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, April 28, 2009

Hailey's Hope

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.

Thursday, April 23, 2009

Hailey's Hope Coming this Sunday!

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.

Tuesday, April 21, 2009

Hailey in 3D

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.

Sunday, April 19, 2009

A Shower of Faith, Hope & Love

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!

Wednesday, April 15, 2009

Preparing for the Worst, Hoping for the Best

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!

Sunday, April 12, 2009

Family Updates

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.

Monday, April 6, 2009

My Other Half

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! :)

Saturday, April 4, 2009

Jeremiah's Song

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
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