Hey, friend!

I’m Shannon— I believe in the power of story to help people walk forward in hope, no matter the circumstance. I write about faith, special needs parenting, and discipleship. So glad you’re here!

Day One

At 5 AM on Wednesday, I woke up knowing that my baby would come. Only a few more hours, and A could meet her baby sister. She could hold her, feed her, pat her head, and give her sweet kisses. We would take an adorable family picture in the hospital room and send it out to all our friends and family. We would bring that sweet baby back to our home and put her in the purple and gray room that we have had ready for weeks. We would love that baby, and she and A would grow up to be the best of friends-- laughing and arguing and getting into trouble together, standing up for one another when the other had a stupid boyfriend or a mean friend, telling each other secrets, planning life together. Just like me and my sisters.

At 5 AM on Thursday, I went to sleep in my hospital room for the first time in 24 hours, our life trajectory pummeling down an entirely different path than we ever thought possible. For the first 15 minutes of K'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 K 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. We are uncertain about exactly what this all means for K and for us, so we wait.

As a dear friend 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 K.

But, each morning the pain is salved a bit more with peace. And I believe that peace comes from a God who knows exactly what K's chromosomes look like and exactly what the future will be. I believe we have an unbelievable support group of friends and family who are constantly and fervently interceding for us in prayer. And I believe that while coming home from the hospital without an infant carseat in the back was never my plan, God knew. And He knows why.

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.

Psalm 139:13-16

**CLARIFICATION UPDATE (four years later): We have learned through extensive genetic testing that K's chromosomes are just fine, and her true diagnosis is a non-progressive muscle and joint disorder. With the help of some amazing doctors, nurses, and therapists, she has progressed astoundingly and is growing into a whip-smart, determined, hilarious little girl. We continue to be amazed at what God is doing in and through her. However, I left this blog post as is because it is important for me to remember where we started. And, as I've learned, others have been through similar experiences and it helps to know you are not alone. I leave these words alone simply because, on day one, they were true.

On Prayer

To A on her Second Birthday