Series on Suffering: An Eating Disorder

eatingdisorderIf you’re just joining us, we are in the middle of a four-week Series on Suffering. We’ve heard from a dad of a disabled girl and a woman who miscarried and adopted a son who was later diagnosed with hemophilia. The original Series on Suffering was created back in 2012 and appeared on my first blog. I’m posting those interviews with these brave people this whole month, but I’m including an update — written by each of them — on how they’re doing in 2016.

Also back in 2012, I published a series on body image. Today’s story — Julie’s story — was actually part of that body image collection rather than the Series on Suffering. It fits well here, though, among the stories of suffering, and for some reason I felt strongly compelled to include it for you all at this moment in time. May God’s story of redemption reach even the most hopeless of situations… including those plagued by anorexia and bulimia.

Be sure to return to Repurposed tomorrow, for Julie has prepared an honest and vulnerable update on all that’s unfolded since her first interview.

Even if you’ve never wrestled with an eating disorder, many of Julie’s wounds might be mirrors to your own. We just respond to pain differently. Read on, my brave friends…


The Pain Is Born
I grew up in a family with both parents and was the middle of three daughters.  Because my parents had high expectations for their children, we always felt the pressure to perform.  Perform perfectly.  I grew up thinking that to be loved I had to be perfect.  I desperately wanted my mom and dad to love me and to be proud of me.  Looking back, I now understand they did love me, but they didn’t show love the way I needed it — through words of affirmation or physical touch.  They never gave hugs or said “I love you.”

My sisters felt the same pressure, but I never felt I measured up to them — especially my older sister.  She’s quite intelligent and performed exceptionally well in school.  Really, in all she did.  I discovered in fourth grade that my younger sister was also especially gifted.  While I was smart, I wasn’t as smart as them.  And because my family put a lot of importance on intelligence, grades, and success, I felt like I was always the one behind.  As a child, I decided that if I couldn’t be the smart one, I would be the “good” one.  I followed all the rules and did everything my parents told me.  And I was very successful at this — all the way through high school.  I played the role of peacemaker in my family and tried to be perfect at being good. 

But I was empty inside.  I had no genuine relationships.  All my worth hinged on the fact that I was “good.”  In high school, I realized I had gained some weight and was slightly bigger than my older sister.  I wasn’t okay with this, so I began to diet on-and-off.  I even tried diet pills.  I’d lose a little weight, stop dieting, and then gain a little back.  For two years.

The Pain Becomes an Expression
I went to college and was so lonely.  Loneliness was the most terrible feeling in the world.  I joined a sorority but didn’t fit in.  I didn’t make friends, and I was miserable.  At this point, I started eating for comfort.  I’d consume large amounts of food and then over-exercise to compensate.  I really hated exercising.  And for a while, I gave it up, which led to weight gain.  Back home my mom was on a diet of her own (a really unhealthy diet and exercise program), and she lost lots of weight.  I’d compare myself to her and to my sisters, and I felt huge.

I was still desperately lonely and actually thought, “If I had an eating disorder and got really sick, then my mom would come and rescue me.  And I would know I was loved.”

My parents were fighting frequently, and I realized I had no one to talk to about this.  My loneliness was so desperate that I started wondering if life was really worth living.  I didn’t want to be alive anymore, but I really couldn’t act on that feeling.  Food continued to be my comfort — almost a friend.  Eating numbed my feelings of depression.  I didn’t want to gain weight, so I started forcing myself to throw up.  I figured that if I could vomit regularly and lose a little weight, then I’d be happy and eventually could stop.

That never happened.

The Expression Becomes Flagrant
My eating disorder became a full-fledged addiction.  I could not give it up.  I used it to numb my feelings. I didn’t feel pain, but I also didn’t feel joy.

I felt completely ugly, both inside and out.  But even though I wasn’t “pretty” on the inside, I could control how I looked on the outside.  My disorder enabled me eat whenever and whatever  I wanted without gaining weight.  I felt a sense of power and rebellion against my mom (and her diets) in this. 

But in reality, the eating disorder had complete control over me.

Eventually my illness got so bad that I would binge and purge every single time I ate.  It was during this time I met a new friend named Abbey.  She pursued me and cared enough to actually confront me about my eating disorder.  I talked with her, attended a Bible study she recommended, and attended church with her.  And I became a believer in Christ.

This was a wonderful time of growth and love for the Lord, but I still was unable to give up my eating disorder.  I was afraid to let anyone in and to actually experience true emotions.

I would try to stop binging and purging, but I’d always fail.  I felt terribly guilty that I was a Christian yet could not stop this addiction.  After a while, I allowed myself to believe I was always going to struggle with an eating disorder.  Although I wasn’t binging and purging everything I ate, I was still throwing up every day.  I wanted to control my weight, but it was also a way for me to control the pain I still felt.

