Forty-two minutes...a lifetime of love...

God's Gift...Our Angel Baby

Twenty weeks into life, Hailey was diagnosed with alobar holoprosencephaly (HPE). Further testing showed that she had full Trisomy 13, also called Patau syndrome. Trisomy 13 affects about 1 in 16,000 babies. HPE affects about 1 in 10,000 babies and of those only 3% survive to delivery. With the severity of Hailey's condition, she is given little chance of surviving to term. But our family was dedicated to giving her that chance, no matter how small, and she gave us every hope for the future.

On June 12, 2009, our angel baby was born and delivered into our loving arms. There is where she spent her life and gave us the best 42 minutes of ours. Our journey led us to this moment in time, the moment we met our little girl face to face, and the precious time we shared with her. Now Hailey is safe in the hands of God until we meet again.


God has blessed our family in ways we didn't understand at first. But through our faith and trust in Him, we came to realize just how much purpose Hailey's life serves on this earth. Hailey has unlocked the deeper meaning of faith, hope and love, and has forever changed the lives of many. We are blessed to be part of such an incredible life and incredible journey.

Psalm 139:13-16

For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

Monday, April 19, 2010

From Hailey, HOPE



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."

Thursday, February 4, 2010

Thinking of Hailey


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


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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...

Tuesday, December 22, 2009

A Lifetime Wish



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

Thursday, December 17, 2009

My First Christmas In Heaven

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

Saturday, December 12, 2009

Tuesday, October 20, 2009

We Live. We Grieve. We Remember.



"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

Saturday, September 19, 2009

Hailey's Day

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...

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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...
But Jesus said, "Let the little ones come to me, and do not keep them away; for such is the kingdom of heaven." - Matthew 19:14