Follow-up to the Previous Post

Our good friend, John Neal – founder of Team Krabbe Strong and advocate for Krabbe awareness and Newborn Screening – gave me permission to post his letter regarding the article I blogged about here. He said this so well and I wanted it to help it have a greater audience by sharing it here.

Dear Andy and Brenda:

My name is John Neal, and I am writing you this email in regards to your article published on WebMD regarding Krabbe Leukodystrophy. I am an advocate for families who have been affected by this horrible disease, working with them and other organizations from around the globe in efforts to raise awareness. Part of that awareness is advocating for universal newborn screening for the disease throughout the United States. In my home state of Pennsylvania, we continue to work with lawmakers to enact a bill that was signed into law two years ago. This is also the case for laws that have passed in Illinois, New Mexico and New Jersey. Ohio has mandatory testing with the option of refusal, while Kentucky, Tennessee, New York and Missouri actively test for the disease. Louisiana’s Governor recently signed a bill to begin testing in the near future. Families in Maine, Maryland, Mississippi, California, Arizona, Iowa, Oregon, Texas, North Carolina have been actively trying to have their states follow suit, just like Cove and Jackson’s families are trying to do in Georgia. And so I ask you: Why would you write an article that would shed such a negative light on the testing procedures and treatments available for Krabbe Disease?

As my blood is boiling while writing this, I will try to do my best to be amicable and respectful to you both. But quite honestly, I’m not sure either of you deserve my respect right now. And I can think of a few affected families who were interviewed for this article, and then misquoted, who are as equally upset with your unprofessionalism and deception.

First, how do either of you justify your content in this article? Seriously?! As if we didn’t have to deal with enough politics to achieve our goal of universal newborn screening, now we have to deal with an article (written by what I thought was a reputable source) that contains obvious bias by it’s publisher? Mr. Miller, what is your ulterior motive with this article? You reside in Georgia with your wife and children, right? So I am assuming it is you that initiated this piece? Or you were asked to? It has politics written all over it. It is so one-sided, with the intent of shoving misinformation down readers throats, so that if/when they see that Cove’s Law didn’t pass it can be justified. No one will forgive lawmakers who want to harm little babies, so why not make it seem like they’re saving them (from this horrible testing and treatment)…right?

Secondly, how dare you take advantage of families who were willing to interview with you and twist their words to make your lopsided article read the way you want it to read? The Garcia family lost their boy, Jackson, to this horrible disease. They grieve every single day. And while they do, they continue to build their boys legacy in hopes of preventing any other children from having to suffer; and their parents too. Cove’s family, who has spearheaded this effort, is living daily knowing that they are on borrowed time with their daughter. And things will only continue to get worse. But rather than sit around and do nothing, they are fighting back with the same hopes as the Garcia’s. You didn’t stop there, though. You continued on to interview a family that received a positive test result and is currently at Duke University undergoing treatment to save their boys life. And once again, you misquoted them and draw a focus on the negative side of things. They don’t need that! They’re fighting for their son’s life, who is doing incredible by the way! They don’t need any unnecessary stress caused by your brainwashing article.

Let me ask you this: Did you try to reach out to Wilson family that has a six year old son who is living a normal life, free from krabbe (after receiving transplant)? Michael was diagnosed because of his older brother, Marshall’s, diagnosis. Marshall has since passed from complications due to the disease, but it cost him his life to save his brothers. Did you reach out to them? How about The Galindo family in California whose daughter Faith just turned 20-months and is walking and talking (post transplant)? And how did they know to test? They lost a child previously to the disease. How about the Webb family in Tennessee whose son Owen is doing great? And he, yet again, is a child who was tested because he lost a sibling he never had the chance to meet. The Mabry Kate Act is named after his sister that passed two years ago’ and act that is responsible for the positive test of a baby boy who is currently being treated and doing amazing (in the states first year of testing). Just like Kentucky, who produced a positive test and the child is receiving treatment and doing incredibly well (first year of testing). NO. The answer is NO! You didn’t interview anyone who is doing well. Instead, you took information that is a decade old, and created an article to read the way that you wanted it to read.

