Category Archives: Encephalitis journey

Love and service

As many of you know, my daughter is recovering from a horrible disease, that has left her brain damaged. We do not know if it is permanent yet. Today she took the initiative and got her own lunch, did her own grooming and folded her own laundry. My heart almost burst with how well she is doing.

My wife, though, has so much pain in her foot that every step is excruciating. She lives with pain that most of us will never experience. She has two dislocated toes that are not healing and the joints have been damaged so that they will not stay where they are supposed to. The doctor has ordered her to stay off of it.

That is challenging, to say the least, because someone needs to care for Margaret. Fortunately, I have a laundry system in place, I am an excellent cook, I know how to vacuum and do it frequently. Susan can sit with Margaret and teach her to read and write again, and I can do the housework and cook and clean. If Susan will follow that plan, her foot can start to heal.

But she is a hard woman to keep down. She has dragons to slay.

 

It reminds me of several years ago. I had a birthday, and Susan and my daughters gave me a huge surprise party. It was wonderful.

It was right in the middle of a huge flare of Susan’s CRPS. Please look it up if you don’t remember it. It is a brutal and excruciating health condition. We went to Italy for the cure.

By the time the guests had arrived and I had gotten there (thoroughly surprised) I could tell by her eyes that she had had enough and her pain was through the roof. I took her to a quiet place and made her sit.

I welcomed everyone, prayed for the meal, and fixed a plate to take to Susan. One man was looking at me with contempt. He sneered to a friend of mine, “Anyone that would take food to his wife is a pussy.”

That was when I realized that this patriarchial, chest-thumping, posturing, posing, “men are to be men and women are to be women” garbage was not just wrong. It was dangerous, unloving, hateful, and set on fire from the depths of hell.

And today I have no patience for it.

I cannot stand the masculine and feminine ontology garbage, as if that is actually a biblical category.

I cannot stand the bullying and the posing and the chest-thumping.

I cannot stand the name calling and the posturing.

What exactly is it that men are supposed to be doing again? What exactly is it that women are supposed to be doing again?

Tell me about how she needs to be “keeper at home” one more time. Tell me about your ideal little fantasy world and about the ontology of my wife. Please enlighten me with your ivory tower back-slapping and speculation and the twisting of the scripture to fit your comfort level. Tell me again about how the men slay the dragons and the women are to be rescued while my wife fights day and night for the life of her daughter. Tell me again about the priority and superiority of men. We are all very impressed down here on earth.

The rest of us are trying to survive. Most of us in the history of the world have not had the luxury of pontificating in our easy chairs while the little woman fixes us a sandwich.

So when you are writing your theses, the rest of us will get on with surviving. I will continue to serve my wife and take the contempt of the mindless drones who cannot see the beauty of the gospel past their own tribe and their own experiences.

I will continue to nurse my daughter back to health and continue to try to get my wife to stay off of her feet so she can heal.

So go back to quoting all of the church fathers and drinking your trendy microbrews through your manly beards while your cowed wives and children kneel tremblingly at your feet. If that floats your boat, go ahead. Don’t be surprised to wake up and find she isn’t there any more. But that isn’t my business.

My dryer just rang, so I will fold clothes. Tonight for dinner I am making mushroom risotto. My risotto is fabulous.

I will probably listen to Air Supply while I am doing it. When I get my family settled, I will pull out my books and my computer again and work on my sermon.

You do your thing.

I’ll do mine.

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Filed under Encephalitis journey, Men and women

When God tests his people…

…That the trial of your faith, being much more precious than of gold that perisheth, though it be tried with fire, might be found unto praise and honour and glory at the appearing of Jesus Christ (1 Peter 1:7)

The idea of God testing his people has been on my mind lately.

I think about it frequently. I wonder why. I know that other Christians struggle with it.

“I’m just going through some testing right now.”

But what does that mean? Does it mean that God is giving you a final test that you had better pass?

Does it mean that God doesn’t know whether your faith is genuine or not and he is testing it to see?

Does it mean that if you can just get over the test with a passing score the difficulty will be taken away and then you can get down with receiving the blessing in your life?

