Series on Suffering: Parenting A Disabled Child

Welcome to our Series on Suffering.  Starting out our series is an interview with Matthew* who graciously shared his story with us back in 2012. He approached this task so thoughtfully, and I was moved by his responses to the point of tears.

wheelchairshadow1

I’ve shared before how easy it is to ignore those on the outskirts of our stories. My hope is that through Matthew’s story, we’ll gain tools to help us engage with those we often awkwardly dance around.

*All names have been changed.


Christan: Thank you, Matthew, for agreeing to share your story. Tell us about your family.

Matthew: On a recent road trip, my son, Jonathan, declared, “There is nothing normal about our family.” From afar, maybe we look normal, except for the wheelchair. But the closer you look at what we do each day as a family, the more you’ll see that we don’t operate normally.

My wife and I are 41.  We have two children, an average-sized home, and earn a middle class income.  I am a teacher, and Kelly is a tutor. We don’t stand out in any way. We look and act really normal.

Our daughter, Claire, has severe cerebral palsy, epilepsy, and intellectual disabilities. She can’t do anything for herself, and yet she wants to be actively involved in life. So we take care of all her needs — everything from dressing to walking to eating. Or we find someone who can… which is a tall order. Our lives revolve around trying to make her life as normal as possible.  She wants to read books, but she can’t even hold the book.  She wants to dance, but she can’t sit up on her own. She wants to go shopping, wear jewelry, and tell jokes, but she can’t walk or talk. So we do the best we can to help her live the life she wants to live, and it takes the whole family and a village of volunteers to make that happen.

Christan: Tell us more about Claire.  I believe she was healthy in the womb, right?

Matthew: Claire was healthy in the womb until the 40th week, and then she had a fetal-maternal hemorrhage and was born via emergency c-section without any vital signs… zero Apgar scores. She was resuscitated after 13 minutes, but the damage was done to the brain. So from the very start, we knew that she would have life-long problems and that our lives would never be the same. In some ways it’s been worse than imagined, and in other ways, she’s more of a blessing than we ever imagined.

Christan: When did you begin to grieve?

Matthew: Our grief was steady on from the start and still exists now. We grieve for her and for us often. We wish for a normal life every day.

Christan: Were you hopeful in the beginning that Claire was only mildly affected by her birth trauma? What reality has unfolded?

Matthew: Kelly always wished for four or five healthy, active kids. Instead she got one very healthy active boy and one severely disabled girl. It’s hard to watch so many families who have healthy kids running in and out of their SUV’s with such ease when it takes us so long and with so much equipment just to get dressed and out the door for anything. It’s hard to see normal families move about so easily. They just tell their kids to get dressed, to get in the car, and it happens. For us, it’s a hundred and one steps that we share to make that happen.

Christan:  I know Claire’s had several surgeries.

Matthew: Yeah, those are the worst. She’s had a lot. I can’t even remember all of them, and there will be more ahead. You talk about suffering. Our family suffers when she suffers, and with a surgery it can be months of hard recovery. Cut bones and muscles don’t heal quickly or easily.

Christan: Do you ever blame God?

Matthew: Sure. We know that He is ultimately responsible for our daughter’s disabilities, in the same way that He is responsible for our abilities. We could blame the doctors or Satan, but from the beginning we felt that God was involved in the whole process — from Claire’s near-death in-vitro trauma, to her birth, to her life. He has a plan that is far more difficult than we’d wish on anyone, and we trust there is a greater purpose in it all. But believe me, we’d do anything to heal our daughter and make her fully able. I deeply despise her disabilities, even though I love her to the ends of the earth. Someday, she will be free of all the pain, all the problems, and so will we. I trust that someday, it will make sense and be worth it all.

Christan: Did you ever blame yourselves?

Matthew: Sure. There were a few signs that things were not right, but we went with the protocol, the logic, the medical advice, and waited. Kelly wishes that she’d gone with her gut feeling and went in two days earlier. But hindsight is 20/20. I’m sure the doctor wishes he’s been ultra-conservative and delivered sooner, but again, his logic and protocol said that it wasn’t as big of an emergency as it ended up being. Could it have been avoided? Yes. Was it reasonable to expect the trouble that was brewing? No. Only hindsight is 20/20.

Christan: Has parenting a child with severe disabilities ever threatened your marriage?  Has it helped it thrive?

