Heartache, Heartbreak, and Heart Failure

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.