When You Have to Get to Know Your Kids Again

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As I write this, I’m sitting in a hotel room in New York City while my family is still asleep. I just noticed the last time I published a post on Repurposed was March 20 — almost three months ago. When I grow up, I’d like to blog for a living. But I do believe living a purposeful life sometimes involves pressing “pause” on dreams, rolling up your sleeves, and living the life in front of you.

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(J.K. Rowling)

We’ve been going hard for the past three months, and while I’d like to attribute my silence to our busy work/play/sports schedules, in reality my quiet season is due to something deeper than a crazy calendar. You see, we came up for breath the week of Spring Break, and I realized I hardly knew my kids anymore.

“The days are long, but the years are short,” my friend Jennifer cautions. Indeed. Where has the time gone? I felt like I was keeping up, soaking in every new stage of their childhood. I actually enjoy entering new stages, and I don’t grieve the passing of time. But somehow, this school year swept my son and daughter away and brought back a teen and almost-teen that hardly resemble the kids I’ve been raising the past several years.

It’s rather humbling. If you like control, this experience can really rock you. And if being the most amazing parent has been one of your goals, you have to wrestle with some deeply buried idols. You wake up in the midst of your kids’ middle school years and discover parenting is not about you at all.

Gone are the days when choosing your kids’ outfits tells the world what your sense of style is. Gone is the season when you plan a fun day of activity and everyone goes along with enthusiasm. (And the affirmation you give yourself vanishes, too.) Gone are the moments when you can predict what your child’s response will be. (This might be the hardest one to let go of, for when they surprise you with unforeseen preferences, you feel like you don’t know your kids as well as you used to. And that’s kind of scary. And sad.)

Back to the blogging silence… When you’re humbled and realize how little you know, you sort of don’t have much to say. We’ve all heard how listening is usually better than talking, and these new identities have given me reason to be quiet. I have way more listening to do because I’m getting to know my children again.

I recently attended my school’s Arts Extravaganza, and the choir sang the sweetest poem:
A wise old owl lived in an oak;
The more he saw the less he spoke;
The less he spoke the more he heard:
Why can’t we all be like that bird?
– Henry Hersey Richards

Um, yes. The more he saw the less he spoke; the less he spoke the more he heard. Their little voices sang this phrase over and over and this middle-aged mommy was quite convicted.

When you bring your kids through the elementary years, you talk a lot. At least I did. When I carry on this tradition with my middle schoolers, they don’t sit there like sponges anymore, waiting for my next insight. Instead, my words are met with stiffened backs and faces that silently say, “You’re not hearing me. You’re not even trying to listen.”

And they’re right.

“Train up a child in the way he should go;
    even when he is old he will not depart from it.” Proverbs 22:6 esv

I used to read this verse through a me-centered lens, almost as a guarantee to cling to when the going gets rough. I wanted it to say: Train up your child in the way that will help her make respectable choices (spiritually and morally), and when she’s old, she’ll still be living that dream of yours for her life, making you look good.

But slowly, and sometimes reluctantly, I’m choosing to read it through another lens: Parent your child, accepting the way God designed him and helping him discover the story God has written for his life. And when he’s older, he’ll still be living a life of purpose, in sync with God’s plan from the beginning of time.

This refreshed interpretation, well, it’s a lot harder because I don’t get to work hard when I’m frustrated or irritated or down right angry. (Have you noticed we don’t sit idle when we’re angry?) It’s a difficult interpretation to swallow, for it calls me to trust and not do.

What would it look like if we listened more… not just to be polite or to avoid looking overbearing? What would it look like if we listened with the intention of learning and discovering and understanding?

Are you with me? As I parent a middle schooler and rising high schooler, I need to learn God’s story for my children’s lives. I must discover what they would have told me the past several months if I would’ve just stopped talking. And I absolutely have to understand what passions are there beyond those teenage faces staring back at me.

What about you? Who do you need to listen to more? What topics do you need to hold your tongue on for a while, with the intent of learning and discovering and understanding more? You might not be parenting teenagers, but I know you’re wrestling, too. It’s the world we live in — whether you’re trying to be intricately engaged with your local community, or you’re yearning to be a global citizen, or you’re somewhere in the middle.

Your active listening might need to take place in your workplace, or your yoga class, or as you research and write a book. For me, I’m simply going to start at home as I get reacquainted with my kids.

Trust.

IMG_2848There’s heaps of awesomeness about raising teenagers, too, like snapping this selfie at the top of the Empire State Building at 10:44pm.  🙂

Series on Suffering: Losing A Spouse (Update)

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We resume Susan’s story of losing her first husband with an update. A lot can happen in four years — especially when you’re adjusting to a new marriage, raising middle schoolers, forging new paths in your career, and getting to know a new community. Read on…


How has your situation changed in the past four years?