Matthew: Most marriages in which there is a disabled child end in divorce. The rate is about 85%, I’ve heard. I understand why. The mother will pour her whole life into her one child, and the father will lose his wife and gain a tremendous amount of stress. And it’s over. I get it. On the other hand, the 15% who stay together may have some of the strongest bonds. Our marriage has been tested, and it’s been tough, but we’ve leaned on each other in the deepest ways. I think Kelly and I are a strong team. You have to be “all in”.  There’s no middle ground. That said, it makes a tough thing like marriage a lot tougher.

Christan: How did the Church help you in your grief? Does the Body of Christ still walk with you twelve years later?

Matthew: The Church helped us in our grief to some extent. We probably should have sought out lay counselors that our church provides and probably should have been more proactive about getting counseling from the start. Our church has been supportive, but only a very small handful of people at church even have a clue about what our life is like on a daily basis. Even those with disabled kids don’t get it, since their own kids’ needs are totally different than ours. But we don’t expect much from the Church. We go to worship and be a part of other Believers. We don’t expect the Church to meet our needs.

Christan: How do you keep from being resentful?

Matthew: Prayer. The truth is that we are resentful. We’re jealous of the life others have, the life we want. We’re not thrilled with our lot in life. We hate cerebral palsy, epilepsy, and intellectual disabilities, although we love our daughter.

Christan: What are your long-term goals for Claire?

Matthew: To be happy, healthy, and involved in rich relationships with people who love her. Same as most people.

Christan: What advice can you give on how to treat people who are disabled?

Matthew: Treat them as normally as you can.  Don’t think of them too highly or too lowly. They don’t want pity. They don’t want to be trophies. They just want to be normal. Talk to them. Interact with them in any way that you can. Don’t assume that they are different. Assume that they are the same.

Christan: How has God redeemed some of the pain and heartache?

Matthew: Well, I see the role Claire is playing in others’ lives. She’s 12 and has changed more lives than I have in my 41 years. She has a special ministry to others. She meets others’ special needs by giving them her full attention, hugs, smiles, laughter, and all sort of nonverbal gifts. She makes people feel loved. She inspires people everyday. It’s beautiful. She can’t do much, but she can love.  Hmmmmmm… I Corinthians 13.


In an effort to be polite, we look away from those in wheelchairs and tell our kids not to stare.  But maybe we can start affirming all are made in God’s image by making eye contact.  And then smiling.

In his original dialogue with us, Matthew concludes with a reminder of what’s truly important — loving others. It sounds like such a simple command — Love God. Love others.

However, our abilities, our awareness of the culture around us, and our desire to preserve our self-worth cloud our purpose time and time again. But Claire, inhibited in a severely disabled body, becomes our tutor to love others without boundaries.

Let’s love her back.

Join me again on Wednesday as Matthew gives an update on their family. We’ll hear how his situation has changed in the past four years. We’ll hear how he has changed, too. Matthew will bravely reveal what he’s still wrestling with and what redemption has risen out of his suffering.  

See you tomorrow.

Race, Culture, and the Church

(Happy to be writing over at the new blog of Greentree Community Church today. The original post is published there.)

paper-doll-family

Jesus’ human lineage teaches us that the unconditional love of God is limitless and without prejudice. – Tom Ricks

“Some of us in the 5th Grade Sunday School class think the new Greentree logo looks broken,” my eleven year-old daughter confessed as we walked out of church May 16.

We were walking to our car, and we were excited to dig in, branch out, and live it up. We could sense the enthusiasm of the Greentree staff that morning. Yes, after almost twenty years, God is still working at Greentree. And our leaders are responding to an ever-changing culture and community, seeking to be relevant within Saint Louis.

“It does look broken,” my husband agreed. “And that’s perfect, don’t you think? Brokenness is a theme here at Greentree. Really, it’s a theme of the Gospel. I’m glad we’re at a church that admits we’re broken and need a Savior.”

My mind went to my own interpretation of the logo and my love for the different shades of green displayed. Is God calling us to more? I wondered. Could He be challenging us to get comfortable with diversity within Greentree Community Church?

GreentreeMiniLogo

And I couldn’t ignore it — the brokenness and the cross, well, they were right there in the middle of diversity. I see it every time I look at the new logo. I can’t help it.

