Thursday, May 12, 2011

our story...

we had a new word thrown into our vocabulary yesterday. one we wish we never learned.

anencephaly.

that one word will forever change our lives.

what should have been a joyous day (we hit the 20 week pregnancy mark and had an ultrasound scheduled) turned into one i wish we never had to live.

the morning was rough. life with a toddler, spilled yogurt, rushing out the door, slips and falls, impatience, running late, korea traffic, traffic and more traffic.

we finally arrived only a few minutes late to the hospital down at yongsan, in seoul. we had to make the couple hour drive because our clinic does not perform ultrasounds. checked in, got eliza out of her jammies and ready and anxious to see our precious newbean on the screen. james' first glimpse.

we continue the battle of "we are NOT finding out!" and "well I can find out, you don't have to!"

the cool gel was spread and we got to see our newbean. moving around like crazy, arms waving at the face, thumbsucking, kicking...

measurements were taken. and taken. and taken.

heartbeat was confirmed at 150.

newbean to us, looked perfect.

then the tech left to show the doc some pics. we talked some more about finding out/not finding out. she returned. took some more pics and measurements. left and brought the doctor in. lights went off and he took over. studied the screen. eyebrows shifted. eyes focused.

then he introduced us to that word.

i don't remember exactly what he said, but he explained that the head and brain hadn't fully formed. something was missing. appointments with doctors would need to be made. talks would be had.

i know i asked "but, it's alive?!" yes. it is.

he left and i asked the tech if she could tell us the sex. at this point i wasn't sure we would ever have another glimpse of our newbean. that is one emptiness i struggle with our first baby. i wish i knew what he/she was.

"it looks like, it's a girl."

another little girl. our little girl. growing.

i asked if we could have a picture. i wasn't sure i would want it, but knew i couldn't get that moment back.

many many tears were shed, hugs were given, prayers said over us and we were on our way. the long drive with a cranky toddler who hadn't napped all the way home.

then the real struggle began. we read about what the means. is there any hope? some of the first stats we read were 75% of babies with anecephaly are stillborn. the other 25% live only for a few minutes, hours, maybe days.

we could have surgery now and terminate the pregnancy.

it seemed like the less painful option for us. i had thoughts of "do it right now, before i feel her move. i can't feel her move."

that turned to guilt. i know she is alive. we saw her. she is our baby. God blessed us with her. He trusts us to protect her. we cannot end a life. we are her parents. we have to hold onto her until she's ready to walk with Jesus.

back and forth back and forth. all day, all night. thoughts flew all over the place.

how will this effect eliza? how will i make it another 20ish weeks carrying a baby i know we don't get to keep. i'm not strong enough for this. i can't.

until i woke up for good this morning. many talks, many prayers said through our night by family back home, and i felt a sense of peace.

she is ours. we have to protect her. we GET this time with her. cherish it. cherish her. our newbean.

i know it's going to be hard. i know people won't understand. i know we have a lot of daily struggles to face. satan will creep in. put thoughts in our heads. tell us evil things to try and kick us down.

our faith will get us through. it has to.

it's all we have sometimes, but it's all we need.

(when i write it's just all one continuous thought. i don't reread, i don't rewrite. so if the words are scattered, that's how i'm thinking. i needed to get this out.)

and thank you to all of you who prayed, talked, sent love already. we need it. we can't do this alone. we know the distance was already hard. this is a whole new level. we hold you close and will need to lean on you at times. i am just so thankful that james, eliza and i are together. we will be stronger as a family.

here is a pic of our precious newbean. our little girl.
disclaimer of sorts - know that there are a lot of hard pics to see online. i already wish i could un-see some of them. but everyone of those babies is someone's pride and joy. just proceed with caution if you do read up about it. know that it's very rare. if you are pregnant, don't let this story frighten you. enjoy your pregnancy. hold it close. count your blessings. we are.

yesterday i couldn't see anything in this pic. today, now that i am aware. we can see. we know what it "should" look like. we see something missing. but we also see our beautiful bean. sucking her thumb like her big sister used to. :)

38 comments:

Jessica said...

You are the strongest person I know. Without question. The four of you are in my thoughts. I love you.

Crystal said...

