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.

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...

**********

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...

Thursday, September 3, 2009

Testament of Faith



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

Wednesday, July 29, 2009

A New Road



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...

Sunday, July 12, 2009

42 Minutes

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."

Thursday, July 2, 2009

God's Gift...Our Angel Baby

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.

Wednesday, July 1, 2009

Grateful Hearts

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
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


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