Updated: Aug 12, 2019
“Oh, that today you would hear his voice: ‘Harden not your hearts as at the rebellion.’” (Hebrews 3:15)
“Laura, your baby has Down syndrome.”
“Laura, your baby has Down syndrome.”
Another “no” opened wide out of my mouth, and it seemed like I was not speaking from anything but my soul, from instinct, delirious from childbirth, in shock, out of my body, out of my head, and I was saying, “No,” over and over again.
My doctor said the words a third time.
My “No” meant fear for my baby and for me.
My “No” meant I wanted a perfect life and a perfect baby. How often do we say when a baby is born, “They are perfect,” or, “They are healthy,”?
My “No” meant I wanted those words, not these. My daughter, Vivien, but seconds old, did not cry out a lusty “welcome to the world cry.” She mewed like a kitten. I was terrified and heartbroken.
And then I said something from my ignorance and from my fear, “Oh God, oh no, my poor baby.” I felt like a failure – if I could have used reason at that moment to define my grief. I felt afraid for my infant daughter’s entire future.
“Stop it. Your baby is fine. You feel sorry for you.” Those words were the slap into reality and thepresentthat I needed. They were said with harsh, but loving compassion. My godmother, Kathryn, by my side for Vivien’s difficult birth, was my rock, my heart-mother. She knew what I needed to hear. In that moment, she was Jesus to me. She wasn’t Kathryn. She was the voice of God.
What changed for me in that moment was recognizing, in my heart, I absolutely could not feel sorry for myself. My baby needed my full attention, adoration, and love. She needed my courage and my faith.
I clung to prayer, to God, those first 10 days of Vivien’s tenuous life in the NICU, but sometime during the next 355 of her life, the self-pity returned. I was angry at God that I didn’t get to have a “perfect” or “normal” or “easy” or “typical” motherhood. I counted the number of friends who had babies that year. 17. All “typical” and “healthy.” I spent perhaps too much time in grief, anxiety and despair. I rebelled, in my heart, against my circumstances. I resented God.
The love of our community and the joy – and the tears – that welcomed Vivien was overwhelming and truly comforting…we were rarely alone and we were blessed abundantly with prayers, gifts, time, attention, and amazing resources. Every day was grace-filled. I could see this and feel it, but inside my soul, I was still rebelling against God, hardening my heart.
Truth is, Vivien lives a charmed, healthy, and yes very “typical” and very blessed life. We have never wanted for a thing when it has come to supporting Vivien’s development, education, and her tender belonging in our community, especially our St. Peter family.
The wanting was in me. The wanting was to be like everyone else, whatever that means. I had hardened my heart to God’s most precious, revelatory, and loving of gifts.
My uncertainty in how to be a mother, let alone a mother of a baby with special needs, was the gift of vulnerability to grow in faith and trust and the grace of God. I just kept on saying “no” in different ways…not in loving my baby, but in loving God for the gift of my baby. I truly believed I was being punished – punished for past sins, past mistakes. And worse, I feared that Vivien was going to have less in life because I wasn’t good enough.
At the core of it, I was rebelling against what I idealized – intelligence, for one thing. I agonized in my mind that my baby was mentally retarded.
Then one ordinary day of fretting and arguing in my head with God, I heard a voice that was not my own.
“Stop saying your baby is retarded. She has no idea what that means. That’s your label. That’s your problem. Not hers. She is perfect and loved.”
Again, I knew that voice. It was Jesus.
The most beautiful truth – if we can allow ourselves, beyond our “wiring” or “scripts” – the tapes that play in our heads – is to realize, without doubt, with great conviction, that all of life is sacred, precious. That we are ALL perfect in God’s love and perfect creation. That we are all okay. God doesn’t make mistakes. We deserve life. We belong. We can thrive. We are beloved children of our Creator. You, me. Vivien.
I write this for the mothers and fathers like me, who may have hardened their hearts to some aspect of what we have been given from God in our children, in our jobs as parents.
It’s been a long journey to accept this most precious truth: we are beloved by God. Every life is a sacred, treasured gift. Every life has meaning, purpose, joy. And absolutely none of us are typical.
Being Vivien’s mother has made me more of a daughter of God. Today when I hear his voice, I harden not my heart. My prayer in sharing this is that the Holy Spirit comforts another mom or dad like me, struggling with the gift, struggling to accept and trust with grace. There’s nothing like truth to awaken us to God’s mercy and love.
If today you hear God’s voice, harden not your hearts.