Oh, so much change! I’ve now been remarried to Todd for almost six years, and three years ago, God called us to a great adventure, which included moving our family to Kansas City. New city, new church, new jobs, new friends. Now three years out, I can see how God has pushed me to corners of myself that I didn’t even know existed. I’m so grateful for the growth and refinement.

One of the biggest changes for me has been my job. I’m a bit of a nomad when it comes to my occupational pursuits, following my heart and God’s leading, and I’ve never been disappointed as to what I have learned on my journey. After serving as a teacher in independent schools for many years, I’ve landed back in public education as a learning coach in a project-based learning environment designed to empower creativity and equip students to be architects of a better world. For years, I’ve had ideas and desires to transform the learning experience for all kids and, while in St. Louis, I continually encountered roadblocks. It was as though God kept saying, not yet. Now, He has given me the opportunity to pioneer forward and be a part of something transformative.

How have YOU changed in the past four years?

Besides the gray hairs and wrinkles, over the last four years, God has continued to refine and humble me. The older I get, the more I understand my depravity and my need for a Savior. The first year we moved to Kansas City felt much like moving to a desert. Lots of anger, resentment, grief, pride. It was a lonely year for me trying to figure out who I was as a mother, as a wife, but, most importantly, who I was as a child of God. I no longer lived in the comfort of my hometown, my community of friends, nor my job – three things that had shaped so much of my adult life.

It’s been a rather arduous journey, but God has been faithful to continue His work in me to transform my heart. As much as I want to think “I’m all grown up and finally arrived at maturity,” I would be deceiving myself. Every uncomfortable situation I encounter, every painful trial I face, every joyful moment I experience–I’m learning more about the power and work of Christ in my life.

What are you still wrestling with?

Two of my greatest sin patterns are anxiety and fear. At times, I think, “Really, Susan? With everything God has done for you?” But, like faceless thieves, they creep in periodically, stealing my attention away from God. Some of my biggest fears and anxious thoughts are about my children. As my boys have grown, I see God’s hand in their lives, but I also see the effects of trauma and loss at such an early age. I tend to brace myself with the worse possible scenario, seeing the future through my human eyes. I continually redirect my thinking to God’s sovereignty and His abundant love for my children.

How have you seen redemption come from your suffering?

As a teenager, I used to think redemption meant “God sweeps in, God fixes problem, we thank Him, and life continues.” At 16, suffering meant the disappointment of not making the lead in the musical or wishing the boy I liked returned my affections. Thankfully, I’ve grown. One of the greatest takeaways from my suffering has been a deeper understanding of God’s redemptive hand in our lives. Understanding redemption, at least how I make sense of it, is believing and living the gospel. Though I will never feel nails in my hands nor wear a crown of thorns, I have learned that the more I lose and suffer in this world, the more I gain in understanding the redemption story. His sacrifice on the cross, His pursuit of my heart, His faithfulness in all my earthly sufferings—there I have known grace and redemption and love and compassion.

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So there you go — open and raw honesty for the past four weeks. While four stories and updates provide a window into the lives of ordinary men and women, I’m convinced many of you are doing more than peering through the glass. Maybe you have been cut by its jagged edges and could tell similar stories.

It’s never easy to read a story of brokenness and know you could be writing it, too. But recognizing is the first step toward claiming hope, toward believing that redemption really can happen.

A few years ago I sat in a class about doubting God’s goodness due to the rampant brokenness in the world. Oppression. Injustice. Invasions on our mortality. Reminders of our fragility. Fear.

While I can’t say I understand the mind of God with any more clarity, I did walk away speechless.  The very God who wrote a love story at the beginning of time included His own suffering in the darkest chapter. Did you catch that? The very God who wrote a love story at the beginning of time included His own suffering in the darkest chapter.

But unlike human suffering, our Author suffered with power. He could have defeated or even prevented His own suffering. But He wrote scene after scene in which He Himself was abandoned, misunderstood, mocked, tortured, betrayed.

So where do we go from here? What we do with the stories of Matthew, and Jami, and Julie, and Susan?

I dare you to look inward today. By seeing our own pain mirrored in these stories, we walk in realness. And that’s the first step toward healing. How can we ask for redemption when we’re not authentic about how our lives have really turned out? And how our situations – and hearts – are crumbling around us?  And how we’re devastated?