This lifestyle went on for six years.

The Pain Impacts My Marriage
While dating Josh, I told him I had struggled with an eating disorder in the past.  We dated long-distance, so he never really knew how bad things were, and I convinced myself that it really wasn’t that bad.

Our first year of marriage was a complete shock to both of us.  I was good at first at hiding my bulimia, but Josh eventually came to know the truth.  I fell into a deep depression again and struggled to want to keep living.  After that first year, my depression was a bit more under control, and I realized how damaging my illness was to Josh and our marriage.  I agreed to go to counseling.

My first counselor tried to help heal the eating disorder with behavioral tactics.  If I didn’t throw up, then I could do a fun activity, etc.  This was not helpful at all!  I was completely consumed with thoughts of food and my weight.  I truly thought I’d never be able to change.

The Pain Finds Healing
I found a new counselor who walked me through my past and helped me cry — helped me mourn — some of the things I felt as a child.  She helped me feel emotions, and this gave me hope that life could be different.  I didn’t want to keep hiding my binging and purging.  I was spending a lot of time and money on my bulimia, and my thoughts were constantly on food and comparing myself to other women.

At this time, I also met a woman who was two years into recovery from an eating disorder.  She gave me hope that, by God’s grace, it was possible to find healing and be free of the control my illness had over me.

I decided then to enroll in treatment for four weeks in Salt Lake City, UT.  The first day was the absolute hardest.  Much of my independence was taken away.  And because I was actually at a healthy weight, I felt like the biggest woman in the room.  After the initial shock, I adjusted to life at the treatment center.  Recovery started slowly, but I eventually realized I didn’t want to be as skinny as some of the women there.

We were asked to say positive things about our bodies, and I always said I had a good home for a baby someday.  The thought of being healthy enough to have children gave me hope for the future.

A lot of healing took place in Utah.  We weren’t allowed to watch T.V. or read magazines, so I spent a lot of time reading Scripture, praying, journaling, and doing “homework” for my counselors.  Because of the T.V. and magazine restriction, I wasn’t bombarded with air-brushed perfection on a regular basis.  I finally started to gain a healthier view of how our bodies were created to look.

Lessons Learned
I learned to listen to my body.  Am I hungry?  Or am I sad?  For what is my body hungry?  I learned to take all restrictions away from food.  If I was hungry for ice cream, then I ate ice cream.  By breaking down all the unhealthy food rules I had built up, I learned my body actually knew how to balance food on it’s own.  I learned to eat when I was hungry and stop when I was full.  I learned it’s okay to have second helpings, and it’s okay to leave food on my plate.

I also learned that if I ate emotionally every once in a while, it was okay.  It didn’t mean I had failed.  I learned to live in the gray instead of being black and white, especially in regards to eating and food.

A huge breakthrough for me was learning that each of our bodies have a “set point.”  That’s how we are created.  When healthy, we’ll hover around this set point.  That was so freeing for me.  I had been trying to manipulate my body to a size it wasn’t meant to be, to a size that God didn’t intend for me.

Ephesians 2:10 says, “For you are God’s workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do.” This message resonated with me on my road to healing.  “Workmanship” can be translated as “work of art.”  This means that I am God’s work of art.  If this was true, who was I to try to change and manipulate the artist’s work, especially when the artist is the Creator of the Universe?!  Who was I to judge what was beautiful and what was not, when God created each of us in His image, making us His work of art?!  I felt beautiful knowing that I was created a certain, unique way that was beautiful to the Lord.

This was all very helpful, but I still struggled to feel “beautiful” on the inside.  I was engulfed in shame and guilt about my eating disorder.  I was also drowning in inferiority, knowing I couldn’t stand up to the world’s expectations of perfection. I didn’t feel smart.  And now I didn’t feel “good.”

A counselor told me that those suffering from eating disorders usually let positive comments “bounce off” and only internalize the bad.  I realized I had been doing this very behavior — listening and believing all the negative things and disregarding the positive.  I sat down and listed all the things that currently made up my self-worth, most of which were negative.

I then listed all the things that should make up my self worth and ended up with “I am a child a God.”  That was all.  That is what makes me, and you, worthwhile — simply because we are God’s children, His beautiful workmanship.  My worth is not derived from what I do or don’t do — it is simply found in the fact that I am a child of God, created by Him.

I also learned to listen to my thoughts and take them captive to the Lord.  Without really realizing it, I was thinking awful things.  If you eat that, you’ll be fat.  You aren’t important  and you will always have an eating disorder, so why are you even trying to get better?  You will fail.  You are a failure — the only way to feel better is to binge and purge.  These thoughts were constantly bombarding me, and I was believing the lies.  I learned to listen to my thoughts, recognize them, and combat them with the Truth.  I memorized some Scripture and would recite it when I caught myself thinking these thoughts.

