family, had found ourselves in a boat we never knew existed, and in waters never explored. And to our disbelief, we were given no map and no light to guide us through this storm of unparalleled pain, guilt and confusion.

However, I'm so happy to announce "Hailey's Hope". The map, the light, and the hope that will give parents the guidance and support they so desperately need for this journey. This project is dynamic in that it will have to cover the road less traveled, and assist parents in coping and preparing for the short time they will have with their child, but they will not be alone.

From the moment they hear those unconscionable words, they will have the unconditional support of families who are in and/or have been in the same boat they are. They will receive precious resources that are needed to honor, remember and cherish every moment of their child's life. Most importantly, they will be given hope. The hope that is so easily lost during this time. The same hope that will see them through to the calm after the storm.

The "Hailey's Hope" project is in its beginning stages. We have a committee of dedicated families and professionals that will be meeting next month to outline and implement the goals of offering hope. It will begin with brochures for doctors and clinics to put in the hands of parents, and it will be backed by a website and families ready with resources and support. If anyone is interested in being on this committee, please let Stephanie or I know. We hope to have this project up and running by this time next year. From personal experience, we know just how much a little bit of hope can ease the torture your heart suffers. We also know that receiving this news is the first wave of devastation. The next and last wave is one that we have yet to face. But right now we are focused on the precious and limited time in between - Hailey's life!

Every day, every second, Hailey is fighting the odds that have been stacked against her. Odds that no child should ever have to face. That is why we are here today. To recognize the miracle of life, and to offer hope for every baby to live out that miracle!

Thank you and God Bless!

So that is "Hailey's Hope"! I've been wanting to announce it sooner, but I thought I would wait until the walk. The March of Dimes is graciously taking this project under their wing and helping to make it happen. I'm so excited for this opportunity to offer hope for families at a time when they least expect it, but at the same time when they need it the most.

From the bottom of our hearts, we thank you for your gracious love and support! We couldn't continue on like we have without you!

* I will post some pictures of the event soon. Yesterday, we took some more photos with our Now I Lay Me Down To Sleep Photographer, Amy Knollmeyer. So I'll be sure to share those with you as well.

Hailey's Hope Coming this Sunday!

2009-04-23T21:38:00.004-05:00

On your mark...Get set...Go!

March of Dimes, March for Babies Walk

This Sunday, April 26

Registration starts at 12:30 p.m.
Walk kicks-off at 1:30 p.m.

Memorial Park
Jefferson City, MO

Come on out and take a stroll through the park with "Hailey's Hope"! We also need some supporters to cheer us on, so please come even if you can't participate in the walk. We would much rather have you there then not at all. Our family has been anxiously awaiting the March of Dimes walk, not only because we will be honoring our daughter, Hailey Marie, but because we also have the opportunity to fulfill her purpose in life by helping to save the lives of future babies!

When you come to the walk, please look for our team booth, Hailey's Hope (I promise we'll make it hard to miss). This is where all walkers/supporters for Hailey will register for the walk, sign a "Signatures of Hope" board, dedicate steps, and pick-up and order Hailey's Hope t-shirts. Aside from registering, we definitely would like for everyone to sign your name to the "Signatures of Hope" board so we can treasure this wonderful day and memory with Hailey. You are all a very special part of this journey, and we want to be able to look back on the beautiful lives our daughter has touched.

It looks to be a beautiful Sunday afternoon, but we'll be walking come rain or shine. So let's continue to pray that the rain holds off until the evening, just to be safe. Don't forget to grab the whole family and bring them along to enjoy this inspirational day! There will be fellowship, food, games and more!

We hope to see you there! We would like to meet and visit with everyone who has been following along with us on this journey, and who has given us and Hailey the support and prayer we need to make it another day. We appreciate each and every one of you!

We'll see you Sunday!

* Bring your blankets and lawn chairs.

Hailey in 3D

2009-04-21T00:41:00.013-05:00

Today was a very exciting day! We got to see Ms. Hailey in 3D! The pictures and video clips we got of her moving all around are simply amazing. She is one active little girl after breakfast.

We got to watch her for about 30 minutes, and in that time we saw her stretch her little toes apart and kick. We also watched her exercise as she did crunches, touching her elbows to her knees and back again. I must say with all that McDonald's we eat, I'm glad at least one of us is working out! She must have been having a bad hair day, because she wasn't interested in us taking many pictures of her - just like her daddy! Her arms and hands kept blocking the way, but we found that she seemed to enjoy chewing on them. We have a cute video clip of her chewing on her arm and putting her fingers in and out of her mouth.

We invited my mom and mother-in-law to come with us, because we wanted them to see Hailey active, happy and alive. We just don't know if they will get that chance later, and we want them to have as many precious moments with Hailey as they can get. We all had a great time watching her. We shared some laughs and made some happy, precious memories of Hailey that we will never forget!

As we sat there and watched Hailey, it never entered my mind that she was sick and fighting the tremendous odds that are stacked against her. All I saw was my little girl playing and exercising, happy and safe! And I felt my bond with her grow even stronger as I watched every move she made.

When we were done, reality sunk in and I wondered how it was possible for her to have so much 'wrong' when she is so strong and active. I don't understand very much of the medical world, and the mechanics of it all, but I do understand hope. And today I walked away with a greater sense of hope; that the strength and courage I saw in her today will continue to carry on.

"But those who HOPE in the Lord will renew their strength." - Isaiah 40:31

"May the God of HOPE fill you with all joy and peace as you trust in Him..." - Romans 15:13

Never give up hope...I know Hailey isn't.

A Shower of Faith, Hope & Love

2009-04-19T22:52:00.010-05:00

Obviously this pregnancy is different in countless ways, and there are things that simply don't apply to me anymore. One of those things started immediately after we learned about Hailey's condition when we received sympathy and 'thinking of you' cards in the mail. Of course we were comforted and appreciative knowing that we had a backbone of support to lean on. We knew that everyone was praying and thinking of our little girl, but it wasn't for the same reason as before. It was going to be different, and these were the kinds of things we would be getting for Hailey. Prior to the news, we received one baby gift, a cute little blanket and card, for Hailey and it was hard knowing that it would also be the last. There would be no need for a baby shower. No need for outfits, blankets, diapers, toys, bottles, rattles or teethers. No point in playing embarrassing 'pregnant' games, guessing who the baby will look like, or predicting what she'll be when she grows up. That's just the way it was, and that was OK. I had a different future to plan for now, and I was going to make it as special as I could.

Never have I expected or anticipated a shower of any kind, but on Saturday I was surprised beyond belief with a shower far greater than any other shower or celebration. A shower of family and friends celebrating life, Hailey's life, and the amazing gifts of faith, hope and love that Hailey has come to remind us of. A shower filled with a deeper meaning and appreciation of the things we value most in this world, but so often have taken for granted. A shower that I will never in my life forget.

The invitations read:

Hailey's Hope

A Shower of Faith, Hope and Love
Celebrating Hailey Marie's Life & the Tender Embrace of God

Saturday, April 18, 2009

Inspirational gifts, writings & cards suggested

This special memory was far greater than anything I could have ever imagined. Each and every gift and card meant more to me than any baby gift ever could, and just the presence of everyone there was enough to make the shower complete without the need of games or small talk. Our focus and thought was on Hailey's precious life, the greatness of God, and the gifts of life He's given us. I'm thrilled that I now get to have a 'Faith, Hope and Love Shower' page to include in Hailey's baby book, but more than that, I am humbled and blessed to have such a special and treasured memory of this time with Hailey.

I thought I would share one of the inspirational gifts with you so you can get an idea of how truly special the day was. This is a poem that was written by one of my aunts.

God chooses a gift for every one,
And Hailey is your gift to hold.
He knows that the both of you,
Are wonderful, courageous and bold.

He knows that you appreciate,
The life you have within.
He knows you will love her,
Even before her life would begin.

God has a special purpose,
For everything that He does.
No need to ask Him why or how,
There is a better reason than just "Because".

He prepares us with little baby steps,
For all the wonderful things to come.
He tests our forever faith in Him,
And rewards us when He is done.

God has given little Hailey to you,
Because of the gift that she will be.
To add to all the wonderful things,
That God is giving to your family.