A lot of questions. The answer to all of those questions is, “Certainly not!”

God already knows your heart, even better than you do. He is not surprised at your actions. When he called you and justified you and sanctified you, he already knew all about you. He isn’t going to say, “Wow! But I didn’t know you would do that! That’s it! I’m finished!” Certainly not!

Jesus came to call the sick, the sinner, the poor, the halt, the lame, the foolish, the ignorant, the outcast.

When God sees you, he sees the perfect righteousness of Christ. And he holds you firm with his almighty, infinite hand.

(John 10:27-30)  27 “My sheep hear My voice, and I know them, and they follow Me.
  28 “And I give them eternal life, and they shall never perish; neither shall anyone snatch them out of My hand.
  29 “My Father, who has given them to Me, is greater than all; and no one is able to snatch them out of My Father’s hand.
  30 “I and My Father are one.”

When you are going through testing, it helps to read those verses again and again. “No one is able to snatch them from My Father’s hand.”

No, God doesn’t test for his own knowledge. His knowledge does not change with circumstances, but he knows all things by one act of divine will. His knowledge, like his being, is unchangeable, simple, undivided, perfect.

So why does he test us? We can only know what he has revealed.

Sometimes he tests us because Satan is slandering us in heaven (Job 1). Satan accuses us of only serving God because God gives us stuff. When everything is taken away, the beauty, majesty and wisdom of God shine through us to the world and Satan’s head is crushed.

Sometimes he tests us for our knowledge – so that WE would know that our faith is genuine. When the sun of tribulation comes up, genuine faith continues to hold to Christ.

But the greatest reason is given in 1 Peter 1:7. Faith is compared to gold. But it is buried under a lot of ore and dross. God tries us, as a goldsmith tries his gold. In the furnace of affliction, the dross is burned away so that the genuine, beautiful, shining gold remains – it is when we look most like our glorious Savior.

If you want to look like Christ, it begins with the cross. This life is a life of testing, the fires of the furnace, the pain of illness, and that is when the dross is burned away and the gold shines.

“The flames shall not hurt thee, my only design

Thy dross to consume and thy gold to refine”

If you meet someone and the light of Christ shines from them; when they lift up with words; love without hypocrisy, are kind without an agenda;

If you meet someone who lives 1 Corinthians 13 without even thinking about it;

Someone whose life and words and works are works of purity, beauty, love acceptance, kindness;

Who loves without fear…

You know then that you are in the presence of someone who has suffered much in the furnace of affliction.

It is how the gold of faith is made to shine.

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Filed under Encephalitis journey, Faith, Pastoral ministry

Opening cards

Today is a good day!
Three weeks ago, we didn’t know if she would live or die. All we could do was cry out to God, and most of the time we didn’t even have the words for that.

Today, we’ve been talking all morning. She’s been wandering around her room waiting for her turn in the shower. She put together her bag with all of her clothes and toiletries. She washed her face, she brushed her teeth. We’ve had meaningful conversations.

Yesterday, she wrote her name.

This morning, she got a big envelope with a bunch of handwritten cards from Illinois. She read each one.

She said, “Dad, I don’t know who these people are”
I said, “I know, but they’ve been praying for you each day. In fact, there are hundreds of people all over the world that have been praying for you, sending cards and notes and messages…”

She said, “Why? I’m nothing…”

And we learned a little bit more about the communion of the saints and the fellowship of the Spirit.

It is a matter of perspective. I think that there are those who don’t understand the importance of a simple note, or a simple message – even just a note across the world on Facebook…a card in the mail…

You think to yourself, “What good is that?”
But when you can show one girl who is alive from the dead, who has suffered so many things, who has had so much pain – who knows what it is to struggle with knowing a name, or speaking her thoughts, that she IS NOT NOTHING – that is everything.
You might think you are just sending a note. But to her, you are saying that the body of Christ matters, and that she isn’t nothing.