Julie Today
Recovery has not been a perfect road.  There are ups and downs, successes and relapses.  But, the relapses are less frequent and less severe as time goes on.  It’s been six years since I went to treatment in Utah, and I’m currently in my best place of recovery yet.  I realize this is a weak area in my life, and I’m sure I’m in a much better place (emotionally and mentally) because of God’s grace.

To family and friends of a woman with an eating disorder, tell her and show her you love her.  Often.  Tell her she is beautiful on the inside and out.  Don’t make comments about weight and food, but do encourage her to get the help she needs.  I needed a firm hand to lead me in that direction because I wouldn’t do it on my own.  I needed to know I was hurting my husband, the very husband who was loving me unconditionally.

To those of you who are struggling with an eating disorder, you are precious and loved.  You are a beautiful creation who is loved more than you realize by your Heavenly Father.  There.  Is. Hope.   There really can be recovery.  And while it’s hard, it’s completely worth it.  My prayers are with you.

julie


See you tomorrow, friends…

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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: Miscarriage & Infertility

miscarriage

Continuing our Series on Suffering is Jami, a thirty-something who has quite a story to tell. We’re here today with her original interview from 2012. Be sure to come back tomorrow to learn how Jami’s story has unfolded. There’s joy and more suffering and mystery and redemption.

Christan: Thank you, Jami, for your willingness to talk to Repurposed readers. I’m grateful for your openness about such an incredibly painful part of your life. Tell us about your family.

Jami: Thank you for letting me share. My husband, Jim, is a graphic designer, and our son, Tate, is in first grade at the school where I teach. We live in southeastern Kansas and have a great support system.

Christan: You have one child, and you want more.

Jami: Yes, I’d love more. A large family is something I’ve always dreamed about. When Jim and I first started talking about having children, we always planned on having four.  He comes from a sibling set of three, and so do I. We’re both the middle child. It was inevitable that someone was always left out, so we always planned to have an even number.

But I miscarried in 2006. It was the most painful time of my life, but then it just got worse from there. We’ve not been able to get pregnant again. Our son was two, almost three at the time. He’s now seven.

We wanted the baby – that baby. It was so weird being pregnant and happy one day and then not being pregnant the next. Even months later I’d find myself driving to the library or store and think, “I was just pregnant and now I’m not. How is that?” It’s hard to let go of something you held inside of you and wanted so much.  It’s been even harder not being able to get pregnant again. I’ve had to let go of the dream of more children. It feels like many deaths instead of just one. 

Christan: When did you start telling people you had miscarried your second child?  

Jami: As soon as it happened. It was a really rough time for me, and I needed people to know. I tried to go on like everything was okay, but it was hard. People respond in different ways to miscarriage. Some see it as no big deal… like, “Oh, well”. But others acknowledge it and are kind. Many just don’t know or understand what it’s like. It’s a death. I have a friend who miscarried after I did… she told me she wishes she’d been more compassionate to me and admitted she just didn’t understand until she went through it herself.

Christan: How did your son handle it?

Jami:  Tate was so young I think all he knew was that Mommy was unhappy. We still talk about his brother or sister in Heaven. He wishes he had siblings… mostly someone to play with. That aspect has been the hardest for Jim and I. We’ve always wanted Tate to have brothers and sisters. Seeing him alone so much is a constant reminder of what he’s missing out on. It’s even harder to look to the future and see him alone then, too. We love getting together with our siblings over the holidays, and Tate will never have that. It breaks our hearts.

Christan: How did the Church respond?  

Jami:  At the time I was part of a Mommies Group in our church.  I remember going to one of the meetings a few weeks after my miscarriage. No one really said anything. I knew they were aware, but they just kind of avoided the topic and tried to be cheerful. I needed more.  People just don’t know what to do in that situation. When you have a baby, people come over and bring you gifts and food. When you lose a relative, people bring flowers and cry with you. But with miscarriage, I got the impression that people wanted me to move on and get over it quickly. 

Christan: Did anyone walked through the mess with you?

Jami:  My husband walked with me and still does. I have some really great people in my life who still cry with me over the experience. It’s amazing how God works… it’s amazing how He gives me exactly what I need exactly when I need it. He’s brought people into my life at just the right time — people who’ve let me be sad.

Christan: Did you ever feel like it was your fault?

Jami:  Yes, from the beginning. In many ways. The day before I lost the baby we went for a bike ride. I felt like I had over-exerted myself. I know now that’s silly. I also didn’t go to the doctor right away after learning I was pregnant. It was my second baby, and I was determined to be more laid-back than I was during my first pregnancy. I kick myself over and over for that.

I was nervous, too, about my ability to parent two kids. I was tired from chasing a two year-old and wondered if I was capable of still being a good mom with more kids. I thought maybe God heard me and knew I couldn’t handle it. I’ve also thought that I was being punished for choices I made in my past… like God must be mad at me for something or that my faith just wasn’t strong enough. 