He has chosen for you to carry His gift,
To give her a place for her soul.
And for what ever the purpose there is for her,
Will eventually reveal God's goal.

The spirit we can all see in your eyes,
Is only seen in a few.
God knows all the love you have for Him,
And that is why He chose you.

Remember that what ever comes your way,
Is just the beginning of even more wonderful things to come.
And because of your growing faith in Him,
You are truly the blessed ones.

We will all be with you on your journey,
No matter what your journey holds.
Remember all the blessings that are coming,
As your gifts from God unfolds.

Thank you one and all for your love. The memories I will have with Hailey are few, but they are greater than many. I love my life, I love my God, and I love my family and friends.

I am eternally blessed!

Preparing for the Worst, Hoping for the Best

2009-04-15T20:39:00.014-05:00

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!

Family Updates

2009-04-12T18:37:00.009-05:00

Ms. Hailey Marie

Hailey continues to grow stronger (and bigger) everyday! It's hard for me to believe she could be so sick with all that power she has in those legs of hers. Her playtime used to be in the afternoons, it was like she got an energy boost after lunch. She has since discovered the joys of an afternoon siesta, and the fun of pulling an all-nighter. I've taken a liking to her new routine as well. It makes for less trips to the restroom during the day, and for sweet dreams all through the night! Hailey continues to fuel our hope for the future.

Big Brother

What is there not to say about Ryan? He is one amazing, smart little boy who absolutley loves his little sister. Everyday he gives her a kiss and hug. He also likes to make sure Hailey's still in there, but I know he knows she is. He told me the other morning, "Mommy your belly is sticking out!" and laughs (and of course Tim feels the need to join in). Then he tickles her and tells me she's laughing too. That's ok though, because the bigger I get (belly wise), the bigger and stonger she gets.

Tim and I have talked about telling Ryan soon. We feel that he needs to understand that our time with Hailey is going to be different than what we expected. I think the hardest part that will be for him to understand is that Hailey won't be coming home with us. I have finally finished writing the storybook I want to use to help prepare him for what's to come. The books I've found online just don't seem to explain how special this journey really is. I also felt that personalizing it and making it specific to Ryan and Hailey would make it even more special. I also know how smart Ryan is and the right words were absolutely necessary. All I have left to do now is get a scrapbook and put it together. I will be happy to share the story in a later post.

Mr. Under-the-Weather

We found out Wednesday what that unknown virus was Tim's been battling for the past two weeks. It took three visits to the doctor (different doctors) before discovering that he actually has pneumonia. But I'm happy to report that he is finally starting to feel a little bit better! :)

As for me...

I'm just happy to live and love God and my family everyday! There is no such thing as a bad day when you have God and your family to have and to hold.

I hope everyone had a Happy Easter!

Thank you God for the gift of your son, sent to rescue us from living an eternity without you.

My Other Half

2009-04-06T23:02:00.012-05:00

I wouldn't say he's my 'better' half per se, although he may argue otherwise, but he compliments me well. Either way he's definitely my other half and where I leave off, he picks up!

My husband, Tim, and I have have been married for almost four years now, (Honey, this is a friendly reminder it's coming up soon!) and they have honestly been four wonderful, yet very short, years! It amazes me how time flies when your young, in love and starting a family.

I must admit that I am a lucky girl to have found such a great guy! I can't say enough good things about him. Anyone who knows Tim knows what a hard worker he is; he reminds me a lot of my dad in that way. Tim serves in the Missouri National Guard, and just recently started working for them full time. He also has his own lawn mowing business, which Ryan is REALLY looking forward to helping with this year. I'm pretty sure Ryan's first love is to mow grass. I'm telling you, he could circle the house 80 times with his little lawn mower and not get bored! It is serious business to him, "I need to mow grass. Just two more minutes." But up until recently, Tim's life had always been working his full time job at the bank, serving in the National Guard, mowing grass for the majority of the year, going to school full time, and being a full time husband and father. Another thing I admire about him is that he never says 'No' to someone in need. You could always count on him to be there when you need a ride, or you need help moving, or when you need a buddy to go to the game with. He never complains, he just does it. Let me be clear here, his wife does not fall into this category! Apparently I am not someone who is ever in need of anything important. Now what was I saying...ah yes, it just amazes me how he found the time to do all that and still be there for his family. He's never been anything less than a good provider, a wonderful husband, and an excellent dad! I truly mean that.

I must admit that I was a little frustrated after Ryan was born. He always carried around this "I have no idea what to do with a baby" face on and it bugged me. I so badly wanted him to do something and help, but I didn't know what it was I wanted him to do. And every time he tried to help, like change a diaper, for some reason it was never quite right! Poor guy. I gave him such a hard time. It's just a simple fact that guys take to babies differently than women do. They like to ease their way into it; no rush. And when the diaper comes off, they're standing on their own two feet, and they're starting to talk back to mommy, then they come in; full steam ahead! (Ok. Maybe not quite that way, but you catch my drift.) It really didn't take that long before Tim became comfortable with Ryan. The idea of becoming a parent was exciting yet terrifying all at the same time for both of us. We were so excited to be parents together, and to experience life's most amazing miracle, yet we were terrified of failing. But we eventually tamed that fear as much as a parent can. We knew we could and would always provide Ryan with all the love and care he, and every child, needs and deserves. I knew that Tim was going to be a one-of-a-kind dad, and he is!

There is no one else I would rather have by my side through all the good times and hard times. He was my rock and saving grace when my dad passed away. I don't know how, but he just knew what I needed through that time, and he was always right there. I can't convey just how grateful I am for everything he did. Now, only a short time later, we found ourselves embarking on another difficult journey, one that we didn't expect and we're unprepared for.

I don't know exactly how all this has impacted Tim. I know that he has obtained a deeper understanding of life, faith, love and hope, just as I have, but I'm not sure how this has affected him as a father. He was in shock over it all for longer than I was, wondering how things could have changed so drastically in one day. I think that's why he was hesitant to share our story at first. I was ready, but it was too soon for him because he still hadn't figured it all out yet. Like any good dad, he was trying to fix it and make it all better, but he couldn't. He realizes now that this is our time and our life with our daughter. From now until that day is everything we will have to remember and cherish the new and precious life we've been waiting for. We also know that Hailey has so much of life to give, not just for us but to share with everyone.

This experience is a little different for me than it is for Tim. I get to experience Hailey first hand everyday. I get to feel her kick, stretch and move; a connection that he doesn't have with her. I think that makes a difference now, because while I get to focus and concentrate more on her being alive, he is left with thinking about that day. That day he gets to meet his daughter. That day when he gets to hold her for the first time and last time. That day he thinks he has to hold it together for everyone. When Hailey is born, and Tim gets to see her, hold her and talk to her, I know that my experience with her now won't be any different than his experience with her then. He will instantly have that special connection that exists between father and daughter. The one I've always wanted him to experience. And we will both incur the same feeling of hurt and pain a parent suffers when losing a child.

There are many reasons why I know that everything will be okay, one of which is that I have Tim. I am blessed that he is my husband, the father of my children, and the man who is always standing next to me. I love you, babe!

FYI...I would have wrote about Tim earlier this week, but he's kept me busy playing his nursemaid. He's been sick with some kind of virus for over a week now. I've never seen him this sick or for this long. But where he leaves off, I pick up... and he leaves off quite a bit when he's sick! :)

Jeremiah's Song

2009-04-04T19:52:00.003-05:00

Before you were ever born, He set your life apart;
Before I held you in my arms, You were held in God's own heart.

Before all time began, His hand was on your life;
He knew you and formed you in His image, in His light.

Before I even dared to dream, He was planning our family;
Before all space and time, He knew I'd be yours and you'd be mine.

Before all time began, His hand was on your life;
He knew you and formed you in His image, in His light.

Before you were ever born-
Before I held you in my arms.

- By Steve Millikan

Happy Birthday Daddy!

2009-03-30T22:06:00.014-05:00

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!

Walk for Hailey's Hope

2009-03-26T15:06:00.010-05:00

The past couple of weeks have been a little busy at our house, so I apologize for not writing as frequently as I'd like. However, during that time our family found yet another meaning and purpose of Hailey's life. Hailey reminded us of how precious life truly is, but it wasn't until the March of Dimes contacted us that I realized there was actually something we could do.

