I know many of you were praying for me as I prepared to speak to parents at Lakeview Baptist Church in Auburn, Alabama. Thank you for doing so! The time there was sweet.
The audio of that talk is available here: Near His Heart Dinner – Feb 22 2013 (there’s about a 30 second delay before the audio begins).
You can watch the entire event online here.
Below is my manuscript.
Near His Heart Dinner
February 22, 2013
Thank you Julie and Anthony for your hospitality and for organizing this evening. And thank you to the more than 130 volunteers who are caring for the children, serving the meal and making all these table conversations possible. This is a great gift.
My name is John Knight. Dianne and I have four children. The reason I’m here is our oldest, Paul, is multiply-disabled – blind, autistic, cognitively impaired, has epilepsy, eating and sleeping disorders, orthopedic issues. My youngest son, Johnny, was born two months early. And my wife lives with Stage IV breast cancer.
And I want you to know that God is good in all his ways, and all his works, he is glorious beyond imagination, he delights in all the ways he creates human beings. I did not always know that, and I want you to know that.
This will come in three parts – the early days of disability, God’s glorious rescue, and God’s persistent help since then.
But first, I want to pause to thank God and to ask for his help.
Prayer: Lord, you have gathered us here for your glory and for our good. Please, come Lord, help us see you and experience you and love you. Please help me now to make much of you, for your name’s sake and for these friends. I ask in Jesus’ name, amen.
I’m not going to demand anything from you tonight – you are safe here. This is not an IEP meeting with the surprise announcements and decisions and reams of paperwork and processes. I’m not a doctor who will attempt to tell you things about your child that aren’t accurate or about your parenting which isn’t helpful or about your attitude which isn’t true. I am not a social worker. I do not work for an insurance company. You can relax here; you can even rest here. I will not cast stones.
Or, maybe more accurately, I won’t cast stones because I want to avoid being called a hypocrite.
I was a good boy growing up. I gave my parents little trouble – I didn’t get detention at school. I got good grades, attended church, and had decent friends. Though I was something of a whiner, I would do what was expected of me. My parents could not have done a better job in raising me – attentive, high standards and high expectations, but gracious and kind and godly. I went to a Baptist college in Minnesota and again did well academically while avoiding the worst excesses of many in college. I met a beautiful girl. She attended a ‘known’ church in our area and I decided I should attend as well. We eventually married. I completed a graduate degree, spent a short time in government service then landed in non-profits. We did not accumulate debt, became members of that same church, joined a small group, attended Sunday School, memorized verses and volunteered. We were the type of young couple that people say they really enjoy having at church.
We ran into a little problem having children; we were surrounded by pregnant women and would sometimes get the question about when we would have children. That was painful, but we didn’t talk about it openly. As each month passed without a pregnancy and medical professionals not being able to tell us why we couldn’t conceive, the tears of disappointment came more quickly from my wife, and my own bewilderment grew. This was not as it was supposed to be.
Then, one day, those tears stopped and my bewilderment ended, because a child had been conceived. Our “long” season of suffering had ended.
On July 3, 1995 we needed to get to the hospital because our first baby was on the way. Nothing terribly out of the ordinary was happening – this was just days before our baby’s due date. On July 4 this child finally decided to enter this world and we discovered we had a son; a beautiful son. Dianne cuddled him for a moment and then handed him over to the nurse to clean him up. The next stage of our orderly life had begun.
And then I heard those words that changed the course of my life: I think we have a problem here. There was a quality in the nurse’s voice, some tone or something that caught my ear – this was not a small problem. The issue was significant enough to call in the neonatologist and the news came – he had no eyes, or his eyes were so small they couldn’t be detected. He was just a few minutes into the world and we knew he was blind. As that news came crashing over us, he also immediately became interesting to the young doctors and interns and residents at that teaching hospital where he had been born. It seemed every time we turned around there was another person poking at him. The medical tests and specialists started almost right away. The questions to us started right away. This wasn’t what I had imagined. I had no category for it.
This was a nightmare.
That first night of his life, I was standing outside the hospital, under an awning because it was pouring rain and wondering about all this, especially the question – who am I? I had been a son and grandson my entire life. I had been a younger brother. I had been an uncle since I was 14. I was a husband of several years at this point. But this? I had already heard all the gentle teasing and sometimes serious observations about how much children would change our lives – but nobody meant this, nobody warned me about this. This boy would not experience the world like I had experienced the world. I already didn’t know how to parent, and now I was responsible for a boy I didn’t understand with an issue I didn’t want in a life I didn’t expect. But a father I was, his father.
