At 5 AM on Thursday, I went to sleep in my hospital room for the first time in 24 hours, Lee's and my life trajectory pummeling down an entirely different path than we ever thought possible. For the first 15 minutes of Kate's life, she was blue. It was horrifying, but I thought that once she turned pink and began to breathe, everything would be okay. But, then words like "mutation" and "problems" and "chromosomal abnormality" and "condition incompatible with life" started swirling into our world at a mind boggling speed. And when I woke up at 6 AM on Thursday, I felt like I was waking up into a bad dream.
So, Day 1. We learned on Day 1 that our sweet Kate most likely has a chromosomal issue, and it most likely has to do with her 18th chromosome. Other than that, the only diagnosis we will get for a while is "Wait." So, we wait until her genetic test comes back, we wait to think about the future, we wait on the Lord to show us why. No matter what, Kate will be a special needs child. We are uncertain about exactly what that means for Kate and for us, so we wait.
As our dear friend Doug told us, there is only one Day 1. Thank God. One more dimension is now added to my understanding of Jeremiah's words in Lamentations 3: "His mercies are new every morning." Because I have started really hating waking up in the morning. I have to remember all over again every time I wake up that my baby is in the NICU and not with me, that we have no idea what the future holds for us or for Kate.
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For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 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.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 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.
16 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 139:13-16
Shannon and family...
ReplyDeleteI have been thinking about you all alot lately, as many have - praying that doctors are wrong. God doesn't give us things we can't handle. Praying and praying more....
Carrie Coke
Thank you for having the courage to write and share at a time when it must be very difficult to even think. We are praying daily for sweet Kate and the whole Owen family.
ReplyDeleteThank you Shannon for the beautiful update. We know that Kate was made in God's image, just like Avery, and that is a beautiful image. I'm praying for you all as you face difficult and unexpected roads and that God will continue to give you hearts that trust Him and eyes that see evidences of grace. I pray that Kate's life will proclaim the gospel of Jesus to all those around, starting with her parents faith and love. We don't know what the future holds for Kate on this earth but we can hold firmly that the work of Jesus on the cross, and the eternity He has secured for her, is a great hope and future. Love you and praying for all of you.
ReplyDeletePraying for your strength and joy as you walk this path in life. Y'all are so amazing and the lives you have touched show it. Sweet Kate is so blessed to have a mommy and daddy like you. Ones that love unconditionally. Ones that trust in their Creator and Sustainer. You are not alone.
ReplyDeleteChad Overton
We will be in fervent prayer for sweet Kate and she is a beautiful angel!!!
ReplyDeleteGod is all knowing and He doesn’t make any mistakes, everything He allows we must receive as blessings!
This is your journey and He will be there every step of the way.
What the world says is normalcy doesn’t mean a hill of beans to God.
This is a test of faith and you must pass it and you will!
Praying for you guys!
ReplyDeleteShannon, This is Jessica Avery Brown. I graduated with your sister, Jennifer from Lake Highlands. I am writing because I married into a family with a special needs daughter. Her disorder is called Emanuels Sydrome and deals with the 22 chromosome. I wanted to share a poem with you that has blessed my mother in law over the years. I pray you receive the peace and comfort only Jesus can bring. I know it's difficult going through this with unknowns. When Jillian was born there was one paragraph on what she had in the encyclopedia. Anyway, blessings to your family during this time.
ReplyDeleteWELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Hi Shannon,
ReplyDeleteLaura Furr sent me a link to your blog. We're on day 72 in the NICU. Our daughter was born at 27 weeks and only weighed 1 lb 2 oz. It's a stressful, exhausting, tear-filled journey, and I'm so sorry you are having to endure it. Feel free to email me if you want to talk to someone who's going through this too: markandjennatinsley@hotmail.com. And here's a link to our blog if you're interested: marknjen.com/claire. This is the verse I cling to every day:
"The steadfast love of the Lord never ceases, His mercies never come to an end; they are new every morning. Great is your faithfulness." Lamentations 3:22-23.