March of Dimes is a truly wonderful organization that is working hard to reduce the occurrence of birth defects, premature births and infant mortality by funding extensive research and education programs across the country. If I can help save even one family from receiving the same news we did, and ensure even one baby a healthy chance at life, then the pain and hurt our family suffered would all be worth it.

Our family is now fully committed to helping March of Dimes achieve their mission to prevent birth defects and infant mortality. Therefore we have dedicated team Hailey's Hope to join the thousands of compassionate teams across the country that support March for Babies. We would like to invite you to join Hailey's Hope in the walk that helps every baby have a healthy chance at life!

On Sunday, April 26, Hailey’s Hope will be participating in the March for Babies walk at Memorial Park, Jefferson City. To register for the walk, visit our team’s web page at www.marchforbabies.org/657720, click JOIN THIS TEAM at the top of the page, and you’re ready to go! You can also register at the walk. Registration starts at 12:30 p.m. and the walk kicks-off at 1:30 p.m. A $20 donation per adult is suggested, but any contribution is appreciated to help support March of Dimes in honor of Hailey.

Bring the whole family! There will be games and activities for the kids, t-shirts, and lunch will be served after the walk. Our family would be thrilled to have everyone there to honor Hailey’s life and the miracle of life for every baby!

So our beautiful baby girl is hard at work again, making sure that her purpose in this life is fulfilled. It reminds me of the Rick Warren book "The Purpose Driven Life". It's a powerful book which seeks to help you answer one simple question, "Why am I here?" Hailey continues to answer that question everyday as she brings new meaning to life. It's clear that God sent her here for more reasons than one, and helping ensure healthy lives for future babies is definitely on her 'to do' list.

SAVE THE DATE:

April 26
1:30 p.m.
Memorial Park
Jefferson City, MO

Please join us and walk for Hailey's Hope, and be a part of this special memory we will forever treasure with our daughter.

Thank you for your support and God bless!

The Glavin Family
Tim, Rachelle, Ryan and Hailey

* You can also make donations online at www.marchforbabies.org/657720 or send check donations to The Glavin Family, 904 Westwood Drive, Jefferson City, MO 65109. Please make checks payable to March of Dimes.

Truths of Life

2009-03-23T20:04:00.013-05:00

I thought I would share some lessons in life that my daughter has proven to be true. Here are just a few, and are in no particular order...

When seeking to understand; seek no further than God.
"Never will I leave you; Never will I forsake you." - Hebrews 13:5
God's plan is far greater than our own, so trust it.
Doing what is right is not always the easiest thing to do.
God blesses us the most when we least expect it.
Don't take life for granted. Love, honor and cherish the time you have and the time you have with your family.
Don't underestimate the power of prayer.
God gives, God takes away, and God blesses our lives forever!
It is okay to cry. Just remember that you are always in God's hands, and He will take care of you.
Seek God when you are hurting and in pain, but remember to seek Him all the times in between.
If you believe and trust in God, in the end everything will be okay.
God doesn't give you more than you can bear. I have found that you learn more from the load you carry.
God can do all things great and small.
"What we have once enjoyed we can never lose. All that we love deeply becomes a part of us." - Helen Keller
"Every good and perfect gift comes from above." - James 1:17

One of the greatest truths that I know to be true:

"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. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you."
- Jeremiah 29:11-14

Therefore, I know that I am not alone. I know that God has a plan for me and for Hailey. I am part of hers and she is part of mine, and I am blessed! I do not need to understand what God's plan holds, simply because I know it is His plan.

Update: Hailey is one an active little girl! She keeps busy all day long, but her energy boost seems to come in the afternoon and at night. And I love it! I love being uncomfortable, I love being kicked in the bladder, and I love carrying life inside me everyday. She keeps a smile on my face, and never is there a bad day. I have too much to be thankful for.

Hailey's spirit and strength amazes me!

Dear Mommy,

2009-03-19T10:06:00.012-05:00

Please don't cry,
Please don't worry.
I know you will miss me,
But please, don't miss me yet.

I am still here, Mommy,
I am with you everyday.
You take me wherever you go,
And with you I will stay.

I am warm and content,
I find plenty of room to play.
I am safe with you, Mommy,
I am happy everyday.

We are not alone,
We will always have each other.
God is with us too, Mommy,
Guiding us along the way.

Be strong, Mommy,
Do not be afraid.
I am here, Mommy,
And that will never change.

I love you, Mommy,
Thank you for taking me all the way.
I love you, Mommy,
Be strong, be happy and live life with me everyday.

With love from your baby girl,

Hailey

****************************

I am not a poetic writer, so this isn't meant to rhyme. I just wrote it with a daughter's love, for her mother's comfort. When I read it, I am reminded that Hailey hasn't gone anywhere. She is safely tucked inside, and I'm going to keep her safe, and celebrate the blessing of her life for as long as God allows. I also know that Hailey will always be with me, even when we come to the crossroads on this journey. My 'good-bye' to her on this earth will be temporary, and spoken only once. For when I see her again, 'good-bye' will cease to exist.

I thank God for the gift of life. I thank Him for Hailey's life, and the life she will forever live with Him! He is an awesome God. And in our hands He entrusted the most beautiful, perfect little girl, an angel, who was created for the glory of heaven!

God blesses us the most when we least expect it.

Love,
Rachelle

Letting Go...

2009-03-16T19:14:00.014-05:00

I'm not sure where to even start with this one...

I know that what lies ahead is going to be the hardest thing I will ever experience in my life. Last night I think I was able to pinpoint the exact moment when it's going to be the absolute worst..letting her go.

Here is a rough draft of what I picture happening in that hospital room.

Hailey's strength endures the delivery and she is immediately laid in my arms. I feel her warmth. I kiss her dark mess of hair and hold her close. I admire her beautiful face. I wrap her hand around my finger. I inspect every inch of her and she is perfect! My first words to her are, "Hi, my baby girl! This is mommy!" I go on to tell her how much I love her, how proud I am of her, and how honored I am to be her mommy. I let her know that her big brother Ryan says "Hello. He loves you and he can't wait to come in and meet you". I tell her "We did it!" That she is so strong just like her daddy, and she conquered the odds. I am blissfully happy. I got to meet my little girl. I got to hold her and love on her. I get to celebrate the life Tim and I created together, and that God blessed us with. Then I tell her everything is going to be OK. She is going to live with Jesus, and everything will be OK. Mommy and daddy will catch up with her soon, but she will never be alone. We won't leave her until Jesus comes to take her hand.

When my time is up, I cry. But I hold her close and continue to kiss her head, her cheek, her hand, and I never stop telling her I love her. I love her, I will always love her, and I will never ever forget her. She will always be with me.

Once I've gotten it together a bit, we bring in Ryan. Tim is sitting down holding Hailey. Ryan comes to sit on my lap and we talk for a minute. I read to him the book I made beforehand that explains perfectly how Jesus made Hailey extra special, an angel, and that she is going to live in heaven with Him. {I don't have the book made yet, but I'm working on it. I'm still searching for the right words.} Then we take him over to hold her hand and kiss her head. He talks to her and sings her a song. After we've had our family time, we ask for our parents to join us. I picture our moms coming in with tears rolling down their faces. They each hold her and love on her.

To lighten the mood, Tim and Ryan get the small cake we brought to celebrate Hailey's birthday. Tim lights the candle and we sing to her. We let Ryan blow out the candle since Hailey's too little, and she needs her big brother to help. What's a birthday without gifts? Ryan gives Hailey her birthday present; the 'cute boo' that he picked out for her. It's a very special gift from her big brother. Today is also a special day for Ryan because he is a big brother, and Hailey got him a little something too; a matching 'boo' in blue. Of course Ryan loves it and couldn't ask for anything better.

We laugh. We cry. We couldn't imagine trading this day for anything else in the world. We get to hold, and touch, and kiss one of God's own miracles. An angel. My baby girl.

