Series on Suffering: Losing A Spouse

LosingSpouseFrom the inner tension that comes with an eating disorder, we go to terminal illness.  A life taken from us is deeply painful, and our guest today also watched her husband physically suffer for several months before saying goodbye.  

I’m grateful for Susan’s honesty regarding questioning God, being angry, and finally surrendering. She ends her interview today with advice for those who know someone suffering from cancer. Join us as our Series on Suffering continues…


Christan: Susan, thanks for your willingness to wrap up our series on suffering. Tell us what your first husband was like.

Susan: I met Brian when I was 30 years old when I had just moved here from Los Angeles. We were both teachers, and we connected over writing and education and teaching kids how to write. We became instant best friends and were married eleven months later. From the first time I met him, I felt as though Brian and God had this “secret room” or something where they’d go and talk about life. He was so in tune with what God wanted for him, for us. That wasn’t my relationship with God. I struggled with being sure of what He wanted. Brian also preached grace everywhere. I think my understanding of grace deepened by knowing Brian.

Christan: How soon did you start your family?

Susan: Because we were a bit older when we got married, we wanted to start our family soon. Max was born two-and-a-half years into our marriage, and Briggs followed two years later. Much of our experience looked like the norm — falling in love, getting married, having children. I think, though, we were in a different place emotionally because of our age and life experiences before marriage. We had struggles, but our marriage was truly a partnership.

Christan: How soon did cancer enter your family?

Susan: Between July and December of 2004, Brian lost ten pounds… and this was with him eating a bowl of ice cream most nights. We really couldn’t understand where the ten pounds went. We assumed it was because of stress caused by a new baby and Brian’s new job. In December, he began coughing, and it lasted a couple months. I remember him walking up the stairs in March 2005 — he paused like an old man, out of breath, and said, “There’s really something wrong with me.  I can’t even make it up the stairs without stopping to catch my breath.”

Christan: How old was he?

Susan: He was 34 with no health issues except allergies. It all happened very fast. After going to the doctor, they put him in the hospital and did several tests to rule things out.  They discovered a massive dark spot in Brian’s pulmonary artery. It was right next to his heart, kind of right where everything happens. They didn’t know what the mass was so they immediately put him on blood thinners, thinking it could be a blood clot. Nothing changed. Then they moved him to a larger hospital followed by more blood thinners and more discussions with additional doctors. Some tests showed Brian was living on only ten percent of his lung capacity. Because he was so thin, he hadn’t dropped dead.

When he had surgery on a Monday, I was convinced all would be fine. But when the doctor came out of the surgery, he said, “Yeah, it was malignant.”

Everything stopped.

I didn’t sleep for 24-48 hours after surgery. Because I had babies at home, I couldn’t stay at the hospital all night. I remember picking up a magazine at home, trying to distract myself.  I opened it, shut it, and thought, “This just doesn’t matter.”  It was if the reality of the Gospel and heaven enveloped me. This life was suddenly not as tangible as I wanted to think it was.  It was clear there was something so much deeper than what what staring at me in the magazine pages.

From March to November, we were on the cancer roller coaster. We danced back and forth from hope to reality. I tried my best to navigate the medical world while potty training a three year old and convincing the world we were okay. I remember pleading with God to fix this situation. From debilitating treatments to helping my husband walk around our house — through it all, I just didn’t get it. But soon after he died, I often reflected, “Might it really be a gift to have watched that type of suffering?”

Christan:  How so?

Susan:  For one, I began to understand the mortality of our bodies. When Brian died, he took nothing with him… not his books, his paintings, nor his writings. What he left was his impact on others.

About five days before Brian died, I had finally reached my limit and was mad at God… really, really upset.

“Why won’t you fix this, God?” I dove into Job and came to those verses when God says, “Where were you when I made the world?”

I felt as though He pulled me into that “secret room” He had with Brian and gently said, “That’s enough, Susan. You are not going to get what you want.”  I think I knew at that point that Brian was going to die, but I also knew God was never, ever going to leave me.

After that conversation with God, I decided we were done with chemo, for it was so painful to watch someone go through that. I told Brian we were finished. His eyes got really big and then I noticed great relief. God was pressing on our hearts to prepare for his passing.  I now think of Jesus in the Garden of Gethsemane asking if there was another way to save the world. God the Father was telling the two of us in that moment, “No, this is the only way.”  We couldn’t see past tomorrow, and it was terrifying. But I believe God wants all of our trust in what He’s designing.  Even Jesus in his humanity struggled with that sort of anticipation, with surrender. Brian died a few days later.