There’s something interesting about thinking oneself a good boy and then a good young man and experiencing all the benefits of following the rules for 29 years, a kind of momentum that carried me through those first days, then weeks. The hospital chaplains, who were frankly pathetic in their attempts to provide comfort or spiritual care, would walk away amazed at the way I prayed, at the scripture I had memorized, and how I talked about God. But you go to a church like mine long enough and you know how to do such things.
But things weren’t right inside of me. This wasn’t right. This wasn’t part of the deal I had with God. God owed me after how I had behaved.
Paul was just under three months of age when we took him in for what I thought was out-patient surgery on his nose and palate. The doctor expressed some annoyance at my annoyance when I learned he would be in the hospital overnight, maybe two. The surgery was not complicated. The medical facility was highly regarded. The surgeons were all first-rate. So we handed our baby off, and waited.
A couple hours later a very sober-looking surgeon found us in the waiting room and explained things had not gone exactly as planned. I still wasn’t used to things not going as planned. The work on his face and palate and nose had proceeded, but something had gone wrong. The doctor would lead us to the intensive care unit at Minneapolis Children’s Hospital, to a particular glass-encased room with a bed surrounded by monitors and lights and equipment – and in the midst of all that technology was my tiny baby boy hooked up to more tubes and probes than I thought a body could tolerate. And something died inside of me.
The good, God-fearing, rule-following, pleasant, affable man died in that moment. The lifetime momentum had finally run out. I had followed the rules my entire life and this what I had gotten in return.
I did not deserve this. My son certainly did not deserve this. God was still real, but he was not good, not kind, not purposeful, not merciful, not fair. He was capricious. He was cruel. He was most certainly strong, but he was not to be trusted or believed.
So I ended my association with my church and my small group and my Sunday school and took my little family away from church. I stopped reading the bible and listening to sermons and praying.
I had every intention of taking care of my son and being a responsible husband. But my life was basically over.
Still, that desire to be known as a good person was so strong that even my drug of choice was socially acceptable – television. Work, whatever basic needs for my family needed to be addressed, then hours and hours of television.
Hours of frivolity and banality pouring into my head because that was better than actually feeling what I was feeling – the anger, the bitterness, the loss of control as doctors and social workers and educators always had a better idea of what should be happening for this child, the realization that dads don’t really get a say with these experts because we’re too inattentive or too stupid or too in denial or too distant to have an accurate picture. To those systems, regardless of their pamphlets and their dad groups, and their talk about family, I was at best a checkbook and insurance card and at worst the source of even greater pain for my wife. And the culture, man, I began to see things I had never seen before directed at me – the pity, the sadness, my horror at understanding they thought I was broken and needy, which I hated, but knowing I was even more broken and needy than they could ever begin to know.
And the well-meaning but deeply flawed things people said: God only gives you what you can handle. Have you ever heard that? Or you must be very special to have been given such a special child. Statements like that were like gasoline being thrown on the constant little flame of anger and anxiety I kept constantly burning in my soul. The flash of anger would sometimes spill out right onto them.
So do you see why you’re safe here? I have said things out loud that you have probably only thought. If you’ve said things out loud, well, you aren’t going to frighten me and I’m certainly not going to wag my finger at you. But I hope it is also clear why I won’t be particularly impressed by your church attendance or your attentiveness to your children or your volunteering as I did all those things. But I will probably embrace you as a brother or sister who understands.
Now, you might be thinking to yourself, this isn’t exactly the story I was expecting. We are at church after all.
Indeed we are. The church of a bloody, suffering, abandoned, despised, maligned savior who did not have to be any of those things, but in perfect obedience and perfect agreement with the Father pursued the glory of the Father by becoming a man. We should never forget, for those of us who cling to Jesus in faith, that the church is the bride of the lamb who was slaughtered. Jesus knows pain.
So, what happened? Clearly Julie would not have invited me here if I was still in that God-blaspheming, rage-filled, hopeless state. 30 years of playing the part of the good boy would not be able to cover up that kind of despair and anger – something must have changed.
You might have noticed that everything that has preceded this was about me and how I felt and I how I understood the world. And that was the problem – I interpreted everything through the lens of me. That distorted lens could take anything, including God’s word, and make it about me. I was the central actor in this play, I was the creator of reality, I could predict the future, I could discern the good from the evil – and God had come up lacking.