After our parents say their 'good-byes'. Tim, Ryan and I are left alone. Ryan kisses her one last time and gives her a big hug; probably never knowing that it will be his last. Our Now I Lay Me Down to Sleep photographer is there to capture every minute we spent in that room with Hailey. Every minute that I will hold on to for the rest of my life. Ryan leaves, and Tim and I are left to say whatever is in our hearts to say to our beautiful daughter. Our amazing little girl that came and left this world all too soon. A precious and perfect gift that has changed our lives forever. An inspiration that will leave a legacy to outlast our own.

Then comes the worst part. The part that breaks me and tears me into a million pieces. The only thought of this whole day that had me crying in Tim's arms last night.

Letting go...

Hailey leaves my arms. My whole world is stripped from my embrace...by strangers. I hand her over to strangers; to never set eyes on her beautiful face again. They turn their back on me and carry my little girl away. My heart is gone. The torture and devastation we felt on the first day our journey with Hailey began, returns...multiplied by every blessed day we traveled on this journey since then.

What happens next is a blur. A whirlwind of treasured memories mixed with pain and sorrow.

I know that I will see Hailey again! I will find comfort and peace in God. He will take care of me, just like he is taking care of Hailey. She couldn't be in better hands than in the hands of God.

I will see my daughter again!

I will just have to wait.

*-*-*-*-*-*-*-*-*-*-*

"'He heals the brokenhearted and binds up their wounds." - Psalm 147:3

"'Blessed are those who mourn, for they will be comforted.'" - Matthew 5:4

"'I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.'" - John 16:33

"Never will I leave you; never will I forsake you." - Hebrews 13:5

Big Brother

2009-03-11T19:51:00.027-05:00

I'd like to introduce you to Hailey's big brother, Ryan! He's the first of the two greatest gifts God has given us. As I'm sure you can tell, he's not camera shy in the least and is a very social, outgoing little man. He has also shown me just how difficult it can be for a parent to discipline their child. He has just recently started testing the waters of boy orneriness, but he's very smart and knows how to use the gifts God's blessed him with, such as his witty charm and angelic face. These things he uses to his advantage, and believe it or not it works very well on daddy! Trust me, when he doesn't get his way he goes running to Tim more than he comes to me.

It doesn't matter what kind of mood we're in, Ryan can always make us smile! He has just been a phenomenal first child from day one, you know the kind that sparks you to want a whole houseful of kids, but I remember how nervous we were when we found out we were pregnant with him. I read all the pregnancy and parenting books I could get my hands on. I bought anything and everything we thought we needed. I baby proofed every inch of the house. But when we brought him home from the hospital our mommy-daddy instincts kicked in and we were good to go. Becoming a parent has been the greatest experience of our lives, and now we are blessed to experience that amazing love and bond all over again with Hailey.

When we told Ryan he was going to be a big brother he was extremely excited! Anytime you asked him whether he wanted a baby brother or baby sister, he would always opt for a sister. But I think he even became a little nervous, just like we were with him, as he thought about how he was going to take care of a baby. So instead of books he turned to baby dolls. For about a month that's all he would play with; changing their diaper, feeding them a bottle, burping them, singing them a song, buckling them in a car seat, you name it he did it, and he was always very serious about what he was doing. I remember one time he couldn't get a baby doll to stop crying, so he brought it to me with a worried expression on his face and said, "Fix her mommy!" I guess now he thinks he's as prepared as he's ever going to be, because he hasn't played with them since - which I think put Tim's mind at ease a bit.

Just about every day Ryan will ask me, "When will Hailey come out?" I tell him that she has to stay in mommy's tummy so she can keep growing. Then when she gets big enough she will be ready to come out. When we were having Christmas with Tim's grandma, Ryan came around the corner and saw me holding the newest baby in the family. He got so excited and asked, "Is that my baby!" Two-year-olds are so much fun! They are so very inquisitive, and it amazes me at how their innocent minds work.

When Ryan and I passed the hospital a couple months ago, I told him that's where he was born. I explained that when Hailey is big enough, we would all go to the hospital and the doctors would help get her out, and then we can take her home. His response was, "Mommy, will you be sad?" It took me a minute, then I realized what he was talking about. The last time we were all at that hospital was when my dad passed away in November. He didn't forget how sad I was. I said, "No, honey we won't be sad. We will be very happy!" Now how am I going to explain my tears when we go back there?

But he really gets excited when he tells us how he's going to take care of her and push her in her stroller. I took him shopping with me last week and he picked out a 'boo' for Hailey (a bear/blanket that Ryan has always used) and the one and only 'cute' sleeper she would ever wear. As you can imagine that was extremely hard to do, but having Ryan there helped me keep it together. It also gave him the opportunity to experience the same things other big brothers get to do in preparing for a new baby.

Tim and I have debated how and when we are going to tell Ryan that Hailey most likely will not be coming home with us. Ryan is extremely bright and intuitive, and we knew that we had to be careful with how we tell him and what we say around him. We've finally decided that we are going to wait and tell him until later on down the road. We are celebrating everyday of Hailey's life and we don't want to take that away from Ryan. I just don't think he would really understand, and how could he when it was so difficult for even Tim and I to understand at first. The truth is that he's already a big brother, and he always will be. Hailey will always be his sister, just like she is our daughter, and that was a fact from day one.

So we are all rejoicing and savoring Hailey's life, and we are doing our best to not spend our time focusing on the gloom that lies ahead. I think you will find that we love talking about Hailey! We love experiencing the same joys that other parents get to experience when expecting a new baby! And we don't want to deprive ourselves, Hailey, or Ryan of that happiness. How can there be worry or pain when Ryan comes up to tickle Hailey, give her a hug, or teach her to pray. Those are the times that remind me the most of how precious and valuable each life truly is. That's also when I thank God for my family and my beautiful children. Yes, there are some things that we won't get to experience and other things that will be a different experience, but the joy and happiness is still there and that's what our family is holding on to.

Thank You God For Another Day!

2009-03-10T21:11:00.008-05:00

I thought today was it!

Over the past couple of days I've noticed that Hailey's movements haven't been as frequent or as noticeable, but last night I really started to worry.

Every night before I fall asleep, I wait for Hailey's good night nudge, and last night I waited an unusually long time. When she finally gave me a faint sign, I was thrilled yet weary. It wasn't until this morning that I knew I needed to make sure she was okay. I started having these small pinching pains, and I couldn't be sure if I had even felt her move any all morning. I called Dr. Dodson's office and made an appointment for early this afternoon. The wait was nerve racking, and daylight savings time didn't help me any.

While I was getting ready it suddenly hit me, what if this is it? What if this was my last day to be with my daughter? So I cried and I prayed. I asked God for just one more day. I wasn't ready for it "to be time" yet. I was still gathering more strength for that day, and I wasn't ready.

Then I found myself in that room again. Laying on that table. Looking at that screen. This was where I had received that devastating blow exactly three weeks ago, and now I felt sure it was coming again! No, I wasn't ready.

That's when I saw her! She was beautiful! And there in the middle of my being was her fluttering heart, followed by the most beautiful sound I've ever heard. I looked up at Dr. Dodson and told her "That's all I needed to hear." To say I was relieved is an understatement. Today wasn't the day that I would loose my child! Thank you God!

I think Hailey felt my anxiety and fear, because she has been rolling, poking, and probing me ever since. My hope has been restored!

However, I now know where I'm lacking. I have the strength to live each day without continuous worry or fear of what is to come, but I still need a tremendous amount of strength for when today becomes that day. The day when my world stops.

I also struggle with not knowing if I will get the opportunity to meet my daughter while she is still alive. I so badly want her to hear my voice and feel my touch. I also want to feel her heart beating. A heart as strong, as pure, as deep, is a miracle. And to feel it beating against my own would be the closest to heaven I can get on this earth.

But I'm going with God's plan. I don't know if that plan entails Hailey going home sooner or later, but it's His plan and that's all that matters. These are my wants, but what I need is to continue trusting in Him and His plan for Hailey.

So often we forget how precious life really is. It is something we have no control over. It can be gone in a blink of an eye. It is not something to dread or fear. It is a gift, given freely by God, for us to embrace and cherish and live every minute of, and every moment we have with our family.

Thank you God for this beautiful, rainy day!

