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Guest Blogger: Dr. Nick Minnaar

I’m not a writer. But I've learned the value of recording what has become a bit of a ridiculous story about the Lord’s above average faithfulness to a pretty average family in Michigan. I guess that makes me more of a storyteller, and this story is a love story, where tragedy mingles with beauty. It reminds me of a better story and I'm hoping it will do the same for you. I'm sure you know the story already, but let's put it plainly at the outset: the God of the universe, infinite in love and mercy, saw fit to redeem a sinful people for himself by making atonement for their sins through the perfect and tragic sacrifice of his begotten son who is our Lord and Savior Jesus Christ. (I realize I used the word "story" way too many times in the opening paragraph--I told you I'm not a writer).

So what’s my story? It all started when my baby girl almost died. That was 728 days ago. That’s easy math because her second birthday was yesterday. She had open-heart surgery when she was 2 days old, and right around the 24 hour post-op mark her little heart stopped beating. Well, maybe the story starts a bit further back, sometime in 2010. That's when we realized that because the Lord had blessed us richly, we should consider doing something risky on account of the gospel. So in September of that year, our two foster boys showed up on our doorstep. We had 4 kids of our own the old fashioned way and figured we had room in our hearts for a couple more who could use a covenant family. They officially joined us via adoption two years later and then Carissa (she’s my lovely wife) got stuck on the idea that we should have one more baby to “hem the boys in”. It seemed like a reasonable idea at the time, but we hadn’t planned on Louisa being born with half a heart.

I’ll spare you the medical mumbo jumbo, but Louisa has Hypoplastic Left Heart Syndrome (HLHS). It’s a nasty congenital heart defect that is incompatible with life save for a 3-stage, open-heart surgical process whereby some brave pediatric heart surgeon who has trained for about 70 years cracks open baby chests and changes all the plumbing on a walnut-sized heart. The end result of these 3 surgeries is to allow the right side of the heart to do the job the left side was designed to do (because her heart doesn't really have a left side). This works for a while, but usually not much more than 10-20 years if all goes well. And well, often, all doesn’t go well.

Like the day after surgery number one, when Louisa’s heart stopped. That was probably the worst day of my life, but what I thought I’d tell you more about now are some other heart problems in our family. I’ve got a heart problem. D (our oldest adopted son) has a tough case of it. And Carissa's might be the hardest of all. All three of us are afraid of love. There's just so much to lose.

I’ll start with me. I've learned that love is not just about emotion and feeling. It’s also about choice and commitment. But up until our adopted boys, the choice was easy. The commitment was natural. My wife is amazing. I’ve been loving her since she walked through the door of the middle school band room with braces and a flashy Umbro outfit. 20-something years and 4 wonderful kids later, being a husband and father was mostly pure joy. And then the boys came and loving became challenging for the first time. Here was a new dimension to love. Now I had to love someone who resisted and rejected my love, and threw it back in my face. D had me second guessing my capacity to love. He was showing me that my love was often self-seeking and self-referential. I’d never experienced disruptive love, and it was making a mess of my home. But should I expect anything less if Jesus himself was rejected by the men he came to save? Even his own disciples deserted him when it got tough. Why do I think I deserve better than my Lord when my son says he hates me?

And D? Well, here’s how yesterday morning went. I’m getting ready to leave for work and D is up a bit earlier than usual. I hear it start… “Mom, can I stay home from school since it’s Louisa’s birthday?” “No honey, you need to go to school. We'll celebrate when we're all together tonight.” Fists begin to pound the floor and then the kicking starts. “But, I don’t want to go to school. I’ll probably puke and everyone there hates me.” “You’ll do great buddy, you don’t have to puke. I know birthdays can be hard, but the Lord will take good care of you and all of us.” By now I'm in clinic praying I won’t get the text, but I do: "What am I supposed to do? He won’t get on the bus. Full freak out in the van, hitting and kicking, screaming, won’t stop honking the horn. Don’t feel safe." With that, I have to leave a couple patients in their exam rooms and head home. Maybe I’ll be back, maybe not. I literally have to drag him into my car and then drag him into the school. I’m sitting in the hallway with his 2nd grade class waiting to go in and there’s a 4th grade hall monitor who is yelling at me to sit “criss-cross-applesauce”. He’s actually kicking at our feet as he goes by, “bags in your lap!” What is going on and where did they find this 10 year-old former prison guard? I’m having an out of body experience. It’s surreal. Why does D hate us so much? Why can’t he trust our love after all this time? Is there anything we can do at this point? Is he past the point of no return? But now he’s crying, “don’t leave me!” I think I might be going mad.

But this kid has had his brain seriously messed with. His experience says, “don’t get too attached to anyone! They’ll either ditch you or get taken away from you. DON’T LOVE! It’s WAY too painful.” So, he's taking control by rejecting before he can be rejected. I know it's not his fault, but he’s making himself almost impossible to love and I'm so tired of trying to break the cycle. It’s become so destructive. I hope and pray that someday he'll be able to see how hard I'm fighting for him and that I won't quit on him, no matter what. I have to show him how Christ humbled himself--all the way to the cross. I'm not doing it perfectly, but it's why I'm still sitting criss-cross applesauce with him on the floor getting yelled at by a 4th grader!

