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?


  1. Unbearable tension…yes. It is so painful. Chronic illness is one tension I experience. Living daily with treatments, medication, pain. David is such a joy…it is painful to read your post, but so beautiful too. There is a sense of loss. I long to talk with David. To hear him speak his thoughts and share his emotions. It is difficult to live with the tension of brokenness that cannot be fixed.

  2. Steve, I remember praying for you and Lisa when David was born. Walking through these journeys with Him and each other is the is the difficult terrifying beautiful amazing gift of life. The closest thing to an answer I have ever found is about how He hangs on to us, in our broken world, and like you said bring it all to Glory. Jude 24. Now to Him who is able to keep you from stumbling and to make you stand in the presence of His glory blameless with great joy. You all have a special place in my heart. Joi

  3. I love the space you and Lisa created for Matthias to process his relationship with David. Such great thoughts, I’m really enjoying your writing lately. It reflects such thoughtfulness, humility and really captures parts of your journey. Fun to see it coming out in what you’re putting on paper.
    Love you bro!

  4. I love that you gave Mattias space to be present – to be real, to be known, heard and accepted. You gave honor to his sorrow, his loss. And the greatest thing is that you did that by sharing your feelings and sorrows of loss – then, in that sacred space, you lifted your son into your arms with your words and showed Matttias, that God’s heart is also angry and sorrowful and hurting for all He intended for brothers to experience and savor. This is a profound, real and BEAUTIFUL moment of heaven on earth in both of your son’s lives. For in heaven one day, when David is fully free, he will look down at this moment and thank you for giving him space to be present, known and accepted and loved in his own sorrow and loss – and feel the love of the Father in his father’s voice. Yours. Thank you for sharing this glorious moment of beauty, Steve. I’m so blessed to have spent time with you in erson, so I can hear you voice as I read your sharing. And imagine the look of love and care in your eyes, as I saw when you were with the children of Compassion. I treasure every moment I got to spend with you and Lisa. waving to you both from Northern Cal…

  5. Oh my…. thank you so much…. yes, I live in the tension, everyday… I am fighting cancer. I’ve been called incurable. But, that is not the label God gave me. He calls me beloved daughter and more than a conqueror. I love the stories of your beautiful family. And thank you for patiently listening to Matthias and then sharing with us.

  6. Such honesty is to be valued! My husband became a paraplegic due to an automobile accident in 1979. He has conquered it with an amazing zest for life and finding God’s love. In the last 4 years, he was diagnosed with a shower of blood clots in both lungs and CML Leukemia which is now treatable with meds developed in the last 10 years. He developed a bone infection in his ankle and had to have a below the knee amputation. He was thrilled there were now meds and he could get a camo prosthesis! He may get a bit frustrated at times, but always looks at every situation trying to figure out “how can I do this?” He hunts, gardens, retired from a good career traveling in the oil field, and is great at building and repairing. But to be honest, there are times it frustrates me, too. We have to find accessible seating for any event we attend, I have to help him with some of his projects even though I don’t enjoy them, we can’t dance without getting a lot of attention, trips to the beach are not fun in the sand, we can’t hike together in the woods, he can’t carry the heavy stuff for me, and the list goes on. However, he is alive and always ready for an adventure. So, we go in the woods in our UTV’s and find ways to do a lot. God and my husband have taught me many valuable lessons, but it isn’t always easy.

  7. I completely relate. My brother, had Prater – Willi syndrome. I am 47 years old, and my brother passed away last year at 52 years old. His death and processing his death and our relationship was as a friend put it, “complicated” which also summed up our entire sibling relationship. Growing up I yearned for another brother or sister, I wanted a “normal” sibling relationship. We don’t always get what we want. I decided that I would seek out a mate who had siblings, that I would experience brothers or sisters in that regard. Well, those relationships with my husband are “complicated ” Again, we don’t always get what we want. I am certainly not minimizing or negating your feelings. I understand them. Never feel guilty for your feelings. They are complicated.

  8. Hey bud! I can truthfully say that I have never written a comment on a blog post. You know how I am and you know how I think. I thought often about you and family, mostly about the time we never get to see each other. But, I think about your boys too! Both charming because both you and Lisa are charming. You are a great dad and I’m proud to call you Best Friend! Mathias is going to be a great thinker like you. I look forward to seeing you soon!