Cherishing the time they have

2009-03-10T09:58:00.007-05:00

By Angie Hutschreider
Jefferson City News Tribune
Sunday, March 8, 2009

“I woke up today with optimism and excitement, and in a couple of hours my world was turned upside down, by confusion and an extreme form of sadness that I had never in my life felt before. My heart, my soul, my mind were in continuous torment,” Rachelle Glavin wrote.

It’s hard to imagine what a parent would do when they find out their child is sick. When that child is not yet born, and their illness is fatal, most cannot even imagine how they would react.

At 20 weeks gestation, Rachelle anxiously waited for her ultrasound, excited to find out the gender of her second child, though unusually nervous.

“My husband (Tim) did not come with me to that appointment because he did not want to know what we were having and was afraid it might slip,” Rachelle recalled. “And I was fine with that – he wanted to be surprised and I wanted to know.”

During the ultrasound, Rachelle became nervous when she noticed something seemed wrong when looking at the top of the skull. She asked the technician, and they told her the doctor would discuss it with her. That’s when she knew her mother’s intuition was right – something was wrong. And silent tears fell down her cheek.

“My heart stopped then and I called Tim and told him something was wrong.”

After being sent to a maternal-fetal specialist in Columbia, they were given the news.

The Glavins were told that their daughter, Hailey, has alobar holoprosencephaly (HPE). She was also diagnosed with full Trisomy 13, or Patau syndrome, following additional testing.

Dr. Kimberly Martin, obstetrician/gynecologist and clinical geneticist with the Center for Maternal-Fetal Care in Columbia, said Trisomy 13 occurs at conception.

“Trisomy 13 is caused by a random error that occurs during formation of the egg or sperm, resulting in the baby being conceived with an extra chromosome 13,” Martin said.

This extra chromosome 13 interferes with the formation of many major organs, especially affecting the heart and brain development. HPE causes brain and structural deformities.

While these types of chromosomal errors occur more frequently in older mothers, there is a small chance of this occurrence with any pregnancy.

“It can happen regardless of the mother’s age,” she said.

Martin, who has been in practice for nearly 16 years, said she sees one or two cases of Trisomy 13 each year.

HPE affects about one in 10,000 babies, and Trisomy 13 affects one in 3,000-6,000 babies and varies in severity. “With the severity of Hailey’s condition, she is given little chance of surviving to term,” Rachelle said.

“There is a failure for the brain to divide into a right and left brain,” she [Martin] said. “Most children will have a problem with the development of the midline of their faces.”

Not all babies with Trisomy 13 have HPE. “Sometimes,” Martin said, “the brain will appear normal, but because of the extra chromosome 13 the brain will not function normally after birth.”

Rachelle was laying in the ultrasound examining room with Tim, watching Hailey pull her legs up and move around. The experience was both exciting and confusing to the family.

Tim asked Rachelle how the baby could be moving around so much if something was wrong with her brain.

Throughout Rachelle’s pregnancy – and even now – she said she still feels healthy, which can be confusing when her unborn child is facing such odds.

“A baby’s movement, pre-birth, is a response from the lower brain and is not purposeful movement, it is reflex” she [Martin] said. “It takes some time after birth for the child to move with purpose.”

The Glavin family knows the chances are bleak for their daughter. But instead of sitting back and waiting for the inevitable to happen, Rachelle says they are embracing every moment they have with Hailey. That means positioning a bassinet in the room meant for Hailey. Arranged tiny, pastel-colored baby gifts that came early in pregnancy will be set out, all prepared for Hailey, giving Rachelle the chance to commemorate her life. And all are awaiting Hailey, should she come home.

“It will always be her room,” she said.

“I am going to touch every kick, smile at every stretch, and count every nudge my daughter blesses me with,” she said. “And I will be reminded of how precious life is, how precious Hailey is, and how God blesses us in ways we never imagined.”

Rachelle said it is her family’s faith in God that is keeping them strong, though she has moments of grief.

“I will admit that sometimes after I have counted my blessings I cry. It is hard not to because I begin to think about what tomorrow might bring,” she said.

“The unknown is something we all deal with,” she said. “The truth is none of us know. We don’t know when, where or how.”

Rachelle said while they are sad about the reality of the situation, she does not want to be sad while she still has so much to be happy for.

“I am tired of saying ‘good-bye’ before I have even said ‘hello’,” she said. “I want to be happy and enjoy the time we have with her.”

March 13 is Trisomy 13 Awareness Day.

Follow the family’s journey at www.haileyshope.blogspot.com.

Hailey Raising Awareness of Trisomy 13

2009-03-08T10:07:00.001-05:00

Good Morning!

I was so surprised to find Hailey's story on the front page of today's paper!

I cried and cried when I read it! It was beautifully written, and I am so proud of our little girl!

I haven't found an electronic version of the article yet, but here is the font page.

Pick Up a Paper

2009-03-07T22:43:00.003-06:00

Just FYI: Hailey's story will be in the Jefferson City News Tribune tomorrow, Sunday, March 8th, to help raise awareness of Trisomy 13. I will post it here as soon as I can. I can't wait to read it!

Have a good night!

Those Tough Moments

2009-03-07T09:34:00.018-06:00

This experience with Hailey is definitely amazing and life-changing, but it's also definitely not easy. Our family has acquired the strength we need to trust in the hope for tomorrow, and to subdue the hurt and pain that we will have to face one day. However, we are human and every once in awhile that pain surfaces when I start to think about one of two things: losing Hailey, and losing that part of my life that had her in it everyday.

I think about Hailey's room that I won't get to paint and decorate in baby pink and chocolate brown. I think about the new rocking chair we got for Christmas that will never serve its intended purpose. I think about our family dinners that will remain one short of filling the table. I think about all the Kodak moments that will never be captured. I think about the braids and pony tails I'll never get to help her with. I think about the red wagon we got for Ryan to pull his little sister around at the zoo. I think about family vacations, her first day of kindergarten, her high school and college graduation, her wedding, her children...everything parents treasure with their children that we will never experience with Hailey.

Then there are other times when I think about the things no parent should ever have to contemplate, especially when you're pregnant and full of a life you want and love so much. I think about the right words I'm going to have to say to an excited little boy one day. I think about the moment Hailey's heart stops beating. I think about the first and last words I'll ever get to say to our daughter. I think about how I'm ever going to hand my little girl over to a stranger. And most of all I think about the horrendous void my arms and my heart are going to feel when I leave that hospital. A feeling that I'm sure will remain for the rest of my life.

These are those tough moments I was referring to. This is when I cry, I grieve, and I turn to God the most. I referred to these as tough 'moments', because God doesn't allow them to last hours or days, just brief moments of time to grieve over what is to come and what will never be. I like to think that these episodes of sorrow are chiseling away from the iceberg of pain that awaits.

Thankfully my strength always returns, and I remind myself that this is all part of God's plan, not my own, and that His plan is the only one I want to live by. He also has a plan for Hailey, and even though it's not the same plan I have for her, it's the plan that I trust. I also realize that the hopes and dreams I had for Hailey haven't gone away, they've only changed. They have changed to mimic the understanding of God's plan for her, and it's amazing how already she has fulfilled those hopes and dreams. Our daughter has taught us lessons in appreciating life, unconditional love, unwavering faith and endless hope. These pivotal lessons I believe are in God's plan for each one of us. These lessons can't be learned from a textbook or a philosopher. That epiphany comes from knowing God, and for us it was also knowing what a true gift and blessing Hailey is and always will be. My hope and dream now is for Hailey to grow stronger so she can meet her parents and feel our warmth and love before she goes home. I want to tell her how beautiful she is, how a parent couldn't be more proud of their child, and how much we love her and will always love her. This is the first and last moment that I hope to have with my daughter, and one that I will forever treasure experiencing with Hailey on this earth.

I felt like sharing this gloomy side of reality because one, this week for some reason I've had many of these tough moments, and two, it's a very real part of this journey. Hailey reminds me more and more every day that we're not there yet. That right here, right now she continues to grow stronger, and provides me with the hope I need for that day I get to meet my little girl face-to-face.

With Hope and Love,

Rachelle

Picture Time

2009-03-04T20:03:00.016-06:00

This is The Glavin Family; Tim, Rachelle, Ryan and Hailey!

