Yesterday I was called to run back to the hospital and meet with a doctor. He had bad news.
He told us that Zoe has trisomy 18.
30% of children with trisomy 18 will die in their first month.
70% die by their sixth month.
Those who live on don't do well. Some will make it to their teens with severe neurological disease.
I'm not going to lie, it's 2:50 AM and it's the first time I've had a chance to get to a computer since all of everything. I didn't read the link up there, and I don't blame you for not wanting to. This is grim stuff.
Grim stuff when you meet with the head of the NICU to discuss a Do Not Resuscitate for your 3-day-old girl. Grim when they tell you their recommendations for a DNR.
I went to tell Zoe's biggest brother and sisters about Zoe. And as they wept, I asked them what they believe. What do you believe? Do you believe that Jesus is the resurrection and the life? That this baby is His? That she's going home? If you believe, we can deal with the agony of letting go. This world, take it from me, is a brawl with sin and the devil. He gets some rounds. But thanks to God that the fight is won through Jesus.
It was the devil who invented the word "corny." It is his hope we avoid saying simple truths because we're so scared of being "corny." But right now, it's the simple truths that work. There are no complex answers.
My heart breaks for those whose hearts are broken: Jen, who struggles to lift her head, but is determined to give her daughter all the love she can in however many days she has left; my 3 big kids who have surpassed any measure of bravery and love and courage and faith. Little Ethan who keeps asking when he's going to get to meet Zoe.
You all out there have surpassed any measure of nobility and friendship. I am so grateful for your thoughts and prayers.
So Jenny is holding her girl as this doc is breaking the news, and he tells us he's sorry and he leaves. And for some reason, the song I used to sing for other people is in my head, so i sang it through tears. Because i'm the other people.
This is not at all how
We thought it was supposed to be
We had so many plans for you
We had so many dreams
And now you've gone away
And left us with the memories of your smile
And nothing we can say
And nothing we can do
Can take away the pain
The pain of losing you, but ...
We can cry with hope
We can say goodbye with hope
'Cause we know our goodbye is not the end, oh no
And we can grieve with hope
'Cause we believe with hope
(There's a place by God's grace)
There's a place where we'll see your face again
We'll see your face again
And never have I known
Anything so hard to understand
And never have I questioned more
The wisdom of God's plan
But through the cloud of tears
I see the Father's smile and say well done
And I imagine you
Where you wanted most to be
Seeing all your dreams come true
'Cause now you're home
And now you're free, and ...
We have this hope as an anchor
'Cause we believe that everything
God promised us is true, so ...
So we can cry with hope
And say goodbye with hope
We wait with hope
And we ache with hope
We hold on with hope
We let go with hope
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As we seem to be on the outside looking in, we really are on the inside and fighting the battle alongside you. We are weeping with you (I am crying as I read this blog), our hearts are breaking with yours, but our souls rejoice because Jesus, our Jesus, is Zoe's savior and Father. God's gift to you and Jen is preciously short, but invariably sweeter than any other relationship you will know. He has chosen you for such a time as this and those of us on the edge of your family circle can see the love He has given to you as you share your faith and HIS hope with your children, knowing Zoe is in HIS hands, yet grieving openly and allowing them to do this as well. Wondering if this is how Mary felt as she knelt at the foot of the cross and watched her son... The agony, the overwhelming heartbreak, yet the joy of knowing the HOPE, all mixed together. Our prayers go deeply for all of you - for Jen as she feels the physical pain of bringing forth a child, the emotions of birthing joy and the waves of grief that are washing over her while she continues to be strong for her other children, for YOU as you steady the hand that holds the family together in Faith, comforts a broken-hearted wife and wraps arms around weeping children. For your children, some who understand the situation and have thoughts and emotions to address with the Lord as they remain at home and support each other, and for the little ones, who don't understand the complexity of the medical world, but know something is terribly difficult and are struggling to understand it all. We are desperate to help in any way we can. Even the little things...
ReplyDelete"How lovely is your dwelling place, O Lord Almighty! My soul yearns, even faints, for the courts of the Lord; my heart and my flesh cry out for the living God. Even the sparrow has found a home, and the swallow a nest for herself where she may have her young - a place near your altar. O Lord Almighty, my King and my God. Blessed are those who dwell in your house; they are ever praising you. Blessed are those whose strength is in you.... Psalm 84: 1-5. Please know we are here to help, but mostly know, we are here PRAYING.
JIM AND GINNY Maziarka
dear God: thank you for Hope.
ReplyDeletea lot of people don't get what "we" mean by "Hope." it's not just "i hope some sports team does well in some sporting event." it's something that lives so deep in us that it hurts, and it's a Hope backed up by the promises of Jehovah God - promises which cannot fail. the faithful anchor indeed.
We are so sorry to hear this. However, we will continue to pray and hope for a miracle (so glad that there is indeed such a hope).
ReplyDeleteWe are here for you all, however you need us.
Grieving and hoping with you,
Ted, Gina and family
Oh, I am so sorry to hear this news. I can't say anything to make things better, except to say that your family is in my heart and prayers right now. We only met on Saturday, but I can tell you all have wonderful strength and love about you! I will talk to you on Friday.
ReplyDeleteLove,
Zoe's nurse Becky
Oh Greg and Jen - the same God who holds the universe in His hand is holding your little one. He is able to do things beyond our imagination, like stop the sun in the sky, or lay the very foundations of the earth. So we pray - we go, hand in hand with His son, Jesus, to His throne and make our requests known to Him. Even if we don't have the words...even if we don't know what to pray. He knows, He loves, He heals, He comforts. But most of all, He saves. Praise God that Zoe is an heir to His kingdom. My heart and prayers are with you all. And somehow, all of this will bring glory to His name, I trust that. I don't exactly know how, but it will.
ReplyDeleteRenee
I've been praying all along, and now I'm praying harder - wasn't sure that was possible. My heart breaks for you. I do not want to give false hope, but a second opinion is always an option. And please check on the support groups for help.
ReplyDeleteStill praying,
Love,
Aunt Linda
Our thoughts and prayers are with you. She is adorable! God be with you Greg, Jen and Family.
ReplyDeleteGod Bless,
Jean and Arlie Doell
Roger and Candy Krohn
Please know that your family is in all of our thoughts and prayers. Miracles do happen. Stay strong and keep your head up.
ReplyDeleteLove,
The Poole family
I stumbled across your blog and have to say it brought me to tears. As a fellow Christian, I am comforted by the fact that God does not make mistakes. He works all things for His glory. My prayer is that He gives you and your family strength during this time. My prayers are with you.
ReplyDeleteOn this very day that you found out about Zoe having Trisomy 18, we laid our Eva Janette, 5 day, 18 hour and 10 minute old daughter to rest due to Trisomy 18.
ReplyDeleteVisit our blog for more...
www.evajanette.blogspot.com
Zoe and Eva both mean life, living one. And I pray that you all will take in all that you can in the time that God gives you w/ Zoe. I know that we did. We lived each day as if it were our last w/ Eva and I am so thankful for doing such. I rest assured knowing that someday I will see her again. And as for our other two children, they too know that they will see their baby sister again, all in God's timing. Praying for your sweet Zoe. May I add your blog to my blog?