We serve a God who is in love with diversity. He created it. He decorated the earth with over 23,000 types of trees. We know there’s at least 15,000 species of fish in the sea and the list keeps growing. There’s countless variances in mountain ranges spanning the globe. Our Maker intentionally fashioned a dwelling place for people that bursts forth with variance in the natural world. And in the human race.

But it’s been quite a year here in Saint Louis, yes? Painful experiences untold for years are finally surfacing around dinner tables and locker rooms and office cubicles, and I hope, churches. Have we been too quiet?

Discussions on race and culture usually force us to dance to the rhythms between hurt and healing, resentment and forgiveness, misunderstanding and reconciliation. We’re at a point now where we have to choose our path. Are we going to ignore? Or are we going to walk toward deep self-reflection as it pertains to relationships and living in community? There are our neighbors, and our co-workers, and the family at the pool, and yes, even our relatives. Some of them look like us and some don’t. Sin has stained our country’s history and we’re still sorting through the fragments. It’s uncomfortable. It’s our reality. It’s necessary.

“Jesus’ human lineage teaches us that the unconditional love of God is limitless and without prejudice,” challenged Tom Ricks as we explored our spiritual family tree last Advent season. Our counter-cultural God — He woos me out of judgements and man-made religion.

Can you see our spiritual ancestors — the murderer, the adulterer, the prostitute, the forgotten — all in desperate need of a Rescuer? Can you see God choosing people with heaps of baggage? Can you see Him bringing together diverse people taught to hate and mistrust one another as He writes His Rescue Story for generations to come?

The Gospel message, well, it’s different than what we’ve sometimes made church out to be. The Gospel extends beyond masks of perfection, beyond man-made neighborhoods still segregated by race and class, beyond our enslavement to what others think of us. God intentionally wove people into His ancestry whose aches left them longing for the cross.

Are you aching, too? Join us then.

On Saturday, June 6, we’d love to have you at Greentree’s forum “Kirkwood, Race, and the Church”. We’ll gather at 6pm in the North Kirkwood Middle School cafeteria, 11287 Manchester Road, 63122. Together we’ll choose to not look away, avoid conversation, or isolate ourselves. Together we’ll simply listen. We don’t know what we don’t know. The panel will even include a few African Americans who’ve been asked to reveal their experiences of living in Kirkwood and Saint Louis. How can we better engage with those who have different cultural experiences? How can we live intentionally? We’re thankful for all the panelists who have graciously agreed to share their stories with us.

When You’re the One Grumbling

Grumbling

Hurt people hurt people.

We’ve all heard it before — that explanation for another’s behavior — that justification for wound-inflicting words — that “place of acceptance” begging us to extend grace.

I’ve walked the road of forgiveness only to walk it again. Have you gone on the journey twice — or maybe several times — because you can’t quite dwell at the destination? Because your heart’s so restless you can’t rest in that renewed place? Yeah, me too. It’s like we’re all travelers clutching our own bags — our own baggage — back on that same path to letting go.

I’m walking that path right now, but it’s no one’s doing but my own. I’m walking the road toward forgiving myself this time, and gosh, I hate the journey even more. I’ve cried at being the victim, but the shame of being the perpetrator is so heavy it wrenches tears out of me I didn’t know I had.

Don’t be so hard on yourself, my people say. I even whisper it to myself, Hurt people hurt people. It’s just sort of unavoidable.

But we were made for more.

I was hurting, and my pain got the best of me. It dulled me to all things beautiful. And when you can’t find beauty, our souls wrestle in angst, and our mouths just sort of follow. We lose perspective and then mindlessly react. At least I do.

Finally, Peter writes, Finally, all of you, have unity of mind, sympathy, brotherly love, a tender heart, a humble mind.

Peter, the former racist. Peter, the one with a crazy temper. Peter, the wound-giver. The guy you would have wanted to avoid collapsed into grace and started challenging us to live in community.

We stare from afar with our pointing fingers and feel good about ourselves for a moment — until we dare to look and see ourselves in the drama, too.

I’ve chosen to talk when I should have remained silent. I’ve chosen to talk when I should have remained silent. Have your grumbly thoughts ever spilled onto others? You feel relief for a second before you’re carrying the burden again for days. Complaining is exhausting. Grumbling is draining.

Has Satan made his way into your “authenticity”? He weaves himself into my conversations and before I know it, he’s blown everything out of proportion. And yes, I’m trying to be real, but if I don’t watch it, my enemy even distorts that, too.