Brenda, I know Andy has children…do you? Let me ask you both a question: Let’s say your children were born in a state that tests for Krabbe. And then let’s say you received a positive result that required further testing. So then you Google the disease, read up on it, and spend endless nights crying not knowing what is going to happen to your child. They go through lumbar punctures and MRI’s to determine a definitive diagnosis. Super uncomfortable for a baby just born, I know. But it is a necessary evil. And then let’s say after all of the testing, it turns out that they didn’t have it. Thank God! My question is, what would you say to a family who lived in a state that didn’t test for the disease? What would you say to the parent that wishes all their child had to endure was an MRI and Lumbar puncture rather than have to watch them deteriorate daily? What would you say to the family that has been told to make funeral arrangements for their six month old instead of first birthday plans? What would you say to the family who live each day knowing they will lose their child before their second birthday?

Let me tell you what you would say: You would say THANK GOD MY STATE TESTS and after further testing it came back negative. Cause I damn sure know you’d rather be the parent with the MRI and Lumbar Puncture rather than the latter of the parents I mentioned. And those other parents, they won’t be crying during one week of testing, they’ll be crying every night for the rest of their lives wondering what could have been if only their child was tested.

Did you reach out to Dr. Kurtzberg? Did you know that she has recently submitted a paper for publication with some updated results, specifically results that show promise of improved testing for the early infantile form of the disease. The form that would directly correlate with newborn screening. OF COURSE YOU DIDN’T!!! That wouldn’t benefit you!

I am sure you did get some information from organizations and people affiliated with organizations who prefer not to test, but rather to focus on improved treatments. And in that case…MONEY TALKS. I get it. But politics should not be making the decision of who lives and who dies without a chance. There are reliable testing methods and treatments currently available, and treatments that are saving lives. These kids are living quality lives. And yet, you chose to unprofessionally publish an article that features all of the negatives. How do you feel now? Do feel good about yourself and your work? Do you know the potential setbacks you can cause with such amateurish work? If you didn’t have the up-to-date facts, then you shouldn’t have written anything at all. But because it hit home, in Georgia, you did like most media and fabricated a story to get it done, rather than wait for the truth. Congratulations.

In ending, I would request that you rescind this article. Delete it. Make it disappear. Then go back to the drawing board, do your homework, and re-write it in a professional matter. Do what is right. Do right by the families you’ve wronged, and do right by the families who suffered long enough and are trying to make a difference. Can testing and treatment be improved? Absolutely! And we work on that equally as much as we do newborn screening. But portraying the current methods available in the negative way you did…that was 100% wrong. Please fix it.

Sincerely,

John Neal

Team Krabbe Strong

Guest Post: Tori Travels Project

Hello #TeamTori friends and family!


My name is Laura Gutknecht, I am a friend of Lesa’s, and I had the pleasure of traveling with her recently to Charleston, SC for a relaxing weekend.


I want to thank the Brackbill’s for hosting me on their site today and for giving you a chance to support them.

This is a NO COST way to show Lesa and Brennan just how far #TeamTori is willing to go.

 

The challenge is this… take Tori with you… EVERY WHERE!

 

What do I mean by that?  


I mean print off one of the photos below and take her to work with you, on vacation, to the beach, to your prayer group, to the mall, on the train, and take her to your home.  


Then send your picture of you and Tori to TeamToriTravels@gmail.com WITH your story.


Your story: Tell us who you are, who is in your picture, where you are in the world at the time of the picture (very important), what adventure you are on, and tell us about YOU and why you support this family. It doesn’t have to be uber creative – your name, location, and what you’re doing is plenty, the rest is icing on the cake!


Take a few pictures… with your crew (or a selfie) and with your crew and Tori.


A few of us have been doing this already.

 

  

      

 

 

Why do we want the pictures?

That is a great questionWe will be making a book for the Brackbill’s to enjoyIt is really a book that shows the faces of their supporters so they can SEE each one of us cheering them on.


Extra Credit:

You can also post the pictures on social media with the hash tag#ToriTravels and encourage others to take on the #ToriTravels challenge too.


Please note:  ONLY the pictures and stories sent to the email address TeamToriTravels@gmail.com will be used for the book. We have a handful of gals working on this project so keeping it in one place is key to getting the book into their hands sooner.


How long will you accept pictures?

This will be an ongoing request for photos and stories so take Tori to summer camp, to Thanksgiving, and even Memorial Day next year!  


How many times can I send pictures?

