I remember scouring social media those first few days of Cash's life. We were at Arkansas Children's in Little Rock within a day after his birth. Nights were filled with thoughts of how this new life would be and the uncertainty and fear that follows. So, there I would sit-searching, googling, searching again. I would scour social media looking for families like ours, looking for pictures of happy families to remind my fearful heart that we would one day be that happy family too.
I was also searching for something else, though. For little babies after Down Syndrome. The truth is that I was so ashamed. Here I was, with a beautiful, fuzzy-headed red headed little boy, and yet I was already wondering about another to come. Would they have Down Syndrome too? Was the hope of a third child gone now? The geneticist had informed us that all future pregnancies up until my mid- to late- thirties would have a 1 in 100 chance of another Down Syndrome diagnosis purely based on statistics.
I messaged another mom who I had recently connected with on facebook. With complete vulnerability, I found the courage to ask her how they had decided to have another child after their son's diagnosis. I felt silly but it was so heavy on my heart. I remember her telling me in so many words, that after some time, it didn't matter to them if their new little one had Down Syndrome. At this point in my journey, I couldn't fathom that freedom. That peace with the diagnosis.
Fast forward three years. As Cash has grown and thrived, I've often gone back to these moments. Would we have another child? Yes, someday. Was there still fear and uncertainty? Absolutely. But, I also began to understand her initial peace with the diagnosis. Down Syndrome wasn't scary to me any more like it was in those first days and months. Instead, it had brought so much joy and growth to our lives that I didn't want to live in a world without it. Down Syndrome was a blessing.
Soon after Cash turned three years old, we got an unexpected surprise in the form of a positive pregnancy test. Timing was not great. I was switching jobs and we had hoped to wait another year before trying. But, of course, God has to laugh at our plans sometimes and throw us a curve ball.
Days after finding out about our new little one, those fears creeped back in during the quiet of the night. And there I was again, back to square one--googling and searching for the information I already knew trying to find some peace of mind. I felt overwhelmed by that old friend named fear that I knew well from long ago but have learned so well to push away. But, there it was again like it had never left. Fear is binding. It's like a straight jacket for your soul making it hard to breathe let alone live a full life. I prayed that the Lord would give me faith. That I would learn to trust Him even when I felt afraid.
As I was sitting on the couch with my boys one night, Cash and Parker snuggled close to me and Warren, I looked at my little boy and felt God stir my heart. I was so overcome with a love for this little boy who I had feared so much in the beginning that I felt like I literally might burst. And with that love, He reminded me that it didn't matter. That He knew long before we did all the perfect joy Cash would bring to our family. In the same way, He's known all along all the ways this new little one will overflow our hearts, as well--extra chromosome or not. And with those words, God healed my fear and reminded me that He loves me. That His intentions are pure and good. And that no matter what, we'd never be alone.
In less than a week, we will have a very non-invasive genetic test to determine whether or not our growing little one has any more common genetic abnormalities, primarily Down Syndrome. I could have easily waited another week to write this and told you "see, God is good!" Instead, I've always wanted you to see this journey for what it is. Fears, joys, unknowns. No matter what we find, we will love and cherish this little soul. It will feel more love and sloppy little boy kisses than any baby has ever known. It will be taught that Jesus died so we could live. That kindness is not always easy but the world needs more.
Because the truth is, this journey has become less about Down Syndrome and more about living a life without the shadow of fear. One of hope and joy. A life of raw, honest faith that takes twist and turns along the way. My deepest prayer for you is that you would feel that freedom. The freedom that comes when you learn that His love for you is deep. A love that cast out all fear. And though life is ugly and scary and sometimes it really feels and looks like He is nowhere near good. I pray you'll cling to the light and push through that fear. You are so far from alone.
Just the other day, I heard this new song from Francesca Battistelli. It reminded me so much of my own daily struggle with fear.
"Fear, you don't own me
There ain't no room in this story
And I ain't got time for you telling me what I'm not
Like you know me, well guess what
I know who I am
I know I'm strong and I am free
Got my own identity
so fear, you will never be welcome here"
*And to my sweet googling momma as you sit there in the dark of the night so consumed by a new life of doctor's visits and medical terminology you never hoped to know, I pray this post will give you hope. Remind you that one day, that diagnosis won't be so scary. Sure, there will be days you hate it. That you feel sorry for your child and in all honesty, yourself. Know that there is no shame in asking all the questions that your heart yearns to know. We all feel them and push them away with shame. I hope you'll lay down your head tonight and be reminded that your little one was made with perfect intention. And that fear-it has no place in your here.*