I am a minister and a theology graduate student…and the parent of a special needs child. My wife has an excellent blog about our sweet Kinsley, but for some time I have intended to write about my journey and its struggles from a theological perspective, but have had a hard time making myself do so. However, last week this was my topic at the Deeper Youth Conference, so I was given added motivation. Here is the first part of what I presented there, largely without editing.
I have a difficult but important topic to discuss. The purpose of our gathering and studying this weekend is for the purpose of developing a deeper faith, but as a person of faith, what do you do when bad things happen in life? What do you do when things don’t turn out the way you plan, and your life is marred by heartache?
Let’s begin by looking at some Scripture:
“Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to 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.”
“Indeed, all who desire to live a godly life in Christ Jesus will be persecuted…”
(2 Timothy 3.12)
”Blessed are those who are persecuted for righteousness’ sake, for theirs is the kingdom of heaven. Blessed are you when others revile you and persecute you and utter all kinds of evil against you falsely on my account. Rejoice and be glad, for your reward is great in heaven, for so they persecuted the prophets who were before you.”
What do all of those Scriptures have in common? Though different words are used—sufferings, trials, persecution—they all speak of the idea of suffering. And more than that, they all speak of suffering not as a possibility to be considered, but a certainty to be prepared for.
So when the Bible promises us that the Christian life won’t be easy and that suffering will be a part of it, why do we think that if we try to devote ourselves to God we won’t have any problems?
Sure, we might claim that we don’t really feel this way, but deep down, aren’t we a little surprised when hard times come? Since we’ve given our lives to God, if we’re honest, don’t we feel like we deserve something better from Him?
Some of you know me pretty well; some of you don’t know me at all. I am a youth minister, and have been for several years. My dad is a preacher and has been for my entire life, which means that I grew up as a PK (preacher’s kid).
I certainly was not perfect as a teenager, but I was a pretty good kid. I made good grades; I tried to avoid doing bad things. I went to church all the time, and I was the kind of kid that youth ministers love: I answered questions in class, I went to youth activities, and I tried to be a good example to younger kids.
After I graduated I went off to a Christian college, and while there I grew in my faith in a lot of ways. I became more serious about a lot of things. I didn’t really plan on going into full-time ministry, but ultimately I felt like God was leading me on that path, and here I am, several years later, a full-time youth minister. I spend my life studying God’s word, trying to teach it to teenagers, and trying to help them develop a faith that will last a lifetime (and messing up in all of those areas)
With the career path that I’ve chosen, I’ll never be rich; I’ll never be famous. But I think I’m doing what God wants me to do.
And so, it came as a surprise to me (although it shouldn’t have; see scriptures above) when my life got really tough.
I met my wife, Caroline, in college, and we got married in 2006. My wife is awesome. She is my best friend. We have fun playing together, and working together, and dreaming together, and even arguing with one another.
And as married people generally do, we decided that we wanted to have kids (she actually decided that before I did, but she eventually convinced me) and in early 2011, we learned that we were expecting. And that was great and we were really excited…but that excitement quickly turned to sorrow when Caroline had a miscarriage and we lost the baby early in the pregnancy on January 9, 2011.
What an awful, dark, black time that was for us! We felt helpless and powerless—there was nothing we could do. And what’s worse, a lot of people didn’t know anything about it because we hadn’t even told many people that we were pregnant yet. And it’s always harder to go through difficult times on your own.
With time, things got better. It still hurts—I can still remember that horrible feeling—but it became more of a dull ache than a sharp pain.
Within a few months, we learned that we were pregnant again. And we were excited again, but oh so nervous. We prayed and tried not to worry, but we couldn’t help but be concerned that the same thing might happen again and that the pregnancy might end in miscarriage.
But praise God! It didn’t, and our sweet daughter Kinsley was born in December 2011. She was big and healthy and we spent the next few months trying to figure out how to be parents to a newborn. It was exhausting and awesome.
But after a few months, my wife started getting concerned. You see, babies as they develop start to do certain things at certain ages (roll over from their front to their back, hold their heads up, push up, babble, crawl, etc.). Those are called milestones. And although it’s not an exact science, we have a pretty good idea of how old babies should be when they achieve certain milestones.
The problem was that Kinsley was way behind on her milestones. She couldn’t hold her head up like other babies did. When she was on the ground she wouldn’t really try to push up or move around or look around; she would just lay there.
So over a period of several weeks we took her to get a bunch of different kinds of tests done: a physical therapy evaluation to see how far behind she was, and an EEG and an MRI to see if there was anything physically wrong with her brain. After what seemed like a long time, we finally got the results on November 20, 2012. And it wasn’t good news. Kinsley had significant problems in her brain which indicated that she had a very rare kind of disease that would severely affect her life and limit what she would be able to do.
Again the darkness settled in over our lives.
It took some genetic testing and a lot more waiting before we got an actual diagnosis: Kinsley has a rare form of congenital muscular dystrophy called Muscle Eye Brain Disease (MEB). This is a genetic disorder—Kinsley got it because the genes she got from Caroline and the genes she got from me combined to form a mutation which causes her brain (and as a result her muscles and her eyes) to not work the way they are supposed to.
Children with MEB usually have a hard time learning to crawl or walk, most of them are non-verbal (they are unable to speak), and they are more vulnerable to a lot of health problems which can lead to a shortened lifespan.
Boy, talk about tough news! It all seemed like a cruel trick! After our miscarriage, we had been so concerned all during Kinsley’s pregnancy because we were afraid that it might happen again. When it didn’t and Kinsley was born without problems, we thought we were out of the woods and that everything would be fine…and then her diagnosis hit us like a ton of bricks.
It didn’t seem fair. After all, thousands upon thousands of healthy babies are born everyday, many of them to people who aren’t Christians at all. Some of them are born to teenagers who aren’t even married and don’t even want to have a child in the first place!
And here I am, a minister, someone who is trying his best to live a life in God’s service, and it’s my baby who is cursed with this terrible disease.
C’mon, God. Don’t I deserve better than that?