God, however, was both not impressed and not phased by any of this. Nor was he surprised. I am tempted to say that God began moving at this point but it is clear that God had been moving me the entire time. And so the next phase of God’s plan in my life began.
The first thing he did was to give me a father who refused to stop loving me and who immediately understood his grandson as being a gift to him and to the world. I know not all of you have that, so I do not mean to make this yet another point against God but to point out that God knew that his glory would be magnified through a man refusing to let his son slip quietly away into hopelessness and despair. That man happened to be my father; it could be anyone.
The second thing God did was have one family from our church notice that we were gone and basically adopt us into their lives. I do not to this day know exactly why. Nor do I completely understand their dogged persistence – I would sit at their dining room table, enjoying extraordinary hospitality and say vicious things about God and his ways, using my son as the evidence of his capriciousness and cruelty. And their children, then ages 9 through 16, also sat at that table hearing these things.
Yet they kept inviting us, and praying for us, and just showing up in our lives. They confounded me with their care and concern. And they continued to love us without any evidence that anything was changing; several years after all of this I asked Geralyn if there was any evidence of change during these days and she quite honestly stated, no, we saw nothing. That was humbling – and I also realized the old man was still lingering in here, craving the desire to earn my righteousness.
But the key moment came in a hospital in Indianapolis. Even though I live less than 90 miles from the Mayo Clinic, one of the finest medical facilities in the world, there was no surgeon in Minnesota who could do the kind of work on my son’s face that he needed. And that is how I ended up in a basement corridor of a hospital in Indianapolis, thinking murderous thoughts about a doctor which I had every desire to fulfill and to which I indeed knew I would fulfill. I was not out of control; I knew exactly what I was thinking about.
It is important that you get this picture of who I was clearly in your head – I had rejected everything about God and his people and his word, I was actively hardening my heart against him and openly defying him. I removed myself from godly influences and influencers – and in that moment with my murderous intentions, without anything in me seeking God, nobody talking to me about Jesus, God cracked me open and let me see the depths of my sinful heart without any opportunity to appeal to my supposed comparative goodness. In that moment I knew not only was I not good, I was an entirely sin-filled, violent man, separated from God, entirely lost, entirely without hope.
But for Jesus. Jesus was no longer an idea but a person, a real person with a real solution. A real person I needed. I knew I could not earn his favor – I had been given a glimpse of who I really was – but he was not asking me to earn it – he offered his grace freely. He had lived a sinless life in perfect obedience and perfect agreement with the Father’s plan. All those lost years in church were valuable – that knowledge was now connected to the real experience of desperate need. By grasping him in faith my sin is transferred to him and his righteousness is wrapped around me so that when the Father looks at me, he sees the righteousness of Jesus, his faithful son. So, in desperation, I grabbed hold of Jesus.
I’d like to say that everything immediately became perfect and here we are. But it wasn’t like that.
My son was still disabled; in fact, we kept adding things to describe how he experiences life. The eating and sleeping issues almost from the beginning. The autism diagnosis and cognitive issues came at about the age of 6. The growth hormone deficiency at about 8. The epilepsy at 16. Today he has orthopedic issues in his hips and knees. And we haven’t even gotten to my wife’s health issues yet. Nothing has gotten easier over time. Nothing has gotten less expensive or less complicated over time.
Nor did all my anger and pride issues immediately go away. I truly marvel at the stories of God’s immediately releasing people from things like addictions to alcohol or drugs or money or whatever. God has that power and that authority; I absolutely believe that. For me, God’s path would be different – the sinful rage was still there.
Get this: I knew I had experienced the forgiveness of Jesus, I knew my sins were covered, yet I was angry and bitter, weighed down with it, in fact. Yet, this little seed of affection for God had taken root, which God was nurturing. God was helping me along. Do not despise little affections for God; they are as real as big affections for God.
I returned my family to church, desiring to experience this Jesus in ways I had never been desiring before. It was a year before I could get through a sermon without crying because I knew what God had saved me from. Yet, the anger was still there. I understood, really understood, what Paul said in Romans 7: For I know that nothing good dwells in me, that is, in my flesh. For I have the desire to do what is right, but not the ability to carry it out. For I do not do the good I want, but the evil I do not want is what I keep on doing. (Romans 7:18-19 ESV)
I love that descriptor of Jesus as the Great Physician. We let our doctors do incredible things to us, things that really hurt us badly, to help us experience improved physical health. And sometimes we as parents have to make that call for our children, knowing we will cause them great hurt on the path to something better. Jesus did that for me with my anger.