My fleeting moment of venting wasn’t so fleeting after all. And I find myself worshiping what I complain about.

In these moments, my realness, my transparency, is doing anything but fostering unity and sympathy and love and tenderness and humility. My words hang out there, picked up by whomever is hungry, and then twisted and repackaged and delivered to a whole new audience.

Unity and sympathy and love and tenderness and humility — its all so random. But maybe not.

When we take a risk and dare to heap on sympathy and love, somehow unity is unavoidable. My eyes open up to the big picture, and my quiet rage and unforgiving spirit and grumbly heart don’t seem so useful anymore.

Somehow I can see the forest through the trees again, and my perspective becomes much bigger than my own drama. My grumbling and my complaining, well, I see them for what they really are — tools to help others lose perspective, too.

It’s hard to discipline our minds, to hold fast to the larger perspective, and to be led by humility. But in those moments, I’ve found sympathy and love and tenderness for others in the deepest places of my heart.

Hurt people hurt people.

Yes, I’ve been hurt. And yes, I’ve done the hurting. But by His wounds I am healed, and He heals those I’ve hurt, too.

Thank goodness. Thank goodness for that cross. Mercy.

I may just walk that road toward forgiveness throughout my lifetime. There’s always something to forgive — always. But the longer I journey, the more resting I do. I find crevices of His grace wooing me to linger in His restoration, pausing in His redemption, a little longer each time.

photo by Kevin Lee on Unsplash


This post can also be viewed as a guest post on the blog of Greentree Community Church (St. Louis, Missouri).

Pain. Even on Vacation.

sunriseI ran, and I felt the sun wake the earth. I saw my husband discover his childlike joy again. I watched dolphins from a rustic dock.

Community with family I rarely see. Restoration from life’s weariness. The reminder the world is much, much bigger than our everyday. All gifts. All grace.

But pain is often part of the Puzzle we’re trying to piece together here on earth.  Even on vacation.

jellyfishAnd with experiences only the beach can etch on our hearts comes the sting of the jellyfish.  The oldest grandchild, the youngest grandchild, and the husband discovering his childlike joy again after life’s deeper sting – all victims of its randomness.

“Why did God make jellyfish in the first place, Aunt Christan?”

“When exactly did jellyfish start stinging people, Mom?  Was it before or after the Fall?  Before or after sin entered the world?”

Together we pondered marine biology and ancient history and theology.  And I winced.  I still cringe today, for my daughter’s sting was so tiny compared to the pain she’ll face as her life unfolds. Sometimes its easier to look back on the mysteries of history instead of looking ahead.

And the Puzzle, it can be so frustrating, but we keep coming back for more. We try and fail and try again. We work with the hope of wholeness. Work toward restoration.

We were made for complexity. Made to wrestle the deep. And the unsatiated longing keeps us going, keeps us piecing together the mystery until every piece is in it’s place.

We’ll be piecing until the dawn of eternity, connecting pain with beauty, suffering with wholeness, heartache with understanding. Yes, we’ll be piecing until each fragmented piece becomes peace forevermore.

We have no reason to despair. Despite the fact that our outer humanity is falling apart and decaying, our inner humanity is breathing in new life every day. You see, the short-lived pains of this life are creating for us an eternal glory that does not compare to anything we know here.  2 Corinthians 4:16-17

Help me see You, God, amidst all these pieces. Help me want to see You. Guard me from bitterness as you grant the hope of a mystery fulfilled.

Calm me when the Puzzle isn’t beautiful yet…when I’m too scared to pick up another piece.

photos | Tybee Island, Georgia, usa


This post can also be viewed as a guest post at the Greentree Community Church blog (St. Louis, Missouri).

3 Ways to Stop Being So Busy

busyWe had just emerged from another evening meeting, but I wasn’t ready to emerge back into my life.

“I don’t know how I got so busy,” I confessed to a friend.  “I hate living like this.  It’s as if every hour of my day is planned before I even step out of bed.”

Spreading myself thin with numerous volunteer commitments, I was getting more anxious by the day.  With each new request to organize, lead, or simply get involved, I found myself surrendering my time.  And then resenting it.


relevantTo read the full article, head over to RELEVANT magazine where I’m writing today.  Uncluttering our schedules helps us run to what’s important.  Can’t wait to hear what you’re running to.