Yes, be real. Be honest… first with yourself, and then with someone else. And then together, walk boldly into the mess and watch redemption take place. Watch God restore and re-create your story into something more beautiful than it ever was. His project may take years, but please check in with me during the restoration process. You’re not alone, and I’d love to hear how you’re doing… even on the hardest of days.

Stop by next week for a reflection on what I personally learned through this Series on Suffering. But for now,  take the ancient words of Isaiah with you: “My thoughts and My ways are above and beyond you, just as heaven is far from your reach here on earth.”

Oh, to know the mind of God! But of this I’m sure — the pain of your heart is no surprise to your Maker. He embraced it Himself.

photo source | jen palmer

Series on Suffering: Miscarriage & Infertility (Update)

miscarriageWelcome back as we come together today to hear the unfolding of Jami’s story. I wish I could tell you they waited patiently and got pregnant and delivered a healthy baby.

To everyone who has begged God for something and is still waiting, read on…


by Jami…

At this point in my life, I can attest that God loves redemption. The ending to my infertility is not what I would have designed, for I would have written pregnancy into our story. But God’s ways are always better — even if we can’t fully reconcile the ending yet.

After my interview for Repurposed four years ago, we kept trying to conceive. From time to time, I learned to find contentment and accept our situation. Honestly, we were so tired of the struggle and longed for things to be easy.

One day a friend asked if we had considered adoption. We had. We had thought hard about it and even had a crate of pamphlets and applications at home. But it seemed daunting and expensive and so unrealistic. She contacted me again the next day with a call that would change my life.

“Would you really be open to adopting?” she asked again gently.

Not only did my life change with that call, but my view of how God works will never be the same.

A pregnant woman was living at a shelter and couldn’t parent her child. We were introduced, and she felt comfortable with us. Three months later we had a new member in our family named Jaden. We were now parents of two sons, and Tate had a baby brother.

Just like that.

I tell everyone, “You can’t help but see God in Jaden’s story.” Adoption points to a God who knows what we need and fills in every fragmentation. Where there was barrenness, He filled my arms. Where there was emptiness, He made us complete.

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But we had no idea our story of struggle was shifting. There we were — with our dreams come true — awakened into another harsh reality.

From the time he started crawling, Jaden got large bruises on his knees. They were large with huge knots in them. I’d show them to other moms who would dismiss the seriousness of these bruises. But it didn’t feel right to me. I wasn’t a first-time mommy. I had seen bruises with my first son, and this was different. One day his foot caught between the slats of his crib, and his ankle swelled. Another time he got his fingers pinched in a drawer, and his hand swelled up so big the doctor assumed a fracture. But the x-ray showed no break.

Blood tests were ordered, I started to panic, and we learned Jaden’s blood had a low level of a clotting factor. We were sent to a children’s hospital two hours away, and after more blood tests, our son was diagnosed with hemophilia.

Our son was diagnosed with hemophilia.

When the hematologist was explaining the diagnosis, it was if I left my body. I wasn’t mentally present when I was supposed to be listening, and I still have little memory of that day’s events. All I remember is holding the child of my heart close, trying to keep him occupied. My husband, Jim, had to relay all the details on our drive home. And that is when I shed my tears. Our exhausted baby, who had been poked too many times with needles, slept in the back seat, and I let the tears flow. I cried and cried and cried.

The next few weeks was a blur of trying to give Jaden his medicine. There were so many hurdles. His veins are so small, and it was quite a challenge to find someone in our small town who could access him without doing too much damage.

After much thought and more wrestling, we decided to surgically get Jaden a port in his chest for his infusions. The thought of my 21-month-old boy getting an incision near his heart and in his neck made my heart race. I tried to picture myself sitting in the waiting room but couldn’t manage to picture anything calm.

The surgery was difficult. Jaden’s veins were hard to work with. They tried on the right side. They tried on the left side. He eventually had a needle in his arm which gave him a constant dose of the clotting factor.

After surgery his port was continually accessed for a week, and our education began. A home health nurse came once a week, and we watched her give Jaden his factor. After only a few weeks, it was our turn. This was one of the scariest times of my life. We continue to navigate this road together. All of us, even our 11-year-old Tate, are working together to keep our family healthy. Currently Jaden gets two infusions weekly of a clotting factor that prevents him from getting bleeds, and we give him the infusions right at our dining room table.

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It’s overwhelming sometimes. But God placed Jaden with us because we are the best family to keep him safe and give him what he needs. What a privilege it is.

Sometimes I get angry and want to scream, “God, what in the world were you thinking?” I’ve never been good around blood. It makes me queasy, and needles make it even worse. I hate it. I hate putting the needle in Jaden every time. I hate the fear of not getting it in right. I hate the thought of hurting him.