Send as many as you’d likeOur goal is for Miss Tori to see the whole world through you!


If you’re the only ones submitting photos we might have to give you a gold star and edit out a few photos. Consider a warm thank you because we already appreciate the support!


Is there any other way I can help?

If you want to join our photo gathering team let us know at TeamToriTravels@gmail.com


Keep encouraging Lesa and Brennan on their blog and Facebook page.


If you want to give to the Brackbill’s they can use Amazon and Grocery Gift cards – they will always need to eat

They are taking care of Tori so anything that reminds them to take care of themselves is great too – like getting new clothes for themselves (Old Navy, Gap, Kohl’s, Target, JCPenny), books, iTunes (for worship music).


And last, but certainly not least. Cover this family in prayer. Pray for Tori. Pray for Brennan and Lesa. Pray for their doctors and caregivers. Pray for those who are touched by this family and need love and support of their own


Pray for love, grace, and encouragement to fill those in this family and in this community.


Safe Travels to you all as you embark on the #ToriTravels challenge!


Can’t wait to “see” you soon!

Laura

 

Pictures of Tori to Print or add to your smart phone:

   

                       

 

Guest Post: “Fighting to Forgive and Forget the Former Things”

 Featured authors

Fighting to Forgive and Forget the Former Things

 By Sheri Rose Shepherd
Bestselling Author and Bible Life Coach
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How do we forget the former things? Is there some magic prayer that wipes out our memories so we won’t feel the pain of our past? I wish I could say that this is the way to find a new foundation for your life. Yet God teaches us through Isaiah 43 that our past does not determine our future. He wants us to embrace the new beginning He offers us and to stop living in yesterday. However, to let go of our past, we will have to leave it where it belongs . . . at the Cross.

I was powerfully reminded of this again through Alice, whom I met recently at a retreat. I had been talking about rebuilding relationships, and when I finished, I walked over to the door to say good-bye to each of the ladies. I loved hearing how God spoke to them throughout the weekend, and Alice gave me renewed hope. She was seventy years old and had been married over fifty years.

I was captivated by the joy that lit up her face. She radiated from the inside out, and her smile made me feel at home. I thought Alice must have lived a wonderful life to glow with God’s glory the way she did. I had to ask her what her secret was. Her response reflected a woman who was beautifully broken.

She said, “When I lost the husband I loved to my best friend, I lost everything that was dear to me, including my children. However, I discovered how much my Lord truly loves me because of that loss, and I have never been the same because of His love.”

My eyes welled with tears as she shared with me the story of how her husband had served her divorce papers on their fortieth wedding anniversary. Devastated and overwhelmed by grief, she set the papers aside without signing them. She fought to understand why God did not protect her marriage after all she had sacrificed to remain faithful, even in the hard and unhappy years.

Despite their challenges, she said she loved this man and never dreamed she would be alone in her older years. Though they lived apart for seven years, something inside her soul continued to keep her from signing those divorce papers. Late one night, though, she finally decided to move on and let go of the man she loved. With sad resolve, she signed the papers. Once she had done so, she felt free for the first time in many years.

Until the doorbell rang. It was 2 a.m., and she was a little fearful of who might be at her door in the middle of the night. When she opened the door, she was shocked to see her husband, Bill, on his knees with tears in his eyes and torn-up divorce papers in his hand.

He looked into her eyes and asked her for something he did not deserve: “a chance to finish my life with you.” Bill told her he had just awakened from a dream he believed God had given him, showing how his actions were crumbling the foundation of the faith of his children and grandchildren―all for the sake of his own pleasure. When he woke up, he could not wait until morning. He had to run to his wife.

He knew he owed her a sincere apology, but he wanted so much more. He wanted a second chance, and he was willing to do whatever it took to rebuild what he had broken in her heart. She stood there silently until she heard the Lord whisper to her, “Today, Alice, is the day I am giving you a choice between life and death for your family. I am asking you to trust Me with this broken man and choose life, so that your legacy of faith can live on in your children through your obedience to Me.”

She asked for a few days to pray; Bill told her to take whatever time she needed to decide.

Alice said she fought through the biggest internal battle she had ever experienced as she reflected on the past seven years away from this man. After all, she had finally healed from his betrayal and feared she might reopen the wound that had taken so long to heal. She wrestled through every emotion—from feeling ripped off, being rejected, and now receiving an offer to be rescued.