The moment he passed, I remember thinking, “Wow, I just watched him go into Heaven” instead of being overwhelmed by the loss of his mortal body.  I had watched his body die for months, and it was a great gift to understand that none of us are home here on earth.  In the midst of daily life, it’s difficult to remember this world here is not eternal.  I think the suffering taught me the reality of eternity and the reality of Heaven.  If I hadn’t seen or felt death in this life, I’m not sure Heaven would be as real to me now.  I think for us to live boldly, Heaven has to be real to us.

Christan:  During those seven months of suffering, what did your other relationships look like? 

Susan: I’m a doer. And Brian was really ill.  I do have regrets… part of me wishes I had been around more.  But for me to be fully with him, I had to have service elsewhere.  During the last three months of Brian’s life, I was tutoring a student… that really helped me.  It wasn’t a lot, but it did help.

In terms of our marriage, it was hard because he couldn’t give much to it.  I like to think I’m so independent, but you need somebody.  We sought counsel from friends.  There were times that I needed help with daily things, but Brian was fighting for his life.  We needed people who were right there with us, walking alongside us, helping us while we were literally falling apart.

Christan:  Did you feel that cancer and losing Brian was a punishment from God?

Susan: Overall, I knew God was calling us to walk through what we did.  Between surgery and radiation, I remember thinking, “This is what I get for marrying a Maynor.” (Brian had three brothers.) The Maynor boys live their lives so gracefully and faithfully, and Brian was all about making things more beautiful — rehabbing a broken house, serving in community, giving to those in need. He did whatever he could do to help others. I believed God was calling us to navigate cancer. But I also thought Brian would suffer, get healed, and then go help people with his story. I put it in a little box because that felt safe.

But in my darkest moments, at night especially, I remember battling through my thoughts.  I reflected on sin patterns in my life, as well as actions I had done years ago in my youth. I faced irrational fears and choking guilt. I forced myself to disengage from that dark place because I knew that wasn’t how the Gospel works.  But in my brokenness and fear, that’s the place I was in. And it is part of the story.  God reminded me that what He did on the cross was enough.  I had to get to that dark spot of suffering before I could really see.

Christan: Seven years later, do you ever go back to that spot?

Susan: Not really.  I can see growth in my life.  When God puts something in my life that I question, I try and embrace it and know that God is going to teach me something. I understand why He gives us hard things. In those moments, I feel like God breaks idols in my life and replaces them with Him.

Christan: How did you heal?  You seem like you’re whole again.

Susan: Even though there’s healing, there are always scars.  And those scars are good because they’re reminders of how the story is so much bigger than our story alone. They remind me of why the cross had to happen.  If the cross didn’t happen, where would Brian be?  Would I be walking around wondering where my husband is now?  Would he just be dust?  There’s so much of the resurrection story woven through my own story. If the emotional pain flairs, the resurrection is always a reminder of the greatness and redemption. Jesus had his scars.  Scars are a reminder of my growth, my perseverance, my maturity in knowing God deeper because I really think that’s all this life is about… It’s all about getting to know God, walking with Him and giving Him my heart.  It’s really not about whether or not we have a beautiful house or where our kids go to school. Even though that’s directly in front of us, suffering allows us to step back and remember this life is all about knowing Jesus more, about being more Christ-like in all that I do, and being part of His redemption story.

I think brokenness and suffering have to happen because we need to come to grips with our fragility. We have to. It’s too easy in this life — if we never suffer – to miss seeing and knowing God as He truly is.  We see God’s greatest strength and power through when He Himself was the most broken—the cross.

It took a while to heal. It was about three years before I felt as though my feet were firmly on the ground again. When I looked back on my life prior to Brian’s death, I realized I no longer fit where I did before. God had changed me. The reality of knowing my former husband is whole again in Heaven changed the way I think about my life, my world, and the people with whom I engaged. I think there comes a point when there is no more oozing from the wound, but the scar is there.  And it will always be there.  The scar points to God, not Brian.

Christan: What advice would you give to those who know someone suffering from cancer?

Susan: I think the community of believers and the Church struggle with being authentic.  We don’t want to step on toes, we want to be proper, we don’t want to invade privacy, we want to respect boundaries, we follow rules.  But when a person or family is facing extreme crisis, the navigation is overwhelming and almost impossible alone.  Looking back, in the midst of the diagnosis and all that followed, I felt as if I was in a cloud.  When you’re in grief like that — denial, anger, fear – the cloud is present all the time.  Because of that cloud, it’s important to help those suffering navigate through their circumstances.

