The online journal of Luke Dockery

Category: Kinsley (Page 1 of 4)

Two Graduations: What My Special Needs Daughter Taught Me About Following Jesus

It’s June, which means that we have just completed another graduation season. As a youth minister, I go to a lot of graduations, but this year there were a couple of graduation ceremonies that were more significant to me.

First was my own graduation from Harding School of Theology. This one was a long time coming. It was an extensive program (a 78-hour degree, which is more coursework than many master’s and doctorate programs combined), and add to that the fact that I completed it while working full time, figuring out how to be a dad, and living hundreds of miles away, and I can say with only minimal chagrin that I started the program way back in 2010. Finishing a program that you have been engaged in for so long is certainly an accomplishment of sorts, and I’ve had a lot of people ask me how it feels to be done. I definitely feel grateful for all that I have learned and for all who made it possible (HST faculty and staff, my wife, my elders at church, etc.). I am also pleased to be done. But my overwhelming emotion is a little more difficult to explain, and that’s what this post is about.

About 10 days after my graduation, I went to another graduation ceremony—Kinsley’s Kindergarten graduation. I have written in different places about how the last 18 months or so have been very difficult for my little girl. Increased seizure activity has been hard to control and has led to several regressions (i.e., she has lost abilities that she once had). Nevertheless, during this past school year, she started Kindergarten in a self-contained class. Kinsley’s academic goals were made with her special needs in mind and were very modest by the standards of “typical” children, but still, due to the regressions, she didn’t hit those goals. In some sense, you could even say that her graduation from Kindergarten was something of a formality. But I can tell you this: I am far prouder of her graduation than my own.

•  •  •

I have always been a high achiever. I have always gotten good grades and done well in school. I was involved in a bunch of extracurricular activities to beef up my college résumé. I was a good (not great) athlete who worked hard and was, at times, pretty successful.

When I started grad school, I began to work even harder. I had become convinced that doing my best was a spiritual requirement (I still believe this, by the way), but “doing my best” easily became a justification for obsessive perfectionism. In school, I wanted every research paper to be perfect. In ministry, I wanted every teenager to be faithful and every sermon to be excellent. In my personal faith and theology, I wanted to be right on every issue and know the answer to every question. Some of this obsessive perfectionism I come by naturally (it runs in my family), but also, it was a core component of my faith. To be clear, I was never taught works righteousness growing up, or that God’s love for me was tied to my achievements and accomplishments, but somewhere along the way this became a big part of what following Jesus was for me.

When Kinsley came into my life (and more specifically, when she began to miss developmental milestones and we received her diagnosis), everything began to change for me. The reality is that I have a beautiful, wonderful daughter who, from a worldly perspective, will never achieve much of anything. And while I lament the ways in which her horrible disease has placed limitations upon her life, the reality is this: I don’t care about her achievements. I love her because she is my daughter, and I delight in her.

This realization and the implications of it have significantly affected my life. I don’t really care about achievement anymore. I don’t care about intelligence or talent. When parents talk about how clever their children are, or when friends speak of their accomplishments, I smile and try to be affirming, but it simply doesn’t matter much to me. And from that perspective, my own graduation doesn’t matter much to me either.

I still work hard, because I believe it is a spiritual imperative to do so—in all things I work as if I am working for Jesus because, really, I am. But I don’t work hard so God will love me more, or because my value is tied to my achievements. God loves me because I am His child, and that is enough.

•  •  •

I grew up in the church, have been a Christian for 20 years, a minister for 12, and I have a graduate degree in theology. But it was my daughter who taught me about grace simply by being her perfect, disabled self.

On second thought, that’s quite an achievement.

 

Honest Thoughts from a Hospital Room

I am writing from my daughter’s room at Arkansas Children’s Hospital, following her successful VNS surgery this morning. It is well after midnight; Caroline is asleep, and Kinsley is trying to be. It is an excellent time for reflection.

I am not writing the following to elicit sympathy from those who read it, nor am I seeking “cheering up”. I don’t want to come across as whiny or depressing; rather, I write in the hope that my (honest) ramblings may provide some encouragement to others.


Over the last few years, our ongoing struggles with Kinsley—learning about her brain abnormalities, receiving a diagnosis, traveling extensively to see specialists, attempting to manage her seizures, dealing with her daily special needs—have led to countless people telling us something to the effect of, “You guys are such amazing parents,” or “Your faith is such a great example to us.”

Those are kind words with kind intentions behind them, but sometimes they can be frustrating as well. You see, we didn’t ask to have the opportunity to be such wonderful parents, or to have the platform to wrestle with our faith in such a way that we can be good examples for others. And furthermore, to be frank, sometimes we really don’t feel like wonderful parents or great examples at all. We feel that we do no more than anyone else would in our shoes, we feel helpless—completely unable to do anything to help our little girl, and we feel so very, very tired—tired of seizures, tired of doctor appointments, and tired of our sweet princess having to deal with more than she should ever have to.