Alice knew her choice would write the rest of her life story and her husband’s story. After many tears and much prayer for the strength to forgive her husband, Alice surrendered to God’s will and gave up her rights to take revenge. God blessed the hard choice Alice had made to forget the former things and finish her life with her husband in spite of all he had done. And they finished strong!

Yes, Bill was wrong, and yes, he was unfaithful and caused much damage to many lives, including his own. There is no excuse for his actions, and Alice had every right to make him suffer for what he had done. However, her extremely hard decision to forget the former things will leave a legacy of love that will live on long after they are gone.

For more teaching videos from Sheri Rose, go to www.biblelifecoaching.com.

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Guest Post: “From Gangs to God”

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From Gangs to God

By Sheri Rose Shepherd
Bestselling Author and Bible Life Coach
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I once heard a pastor say, “If you are struggling to respect your husband, find the strength to respect him as your brother in the Lord.” That comment really woke me up as I realized that none of us really deserves honor or respect except the Lord. Honor and respect are powerful tools to rebuild a broken society, but how do we show respect and honor to those who act disrespectfully and do dishonorable things? What can we do to cultivate honor and respect between men and women again, and how can we influence our children to live in a way that is honorable to God and respectful of people?Yes, our men may have done many things that certainly do not deserve to be honored. But they are God’s children just like we are, and they are imperfect just like we are. We women are not responsible for their dishonorable actions, but one way we can each help rebuild our broken men is to treat them like the men they want to become.

Years ago my husband and I owned a Christian production company, which produced talent showcases for aspiring models, actors, and singers. But more important than exposing these potential stars to Hollywood was the ministry time that took place during the week of rehearsals and workshops, as we would share God’s love and plan of salvation for their lives.

During one particular showcase in Seattle, a group of gang members hung around outside the room where we were holding the auditions. They made fun of each of the participants as he or she walked out of the audition. It was obvious they were there to cause trouble. I struggled with fear and anger as I prayed for protection over the young adults walking out to their cars. Then something happened as I made eye contact with one of the boys through the glass doors I was standing behind. My heart began to break with compassion, and my faith overpowered my frustration. I thought, Maybe these boys have never seen men and women honor and respect one another. Maybe they just need someone to treat them like they were made for more.

God grabbed hold of my mother’s heart, and I began to look at these boys through different eyes. I realized I didn’t know their pasts, their parents, or their present circumstances, but I did know they were truly loved by God, no matter how disrespectfully they were behaving.

I took a step of faith and invited these boys to spend a week taking acting workshops at no charge. Their first response was, “Why would anyone do something for us?” However they couldn’t resist the offer.

Each day when they would walk into the room for their workshop, I would stand to my feet, walk over to greet them at the door, and treat them like guests of honor. The first day I took them around and introduced them to each of our staff members. The next day I decided to make lunch for them. Although I did not like the way they acted or the words that were coming out of their mouths, I decided I would make every effort to use whatever influence I had as a woman to inspire them to live honorable lives. To my surprise the power of prayer, honor, and respect paid off as I witnessed these boys begin to transform. Not only did they begin to act differently, but I learned a valuable lesson that week: honor is not something someone has to earn. It is an attitude I need to learn to give to all those God has created.

For more teaching videos from Sheri Rose, go to www.biblelifecoaching.com.

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Guest Post: Building Up the Men in Our Lives

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Building Up the Men in Our Lives
He who covers over an offense promotes love, but whoever repeats the matter separates close friends. (Proverbs 17:9, NIV)
 
By Sheri Rose Shepherd
Bestselling Author and Bible Life Coach
 
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When our husbands let us down, it’s hard not to voice our anger and disappointment. We don’t do it to hurt or embarrass our husbands. We are women, and we’re wired to share our hearts with another person. We definitely need one another to become the women we want to be, but we need to be careful not to cripple our men by uncovering their weaknesses to everyone.Obviously we all need someone to help us sort through our feelings. I think it is best to find one or two trustworthy people who are in favor of our marriages and won’t repeat our conversation to others. I have two best friends to whom I tell everything because they help me see things from my husband’s perspective and help me fight for my marriage by praying and sharing wisdom from the Word. I am careful, even with them, not to overshare in a way that would humiliate my husband, Steve.