Special thank you to Amy Knollmeyer, photographer for Now I Lay Me Down to Sleep Foundation, for volunteering her time to take these beautiful pictures for us to remember each step of our journey to Hailey!

Finding Strength

2009-03-03T19:43:00.019-06:00

I've been asked many times, "How do you find the strength to get through this?"

And here's the simple truth:

"I can do all things through Christ who gives me strength." - Philippians 4:13

The astounding strength our family has found, can only be found and given by God. I've said it once and I'll say it again, I don't know where we would be without Him. It's simply hard for me to even imagine, but I would guess we would feel no hope, no joy, no tomorrow. We would probably be reliving that first day over and over, until the day came when we took the 'easy' way out. Even thinking about living in that torment of devastation every day, with nothing to hold onto, and nothing to guide you and give you peace...it's almost too much to contemplate. But unfortunately there are families out there that are unable to find the strength and hope they so desperately need to embrace the amazing blessing they have been given.

I knew God before, but not like I do now. It's hard for some people to understand how enduring so much trial and tribulation can bring you closer to loving and trusting in God - the one who gets the blame for all the grief in your life to begin with. Trying to explain this journey we are taking is difficult, but perhaps the hardest part to describe is also the most incredible, and that is the amazing closeness you have with God.

I've never once been bitter or resentful with God, and I've never asked "why?", because I knew God, and I've always put my trust in Him. This time was no different. When I prayed that night, I knew He was listening and He was right there. He heard every word and every thought, and He knew that I was not forsaking Him even at this desperate time. He knew that I loved Him unconditionally, and that my faith would always lie in Him.

It was from then on that my relationship with Him became even stronger than ever before. I feel His comfort and strength everyday. He's given us Hailey, an absolute blessing, who has taught us things we would have never known without her. Through her, He has opened us up to understanding non-worldly things like faith, life, love and hope, things that mean more than the world to us.

I don't want to come off selfish in sharing how much Hailey's condition has changed my life for the better, because I wish everyday that Hailey wasn't sick. I wish that she had a chance at a long and happy life. We had so many hopes and dreams for Hailey, and the time we would have to spend with her and Ryan. But that was our plan, not God's. I will never stop believing that God has a plan and a purpose for each of us, including Hailey. Some of us may not always understand our plan and purpose, but I understand Hailey's, and I thank God she is part of His plan for us. I also know that when it is time for her to go, she will be in a place far greater than what we had planned for her.

"Guide me in your truth and teach me, O Lord, for you are God my Savior and my HOPE is in you all day long." - Psalm 25:5

Hailey's Story...Her Life (Part 3)

2009-03-02T19:57:00.004-06:00

I thank God for day three!

I started day three more rested and more focused. I still had more questions that needed answers, so I spent the majority of the day in front of the computer. I continued to research Hailey's condition - no cure. There is no known cause of trisomy 13 or HPE, but really knowing the cause wouldn't change anything at this point. I also researched the option on the table, never really knowing what to look for. However, everything I found made my heart heavy and made the pit of my stomach fall even deeper. It was clear that this just was not an option for me.

The rest of the day was very quiet as scattered thoughts and facts seemed to piece together. The reality of Hailey's condition was becoming a clearer picture, and I was finally able to see what I was looking at. First, Hailey had trisomy 13 and alobar holoprosencephaly. Second, this happened at day one, and there was nothing we had done to cause it. It was a random, rare miscalculation of her chromosomes. Finally, Hailey was ultimately going to die. Now what?

That night, our lives were changed forever.

At 6:00 p.m., Dr. Martin called to tell us the amnio test came back positive with trisomy 13. There was no need to have us come in to get tested, there was no need to worry about Ryan, and there was no need to worry about future pregnancies - which was not something I had even thought about. I explained to her how I felt about the clinics, that it simply was not an option. I remember reading that some hospitals assisted with terminal children and asked what they did. She explained the procedures and technicalities of it all, but it was still all the same.

Then she told me exactly what I needed to hear, "Rachelle, your other option is to continue with the pregnancy." That was it! That is what I wanted! Was I just waiting for someone to remind me of my other option? It's like the intense amount of devastation and grief we felt on that first day completely wiped out the fact we even had another option. I can't even begin to explain the relief I felt. The slate was wiped clean, and we were going to start celebrating every day of Hailey's life we had left. God had answered my prayer and we had made the right decision. The right decision for us and for Hailey. She is alive, and as her parents, we will continue to love and nurture her until God decides it's time for her to go home.

But what about when people offer their congratulations, what about setting ourselves up for more heartache later, what about passing the girls clothes or the unfinished nursery, and what about watching our daughter die. Here's my answer: Thank you for the 'congratulations' and 'well wishes'; we are excited about having a baby. Our heartache will be the same, because we are already as attached as we can get to our little girl. Every time I pass the girls clothes in the store I will be reminded that I have a daughter. Even if the nursery goes back to having a spare bed in it, it will always be Hailey's room. And what more could I ask for then to have my child peacefully die in my arms, feeling my warmth, and listening to me tell her over and over how much I love her.

We know, without a doubt, the joy that will overcome us when we lay eyes on our beautiful little girl. Whether God decides for it to be now or later, I will be blessed knowing it was God's decision and not that of our own.

God has given each of us a place and a purpose in this world, and Hailey's was made clear three days after her story here began. After three days she open our eyes to a world we had never known before. A world filled with the amazing power of faith, life and love. Three days, and our journey with Hailey had only just begun. That journey is of Hailey's Hope and one that is worth sharing with you now.

God Bless!

Rachelle

Hailey's Story...The Option (Part 2)

2009-03-01T00:54:00.015-06:00

Some of you may, or may not know (I most certainly didn't), that mothers in this position are given two options: try to carry the baby to term, or interrupt/terminate the pregnancy.

I'm going to try and explain now the intense mix of feelings, emotions, and thoughts that flooded our minds and our hearts. I'm just going to be honest, because believe it or not, there are parents all over the world that receive the same devastating news we did, and it's extremely difficult to fully describe the depth of emotion involved when weighing options you never expect to face...

The only option that stood out to us was interrupt the pregnancy (I don't like using the world terminate). The day had been too much for our minds to handle. We wanted the nightmare to be over. We wanted all the hurt, the pain and the grief to be taken away, and the sooner the better. The fact was we were going to loose our child. Could I go on pretending everything was OK? Could I bear a stranger telling me, "Congratulations! When are you due?" Could I allow myself, Tim and Ryan to get more and more attached to this baby when we would never bring her home? Could I pass the girls clothing section without crying? Could I ever walk down the hallway without looking in at the unfinished nursery? Could I endure all these things, and in the end watch my baby girl die in my arms? No. No we could not do that. Our minds were so thick with hurt, pain and fear that all we wanted to do was make it go away, and end this day that brought chaos and devastation to our lives. We were so selfish in wanting to end our our hurt and our pain, that we didn't fully realize it would mean ending life itself; our little girl's life.

This end to day one, is one that I deeply regret when I look back on it now. I'm embarrassed that our selfish wants and needs to end the pain got us to even consider something that Tim and I would never have even fathomed doing. However, now I understand how emotionally vulnerable parents become when placed in a situation like this. A situation that I never knew parents could face, and one that I was completely and totally unprepared for.

But I think it's important to share this, because women and parents are forced to face the same choices we were. We know what they are feeling. We know the intense amount pain and loss you experience when something you wanted and loved so much is going to be taken away. Just know that you are not alone. I pray that anyone who is facing what we are, will turn to someone who has or is taking this journey with you, will turn to family and friends for love and support, and most importantly turn to God. We absolutely couldn't imagine where we would be without Him.

Day Two

Day two is fairly easy to sum up...we were numb. All I thought about was yesterday; every word that was spoken, every decision that was made, and every thought that ran through my mind. That was it. But that evening I decided I needed answers. I needed to know more about trisomy 13. I needed to know more about holoprosencephaly. I needed to know more about this option we were given. I realized now was the time to do it while my mind was numb - and what a sweet release that was. I googled until my eyes and my head hurt. There was still so much more to know and so many questions unanswered, but my thirst had subsided for a bit.

That's when I prayed.

