She was no longer wrestling with the grief, but could sit down with it as a lasting companion and make it a sharer in her thoughts.
– George Eliot
Several times a week I take my fourth daughter Evangeline to pick up her sisters at school. I stand gripping the handles of Evie’s pink polka-dot umbrella stroller and try to act casual all the while hoping I didn’t wear one of my many mom shirts with a stain on it. Inevitably a child who is waiting with her mother for a sibling, notices us. Toddlers explore. They demand attention. They key in on others around them at eye level. She walks over and tries to engage Evangeline.
“Hello, girl. Hi.”
Evie’s eye contact is spotty at best even with me, so I am not surprised when she looks anywhere but at the cute little one in front of her trying to make a friend. Our daughter joined our family through international adoption in 2009. She is five years old, has Down syndrome, and so far, is non-verbal and mostly un-communicative.
Usually it doesn’t bother me that Evangeline is closed off. I want her to communicate. I am dying to know what she is thinking. But I love her, and every day I get be her mother, I learn more of her language; being led by the hand to the bathroom = Evie wants a bath. Getting hit with one of her shoes = Evie wants to go outside. I am thrilled with these breakthroughs. My husband and I pray that Evie will speak, but we are also happy with her progress. I’m thrilled every time she initiates communication. I am thrilled when she walks up to me in the kitchen and raises her arms up above her head to be picked up.
After almost six years of parenting kids with special needs (our third daughter Polly also has Down syndrome), I can say that mostly, life is good. God is faithful. My husband and I have a strong marriage. I am mom to four beautiful girls. Therapy and doctor appointments, changing a five-year-old’s diaper, and having to leave a crowded party early because the noise over-stimulates the girls, have all become typical occurrences for our family.
But still, when a child tries to make friends with Evie at school, my heart contracts like a lung. I grieve a little. I grieve because I want Evangeline to have friends. I grieve that a child clearly years younger than Evie is so much farther ahead of her developmentally.
Parenting children with special needs involves a tension; an almost mystical dichotomy: I love my girls more than breathing, and yet I grieve, not who they are, never who they are. I believe they are fearfully and wonderfully made.
I grieve sometimes, in the quiet places in my heart, the children they are not.
God broke me over the birth of a child with a disability. At the time I was a missionary and a pastor’s wife, and I hadn’t even realized my need for brokenness. But oh, how I needed it. When a person is completely broken, God comes in and starts the hard work of rebuilding. All the icons, the little trinkets and areas of life that we have set up in our minds like decorations in our living room, are knocked down. Once I was cleared out, there was all this room for Jesus to work. I have been challenged and surprised time and again what he can do with all this space in me.
The lingering grief that creeps up while I stand waiting for my kids, if I see it properly, is a gift. It reminds me that life isn’t always easy and pretty and what we expected it to be. Mostly, though, it is a reminder of God’s intimate involvement in my life, and of my continual need for brokenness before him.
*To view the complete #SpnMin TweetChat dialogue with Gillian Marchenko, visit our Facebook Notes. You can also get to know this remarkable woman better through her website: http://www.gillianmarchenko.com/