  9. Thank you for sharing. It means a great deal. I’m almost one year out from cancer. I’m also taking care of my 93 yr old mom. I love her deeply, but this is almost the hardest thing I’ve ever done. The scariest thing about caring for my mom is knowing her life literally in my hands. Such intense pressure as I help her deal with the indignities of aging.

    1. Marian I can totally relate to you. I was the caregiver to my folks 98 & 95, daughter with health problems and a son with a drug problem. Some days I just wanted to curl up and die. My folks passed away in November, 19 days apart. I grieve for them everyday. Hang in there, you are not alone. My prayers are with you.

  10. Steve: Look for a paperback book in the mail within the next week or two. It’s a book that has always made me think of you and your family. I decided to order and have it sent. Hope you find it a blessing as I did when I first read it.

  11. There are no words I can conjure to tell you what your sharing your family means to me. You all are such an example of true love in this sometimes messed up world we try and live in. Thank you for being an example of such positivity and love.

  12. This is beautiful. I don’t share your religious beliefs, but I do have a loved one with autism. I see things differently. Not saying better. Just different.

    FYI, here’s book about some of this that a minister I know wrote. Again, thank you for sharing. It’s rare that we hear these important words from the mouths of siblings. You have an incredible, beautiful wife whom I feel fortunate to have met a time or two years ago at blogging conferences. My best.

  13. Blessings to you all <3 You are raising amazing boys, and your story is a daily inspiration!! You share in such wonderful ways and this post touches my heart deeply. You are right, in that life is hard, unfair, sometimes broken and heart-breaking and our world is not the one God wants for us … but you also remind us that no matter what challenges we face, God walks with us and loves us, cherishes each and every one of us. A beautiful reminder of his promises for the future ~ I want to thank you and your family for all you give. I want you to know that your sharing truly makes a difference. <3

  14. So touching Steve. Our circumstances make us who we are. You and Lisa are so blessed to have 2 special sons. HAPPY Father’s Day

  15. Thank you so much for sharing. You have a beautiful family, beautiful sons. One day we will all be whole and happy in God’s light.

  16. When our 42 yr old son told us that his cancer doctor said there was nothing more they could do for him, I simply felt I couldn’t breathe, the sorrow was so profound. But I remembered reading a book written by a well known Rabbi, in which he explains the tragedies in our lifes. He said that these things happen randomly and we should not be angry with God. Don’t ask, “Why me?” Instead think, “Why not me?” Bad things and tragedies can happen to anyone at anytime. God is always by our side to give us strength and walk us through these times. I hope this gives some comfort to those who feel that God has let them down. That’s not the case at all, in fact, if you look closely, you’ll see that He has sent you blessings in many different forms to help. A stranger who offers a ride, a neighbor you’ve never met brings you food, someone you barely know sits with you when you start sobbing in a coffee shop. He loves you and comforts you in some very unusual ways! You are never alone.

  17. My daughter has Down’s syndrome. I do know the feeling. and you’re right we can’t fully understand it. But God does work everything together for good for those who love him. It’s for His glory and our good. God bless. ?

  18. Steve,
    I’m overwhelmed with emotion after reading what Matthias said.
    First I must say, how impressed I am that he had these thoughts…and then that he felt he could share all of this with you & his mom. That is SO beautiful. Your kind, thoughtful responses and your own sharing must have brought great comfort to him.
    It is always tough when there is anything in our lives that cannot be ‘fixed’ 🙁 After all, we are used to diagnosing a problem, so to speak and then going about the ‘process’ to fix it! To get back to ‘even keel’ …to normalize things, make the ‘better’.
    That first realization that some things do NOT get better, or cannot be fixed, probably comes much later in life for many of us.
    It did for me.
    God bless and comfort Matthias…with his sensitive soul.
    May He comfort you & Lisa, as well, because I’m sure hearing this was very hard for you. May He continue to give you wisdom.

    You sure handled it beautifully, Steve.

    Love your posts.

  19. Your story of your life is beautiful and tragic at the same time. I’d like to say, “beautifully tragic”. Love endures all!! You are truly blessed with the love you have for each other. The saying, Life isn’t Fair, speaks to us all in some way or another. David is lucky God picked a wonderful brother, mother and father for him. Matthias will miss out on a lot of things brother’s do together but he will gain a little more sensitivity, understanding and compassion that a lot of young men lack today. God bless.

  20. Great way to the teachable moment. It’s always difficult to know where to start, how in-depth to go, and whether to offer things for them to read or a game to play on the subject other visual aides there to be discussed for different learning styles.

Leave a Reply

Your email address will not be published. Required fields are marked *