A lot of my research consisted of clinics we were referred to, and never was there a good thought that crossed my mind. I just could not picture myself walking through those doors and walking back out, end of story. So I prayed. The night before I had cried myself to sleep, but now I think I had so little tears left to cry that I was able to give God my whole heart. I talked to Him as if He was sitting right there next to me, and I believe He was. The conversation was intimate and honest. I told Him how sad I was and how lost and confused I was. I needed Him now more than ever before, and I desperately needed His guidance to make the right decision. My guard was down. My whole being, I placed in His hands. Words are not enough to explain what that felt like, but it was a great feeling of release and comfort.

Soon I was sound asleep. No racing thoughts. No unsettling dreams. Only sleep...

Hailey's Story...Breaking the News (Part 1)

2009-02-28T20:01:00.016-06:00

This past week has been a busy week, but now that it's settled down a bit I'd like to go back and share with you those first days when we where told of Hailey's fatal condition. This story may sound familiar to those families who received the same news we did, "your child is going to die".

Hailey's story began on Tuesday, February 17, 2009 at 9:15 a.m.

It was on that morning my routine 20 week ultrasound was scheduled. Tim had decided not to go because he didn't want to 'accidentally' find out what we were having. I was OK with that; I was also OK with 'accidentally' finding out. I had been hoping for a little girl for several reasons. I longed to finally shop for some seriously cute clothes. I pictured Ryan being a protective big brother of his little sister. And after my dad passed away, I wanted Tim to experience the wonderful bond between father and daughter. But when it came down to it, boy or girl, I didn't care. I simply wanted our baby to be healthy.

Now when I look back at that day, I remember being very nervous sitting there in the waiting room. I thought it was just because I was so excited, but now I think it had more to do with an unexplainable uncertainty.

When I got back there, I was ready, but the question of my baby's health never entered my mind. I was just ready to see her (I referred to Hailey as 'her' from day one, and Tim was quick to correct me). My first look was of her entire body, head to toe. She looked perfect! I had no idea she was actually 3 weeks behind in size. She was breach and the next thing I saw was the top of her head. That's when I knew something was wrong. Even for an untrained eye, you could make out the outline of her skull and inside was a much smaller white circle with black holes. I immediately asked, "What is that?" and the technician's response was, "Honey the doctor's going to have to talk to you." My heart broke. Silent tears streamed down my face and all I wanted to do was get up and call Tim. I endured the next 3 minutes on that table. Finally, I couldn't wait any longer and asked, "Is it bad?". She told me she was going to have to take some pictures, but she couldn't tell me anything for sure because she could tell me one thing and the doctor could say it's something different. Well I knew enough to know that when something went wrong in that room, no one was to say anything until the doctor came in. I also knew that no parent received that many ultrasound pictures for their baby book.

When we were finished, she took me right into an exam room. I called Tim immediately. He was with a customer, but I said it was an emergency and I had to speak with him. When he got on the phone, I was crying and told him he had to come right now and that something was very wrong. When Tim got there, Dr. Dodson came in and said all the numbers looked good and the previous blood tests came back normal. Then I asked, "What's wrong?" She calmly sat down with the ultrasound pictures and said, "I think this baby has a big problem." From there the world stood still, time didn't exist, my mind shut down... and I cried. I heard bits and pieces about her brain, her face, her heart. Tim was by my side and I cried. I couldn't register anything. She said how very sorry she was - she knew the year I had with my dad. I remember my first thought sitting there was that 3 months ago I could have saved my dad's life if I had only given him my kidney. But we had gotten pregnant and now that life was possibly gone as well (we didn't know Hailey's prognosis at that point). I can't even begin to describe the guilt I felt. I couldn't save my dad's life, and now I had ruined my child's.

Dr. Dodson was going to refer us to a specialist in Columbia, and all I had to say was that we had to go today. I could not wait for whatever it was I needed to know. From what I've read from other families, we were lucky to have gotten in the same day. I couldn't imagine parents that had to endure a whole week of uncertainty for an appointment, we only waited 2 hours.

On the way to Columbia, my mind was scrambled. I didn't know what to think, what to expect, what to do. I didn't know anything except that something was wrong with my baby!

Once again we were in that room. The technician looked in our file and said "So it looks like your having a girl?" No, we didn't, but a part of me forgot why we were there for a second. She told us that she was going to take a good look from top to bottom and that she would explain everything we were looking at. For about 45 minutes we watched our little girl bend her legs, put her feet under her bottom, grab her knees, stretch her arms over her head. It was the most incredible 45 minutes of my life. Then we saw her head, and inside was a smaller matter that I knew was her brain. Nothing was said about her face, but this technology showed a clearer image that was hard to explain.

When the technician was finished, we waited for the doctor. Dr. Martin came in and introduced herself. She was incredibly nice and we immediately knew we were in good hands. She asked us a couple of questions, and for another 15 minutes she took a closer look. She was quiet as she took measurements and looked at things foreign to us. She promised that she would explain everything when she was finished. We listened to Hailey's heartbeat. It was beating strong at 183. When she was finished, and the pictures were printed, we were taken into a consult room. It was there that Tim and I started stuttering our wondering thoughts...

Tim: "She spent a lot of time looking at her heart."
Rachelle: "Yes, she did."
Tim: "How could something be wrong with her brain, when she moved around so much?"
Rachelle: "I have no idea."

My mind was busy scanning: I painted our room last weekend, I do too much lifting, I ate a tuna sandwich for lunch last week, I don't know when to stop and relax, I know I've breathed in different house cleaners...the list went on and on. As soon as she came in, I asked them all. She told me to stop, that this was nothing I did. I didn't understand how it could be anything else.

She asked what we knew so far, and when we told her she said, "Yes, this baby has several serious problems." That didn't make any sense to me either, because we had just spent an hour enjoying her move and stretch. We didn't see anything to make us think she had "several" things wrong. She was a perfect, normal little girl. She told us that the baby has holoprosencephaly (HPE). There are different levels of severity, and our baby had alobar HPE (the most severe). She showed us the facial profile of the baby and explained what the baby should have - but she didn't. The list lengthened to include discussion of her heart, her kidneys, her body size, her feet, etc. I was floored. I was taking it all in, but I didn't know what to make of it. She talked to us about chromosomes, and specifically the 13th chromosome. She believed Hailey had an extra one that caused a chain reaction of abnormalities in her development. I was quiet, but the tears were burning my face.

When all was said, Tim asked, "So what now? What can we do when she's born?" I interrupted and said, "Honey, she won't make it. She has too much wrong with her." Then the tears spilled over even more. I had said it. I had said it before I had to hear it. Dr. Martin confirmed my fear and said, "Unfortunately, there's nothing we can do." If she was able to live to term, and if she survived through the birth, she would only have moments to live. Open heart surgery, IVs, life support wouldn't do any good. The best thing we could give her was love and comfort. Something she said though struck me, 'if she was able to live to term.' You mean I could loose my baby before I even had a chance to see her or hold her? Now I was afraid. I was afraid to loose my baby girl, and I was afraid I would loose her before I even had a chance to meet her. It was too much. This day had been too much. I woke up today with optimism and excitement, and in a couple of hours my world was turned upside down by confusion and an extreme form of sadness that I had never in my life felt before. My heart, my soul, my mind was in continuous torment...

Planning Day...

2009-02-26T23:32:00.004-06:00

I almost forgot to mention how smooth yesterday went. It was a gorgeous day outside (unlike the rainy day we had today) and just as I expected, God gave me that calm sense of peace to get me through the day. Quite honestly I felt like He did all the work. I stopped by our church, we are blessed members of Capital City Christian Church, and had a nice discussion with Troy about the memorial service that is sure to be reflective of Hailey's life. I stopped by Rivercity florist and picked out flowers almost as beautiful as Hailey is. What I thought were going to be difficult questions for me to ask at the funeral home, contained very simple answers with no strings attached. At the end of the day, I knew that I would have nothing to worry about later, because the day we celebrate Hailey's homecoming in heaven is going to be beautiful and special in every way.