And finally, there’s Carissa. She’s a heart mom. Her charge? Love someone that you’re probably going to lose. She understands how fragile life is now. She heard the cardiology fellow wrap up his hour-long fetal echo with the conciliatory remark, “Sorry guys, tough diagnosis”. She kept vigil at Louisa's bedside for 4 long days after the cardiac arrest when she was hanging by a thread and seemed more machine than human. Sometimes she thinks if she can hold her tight enough, maybe Louisa will live a long, healthy life or grow another pumping chamber. But there's a real possibility that this birthday could be her baby's last one. It's so painful to love this little girl, yet I can tell you she's one of the most irresistible humans out there! Having the strength to pack her up on April 18 and head back to that hospital for a third open-heart surgery feels impossible. All those words the doctors have said just echo in her head, “Louisa is very sick. The surgeries are palliative. This isn’t a great solution, but it’s the best we’ve got right now. After this one, we’ll just have to wait and see…” Wait and see if what? Oh right, if she survives.

So, what on earth do we do? We have one child that is spending every waking moment trying to get us to reject him. We have another that the more we love, the more pain we'll feel when she's gone. There’s only one place we can go with all the frustration, confusion, fear, and sorrow of our heart problems: the cross. It almost sounds cliche, like some kind of Christian pop song, but there is nothing cliche about the cross. There our Savior gave everything to a people that rejected him. After all the healings, the meals he multiplied, the commanding of storms, the casting out of demons, even raising the dead! And what about the perfect love for his Father that he knew was going to be cut off? Eternally perfect love. A heart mom’s desperate love for her heart baby is nothing compared to this love. How did he do it? Hebrews says it was for the joy set before him that he endured the cross. Being forsaken, despised, rejected, smitten leads to joy?

There must be something about desperate, painful love that produces joy. It was true for Jesus. It’s got to be true for us too. I don’t always know what it looks like to faithfully love D. I don’t know if Louisa has another 728 days of heart beats in her. There’s a lot I don’t know. But I do know that at the end of this story there is infinite joy. In fact, James tells us:

Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.

Perfect? Complete? Lacking in NOTHING? Sounds really, really good right about now.

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11 thoughts on “Heartache, Heartbreak, and Heart Failure”

  1. Ali says:

    thank you for your story; sorrowful yet always rejoicing, as having nothing yet possessing all things;
    may our Lord Jesus Christ Himself and God our Father who loves you and gives eternal comfort and good hope by grace, comfort and strengthen your heart this very day [2 Cor 6:10-11;2 Thess 2:16-17]

  2. Tom Magness says:

    Brother, you have my prayers as I write this. My advice (which you can choose to have or have not, I won’t be offended) is to school D at home for a time. We did that after one of my sons ran out of school after I’d dropped him off. He schooled at home for a few weeks, then began to do half days at school with mum staying. Then she started helping another class, and he grew used to her not being there. Eventually he returned to full time schooling. I listen to him every night before I pray by his bedside, and he opens up about all the little things that are big things to him, and we talk about ways to cope. Hope that helps. Remember, being fair to your kids doesn’t mean treating them all the same. It just means loving them all the same.

  3. Susan says:

    Painful things to deal with! Thanks for sharing. My brother and sister-in-law had four kids of their own and ended up adopting two baby boys over a couple of year’s time. One boy has fetal alcohol syndrome and the other is cognitively impaired, which they didn’t have any way of knowing when they adopted him as a baby.
    It had been a long hard road with the two boys, but there has been light along the way as well. As I recall, both boys were prone to getting up at night and not sleeping well for years, and neither was potty trained till about age eight. The older has behavior problems. My brother is a pediatrician in Alaska so we haven’t seen much of them over the years. The older boy wrote the most amazing letter to my sister-in-law not long ago, expressing his gratitude for all of her love and caring for him–saying that he didn’t feel the need to find his bio parents because he felt so blessed to have been raised by her and my brother. He also acknowledged that he knew Jesus because they had adopted him and raised him to know the Lord.

    I’m so sorry that you have to deal with such agonizing struggles. I can relate in part due to a painful relationship I had to endure for many, many years. I also have a child with Cerebral Palsy.
    Here I am 28 years into marriage with three children, ages 14-25, and I can now say that some of the most difficult things have improved so much. Of course God doesn’t waste our suffering. I know he has shaped me through it all and I am more focused on serving and honoring Him than I might otherwise have been.
    I will pray for you and your wife and family. Keep holding on tightly to the Lord!

  4. Neville Briggs says:

    My prayers are for you Nick in this extremely difficult time.
    I pray for you for strength and endurance.
    I get the impression from your blog that you feel alone and uncertain how to cope with what you are facing, yes the Lord is there for us , but so is the church. I hope the members of the local church are supporting and helping you, that’s what they are there for.