So here is a thought. When someone on your friends list is suffering, say a prayer, send a note, write a message. They probably won’t be able to respond. They might not have the time or even know what to say…

But you are telling them, “You aren’t nobody. You aren’t nothing. You are a member of the body of Christ and even though we might not have ever met, when one member suffers, all suffer.”

There is one Lord, one Faith, one Baptism – and one church of God.
We are honored to call you our fellow members, joined together by what each joint supplies.

I told you she shines. She still shines. And everyone that knows her can’t help but shine as well.
It’s what the body of Christ does.

Update… I wrote this three days ago. She continues to improve. We were discharged this morning and are now home.

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Filed under Church, Encephalitis journey

How does one classify a day?

How does one classify a day?

Was this a good day?

Was this a rough day?

It was definitely a challenging day. We are exhausted; at the end of our ropes, it would seem. I staggered into the room this morning discouraged and so very, very tired.

And the morning was a challenge.

Loud family conferences in Spanish across the curtain. The psychiatrist did a psych eval on our roommate, knowing that we were in the same room. It was loud.

And then the jackhammers. Yes, Really. Some sort of construction is going on that involves jackhammers.

it doesn’t seem very conducive to healing and i said as much…

And then the afternoon seemed to calm. I know all of the prayers going up and the Lord blessed us with a few hours of peace.

Her afternoon sessions went well, but she was exhausted. Anxiety, neurological damage, nausea and jackhammers don’t make the greatest mix.

I was eating dinner with my wife and said, “A rough day.”

She said, “Yes. But a different rough than yesterday…”

I prayed with them, and said goodnight. I sleep in an RV down the street. I gathered my things and put on my back-pack.

“Papa?” She said.

“Yes, my sweet one…” I said.

She got tears in her eyes. “I love you so, so, so much,”

Then I got tears.

I stretched out my hands. “This much?”

She said, “Much, much more…”

All in all, I think that makes it a pretty good day.

When the rope is at the end, God delights in giving you more. When you have no more strength, Jesus gives what you need.

When your soul is dry and dusty as a desert, the Holy Spirit refreshes with cool, clean water.

It has something to do with eagles, but that will wait until next time.

I think that makes it a pretty good day.

Thanks for the prayers, friends.

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Filed under Encephalitis journey

The Faith once delivered…

Today was tough. She is becoming more and more awake and alert, which means she is more and more aware of what has happened. That is tough.

She started rehab evaluations today, so we saw the extent of the damage. We don’t know how much will be permanent. No one does. That is tough, seeing the damage, knowing the names of the damage.

And my thoughts fly everywhere. My emotions fly everywhere. I didn’t sleep. I feel weak and foolish. I feel angry and I don’t know who to be angry with. I don’t know if she will laugh like she used to or call me silly names like she used to or giggle hysterically at ridiculous puns like she used to.

I don’t know what will happen – and I cry out in words I can’t form. I scream in exhaustion and somewhere the words I learned as a child come into my mind and in the whirlwind I have a place to put my feet.

“I believe in God the Father Almighty,”

Will the doctors be skilled? Will they know the secrets of the mind and body that they need to know? Will her eyes work right? Will she remember how to read and what words and numbers and colors mean?

“Maker of heaven and earth.”

Why is she suffering? Does anyone care? Is there redemption for her? Is there a plan in all of this? What is the purpose? Who’s in charge that I can cry out to?

“And in Jesus Christ, his only begotten Son, our lord…”

I don’t know how this will work out. I don’t know what her future will hold. I don’t know when our breaking point will be. I don’t know, I don’t know, I don’t know…

Is anyone walking with her, with me, with us?

“Who was conceived by the Holy Spirit, born of the virgin Mary, suffered under Pontius Pilate…”

I wake at night with the words of Jacob in my head – “my days of the years of my life have been few and evil…” This cursed world seems brutal, short, ugly, harsh and I weary of life – and then, the words….the words…

“was crucified, dead and buried. He descended into hell.”

For us and for our salvation. His days were cut off brutally. He was abandoned by God so that she would never, ever be. He was forsaken so that she would never be alone in this cursed world, for he shepherds her and gathers her into his bosom….