Think about how we would feel if our husbands talked about our weaknesses at their workplaces. Let’s commit to covering our men and not exposing them, and let’s pray for them to grow as leaders.

Don’t Enable . . .

For husbands, this means love your wives, just as Christ loved the church. He gave up his life for her. (Ephesians 5:25)

Because we women are so good at leading, many times we leave our men in the dust or allow them to become weak leaders. How are they ever supposed to learn to lead if we do everything for them? We are not their mothers; we are their wives. Christ asked them to love, lead, and take care of us the way He loves the church.

It’s important that we not try to do things that are our husbands’ responsibility unless they are absolutely necessary. Even if we can do their job better than they can, we’re not helping them become the men they long to be; we are enabling them. They will see us as their mothers and not their wives, which will make us bitter toward them and produce the fruit of self-hate in their lives.

Do What You Can to Empower Him . . .

Sarah obeyed her husband, Abraham, and called him her master. You are her daughters when you do what is right without fear of what your husbands might do. (1 Peter 3:6)

I used to think it was strange that Sarah called her husband “master.” I thought maybe she was even putting her husband before God. But today I realize she was a wise woman. She was empowering her husband to find his place as her leader. We can also help our husbands become godly leaders for us. Even if they do not rise up right away, we shouldn’t give up on them. We can keep praying and empowering them. Whatever they do, big or small, let’s encourage them. Let’s be like Sarah and do whatever it takes to empower our men to be great.

For more teaching from the Your Heart’s Desire book and Bible study, visit www.biblelifecoaching.com.

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Guest Post: Receiving God’s Love

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Receiving God’s Love
 
By Sheri Rose Shepherd
Bestselling Author and Bible Life Coach
 
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Think how powerful it would be if we spoke the truth about how God feels about us at least as often as we silently said negative things about ourselves or replayed in our minds all the hurtful things that have been said about us. The truth is, we are not what others say about us, and if the men we love speak hurtful words to us that make us feel unworthy, we don’t need to repeat them any longer. Instead we can learn to rest in God’s unchanging love for us.

Even if no one has ever said anything kind to you, your Prince Jesus longs for you to breathe in the tender love, compassion, and kindness He feels for you. If you’re ready to have Jesus, the lover of your soul, become reality to you, I invite you to do the following . . .

Breathe In His Love . . .

For the Spirit of God has made me, and the breath of the Almighty gives me life. (Job 33:4)

You know that feeling of exhilaration that sticks with you after you’ve spent time with a guy you know you’re falling in love with? As you part, you take a deep breath and feel waves of delight washing over you. Or you know the joy that wells up inside when your man unexpectedly says something so sweet that you feel treasured? You replay those words over and over in your mind because doing so gives you a lift.

Breathe His truth in; allow the words of your true prince Jesus to echo in your heart and soul.

After you consider God’s words to you—”I have loved you with an everlasting love” (Jeremiah 31:3)—whisper toward heaven, “I love You, Lord.”

Sing about His Love . . .

Each day the LORD pours his unfailing love upon me, and through each night I sing his songs, praying to God who gives me life. (Psalm 42:8)

When I was learning to let myself receive God’s love, I would actually sing love songs to Him. Though they had been written for a woman to sing to a man here on earth, I began to understand that if I would crave God’s love first, He would meet my needs. Only then would I be able to give and receive love.

Today I love worship songs that sing of God’s love for us. I blare them throughout my house in the mornings so Satan will not be able to whisper lies to me any longer. Consider doing the same.

Write Love Letters to Him in a Journal . . .

Connect your heart to heaven by writing love letters to your Lord. It is amazing what happens to your heart as you begin to express your love in writing to the only One who will never walk away from or reject you. Hang on to this treasure of truth: how you feel about yourself will never change God’s love for you.

Let Us Pray . . .

Dear God,
I confess I do not feel worthy of your love. It is hard for me to believe that You even love me. Help me, Lord, to look to You for my worth. Forgive me for not allowing myself to receive Your love. Forgive me for looking to others to make me feel like I have value when You are the only one who can validate me and love me the way I long to be loved. From this day forward, I choose to let You love me so I can love others. In Jesus’ name. Amen.