Christan: Were you mad at God?

Jami: Oh, yes! Sometimes I still slip back into this anger. He gave. He took away. And then He took more away. I’m infertile. There was a time, though, that I was so angry with Him I didn’t talk to Him for a long time. I went through the motions, so no one knew. I stopped singing to Him in my heart. I’d go to church and just stand there during praise and worship — not singing — with a cold heart. It was really hard to cut that out of my life. It was so second nature for me to start up a conversation with God… I’d find myself doing just that, remember how angry I was, and stop.

Christan: Are you still mad at Him?

Jami:  That’s such a hard question. I hate telling people that I’m still angry sometimes.  This is what it is, you know? I’ve had people tell me that it’s a sin to be angry at God and it’s wrong because His way is perfect, so whatever He does is what should happen. I don’t want it to be His way sometimes. I want it be my way.

It really depends on where I am. I work at a preschool, and half the moms are pregnant. I have to face it every day, and it’s hard. It’s really hard to see everyday what I’m not going to get. I’m more angry when pregnant women are right in front of me.

I know that God loves me, and that He wants the best for me. I have to preach that to myself over and over, and it’s an everyday thing. It’s like a person who deals with alcoholism and wakes up every day going into the world knowing they can’t have what they want. I, too, have to wake up everyday knowing I desperately want another baby, but I can’t.

But God knows we’re human. He made us. I have to pour out my heart to Him about how angry I am with the situation. I ask Him what to do.  When I open up to Him, I do feel peace at times. I also have to let go of myself — wanting to be pregnant took up so much of my life. It’s a very selfish mindset.  t’s been me for so long, wanting it, wanting it, wanting it. I feel like God is saying “no”. I feel like I need to let go of what I want and somehow find contentment in that, but I don’t want to many days. I have to let go of myself and my wants over and over and over everyday. 

Christan: You’ve obviously healed over the years.  How did that happen?

Jami: My family. People listening to me helped. I know that there’s some people I drove crazy by talking about my miscarriage and infertility. There’s others that just listened to me — and still listen to me — for however long I want to talk about it.

I do guard myself sometimes. I stay away from situations where I know I’ll get angry. I don’t go to baby showers. I’ve lost friends, I really have. I hate admitting that because it’s selfish — it’s a very selfish part of me. If a mom comes in who is pregnant or has a new baby, I usually step away.

I’ve prayed. I still pray that God will take the desire to get pregnant away from me. So far, the desire remains. I still hope for this, though. I do feel like just asking this of Him, though, lessens the pain and reminds me to surrender. Reminds me to trust. It’s still really hard.

Christan: Looking back, has God redeemed any of the brokenness?

Jami:  That’s hard to answer. I guess I can see that Jim and I have come closer together.  I’ve learned who I can trust and lean on, and I have a deeper understanding of trusting my Savior. I wish my story was one where I went years and years of not getting pregnant and then all of the sudden I find out I’m pregnant… music swells… we make excited phone calls… we kiss passionately… happily ever after. I know this is not what my Lord has planned. I know infertility was not His original plan for this world, but we all tasted the fruit. We all nailed Him to the tree. This is my part in the brokenness. His suffering is my suffering. For Him I can endure.

My prayer life has changed more from a focus on me and my wants to other people. It seems like for so long I was just praying I would get pregnant and everything else was forgotten. When I finally let go and gave control to God, I could see I was not using my prayer life to its fullest, and my praying changed.

Everyday, though, I wake up and realize I’m infertile and that I’ve lost something. Everyday I have to deal with the anger and make a choice about what I am going to do with it. I’m constantly depending on God for help in this area. Sometimes I am bitter. All the emotions can come and go depending on where I am and what I’m faced with and I make a choice on how I respond.

It’s not always a pretty picture. I’m a sinner and I get ugly. How wonderful that because of Jesus I know that God is looking at me and sees me as pure and beautiful. I’m forgiven for the ugliness in my heart.

Christan: How have you used your suffering to help other women deal with their own infertility and loss?

Jami: I write about infertility, and this has actually helped with my own healing. I’d love to start a support group but that always makes me nervous. Things like that are so important, though. Infertility is a very lonely affliction. 


And so Jami waited as her heart was transformed and her understanding of her Maker and Redeemer matured. I remember times when I knew about others’ pain — miscarriage, a still-born baby, a cancer diagnosis, and on and on and on — and I remained silent. Not wanting to say the wrong thing, I said nothing at all. I grieve now over my cowardliness. I’m embarrassed of my fear of stumbling upon my words and appearing foolish — ashamed of my selfishness. Let us all be inspired even today to love others well.

Join me tomorrow as Jami’s story continues to unfold. You’ll never guess what God’s writing…

 

photo source | milada 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.

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.