Tuesday, March 20, 2012


It finally happened, that breakdown many people seemed to be encouraging me to have. I stood alone in the shower, the only place I get to be alone any more, and the waves hit me like a sonic force in the chest. I sobbed, just letting the water pour over me as the thoughts tumbled free of the place I had stored them. It just was too much. All of it. Everything since the doctor told me that Mariana probably had Down's syndrome hit me in thought after thought.

But it's not what you think.

It was gratitude. What hit me was what could have been. It started with a friend posting the imprint of her baby's feet on her Facebook wall. A baby that died of anencephaly. One of two that she lost to the disorder. The feet, you see, looked just like Mariana's. The big toe was very large with a wide space between it and the second toe. Those footprints haunted my thoughts for days. Later I was back on Facebook only to read a blog post from another friend. Her baby has been diagnosed with Trisomy 18, a condition that is frustratingly called by the medical community as "incompatible with life", though there are a few hopeful cases. Trisomy 21. Just three chromosomes down the line. How could we be so lucky?

In that moment in the shower the "could have been" thoughts rolled over me like waves in an angry ocean. My soul was tossed over and under and scratched by the sands of reality and the reality we had escaped. Our baby, our beautiful girl, seems so very healthy. So much that if we hadn't had that blood test to confirm it, we might question if she really had this condition. Her face at certain angles looks just like Kate's did. Her fingers are so long, and her tongue so utterly perfect. She keeps doing these things we were told to expect to have trouble with. How could we have this perfect little being? How could the world tell us she is a non-person? How did we escape the gruesome realities that exist in child bearing? It seemed like I was Peter walking on the water and the reality of what could be threatened to swallow me like the sea.

I spent several minutes in that space of could-have. Yet I never felt lonely. I felt blessed and chosen and tiny. I asked why we would be chosen, yet spared. Why was our baby loved when so many are not? Why did we have so many moments of grace through all of this, when I knew, after reading many accounts, that so many parents have terrible grief and guilt? How did we qualify for these blessings? Wait, no, I knew that I sure as hell didn't qualify for the generosity that God has flooded us with. Why, God, why do you care so much, give so much, and comfort us so much?

There is a line in the Narnia series where Aslan tells Lucy that no one gets to know what would have been. Sadly, that isn't the case for could have been. Yet we don't get to know why it wasn't. We don't get to understand why our story is what it is, or how God doles out his grace. All we can know is that none of us deserve it. All we can do is is accept it and try to be better for it. In the end we can only shine the light on God's great works, and let it be enough.


  1. Speechless. well done b. Your babies are so lucky to have you. keep writing, it is SUCH a powerful witness (again I say unto you that you should write a parenting 'experience' book). love ya from michigan.

  2. What an awe-inspiring passage to read this am Barb!! You NEVER cease to amaze me! I am amazed @ your level of mature insight @ such a young age! Yesterday would have been our boys' 6th birthday & I miss them so much. Those babies were so beautiful & perfect & I have questioned so many times---what did God know that we couldn't see?? All your children & most especially Mariana are soooo lucky that God chose you for their Mommy!!! Keep me up-to-date with your babies since I can't see them face-to-face!! Hug them all for me!& Hug yourself & Scott too!!!

  3. Your attitude is beautiful and awe-inspiring. My little brother has Down's and is now 14 years old, doing quite well. We were lucky that he also has had no major physical setbacks, just the usual need for ear tubes, glasses, and some physical therapy when he was very little. Please keep writing!

  4. Anonymous1:56 AM EDT

    Beautiful perspective. Since it is World Down Syndrome Day today I have been doing a lot of reflecting. It's been 21 years since I was told by my doctor that she believed my son has Down Syndrome, and the 10 agonizing days that followed waiting for results. How fast the time has gone. And how I so wish I knew then what I know now. Especially in my sadness. This child has been the biggest source of joy in my life. He reflects the very heart of Jesus every single day. It is not just a cliche to say this child is a gift... it is simply the truth. You will be blessed. I know the gut-wrenching pain... but I also know that weeping endures for a night, but joy comes in the morning. Keep writing, because your life will never be the same. Enjoy this beautiful journey. Congratulations on your precious new baby girl!!