One of the highlights of the day was getting to share my story with Angie at the Jefferson City News Tribune. When I found out that March 13 is National Trisomy 13 Awareness Day, I felt this sudden urge to do something. So I contacted the News Tribune, not really knowing what to expect since I'd never done anything like that before, and was humbled to find Angie very interested in learning more about Hailey. Yesterday, I was able to sit down with her and talk about Trisomy 13 and Hailey's condition. I was also delighted to talk about what a miracle Hailey is, and the amazing journey God is leading us on. I left there feeling lighter than I have in a while, knowing that Hailey's beautiful story was in good hands and that we were possibly going to reach other families sharing a similar story just made me smile - and I'm still smiling about it! The article is expected to run in next Sunday's paper (March 8), and will be posted on here as well. * As a side note to show that God can do all things great and small - When I got to the News Tribune I found front row parking, and when I got out, I found that the parking meter had an hour and sixteen minutes left! Really, how often does that happen? I'm telling you, I didn't do anything yesterday except show up, and God took care of the rest.

Pictures! Today we took pictures of our family at Amy Knollmeyer's studio, and it was incredible. It meant so much for us to capture these happy moments as a family. We just had a great time being together and laughing, and displaying the love we have for Ryan and Hailey. I'm more convinced now than ever that Ryan should definitely consider a career in modeling. He had no problem whatsoever doing his thing (whether it was Amy's thing or his own), and of course radiating his natural handsomeness for the camera. If only I had that kind of self-confidence! It was really great, and I can't wait to share the photos with you when we get them. I know this site is lacking pictures, but I was planning to wait until we got with Amy since I need a lot of help to be photogenic.

God Bless!

Thank You!

2009-02-26T22:15:00.010-06:00

A simple "thank you" doesn't even begin to convey our deepest appreciation for the overwhelming support we have received from family, friends, and those we've only since met through Hailey. We are truly blessed to have so many praying and thinking about our family, because we can feel it. We feel it as we grow stronger day by day, and I feel it every time Ms. Hailey moves and kicks. The power of prayer is truly amazing, and I want everyone to know that your prayers matter very much to us, and they are being heard.

We also appreciate everyone forwarding Hailey's Hope to share with others. For those of you that know us personally, we are a pretty conservative family. I never would have thought we would be sharing such a personal life changing journey with the rest of the world, but like I said it has been literally life changing. With the strength and courage God has given us, a door was open for us to share our hearts and our minds so that others may come to recognize the amazing gifts God has blessed us with - even though we may not see it right away. We really didn't even second guess ourselves, we just did it! We aren't nervous or scared, but rather excited and committed to share the moments and memories we have with Hailey. She is an inspiration and we would be selfish not to pass that inspiration on.

We also want to thank our parents, both on earth and in heaven, for the unconditional love and support they have showered us with. I know that they too will suffer a great loss, but just know that we love you all very, very much, and we pray for your comfort through this as well.

I also want to send a special thank you to Dr. Dodson, my OB/GYN at St. Mary's Women's Clinic, and Dr. Martin, my maternal-fetal specialist at the Center for Maternal-Fetal Care in Columbia, who had the tough job of 'breaking the news' to us about Hailey's condition. You both are amazing women, and we greatly appreciate the extra care and consideration you have given us. I feel confident that Hailey and I have, and will receive the absolute best care we can get. I also want to thank my employers and the people I work with for their unlimited support and understanding. You all have seen me through a lot in the past year, and I am so greatful to each of you. It's something to think about how God puts people in your life. It's like you meet them at exactly the right time, and you can't imagine where you would be if you hadn't.

THANK YOU!

Making plans.

2009-02-25T00:35:00.004-06:00

As if it's not hard enough to plan a funeral, today I will be planning one for my unborn child who is still so full of life. It just doesn't seem possible does it? There's the church, the florist, the funeral home, but despite all that I feel a calm sense of peace. It's like God has shielded me from the confusion, devastation, hurt, grief, sorrow and pain. I feel like He has held my hand this past week. He has never left my side, and my faith tells me that He's not going to. I know He will be with me today, just like He will be with me the day He takes our little girl home.

On a lighter note, I am excited (about as excited as one can be I guess) to also meet with photographer, Amy Knollmeyer, who will be taking pictures of our family both before and after Hailey is born. During my heartache, I was happily surprised to stumble across Now I Lay Me Down to Sleep (see side panel for information and video). This organization consists of volunteer photographers around the country, Amy being one of them, that help parents capture the limited moments they have with their child on film, and I feel so relieved to know that the memoires we have with Hailey will never be forgotten. "They allow families to honor and cherish their babies, and share the spirits of their lives."

Looks like we have a sunny day in store with a high of 63! Have a good day!

Rachelle

Celebrate today! Tomorrow will worry about itself.

2009-02-24T21:49:00.007-06:00

Celebrate today! I wanted to start by sharing this important fact...Hailey is alive! She kicks, she stretches, she gives me a nudge to let me know she is strong, and that she is very much alive! At the end of the day, I thank God for the gift of life that is still inside me. I thank Him for the precious time He has granted me to spend loving my family. He is truly amazing!

I will admit that sometimes after I have counted my blessings, I cry. It's hard not to, because I begin to think about what tomorrow might bring. Will it be Hailey's last? I know it's coming. Then my mind wonders to Ryan and Tim. The truth is, none of us know. We don't know when, where, or how. When my dad died in his sleep 3 months ago, I was reminded about something our preacher once said, "Imagine if you knew when you were going to die." That's an interesting thought to ponder. There's an old saying that's been rubbed raw, but I would imagine it applies: "Live today like it's your last."

I've heard it countless times, but it never resonated with me until a week ago when I began living hour by hour with Hailey - knowing the time was near, but not knowing exactly when. It's devastating, knowing your unborn child will die, and knowing there's nothing you can do about it. But that's the truth of life. So am I to live each hour grieving for the loss that has yet to be, or do I live each hour celebrating Hailey's life? I have decided that with the strength and courage God has given me, I am going to touch every kick, smile at every stretch, and count every nudge my daughter blesses me with. And I will be reminded of how precious life is, how precious Hailey is, and how God blesses us in ways we could never imagine! A blessing in disguise, so to speak.

Tomorrow will worry about itself. I am fully aware that one day, whether it's tomorrow, next week, or 3 months from now, my daughter's heart will stop beating. It is on that day, that we will grieve and morn our loss...but today her heart is beating! So why worry about what tomorrow may or may not bring, when we could and should be celebrating the life and joy God has given us today!

I know everyone feels this is a devastating and sad thing to happen to us given the road of heartache we've been on - and for the first 3 days I felt the same way. Yes, I expected a healthy baby. Yes, I expected to start the New Year without pain and sadness. Yes, I expected a lot of things, but life is full of the unexpected. Hailey's health was unexpected, but I guarantee that the unexpected has blessed us more than anything we ever expected.

But now I am tired of saying 'good-bye' before I've had a chance to say 'hello'. Today Hailey lives, and her life has proven to hold such meaning and purpose in these 20 weeks and counting. She has changed our hearts, our minds, and our lives in ways that I never knew was possible. She has made us feel and experience emotions that we never fully understood. She has been on the hearts and minds of so many this last week, and I just don't know how many babies can accomplish what others (including me) strive for in a lifetime. Why wouldn't I want to rejoice in the life of such a special little girl?

We are so proud to be Ryan and Hailey's parents. We couldn't be any more proud, or love our children any more than we already do. But Hailey has made it possible for us to appreciate and celebrate our children more, when she reminded us that we just don't know when, where, or how.

So Celebrate today and be happy! Tomorrow will worry about itself - and when tomorrow comes...CELEBRATE TODAY!

Hailey's Hope

2009-02-24T13:27:00.009-06:00

Welcome to Hailey's Hope! We decided to create this blog to keep our family and friends updated on how we are doing. It is my personal hope that this journey will offer other parents in the community, maybe even the state or possibly the country, the necessary comfort and support needed to cope with the confusing emotions that accompanies the news our family received only a week ago today. Our daughter has impacted us in ways that are impossible to put into words, but we want to share with you our thoughts, our prayers, and the amazing impact Hailey has made on our lives.

We also want to thank all of you, from the bottom of our hearts, for the tremendous amount of love and prayer you have given Hailey, Tim, Ryan and I. I believe it has given all of us strength we never knew we had in us. We count our blessings every day, and they only seem to multiply!

With Love and Sincerity,

Tim, Rachelle, Ryan and Hailey