  5. Kathleen Quinn says:

    Dear Dr. Nick,
    I am not a member of this church (I live too far away) but my brother is and he suggested I read your blog. I am so glad that he did because I can understand and I feel your pain, worry, sadness and fear of what the future holds for your beautiful daughter, Louisa. My grandson “Bug” (his nickname) was born with LTGA. At 3 years and 27 days old he entered U of M Children’s Mott for a “double switch” operation. The surgery, itself, was a success; however, the complications eventually became too much. He stayed in the hospital for 44 days and his mom, my daughter, stayed at his bedside with him those entire 44 days. I won’t upset you with the “complications” he suffered those 44 days but we did get to bring him home – for 108 days more. His little heart eventually could not do it anymore and 3 days before Christmas in 2014 he passed. I am 61 years old and I can say, without a doubt, that no one on this earth has ever meant more to me than my Bug. I believe he was God’s Messenger to show everyone he ever met the true meaning of pure love. I have never felt that kind of love from any other human, except from Bug. I wanted to share this with you because no matter what God’s future plan is for you, your wife, your children and Louisa, remember that Louisa is showing you what pure love is everyday she is with you. God blessed you with her and even though we cannot understand why He does what He does, He does not do anything without a purpose. I still feel the heartache of loss everyday, but Jesus is bringing me back, day by day, to HIM so that I know I will see my beloved Bug again. My heart breaks for you and your wife and I will keep you in my prayers and again, give and receive all of the love Louisa has to give to you. That you will never ever regret. God Bless and thank you so much for sharing your story.

  6. Sarah says:

    Thanks for your honesty Nick – our 10 month old baby girl has HRHS, and has had 2 surgeries in her short life so far. What you’ve written about your beautiful girl resonates with me – and reminds me all over again of God’s faithfulness and good plans for our lives, even when we face the unexpected. Thanks for the call to always cling to the cross – what a Saviour we have in Jesus. He is the only one who can make broken hearts, physical and spiritual, whole again. Praying for you guys tonight.

  7. Tammy says:

    Dr. Nick: What a wonderful and honest look you have given into your hearts! As I was reading this article forwarded to me by a friend, I was on a plane home from a post adoption/foster care seminar where I was a presenter of a wonderful parenting model called Trust Based Parenting Intervention. I wondered if you are familiar with it? It is the work of Dr. Karyn Purvis and Dr. David Cross of Texas Christian University. It is a model that works so well with kids who come from “Hard Places” (a background of trauma, abuse and neglect) as well as normal neuro-developing kids. It has literally changed our family of 3 bio and 4 adopted kids around in a matter of a year. Would love to discuss with you if you are not familiar. Just say the word! Tammy, Physical Therapist

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  9. Scott says:

    Like other readers, I was not only encouraged to keep trusting in difficult circumstances, to stay true to the Lord when life is difficult, but also my heart went out to you. We are missionaries in Germany. About three years after we got here, our youngest son, then in 5th grade, experienced terrible anxiety about being separated from us, which was also daily expressed in extreme anger. The kicking, screaming, losing control episodes were literally a daily experience. Literally dragging/carrying your 5th-grader into school was a humiliation of us both (though one I was willing to bear). (Homeschooling is illegal in Germany and I’m not sure it would have been the right solution for us, in any case.) Feelings of utter helpless would occasionally overwhelm us. We did not have, on top of that, a very sick child to deal with, but my wife had several nutrition-related issues, unidentifiable for many of those same months, which resulted in her losing very much weight. And thus became another source of fear for the anxious son. Prayers seemed ineffective, but the workings of God are sometimes inscrutable. We tried to keep trusting, tried to remember that God’s deep love had already been shown to us in Christ. I don’t know why, but after eight months of this kind of behavior, it simply stopped. Underlying fears were still there, which we had to work on with Scripture and prayer–indeed, we still are doing so. But the daily struggle suddenly stopped. I have no idea what lies on the path God will take you, but I do pray that he give you strength, real internal, emotional sustenance right now for whatever this day brings.

  10. Rachel Tyson says:

    Thank you. I can relate to so much of this. God bless you.

    Rachel Tyson

  11. Tracy says:

    I had a problem with my fiance 3 months ago,which lead us apart. When he broke up with me,I was no longer myself,i dont know what to do,I feel my life has come to an end, So I went for advice online and i saw so good comment about a spell caster named Robinson buckler, how he help couples to solve their relationship and marriage issues. I email the spell caster on the email which was provided in the comments (Robinson.buckler@yahoo. com ) and I explain my problem to him and I did what he asked me, Before I knew what happened, after 24 hours, my fiance gave me a call and he came back to me and beg for forgiveness, I’m so grateful to these spell caster and i will not stop publishing his name on the internet just for the good work he did for me.If you need his help,you can email Robinson.buckler….

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Kevin DeYoung

Kevin DeYoung is the senior pastor at Christ Covenant Church in Matthews, North Carolina. He is chairman of the board of The Gospel Coalition, assistant professor of systematic theology at Reformed Theological Seminary (Charlotte), and a PhD candidate at the University of Leicester. Kevin and his wife, Trisha, have seven children. You can follow him on Twitter.

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