And yet…if God can somehow use our helpless and tired efforts to bring encouragement to someone else or to shine a ray of light into a dark world…praise the Lord. Truly, what wondrous things He accomplishes through human weakness.

What a blessing!


Although I do not find myself particularly inclined to do so, it sometimes can be tempting for those in full-time ministry to look down upon those who engage in “secular” work (you may even hear that terminology from time to time).

Over the last few years, as we have been on the receiving end of such amazing care from so many therapists (basically our favorite people ever), nurses, doctors, teachers, aides, etc., it has deeply reinforced in my own mind how sacred it is to use your vocation as a means of blessing others. God’s work is done in all sorts of places, and I am deeply grateful for those who have so clearly shown me that as we have traveled this journey.

What a blessing!


Throughout this process, there are times when I feel that I am at my wit’s end. Completely overwhelmed. Barely able to keep my head above water. Emotionally stressed. Spiritually fatigued. Physically exhausted.

Increasingly, I have come to suspect that we are sustained by prayer. Certainly our own prayers, but, in light of the spiritual fatigue I mentioned above, my prayers are not exactly great right now—they consist of a lot of sighs and pleadings and persistence and “groanings too deep for words”.

No, I believe that we are especially sustained by the prayers of others. From the beginning, it has been overwhelming to me the way that others have responded to our situation. It is beyond humbling to know that people from all over the world, including many we don’t even personally know, are praying for us. More than that, more people than I can count have told me that they pray for Kinsley and our family every day. How can I even respond to that? What a gift that is!

I am so deeply, deeply grateful. And beyond the prayers—every single kindness means so much: the kind words and messages we receive, the concerned questions people ask, the social media well-wishings, the silent hugs, the money for travel expenses slipped into a handshake—all of it. People extend us so much love so frequently, that it is all I can do to refrain from constantly bursting into tears (because that would be awkward, right?).

But those are healing tears—tears belonging to a Kingdom that seeks to restore the goodness of a broken world.

What a blessing!

Sacred Moments, Holy Ground

In Exodus 3 we encounter the famous story of God appearing to Moses for the purpose of recruiting him to liberate the people of Israel from slavery in Egypt. One of the most interesting aspects of the story is the way that God appears to Moses: in the form of a fiery bush that is not consumed by the flames that engulf it. As Moses draws near, God tells him to remove his sandals, because he is standing on holy ground. What made the ground holy? It was not that there was something inherently special about the bush. As a shepherd, Moses spent a lot of time leading his flock in the wilderness, and I think it’s possible that he had been by this same spot before, and had maybe even seen the same bush.

There was nothing particularly holy about it at those other times, but it was different now: it was a sacred moment…it was holy ground.

God’s presence made it that way.

We have had a rough time at our house for the last several weeks. Over the last several months, Kinsley’s seizures have gotten more difficult to control, which has led us to trying additional seizure medications and a special diet (you can read more about Kinsley’s story here and here). These efforts have not led to long-term improvement, and at the same time, Kinsley has been more withdrawn: she is often lethargic, sleeps a lot, and plays and interacts with us less. It is difficult to discern if this is caused by the many medications she is on, her seizures, some other factor, or some combination of all of the above.

Even more recently, Kinsley, who has always been a champ at taking her medicine, has become very stubborn about doing so: she will hold it in her mouth for a long time, sometimes eventually swallowing it, and at other times spitting it out. Obviously, she does not get any benefit from seizure medicine that she refuses to take, so this aggravates the problem.

Last night as I was getting her ready for bed, I broke down. Kinsley again spat out one of her doses and I got incredibly frustrated and spoke to her in an exasperated tone. She just looked at me, with her beautiful, innocent, loving eyes. Immediately, my emotions changed, and I told her how truly and deeply sorry I was that she has to deal with all of the stuff and difficulties that she does, more than any little girl should ever have to.

And my nonverbal little princess, who has hardly communicated at all over the last several days, looked at me, put her hand on my chest, laid her head against me to snuggle, and reached out and held onto my arm.

What a powerful message she communicated! Even now, I can hardly write about it without becoming overwhelmed by emotion.

There we were, sitting on the floor by her bed, a place I have been countless times. But it was different now: it was a sacred moment…it was holy ground.

God’s presence made it that way: in His grace, God reached out to me and used my infirmed daughter as an instrument of healing.

P.S. We are going to Arkansas Children’s Hospital in Little Rock tomorrow to consult with a neurosurgeon about a procedure that could potentially help with Kinsley’s seizures. We would greatly appreciate your prayers as we continue to look for ways to help our little girl.