And is there an end to this? Who will show us the way?

“The third day, he rose from the dead. He ascended into heaven, and sits at the right hand of God, the father almighty.

From thence, he shall come to judge the living and the dead.”

Life is often brutal, hard and short. Some suffer a little, some suffer tremendously. Some, like Lazarus, receive evil on this earth, while others receive good things.

But he is coming to judge the living and the dead. Every enemy will be destroyed. Every tongue stopped. Every virus destroyed, every twisted illness of Satan cast into the lake of fire.

And the last enemy to be destroyed is death.

And what until then? Will we see good in the land of the living? Will God’s presence go with us until the end?

“I believe in the Holy Spirit”

But I so often feel alone and frightened and like there is no one who understand, no one to lift this burden, no one to share this journey…

“The holy catholic church, the communion of saints”

And I see the light of God’s countenance shining through the saints around the world. I know your prayers and your gifts and your encouragements and I again lift my head up and know that God has not left us without a witness, but the unanimous voice of the true church in all the ages joins their tongue with ours crying out “Holy, Holy, Holy!”

“Yet I have reserved for myself 7,000 who have not bowed the knee to Baal.”

And these footsteps through this dark valley are not in vain, and even when I cry out in unbelief and fear, the shepherd does not let me go. He still cleanses; he still gathers. He still finds the lost lamb…

“The forgiveness of sins, the resurrection from the dead, and the life everlasting…”

Complete victory will be ours. We shall see him face to face. Even when we don’t feel like it. Even when he seems to have forgotten. Even when the blackness gets blacker. I remember the words.

And then she hugs me. And then she says, “Heyo, Papa.” And then she smiles.

And the light of Jesus shines again through the faith which was once delivered to the saints, and the smiles of his servants, and the voice of their witness crying out together in the furnace of affliction….”how long, Lord? How long?”

“Amen”

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Filed under Encephalitis journey

My only comfort

For three weeks now, I have been sitting beside my daughter’s bedside in the hospital. I have documented the journey on my facebook page. But, long story short, she was finally diagnosed with herpes Simplex 1 encephalitis. It is rare, brutal, ugly, with a high fatality rate. You can find all of the details on wikipedia so I won’t give them here.

But I would like to document here some of my thoughts, now that I am getting them together.

Yesterday was an awesome day. She’s eating with a full appetite. Pizza, fries, mashed potatoes, ice cream…

This morning, she said, “heyo dad!” when I walked in. It is really fabulous.

But that is the limit of her words. The virus has caused damage in the part of the brain that processes speech – but she is young and the brain is remarkable. We are hopeful.

When you look death right in the face, when your loved ones go through trials like this one, you learn to say things like this:

What is thy only comfort in life and in death? That I, with body and soul, both in life and in death, am not my own but belong to my faithful savior Jesus Christ, who with his precious blood has fully satisfied for all my sin and redeemed me from all the power of the devil, and so preserves me that without the will of my father in heaven not a hair can fall from my head….(Heidelberg Catechism, Q1)

We have trivialized Christianity into a political movement, a culture war, a movement of power rather than a cry of helplessness.

We have become a church of moral busybodies, so concerned about what others are doing and so afraid of everything…and we forget that there are real things to actually fear.

And when we forget the real curse that is on the world, we turn Christianity into a weird ethical system that is all about homeschooling, courtship, virginity, tattoos and earrings and power plays and making sure women “know their place” and we forget that it is about redemption.

Because bondage is real, death is real, the curse is real, my sins are real.

I don’t need to win a culture war. I need a savior.

I don’t need an ethical movement. I need a savior.

I don’t need moral busybodies. I need a savior.

When you forget that, then you are no longer a Christian in your thinking.

When you stare death in the face, that is when you remember the power of the resurrection. That is when you know what Paul meant when he said that he counts everything else as dung that he might know Christ and the power of his resurrection.

And thank you, Great Physician, that my little girl is eating and saying “Heyo, Dad!”

Thank you, Shepherd of Israel, that her face lights up when her friends visit.

And thank you, Father of Lights, for the light in her eyes.

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