As I sit in front of my now 2-year-old son, needle in one hand and grasping his port in the other, it feels like a cruel joke. How could God give me this task? But I do it. I access Jaden. He thrives. The bruising is gone. And we do this cycle over and over and over. What feels cruel brings healing. What feels cruel brings healing.

God has given us everything we need. He gave me Jim who is strong and incredibly sacrificial. He has given us people who encourage and support us. And our family — I really don’t know where we would be without our extended family. He gives me strength to open my eyes and get out of bed. He gives me endurance to keep giving Jaden what he needs.

After all of our struggle — the miscarriage, infertility, adoption and now hemophilia, I am very aware of God working in our lives. James 1:2 says to consider it pure joy when we face trials because it produces perseverance. I can testify to that. Our life IS that verse, and I know when it’s all finished, we will be mature and complete, not lacking anything. Not lacking anything.

We put seven years into waiting for another baby. To this day, it feels like a lot of time wasted on sadness. We look back, though, and see why we needed to wait. God had the perfect plan. He knew we needed to be ready for Jaden. Money was in place, people were in place to move things along, friends and family were ready to come along and support us. Also, Jaden’s birth mother was so calm and ready to let us love and care for this long desired baby.

The waiting, the adoption, and the hemophilia care has changed us. Our son, Tate, has become so compassionate as he watches Jaden grow and helps him through hard times. He loves fiercely with a loyalty that amazes me. Jim and I have learned to lean into each other even more, something I never thought possible after a miscarriage and infertility. God says the two shall become one, and it seems as though we are. Jim is so devoted and involved with Jaden, and they have a bond that is beautiful. Hemophilia has made us more confident. When you are “playing doctor” in your own home and succeeding, it gives you so much confidence.

God says in His Word He will give back what the locust have eaten, and I always think about Job getting back more than he had before. I know it is true for us, too. I look at my boy, and he makes the waiting seem so long ago. Our season of suffering seems so small when I sit in the presence of my Savior. He is teaching me to rest in His presence and rely on the power He gives through the Holy Spirit. I will rest, and I will rely. Day after day after day.

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photo source | mili vigerova

Series on Suffering: Parenting A Disabled Child (Update)

 

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Welcome to Day 2 of *Matthew’s story. Yesterday you met him, the dad who bravely exposed his heart by giving us a glimpse into family life with a severely disabled child. His daughter can’t walk or talk, yet her personality is one who that would dance and converse all day long if she could. Throughout this Series on Suffering, our guests will not only be giving updates four years after their original interview, but they’ll be getting real about some specific aspects:

  • How has your situation changed in the past four years?
  • How have YOU changed in the past four years?
  • What are you still wrestling with?
  • How have you seen redemption come from your suffering?

May we be people who live reflectively. May we always acknowledge how we’ve changed at the core by interacting with our world and the people in it. May we recognize the light of redemption instead of being swallowed up by the shadow.

*All names have been changed.


How has your situation changed in the past four years, Matthew?

In the last four years, we have not had a major life change of any sort. However, there are definitely some significant shifts. First, our daughter has grown physically. She now weighs over 100 pounds and is over 5 feet tall, so it is no longer easy to move her, even with two people. It takes more time, equipment, skill, and people to do the basic tasks, such as getting dressed, bathed, positioned, toileted, and active. And the danger is greater for her or her caretakers to be injured in the process, especially if she is not cooperating. It can be a wrestling match at times, and it can be upsetting to everyone involved. And that leads to the second shift.

Second, Claire is far more emotional now that she is in the midst of puberty. Her emotions swing wildly, quickly. Much of this is related to her high need for a social life. She is a true extrovert who loves people, and she can’t get enough of people, which is a tall order to fill daily.

Another shift is that we can’t travel with Claire any more. It is just too difficult for everybody, and the upsides are so small and so few. So we take very short trips without Claire, and we do some “staycationing. ” Travel is something we look forward to doing someday in the distant future. Claire loves routine. She wishes every day could be a school day with all the people and the routine and the safety and the fun. So, we do the best we can to create an action-packed daily routine, anticipating problems to solve before they happen.

Our life with our son has changed a lot in the last four years. Jonathan is now 17 and very independent. We have had to let go of controlling so much, and we have to dance around his emotions, his needs, and his opinions. In just 18 months, he will be off at college somewhere. That’s a huge change coming soon that we are not looking forward to, but we trust that it will be fine when the time comes. We are starting to think about life without him in the house. It’s a sad reality of a future of caring long term for one disabled adult, rather than two teens.

