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This is not the story I long for it to be: the story of instantly falling in love with your daughter, of seldom having a negative thought about her Down syndrome. The story in which you feel joy and gratitude for any baby you get to hold in your arms.
My own story is frayed around the edges by the guilt that comes with every recollection of my daughter’s birth.
She didn’t cry when she was born. There was only the sound of a quiet flurry of activity, the hushed and restrained voices of worried doctors. Then came a cry so pitiful it only enhanced my fears.
Finally, they brought her over for me to see briefly as I lay on the operating table, and my heart sank a thousand miles. While I expected to see a reassuringly familiar face, I saw one with unfamiliar but tell-tale features, ones that made this little girl seem more like a stranger than like a member of my family. This single, passing glance is how I received the news that my daughter has Down syndrome.
They whisked my new baby and my husband away after I awkwardly tried to kiss her face though my arms were pinned down. I was alone with the news that my baby’s features had announced to me. The doctors and nurses tried so hard to be cheery, but their strained smiles and chirpy reassurances betrayed their suspicions. Tears dripped down and off my face until a nurse took on the awkwardly intimate job of blotting away my tears.
After surgery, I was put in an isolated post-op room where I was tenderly monitored and cared for. I am normally reserved in showing raw emotion, but silent tears were freely flowing even though I was surrounded by strangers. I felt such a deep and quiet grief. There was no sobbing, no railing against the heavens, just a silent, iron sadness that sank deeper when my husband entered the room and his eyes told me as clearly as Amelia’s features had that our lives had been changed forever.
The sorrow was a heavy anchor that caught all our expectations of a happy birth and a healthy baby and dragged them to the bottom of our souls. Eric and I sat in silence for hours. We were alone because our daughter arrived early and wasn’t on anyone’s calendar. None of this was according to our plans. We felt God’s sustaining presence, and we didn’t doubt his care of us or good plans for us, but that didn’t change the fact that we felt emotionally devastated.
After a long while, our shameful thoughts awkwardly flopped out like fish desperate to escape a net, and indeed, we were desperate for them to escape and to be far from us. You don’t know how sinful you are until you realize the terrible thoughts that can be churned up in you about your own child.
When Amelia was finally brought to us, I thought my feelings of disappointment would dissipate into a mist of love and tender feelings. Instead, I struggled to see through my daughter’s appearance to who she was. I, the teacher who was able to love the most difficult students, was struggling to find loving feelings toward the innocent baby in my arms. Fear and shame clamored for top billing in my hurting heart.
I wanted to turn back time. I wanted to un-know that my life was changed forever because of what I had learned in an instant. I wanted to go back to our family vacation when I was blissfully pregnant with our third. And I wanted to be a better mother than the one who was dissatisfied with her own baby.
Three months later, this journey continues. Though I’ve come a good distance, I’m not yet as joyful in mothering as I desire to be. It might seem logical that as I get to know Amelia better (she’s becoming a fighter I’m so proud of, she has the sweetest disposition, and she has a darling smile), that I would be in a better place and feel less guilty. Ironically, the opposite is true. The more I adore her, the more guilty I feel that I would still take away her extra chromosome if I could. Time, and Amelia showing her personality, are helping me enjoy this girl who so fully deserves her mother’s pride. But, there are still conflicting forces at work.
I don’t have advice or answers. I have only transparency so that others who experience confusion and hurt, even while believing in a loving God, will know that they are not alone.
We’ve come a long way since this post! Click here to see pictures and read about our sweet Amelia!