Sometimes it would bubble over and I would seek to hurt people who loved me at church. Sometimes I would deny it was even there and push it down; that never worked for long. But what God was doing was exposing and cutting away this cancer on my soul, the desire to have my way all the time, the desire to be in control, the longing to be God which was getting in the way of me experiencing God.
It was bloody and painful – I didn’t really want to let that anger go and this culture tells me constantly that it is ok for me to be angry about my circumstances. But God didn’t want me to have that sad, small life. He wanted me to have more of him. He wanted me to be free.
God did that for me – not me. Yes, I had good people around me who helped steer me to God! God’s word became more precious to me. And I began to understand some things I had never understood before, by the grace and the power of the Holy Spirit.
I realized that while I had never intellectually embraced the health and wealth prosperity gospel, I certainly had done so functionally. I had put God in a little category bound by my own definition of what is good and right and happy. My son’s disabilities ruined that definition – I didn’t have a category for God being good and my son being disabled. But I also didn’t really have a category for me being that sinful and Jesus being for me, until Jesus showed me that I was that sinful and he was for me.
Though I had read the Bible most of my life, I started to read the Bible really for the first time. And it says some radical things:
Like, Jesus was driven by something more than determination, more than just obedience:
Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross. Hebrews 12:2
For the sake of joy – and we are told to look to him as our example. And because of him, I could be free:
There is therefore now no condemnation for those who are in Christ Jesus. For the law of the Spirit of life has set you free in Christ Jesus from the law of sin and death. (Romans 8:1-2 ESV)
Now, right now, no condemnation!
That sounded pretty good – but could this possibly include disability? Didn’t Jesus just go around healing people? Disability seems like and feels like God is either not in control or he’s not good.
No, God is in control and he is good and he is intentional about disability: Exodus 4:11
Then the LORD said to him, “Who has made man’s mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the LORD? (Exodus 4:11 ESV)
No excuses, no embarrassments – just a statement of fact about what he chooses to do.
or John 9:1-3:
As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him. (John 9:1-3 ESV)
God, intentionally giving a man blindness, not as a specific consequence of his sin but that something greater could happen. Much greater – the works of God might be displayed in him then and serve as encouragement to us today about who Jesus is!
Or Psalm 139:
For you formed my inward parts;
you knitted me together in my mother’s womb. (Psalm 139:13 ESV)
God is knitting together, purposefully and actively and uniquely, some who will be disabled. But he isn’t finished – see v. 16
Your eyes saw my unformed substance;
in your book were written, every one of them, the days that were formed for me,
when as yet there was none of them.
(Psalm 139:16 ESV)
Every day, every rotten day of treatments and therapies and bills and loneliness and tears are known by God – he is not surprised by any of this that we are experiencing. In fact, he is keeping a record even of your tears:
You have kept count of my tossings;
put my tears in your bottle.
Are they not in your book? (Psalm 56:8 ESV)
And he wants us to bring our whole, authentic selves to him. He already knows when we’re angry or bitter or doubting or troubled, we might as well admit it when we come to him. He is not afraid nor is he surprised.
But I frequently come back to this point: Jesus can relate to our pain! He knows pain!
And (Jesus) prayed, saying, “Father, if you are willing, remove this cup from me. Nevertheless, not my will, but yours, be done.” And there appeared to him an angel from heaven, strengthening him. And being in an agony he prayed more earnestly; and his sweat became like great drops of blood falling down to the ground. (Luke 22:41-44 ESV)
He knows our days, he knows our pain, he knows everything about everything – and it is for a great purpose in bringing many more to him.
Suffering has purpose! Our sufferings clear away the things that would charm us away from God – the money, the stuff, the easy life, the lack of suffering tend to put our eyes on almost anything but God. But in suffering, we know we are not in charge and long for something better and those things lose their ability to charm us (at least for a season – sin is so strong in us).
But there is more – he doesn’t just leave us in that suffering state!
But he said to me (the Apostle Paul), “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. (2 Corinthians 12:9-10 ESV)
Do you see it – in our weakness we get something that will last forever – more of Christ’s power resting on us, more of God.