Oh how I love you. always.

Anonymous said...

God will carry you through this. Thank you for sharing your story it will help you & us til you hold your little girl. we love you and are praying constantly. aunt steph <><

Anonymous said...

May God hold all of you in the palm of his hand.
Aunt Becky

Erin said...

I am glad that you shared her photo. She IS beautiful. I am praying for your strength through this journey. I cannot fathom how difficult it will be, nor will I pretend to understand... but I am praying that you, James, and Eliza can shoulder the strength it will take to cherish, love, and honor this beautiful baby girl.

Anonymous said...

God's grace and peace to you.

"For you created my inmost being; you knit me together in my mother's womb...your eyes saw my unformed body...All the days ordained for me were written in your book before one of them came to be." (Psalm 139:13ff)

a brother and friend in Jesus

pinkflipflops said...

((((((()))))) will be keeping you and your little girl in my thoughts. good luck.

Beth at I Should Be Folding Laundry said...

I am so sorry this journey has taken a different path for you. I wish I had words to reassure and comfort you. Just know that you and your entire family are in my prayers.

My very good friend had a daughter with anencephaly. They chose the same path you have chosen, to continue with the pregnancy. They have a blog - I encourage you to read about their sweet daughter, Lydia. http://www.focosi.net/2007/12/lydia-grace-focosi.html.

Sending you love and peace and strength.

Babs said...

Holding you and your family so close in my heart right now.

sarah said...

praying fiercely for you- and i can only echo what has been said- you are strong. i see the things you've fought through, grieved, celebrated, and lived- you're inspiring, and i wish i could give you a huge hug right now. thank you for sharing your life so openly with the people who love you and your family dearly. i pray the Lord sustains you in your every need and that your precious little girl is held tightly in His hand through everything. love you. so much.

Sarah said...

Love and peace be with you, your precious family and that brand new baby.

Megan said...

She's absolutely beautiful. I cannot begin to fathom what an emotional roller coaster you are experiencing right now. Please just know that there are people out here who are thinking and praying and crying with you.

J&A Vandercar said...

shel, she's beautiful. we're so thankful for this new niece. we pray for her daily, for your hole family. love!

Big Papa said...

I can see Miss NewBean laying comfortably in your tummy and thinking "Thank you Jesus for giving me a Mommy and Daddy that loves me no matter what"
God's Peace be with you.
Love Dad/Papa

Kate at Big City Belly said...

You are brave and you have lot of people thinking and praying for you.

Bailey said...

I am so sorry your family has to go through this. Your little girl is so lucky to have such amazing parents who will love and care for her no matter what. We will be praying for you.

Dee Wilcox said...

I was rocking my daughter to sleep and reading Twitter when I saw Erin's post and clicked through to read your blog. My daughter fell asleep while I was reading, but I couldn't put her down. I couldn't stop crying and praying for you.

I cannot imagine how you must be feeling, and I have no idea what to say that might bring you comfort. My heart aches for you, and all I can pray is that God would be with you in this moment, over the next twenty weeks of this journey, and that the moments that you have with your daughter between now and then will be precious and full of joy in the midst of the sadness. I pray that you have time with her after the birth, and that God's presence would be even sweeter in your midst in those moments.

I echo everyone else here - you are brave and strong, and I will be lifting all four of you up in prayer.

Lyndsay said...

Sending love and prayers your way.

Keely said...

I don't know you, but I couldn't not comment after Erin shared your story.

My cousin's first baby, also a little girl, had anencephaly, and she was a joy and a blessing every day that she was with us. The doctors "gave" her a few weeks, and she lived 18 months and was beautiful and amazing. I was just a child when she was born, but I still remember how special she was to her family.

May your burdens be light this next 20 weeks so that you can just experience the joy of knowing your sweet girl.

libby @ ninesandquines said...

erin mentioned you on twitter...want to send you hugs, prayers, everything i can across the miles to let you know that you and your family are in thoughts and prayers...[[[hugs]]]

Christina said...

You are amazing. Your family will be in our thoughts.

Crooked Eyebrow said...

Sending so much love and prayers for you and your entire family

Melissa said...

You are so strong. I lost my son at 17 weeks and I wish I had asked for a picture as I have nothing left by the memory seared onto my brain.

