“I feel sorry for your daughter.”
I felt the air forced out of me and paused, probably for too long, so she said it again.
“I feel sorry for your daughter. She can’t walk.”
It was at the end of monthly club meeting that Natalie attends. I looked at Natalie, concern buried deep in the lines on my forehead. If you didn’t know any better you’d have thought the words had passed right through my Natlebeth. I knew they hadn’t; when I paused, she paused. It was the exact moment the words caught us both in the center of our being and tangled around themselves before they struggled their way to the other side. It was brief, and barely noticeable, but it was present.
Words failed me. I fumbled out a response, still slack jawed, trying to preserve the dignity of both girls. She didn’t mean any harm; there was no ill will. Not an ounce. It was an empathetic and innocent response to seeing a girl her own age in a wheelchair.
And really, the only difference between the young girl and everyone else in the room was that she said it out loud.
Later I asked Natalie how she felt about what happened and what she’d like me to say if it happens again. We came up with a plan. And then we talked.
“Natalie, sweetie. You…see…well…the thing is…Natalie. *deep breath. regroup* You were made by a creator who knew you before I knew you. Before I even knew there was a you to know about. He made you, Natalie. You know the blanket Amber knit for our family? You know how when we are under it we talk about how much care and love and beauty went into that blanket, and how safe and warm we feel in it? God, He knit you like that. With care and with love and so much beauty…and purpose.
“Natalie, your dad and I don’t want people to feel sorry for you. Because we don’t feel sorry for you. We think you are a marvel and a force to be reckoned with and a pure joy. We think that feeling sorry for someone is the same as feeling pity. And for something to get pity it has to be pitiful. You Are Not Pitiful. And you have gifts to give this world. And SMA is awful and difficult and it’s okay to be sad about it sometimes. It’s really, really okay. But it’s not who you are. It’s not even close to who you are.”
Last week she hit a wall again. She wants so badly to jump and run and shoot a basketball like her friends. We talked about how having a heart that aches for belonging is so normal and so human. These talks are not an everyday occurrence, or even weekly, but they’ve become more frequent and full of emotion as she wrestles with the reality of balancing living and loss at a tender age. And as her parents, Dan and I struggle with acknowledging the loss and the bone deep feelings that come with it, and finding some fulcrum to balance all of that with ushering her forward into the full beauty of life.
Jesus said, “The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.” He didn’t say “I’ve come to give you glimpses of wholeness in bits and pieces,” or “I’ve come to sit with you quietly on the sidelines,” or even, “You’ll know the fullness of life after I heal you.” No. None of that, actually. Life in the full. And right now, in the dead center of all of the brokenness and mess.
And so that’s what we pray for.
That is our fulcrum.
So, pray for her. For us. Treat her like she is the age she is, knowing that eventually she will be the age you are. Talk to her like she can hear you from her seated position. Talk about her like she’s listening. She IS listening. It’s okay to ask questions, and it’s okay to feel your heart being tugged on. It’s okay to help us (God knows we need it). But, as her parents, we are asking to stop short of feeling sorry for her or for us, and move toward empowering and cheering her on. And when she questions and she forgets whose she is, remind her.
We are well aware of what SMA is waiting to steal and what it will attempt to destroy. And we feel the angst and frustration and sorrow at her losses, yes. But sorry for her? Not a single time. We want Natalie to fully know and experience life and purpose. We want others to see past the wheels and the can’ts and straight to the possibilities, her gifts and talents, her brilliance, and her charm and wit, and then propel her into the world with such a force that she moves mountains in her lifetime.