I will sing to the LORD as long as I live.
I will praise my God to my last breath!
May all my thoughts be pleasing to him,
for I rejoice in the LORD. (Psalm 104:33-34)

For more teaching from the Your Heart’s Desire book and Bible study, visit www.biblelifecoaching.com.

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Guest Post: “We Are on the Same Team and Fighting the Same Enemy”

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We Are on the Same Team and Fighting the Same Enemy
As iron sharpens iron, so one person sharpens another. (Proverbs 27:17)
 
By Sheri Rose Shepherd
Bestselling Author and Bible Life Coach
 
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Think about what makes your heart melt when you watch a great love story. It’s not the hero’s physical strength or his beloved’s beauty, is it? No, you and I are drawn to the power of true love and its inexplicable ability to prevail over tragedy and adversity. The greater the conflict, the stronger the love must be in order to resolve the issue. When the hero does whatever it takes to save the relationship, our hearts soar with renewed hope. Likewise, as we seek to truly listen and understand our men when differences between us create friction, we set ourselves up for more satisfying and loving relationships.

The Author of love and life and the Designer of our differences knew there would be conflict between men and women. The real problem comes, though, when we get accustomed to seeing relational problems solved in the time it takes to eat a bag of popcorn. Our hero and his beauty have less than two hours to defeat the dragons and overcome unspeakable challenges. You and I are not going to magically resolve deep relationship conflicts in our own wisdom and definitely not in less than two hours.

When I met my husband, Steve, I was sure we were a match made in heaven. In fact, we have had the privilege of being in ministry together for most of our marriage. I wish I could tell you it’s been an effortless, wonderful life for the two of us, but I would be lying to you.

I learned to fight loud and strong by watching my parents. My brother and I would hide together in my bedroom as our parents tore into each other during arguments, often screaming and throwing things. Because of my broken family, when I first got married I was sure that every conflict between me and Steve would end our marriage.

Steve was raised by parents who had stayed married, so it was impossible for him to relate to my fears and worries. He was raised in quieter surroundings. His parents dealt with conflict quite differently from mine. There was no rage. No yelling. No broken furniture. His parents rarely fought—and never in front of their children. But his family also had no system to resolve conflict. That meant issues went unresolved—though not unnoticed.

Steve’s and my fighting techniques were drastically different. However, neither of us had been equipped to deal appropriately with marital conflict. That led to major challenges early in our marriage whenever we attempted to resolve a disagreement. To make things even more difficult, when I married Steve I was a new Christian and had not yet learned how to channel my anger properly.

I tried everything to get him to react or resolve conflict with me, and as I waited, I became more bitter and he became more distant. One day I couldn’t take Steve’s calm, cool responses anymore. From my perspective, he obviously needed some lessons on how to fight for our marriage. I’d had enough of his “let’s work it out peacefully by ignoring our problems” act. In my mind, he was being polite only to annoy me.

“Why don’t you ever show some emotion and prove to me you care about our marriage?” I yelled.

Steve stood there quietly, shaking his head and looking down at the ground. Then suddenly, he turned toward the mirror on our bedroom closet door and kicked it as hard as he could, smashing it to bits.

Wow, I thought, what a performance. He sure learns fast.

Suddenly I began to laugh hysterically through my tears. I was so shocked I wasn’t sure if I was relieved or ready to run from what I saw. His toenail was jutting out at a bizarre angle as he asked me, “Is that enough emotion for you? If it would help, I could probably throw myself on the floor and work up a good cry.” We both began to laugh together as we attempted to pick up the glass fragments scattered all over our bedroom floor. In that moment I realized how much we had shattered each other just because we were different and had not been trained on how to resolve conflict. Our marriage was not the problem; it was our hearts. Neither of us had a teachable spirit.

It took several years, a lot of tears, and one expensive closet door mirror to repair the damage inflicted during those early years. We still have conflict, as all couples do, but we now understand that we are on the same team and that it’s okay not to agree on everything.

After twenty-five years of marriage, we’ve decided it’s worth letting go of the little things and fighting to understand one another. Conflict comes no matter who we marry. We may be fighting about different things with different men, but there will always be major differences between men and women. I once heard a pastor say that if spouses agreed on everything, only one of them would be needed. Let’s not allow our differences to divide us any longer!

For a sneak peek of Sheri Rose’s Your Heart’s Desire Group Experience, or to learn more about her ministry, visit www.biblelifecoaching.com.

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