Cherish what time you have and I will pray that your family will be surrounded my his love and peace.

Emily Cook said...

God who loves the littlest ones, those who the world sees as no account, loves her.

May He hold you up as you carry out this painful beautiful act of love.

Mental P Mama said...

I am a "friend" of Jojo's. And I am doing nothing but sending you light and love and prayers. You are an inspiration to me. Much love, Lauren

Kelly Pifer said...

What I see in your ultrasound is a smiling little one. Yes, I can see what is missing, but it certainly isn't love or hope. Not hope for a long life together, but for one cherished now and always. You are so strong and the best guardian angel your newbean could have hoped to have been blessed with.

Sarah said...

I arrived at your blog via a link someone had posted on babycenter.com. I have friend who went through something similar. She has an inspiring story of enjoying several days with her daughter. Check out her blog at www.ouryoungfam.com
May God be with you and your family.

Yulonda Desmuke said...

God has a plan for your baby, weather if she's here with you or with him! She's truley a precious gift from God, a Jewl! You have encouraged me with your faith, and yes,all you need is the size if a mustard seed! Thank You for sharing this beautiful inspiring story. You both are in my prayers!

Justin and Johanna said...

Your open and honest response touches my heart in an amazing way. While I know there will be many struggles in the coming months, you are an encouragement to many through your strength. I am thankful for every heartbeat you hear and kick that you feel. You are continually in our thoughts and prayers. I thank God for you, James, Eliza, and newbean and the amazing faith that you have.

Georgia Girls said...

What a heartbreaking situation and an even more difficult decision. Feeling peace is your answer -- may you rely on that to strengthen you in the coming months.
(from Nicolasa's blog)

Christina said...

I'm so sorry to hear this, and I cant imagine what your going through. You will be in my thoughts! Hugs to you all.

Trish said...

I'm so heartbroken for you.
Thinking of you all.

Amy said...

I heard through FB, but wanted to stop in and say that though I've only ever met you once or twice here at Casey, if you ever need anything, please let me know. I would like to be one of your encouragers through this hard time. I can't even imagine the depth of pain your family is feeling right now.

Nancy said...

My daughter has gone through two similar pregnancies that ended with the loss of my grandson and my granddaughter. Cherish these moments God has given you to "parent" little Delia. They may be few, but all the more precious. Read to her, sing to her, love her. You will be constantly in my prayers as you walk this difficult path. God is faithful. Delia is in the best possible hands.....yours and God's.

Keri Kitchen said...

First of all, what a beautiful ultrasound picture of your sweet girl! Anencephaly is a word I wish none of us knew existed... but I'm thankful for you that you know where to turn through such an experience. Our journey with Anencephaly began last december when we learned the word and it has been the most beautifully painful experiences we've ever had. I am so amazed at everything God has given us through our little Carys and her twin brother Paxton. He truly has plans to prosper us and not to harm us, plans for hope and a future (jeremiah 29:11)

Praying you feel His continued presence throughout your pregnancy and beyond!

(http://afterrainn.blogspot.com)

Chrissy said...

Hi, my name is Chrissy. Thank you for sharing your story. I lost one of my twin sons last February to anencephaly. It has been such a difficult journey, but so worth every minute of it. God will absolutly carry you through it. You are an amazing mom. You and your family are in my prayers.
With love and hope,
Chrissy
Caydenryan.blogspot.com

Olivia's Mommy said...

Thank you for sharing your story of strength! I can not imagine the pain you are feeling at this hard time! I will keep you and your family in my prayers! I really enjoyed reading your story. Your word flow and made me very emotional. I think it would make a fantastic book. God bless you, your husband and your babies!

turtleluvskissesnhugs said...

Our family is also experiencing a very rough time and when I heard about your story on FB and read your blog I wanted to reach out to you. I know you've heard a lot that you are strong and even that things happen for a reason.. I know 1st hand those positive comments can be some of the most painful to read/hear. And although you do not understand why this is happening and it's unfair and cruel to all of you including that special little girl inside you.. hang in there and find comfort in the little things, minute by minute. Remember to breathe and take it slow. We are all here for you, you are never alone.

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