Moral Evil and Natural Evil

In this series, I am attempting to approach the topic of suffering from a variety of different angles. As I mentioned in the first post, I am using the term “suffering” to sum up the famous Problem of Evil. I talk about the Problem of Evil at length in this post on Alexander Campbell, but perhaps it would be beneficial to state the problem outright, the original statement of which is generally credited to Epicurus:

“Is God willing to prevent evil, but not able? Then He is not omnipotent. Is He able, but not willing? Then He is malevolent. Is He both able and willing? Then whence cometh evil? Is He neither able nor willing? Then why call Him God?”

So basically the issue is, if God is good and powerful, why does He allow evil and suffering to exist in the world?

Now, it’s a fair question to ask if all suffering is evil or the result of evil. As humans we admittedly have very limited perspectives, and sometimes things which are good for us certainly don’t seem good at the time they occur (think about an infant getting a vaccine, for example). Regardless, evil certainly exists in the world, and a lot of suffering occurs because of it.

Philosophers and theologians and people who discuss this topic will often distinguish between two kinds of evil: moral evil and natural evil.



Moral Evil

Generally speaking, moral evil refers to the evil acts that people choose to commit. A lot of the suffering which occurs in the world happens because people choose to do things which cause harm to one another. Fatal car accidents caused by alcohol consumption, child molestation, ISIS beheadings, and the Holocaust are all examples of moral evil. People do foolish and terrible things which cause a great deal of suffering for others.

Really, this type of evil is easier to explain, at least, if you have a robust view of human free will. As I discussed a little in this post, I think a theology which embraces the idea that God created humans with free will is important and makes the most sense of the teachings of Scripture. The basic idea is that God created people out of His love and desires that we love Him in return. Certainly God could have created us like robots who had no choice but to “love” Him, but a coerced feeling like that wouldn’t really be love at all. To enable us to choose to love Him, God also gives us the ability to reject Him, and when we abuse our freedom of will, all sorts of bad things can happen.

When it comes to moral evil, you can blame God for the way He made the world (though, based on the previous paragraph, what other options were available?), but really, the blame lies with people who make bad or evil choices.

Natural Evil

Natural evil generally refers to those “random” things which occur, not because of the actions of people, but as a result of the world “naturally” operates (I put those two words in quotations because they are loaded with some major assumptions). Hurricanes, tsunamis, tornadoes, genetic conditions and human decay and death in general are examples of natural evil.

Now, human choices can still exacerbate natural evils and make the suffering greater than it would be otherwise (certain behaviors can make illness more likely, social problems like poverty can increase the amount of suffering which comes from natural disasters, etc.), but for the most part, people have no control over natural evil—we suffer simply because we live in a world where these types of things occur.

Because of this, I think natural evil is a little harder to explain away. We can understand when negative things happen to people who deserve them, and we can understand, as horrible as it is, when people suffer because other people choose to do evil. But why do we live in a world where natural disasters kill so many unsuspecting people? Why do children get cancer and die? Did God design the world this way, and if so, why? If God didn’t design the world this way, what happened to it for everything to get so messed up?

In the next post, I’ll try to take a closer look at natural evil, and specifically, the idea of chaos: the element of randomness in life which we can’t control which has potential for unleashing great suffering. For me, as the parent of a little girl with a genetic condition, this is one of the really tough areas of examining suffering theologically.

A Theological View of Suffering

The topic of suffering (and I use the word “suffering” as a shorthand for the well-known “problem of evil” as well as the existence of undeserved pain and suffering in the world) is one I think about a lot.

Though certainly not a new issue, it is one which I hadn’t thought about or studied much until it touched me personally. Which perhaps is a little selfish, but I guess also is human nature. I’ve written before about struggling with the grief of miscarriage, as well as the heartbreak of my daughter Kinsley being diagnosed with a devastating genetic condition.

In addition to these personal concerns, I also took a class on Providence and Suffering last fall, and as I did a lot of reading on the subject and reflected on those readings, some of my thoughts were further developed and refined.

So what I would like to do intermittently over the next several weeks and months (I’ll be posting other stuff too, unrelated to this topic) is to share some of those thoughts. It will in no way be a systematic coverage of suffering, but it will be a reflection of my efforts to work through some of the difficult questions surrounding this issue (How can a loving God allow pain and suffering? Why do tornados and tsunamis kill innocent people? What is God’s response to the pain and suffering which is present in the world?). I do not claim to have definitive answers to these questions, but I do want to share some ideas and resources which have been helpful to me and have aided my understanding to this point.

I’ll use the end of this post as a Table of Contents for the series:

« Older posts

© 2020 The Doc File

Theme by Anders NorenUp ↑