Strong and Brave

We spent anxious hours awaiting your arrival. When you arrived, we rejoiced and cried. The doctors showed me your little hand. Your mom took you in her arms, “Hello David, I’m so happy to meet you,” as she smiled at you. You squeaked out your nearly imperceptible cry. Our hearts hurt. We were so happy to be a family of three with you in our lives.

When you came home, I held you and crept into your room to check on you often. Each time I entered your room, I prepared myself to find you were no longer with us. I prepared myself to be strong and brave for your mom. Each time I found you to be the strong and brave one. Lying in your crib peacefully sleeping, crying for food, or ready for snuggles. Four pounds, two ounces, you had no idea how you demonstrated the strength and resilience of a Navy Seal, surviving and thriving every day.

You didn’t walk until you were five. Then one day at church, you got up and quickly crossed from one side of the gym to the other. We could hardly keep track of you! You have never uttered a word, but you have learned to tell us what you need. You find those who are hurting in a crowd and show them comfort and love. You have looked in my eyes and asked why. You have told me you love me. You have penetrated my soul.

You had six surgeries by the time you were six years old. You have spent hours in waiting rooms, doctor offices, and hospitals. Each time, I swallow my fear to be brave for you, your mom, your brother. Each time, I fear losing you. Each time, you again prove you are the resilient one. You are a fighter, a survivor, someone who thrives.

We nearly lost you between Christmas and New Years of 2015. Suddenly hit with pneumonia, O2 levels well below critical. Your mom’s instincts saved your life. 24 hours after arriving at the ER in Cambridge, you were up, feisty and ready to get moving again. Not until then could we allow ourselves to grasp how close we came to losing you that night. Your mom and I wept out of joy and unreleased fear. We welcomed 2016 with greater joy in the mundane reality the four of us would board the plane together back to the U.S..

Your recent pneumonia again had us worried. For a week I entered your room multiple times a night, reliving those early and anxious days when you came home from the hospital. I don’t know how many times in 15 years I have entered your room, my heart beating fast, braced to find you gone—ready to be brave for your mom and brother. I’m the dad, it’s my job to be strong for our family. Again and again, you show you are the brave and strong one. You refuse to give in. You have too much love and joy to offer the world. You are made in the image of God and you reflect Him to the world everyday as you create music with your keyboard and as you relate to others with your hugs and smile and laugh.

We have celebrated every milestone of your life. Every birthday we take note. Every school transition marking another achievement in your small and remarkable life. I couldn’t imagine this day when you were born. Today you turn 15. David, you are one of my heroes. You show the strength of a grown man. You show the courage of a warrior. You are strong and brave. Today I celebrate you my dear son.

Who is strong and brave in your life?

Brothers

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?