And this comes as the free gift from God. You have probably heard this before, but I want you to hear this again:
For by grace you have been saved through faith. And this is not your own doing; it is the gift of God, not a result of works, so that no one may boast. For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them. (Ephesians 2:8-10 ESV)
We are his workmanship, all of us, including those we love who live with disability. The most vulnerable, weak, supposedly incapable child was created for good works; the child who is violent or depressed or without any mood at all was created by God for a good purpose. In fact, that is especially true for those the culture considers worthless. Hear how God talks about his weaker members:
The eye cannot say to the hand, “I have no need of you,” nor again the head to the feet, “I have no need of you.” On the contrary, the parts of the body that seem to be weaker are indispensable, (1 Corinthians 12:21-22 ESV)
You know what indispensable means, right? It means it can’t work without them. And notice the ‘seems to be weaker’ phrase – Paul recognizes that in our sinful state we will overemphasize some things and denigrate others. Yet that is not how God sees things:
But God chose what is foolish in the world to shame the wise; God chose what is weak in the world to shame the strong; God chose what is low and despised in the world, even things that are not, to bring to nothing things that are, so that no human being might boast in the presence of God. And because of him you are in Christ Jesus, who became to us wisdom from God, righteousness and sanctification and redemption, so that, as it is written, “Let the one who boasts, boast in the Lord.” (1 Corinthians 1:27-31 ESV)
Is life hard? Yes! This life is hard. Jesus warned us of that. Paul warned us of that. Peter warned us about suffering in this present age. There are days when I wake up and do not want to do what I need to do to take care of my family, or more specifically to take care of my son’s many needs. My heart still leans into comfort over compassion, and anxiety about what is in front of me rather than clinging to God’s absolute, loving authority. God has been merciful to let me come to him again and again and ask for help – in fact, that honors him because he is the source of all help and all good things. And after asking for help and knowing that he has promised to supply all that I need (not all that I think I need – there is a difference), the day begins.
To show you how radically God has done this surgery on my heart, in 1995 after the birth of my son and only knowing he was blind, I cursed God and took my family out of church. In October 2004 when my wife was diagnosed with Stage IV breast cancer, with mets in her spine, ribs and lymph system, we do not remember doubting his goodness or his love toward us. God had removed my heart of granite and replaced it with one that is soft and alive and beating. This happened over time.
He keeps showing me I have a long way to go in my sanctification. I wish I didn’t have to struggle with sin as much and as hard as I do, but he has also shown a daily ability to give me what I need.
Disability is hard. And God is good. He is ready to help you.
Maybe this evening has helped you see him. Consider even the miracle of this evening – Julie and Anthony live this hard life with disability in their much-loved son. They didn’t have to do this evening for us, but they did because they love you even if they have never met you before. The scores of volunteers who are helping serve the meal and watch the children and make us comfortable don’t have to do it – but God brought them here to serve you. And you know what will happen, don’t you – some of them will thank you for the privilege of being in the presence of your disabled children; they will be blessed.
This church is not a perfect place; it is full of people still struggling with their sin. But it is a place where I have encountered people who know Jesus and want to help you know him as well – as savior, as redeemer, as helper, as friend. Just because this feels like a common thing – we’ve all been to many such dinners – shouldn’t make it any less a work of the very God of the universe who wants you to know him better.
And maybe God might be pleased to do for you what he did for me. For a season I thought my son was a curse. Now, I live in the reality that God used my son to reveal the depths of my own depravity, my desperate need for a savior, the beauty of Jesus Christ, the daily help he provides, and the desire to make him known so others can experience this life of ‘as sorrowful, yet always rejoicing.’
In doing so he helped me see – my son’s disabilities are not a curse, but an incredible blessing because at the end of every day and because of that boy, I have been given more of God, my wife has been given more of God, my other children understand God more accurately, my church is a different place because God is at the center in making Paul the way he did. It didn’t happen for me immediately, and it didn’t happen without much painful rooting out of sin in my life, but it did happen, because God is good in disability, because he has purpose in disability, and because he doesn’t want us to cling to things that will end, but to him who will never end. He will keep all his promises to us. And he offers himself to us all, freely.
On the CD you received is a message from Greg Lucas where he makes the point that we should run to Jesus. He is absolutely right – run to Jesus! I encourage you to listen to that one and all of them for encouragement about our God.
I’m willing to stay until they kick me out to talk to anyone about this God. Thank you, again, Julie and Anthony, for this privilege of being with my extended family.
Let us pray.
Lord, thank you for these people, for their children, and for this evening. Please, Lord, let us see you more clearly, trust your promises over our perceptions, and help us cling to Jesus with all our might. Please, Lord, this world is hard. We need a savior, we need the helper you promised. Come, give us more of you. In Jesus name, amen.