The other night at dinner, Matthias stared down at this food, his eyes going back forth thoughtfully. He looked up, eyes full and moist,
“I want to talk about having David as my brother. (I love you David and this isn’t about you and I don’t mean to be rude.) I’ve experienced a lot of loss. I don’t have a sibling rivalry. I can’t hang out with David like a typical brother.”
Lisa and I exchanged looks. Matthias has spent countless hours in doctor offices. He’s endured the frustration of a brother who knocks over his toys and gets in his space without being able to retaliate. He’s spent hours alone in the same room as his brother, when other brothers would be paying catch or wrestling.
“I’ve learned a lot from David and am probably more sensitive to other people as a result. I’m thankful for that. But it feels really unfair. It’s hitting me that I’m probably never to going to meet David’s wife. I’m not going to meet his kids. (No offense David.) He’s probably not ever going to get married or have kids.”
As he says these words it takes me back to Torrance Memorial Hospital where the boys were born. I can see David, his seven fingers, his little body. I hear his faint newborn cry. I see the doctor in front of Lisa and I:
“We have run tests and reviewed your son’s condition. We believe he has Cornelia de Lange Syndrome. With this syndrome he will never walk, talk, have children or lead a normal life. I am very sorry.”
Today Matthias is receiving the same news. He’s always known, but never truly understood until now.
He turns to me, “We’re never going to be able to go out and grab a beer together.”
He looks at Lisa, “Mom, you get together with your sisters for your birthday. You guys get to go to Santa Barbara or San Francisco for the weekend. I’ll never have that with David.”
The moisture in his eyes and the early teenage angst in his face intensify. He looks between us, his parents. I want to explain. I want to tell him it’s OK. My heart beats and aches in my chest. I hate hearing the mature pain in my young son’s soul. I hate the painful tension in his eyes.
We say nothing. We wait.
“I feel really sad about that. It’s hitting me lately. I’m angry at God that He didn’t change this for David. He just let it happen.”
I know the feelings Matthias is sharing. I felt them when David was born. I feel them when David gets sick. When David races into the room where I’m playing my guitar and begins to bang out a couple notes on his keyboard. I know he want to play Beatles songs with me. I feel loss and anger he cannot pursue his innate love of music with me. It’s dishonest for me to say I don’t relate in my heart.
“I feel sad too Son. I feel angry at God at times too,” I admit. “I can relate to your sense of loss. I want to meet David’s wife and kids too. I see how you have a brother, but don’t experience all the brother things—wrestling, looking out for each other, playing games together. I feel privileged you are sharing your thoughts and feelings with us.”
But this is not the full story.
“I think God feels sad and angry about Cornelia de Lange Syndrome too. We live in a broken world. God did not want the world to be like this. And you’re right, He has allowed it to be this way. But that’s not the full story. He’s also pursuing His creation to redeem and restore it to the way it’s supposed to be. I’ll be honest with you Son, I don’t understand it all either. I feel the tension—if He’s going to fix the world, why does He allow the world to be like this. I could give you a lot of impressive theological answers, but the truth is, I don’t know. I just take comfort knowing this is not the world God wants and one day it will be different. One day David won’t have Cornelia de Lange Syndrome. We will be free of the pain of loss. Until then, we live in the tension.” Sometimes an unbearable tension.
We all live in this tension. You may care for an aging parent. You may be fighting a life-threatening disease like cancer yourself. You may have lost a loved one. A hard marriage, an unfulfilling job, financial trouble. We all know the pain and loss of a broken world. We live everyday with joy and pain side by side. We all know this is not the way it’s supposed to be. I take comfort though it breaks our hearts today, one day it will be different. And sometimes, like Matthias, we just need to tell someone who will listen. We need to be able to share our fear, our sadness, our anger knowing it’s doesn’t make us less, but makes us human. Knowing God stands with us in the tension. Knowing God understands the pain.
Are you living with a sometimes unbearable tension?