Try to be intentional. And try to have no expectations.  If God is pushing on your heart, just do it.  Give, show up, serve that family — just do it.  Don’t wait for someone to say it’s okay. We all struggle as humans with needing validation.  Try to have zero expectations and don’t expect the person in crisis to give you anything back — even validating your service to them.  We have to step past your own egos and self-interest and do what God asks us to do for them.

One family gifted our family with money so I didn’t have to go back to work right away.  A group of Brian’s college friends hired a nanny for a year… they didn’t ask permission because the need was so glaring. Another friend came over to just be with me, so I wouldn’t have to be alone. Someone else anonymously mailed me a gift each month after the first anniversary of Brian’s passing.  For twelve months, I received things like a Starbucks gift card, a book, a picture frame —  they were all very intentional items. It blessed me so much, for I felt alone and scared.  To this day, I don’t know who that gift giver was. So, even if it feels a bit scary, just do it. Trust God’s leading.

Christan: And what advice would you give someone who is watching his or her spouse suffer with cancer?

Susan: Every journey is personal. I wish I could tell people how things will unfold. My advice is to accept that you are not in control. You aren’t in control of the healing.  You aren’t in control of anything.  I learned that God is in control as I walked through suffering.  Regardless of how much I yelled and fussed at Him, God was going to unfold His story the way He designed it to be… for Brian, for me, for our kids.

Also, don’t be afraid to ask for help. I didn’t want to be needy, but it became impossible to not ask for help. When things were intense, there were emotional chasms between Brian and I because I simply couldn’t reach Brian. He felt like a million miles away. We went to friends and asked them to pray with us and be with us. We were so scared — but not too scared to ask for help.

When it comes to cancer, always hope, always hope for healing. But in that hope, we must surrender to the truth that God is going to do what He’s going to do. And with surrendering comes the call to persevere, cling to hope, and believe we’re absolutely in the hand of God (even if it doesn’t feel like that).  In retrospect, I know there was not a moment I wasn’t in God’s hand, even in the pain, even in the fear. I remember coming home from the hospital after Brian had passed and sitting on my bed with my door shut. “Now what?” I thought. “I’m alone with two babies. What am I going to do?” But I was never alone. God is always constant, and He’s true to His faithfulness. Seek that. Understand that.

Christan: What advice do you have for widows and widowers who also have children?

Susan: Again, everybody has his or her own journey.  As a parent, I have to honor that with my children. I made an intentional decision to never put my children in a position where they had to be more than my children to me.  Meaning, they aren’t my husband.  They aren’t my mother or my brother.  And they shouldn’t have to relate  like more than my children to me. Their needs came before mine because they were three and one years old. They were so little when Brian passed, so their grief has come a little later in their lives when certain realities hit them. I’ve tried to pay attention. I’ve sought the help of a counselor for my kids. Children are unique individuals, and their walk through grief will look different than your own. I often hear that kids are resilient. That’s true, but they also feel. Communication is huge. When questions are asked, answer your children honestly and promote more dialogue. Children absorb everything, no matter how old they are.

Christan: Finally, how has God redeemed your suffering?

Susan: I believe redemption began right in the middle of it all. God has given me opportunities to directly embrace His work in ways I never imagined—as a mother, as an educator, as a visual storyteller—work that I couldn’t possibly do without the Lord’s strength and help. He’s given me work I may not have entertained if I had been married because of the scope and timing. I’ve been part of things that are so much bigger than me.

God’s also transformed me. I’m willing to be uncomfortable now. I almost pursue uncomfortable situations because I know I’m going to see God in them. Also, God’s given us a family far beyond our dreams. He’s brought someone into my life and given me a second partner in this life. He’s brought an earthly father for my children. Not having expectations has brought me to a point where I surrender to God’s timing. And in God’s timing, He brought the right man to make us a family of four.

Suffering has changed the way I walk through life. When you live without the boxes you used to put in place, when you live without having to control, you experience inexplicable fulfillment and peace and a life far more than we could ever imagine.


Accept we are not in control. Don’t be afraid to ask for help. Always hope.

Yes, we gain so much through losing.  We are changed creatures when we finally face and embrace the story God has written for us — the story that is often painfully bitter.  We find freedom when we surrender.  We find healing when we admit our wounds.  We help others when we look back on our own helpless pain.  It’s all so ironic.  

Join me tomorrow as Susan shares an update on where she is in 2016. 

photo source | Jen Palmer

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…

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.