March 21, 2017
Today is World Down Syndrome Day. After 18 months of being a parent of a child with special needs, I would not say I’ve become an expert. I would say however that got a new set of glasses- a clearer window into something I was afraid of because of my own misunderstandings, fears, ignorance, and insecurities. I’m going to get very real for a minute. Years ago I remember asking God, “Lord please just give me healthy children. I can’t be a parent to special needs. I don’t have the patience, the energy, and truthfully the compassionate heart. Please just not that.” I was terrified of my life looking different than I imagined it and assumed that my version of bliss was that which Id already known and tasted.
“Taste and see that the Lord is good.” -Psalm 34:8
The day I found out I was pregnant with Esther Rose I scribbled in my journal, “This is going to be a different road isn’t it Lord?”
I guess Our sweet Father knows what we need most and He knew I needed a little prep time to battle the fears that had long shackled me. I don’t know how I knew, but somehow I just felt it in my gut but spoke nothing of it. About 5 months in I was sitting at my kitchen table with my mama, anxiety roaring over the unspoken what ifs tumbling around in my womb. I looked at her and whispered as if voicing my fear would somehow call it into existence. “Mom, what if she…” My mom cut me off and smiled at me, “I know honey. And it will be ok. God knows what He’s doing.” Forgive me as I pause, even now weeping thinking about the magnitude of the moment. One simple word of comfort half way through- spoken without knowing the fullness of what it would mean. It got me through. For those of you that know us already, Taylor and I share everything. Theres not a secret to be found by the grace of God over us. But for some reason this one stayed inside. I didn’t know for sure and we both decided not to get the testing for Down Syndrome during my pregnancy. I suppose our Daddy knew I needed prep and Tay needed to know in the moment.
The day Essie first opened her eyes and they laid her on my chest my heart raced. I took one look and I just knew. I knew my world would forever be different, changed, unexpected. What I didn’t know that day is why. As Taylor and I sat on the hospital bed after they told us Esther had Down Syndrome, we wept together over the things we thought we longed for. In that moment the lens from which we’d seen the world shifted, it changed and the room got still and peaceful. My fears- gone. It was replaced instead by unspeakable joy and humility that God would choose us, US, to parent this special child. I wept because that day Jesus told me something I’d always wondered. By giving us Esther Rose He told me He believed in me. He had faith in us as a family to love this gift the way He would. He knew that the very things I was most afraid of were really the very things He longed to use to bring our family life and joy. We got a myriad of responses as people begun to find out. “We’re sorry.” “Can we pray for healing?” “What a gift!” “Are you ok?” “She’s perfect.”
It was difficult knowing how to navigate these waters with grace because truthfully, I think I would have been in the same place a few years ago. I would have looked with sadness, maybe a little uncomfortableness of how to respond to new parents of special needs and maybe even said a silent prayer of thanks it wasn’t me. I would have wanted to know her, to have someone in my life to teach me how to understand Downs a little better. But I wouldn’t have known- how could I? But I know now. I know now that this little joy bringer
special, yes. But special needs? I think we have it backwards; I believe that WE are the ones with special needs. Esther has special gives. We need to see through the eyes of a child. We need to love without abandon. We need a deep well of joy inside of us that bubbles over. We need to wave and smile at total strangers on the bus that look mean and hard and make him grin. We need to use less words to speak and more physical affection to communicate our hearts. We need total reliance and trust in our
Father when we are unsure how to take the next step. We need to stop what we are doing and raise our hands in the air when worship music comes on, simply because we know the temporary things here can wait. We need- I needed, a new pair of eyes.
It’s changed me.. Taylor, our precious Abigael and Nate, and the sweet family and friends that have entered into this world with us. Every time I look into the eyes of our daughter, shaped a little differently than mine and the deepest blue you’ve ever seen, I see a gift I once asked not to receive and thank God daily He chose to answer differently.