Category Archives: Encephalitis journey

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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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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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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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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