I think things will feel different if Claire’s mood swings settle down, around the time Jonathan goes to college. We hope that things get better as she matures into adulthood, but our experience so far is that things don’t get easier. Normal just shifts.

Another thing we think about more often now is Claire’s adult life. We don’t have a clue how long she will live, and I’m not sure which is more overwhelming: losing Claire or living with her for the rest of our lives. We try to trust God for that, but it’s a new challenge.

How have YOU changed in the past four years?

I think we are tougher. We can handle some really big problems with relative ease. Sometimes we listen to our peers talk about their troubles with their kids or spouse or mother-in-law, and we can’t relate. Their troubles seem so petty, so easy to deal with. It’s hard to empathize, and we can get resentful or just disengage from them. We’ve lost quite a few friends over the years due to the vast differences in our problems.

Kelly and I have to be allies. Our marriage must have unity and love. We must care for each other. It’s a do or die situation. In reality, our marriage has gotten stronger in the last four years. We have learned that our spouse is not the enemy. We go after problems, instead of each other. It’s not that we don’t argue, but those arguments usually end in unity, as we face our problems side by side.

Another change is that my wife and I have had our fair share of medical problems in the last four years. Our health is essential to the family, so we are getting the medical care and taking care of ourselves better. It’s all related to sustained stress and exhaustion. Again, it’s a do or die situation. Neither one of us can afford to be sick or diseased or die. It’s a team issue.

What are you still wrestling with?

Our condition is chronic. We are still dealing with the relentlessness of caring for someone with so many needs. Maintaining life requires both of us working hard and being super responsible. We don’t get much free time. We don’t have much of a social life, not many friends who we do fun things with. We sometimes feel like we are not individuals with hobbies, dreams, choices, etc.

My wife is running two small businesses: The larger one is the busyness of caring for Claire’s physical, intellectual, and emotional needs. It’s a full-time job. In addition, she runs a part-time business (15 hours per week) tutoring kids, who also have special needs academically.

In addition to the daily hard work of meeting our daughter’s needs (as well as the rest of the family’s needs), there is always the weight of responsibility for Claire. Her physical survival, her emotional wellness, her intellectual stimulation, and her overall development are each heavy and relentless. So, even on our occasional weekend getaways, there is always a heavy sense of responsibility that never leaves. We know that someone must always be looking out for every need (seen and unseen) in Claire’s body, mind, and spirit. And each year that goes by, Claire is more and more aware of what she needs and how much she depends on others to help her. If she is not cared for well all the time, she can get very scared, very sad, very sick, or all of the above in a really short period of time. She is fragile in one way or another, especially now in the middle of puberty.

How have you seen redemption come from your suffering?

Claire touches people in deep ways everyday. She brings great joy to people each day, That alone is a whole lot of redemption.

In addition, Claire’s special needs have created a need for selflessness in our family. Any small amount of selfishness is glaring. That has caused trouble, but it has also created character. Our son is a kid who has grown up around people caring for another person. It’s the norm. He has seen dozens of PTs, OTs, PCAs, RNs, and babysitters who care selflessly for his sister. His parents require him to pitch in and help around the house because it’s what we all must do. He has been raised in a house where prayer is essential to get through the normal days, as well as the really rough times during surgery recovery and other times of sickness. He has character beyond his years because of it all.

All these young women who come to help Claire are learning about family life. So many of them — young women in their 20’s who are often engaged to be married — get to witness up close what a strong marriage and family looks like. They see the reality, and they see that we all love each other and work together most of the time and pray and somehow make it work. Many of them tell us how valuable that is because they come from broken homes and have never seen a family eat meals together, cook and clean together, play games together, and tease each other and still like each other. Kelly mentors them in an informal but powerful way.

We know that God provides in times of great need. We know that things always get better because God redeems the hard times. So when Claire had a full spinal fusion surgery two and a half years ago, we knew that God would sustain us in the difficult recovery that was so difficult for so long. It got better. Good things happened both physically and relationally because of the tough times.

We believe that Claire’s life, no matter how long it lasts, is bringing love to many people and building the character of many. All of that honors God.


My goodness. I’m reading Matthew’s update, and I have a range of emotions. Do you, too? How does his story challenge you? What steps does it motivate you to take? How are you challenged to love others, pursue community, and sacrifice more? We have a lot to process already, and our series has just begun.

Join me next Monday as we peek into another type of heartache… the all-too-quiet suffering of miscarriage. Do you know someone who has lost a baby before her child’s lifetime even started? Do you have a friend who tried to move on, but the grief won’t loosen its grip? Yeah, me too. Together we’ll come to listen. We’ll come to learn. 

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.

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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.