I’ve been working on something for months. A book-shaped something. And I’ve said almost nothing about it.
But today, I get to tell you. Today, your life will never be the same.
Meet my friends Frazer and Dana…
…and their three daughters.
That’s Ann Carlyle up top–she’s six years old. On the bottom right is Milla, who just turned five. And on the left is Elle (the “pistol” as Dana calls her), who’s three.
In August 2013, Milla (pictured here with her mom) began to have seizures that eventually progressed to the multiple, uncontrolled type. In October 2014, Milla was diagnosed with Batten Disease. This is a rare and fatal genetic brain disease that currently has no cure. Over time, children with Batten lose their sight, suffer mental impairment, have worsening seizures, and see a decline in their motor skills. Children with Milla’s specific type of Batten are expected to live until they are 8-10 years old.
Because of the genetic nature of the disease, Frazer and Dana were instructed to have their other girls tested as well.
A few weeks after Milla’s diagnosis, the family learned that Elle, their youngest, also had Batten Disease. She just hadn’t shown any symptoms yet. Shortly thereafter, Elle had her first seizure.
If you’re anything like me right now, it’s taking you a minute to process what all this means. You’re realizing that this family has three daughters, but two of them will see heaven much sooner than we would have expected. You are trying to imagine how these parents feel. How the oldest daughter feels. How the grandparents feel.
And you can’t get there. You can’t understand it. (Well, unless you’ve lived through this before, or you are living it now, in which case I suppose you do understand.)
Shortly after I found out about all this, which was over a year ago, I found myself weeping over the situation and desperately trying to think of something to do. For a moment, I actually considered quitting my job and going into genetic research so that I could find a cure for these girls.
(Because I could do better than actual genetic scientists? I don’t know. Like I said: desperate.)
One day, I was sitting in church, half listening to my pastor and half thinking about Milla and Elle. I remember praying: God, just show me what I can do. Show me how to love them.
And the funny thing about God is that when you ask him to do something like that, well, he tends to do it.
I felt this sort of mental nudge. That’s the best way I can think to explain it. And then it was like God was saying to me, in that very quiet, still way he has: You’re a storyteller, my love. Tell their story.
A few months ago, our community lost a young girl to a brain tumor. It was a sudden thing, and heartbreaking, and although I didn’t attend her funeral because I didn’t actually know the family, someone passed along this (paraphrased) quote from the pastor who officiated her service:
Sometimes, we suffer so that others may have their prize early. <This child> has received her prize. She is living in paradise today, in full, perfect health, and she is not suffering. She is more alive than she has ever been, and we will see her again, and be with her forever.
So as I was getting nudged by the Holy Spirit, and as God was basically reminding me that he invented creativity and gave me my writing skills for a reason, I remembered that quote, and everything kind of came together in my head.
Milla and Elle will receive their prize early. Yes, we will suffer greatly in their absence. But this life is so short compared with eternity, and one day very soon, Frazer, Dana, and Ann Carlyle will be with Milla and Elle forever.
And so I thought: If I were to tell their story, how would I do it?
Well, I had no idea. So I prayed that God would tell it for me.
And y’all, he did it.
Naturally, because she is an artistic genius and a friend of Frazer and Dana’s, I asked my cousin Amy Grimes to be my illustrator.
We got together to discuss the storyline and how the pictures would be done. The essential story elements came out of Amy’s brain, and we spent some time developing the details, and then God started to weave this whole thing together.
Once upon a time, there was a dear, sweet family–a father, a mother, and three small daughters.
Their lives were normal and happy until one day, a storm settled over their house. Not over anyone else’s house–just theirs. The family’s neighbors did everything they could to help, but the storm raged on.
The family and their neighbors prayed to the Star King for help. What they wanted was for him to take away the storm, but he didn’t–not yet, anyway. Instead, he sent them gifts that would help them survive.
A water lily boat…
…a pair of giant Luna moths, who wrapped their wings around the family and kept them warm…
…and a great host of fireflies to light up the darkness.
The family was distressed. Yes, the Star King was sending them gifts that made things a little easier to bear, but what about the storm? And why them?
That’s how the story begins. The family has been blindsided by this storm, and no one around them seems to be suffering as they are. They are angry at times, doubting the Star King and wondering when all of this will end.
But then, there is the rest of the story. And this is where we see–and where I hope Frazer and Dana will see–that our true life is yet to come.
The Star King sends a messenger to the family. It’s an Angelfish–one of the King’s most esteemed assistants. And the Angelfish has a very special invitation to deliver…
The family has been invited to the Star Kingdom, to a special banquet in their honor. They are guests of the King himself! At last, they will escape the storm!
But the King has asked that the two youngest daughters travel first. They will ride in a boat made to sail the Celestial Sea, and the Angelfish will escort them personally. The rest of the family will follow soon, but for now, they must say a temporary farewell…
…and they all must trust that the Star King is good, though he does not always do things in the way they expect.
One of my favorite lines from the story comes at this point, when the family is saying goodbye.
“You will be together again sooner than you think,” said the Angelfish. “The Star King is not bound by time.”
Not bound by time. Or space, or disease, or sin or death or evil.
The Star King is not bound.
The girls set off on their voyage, and with the guidance of the Angelfish, they actually succeed in helping the Star King defeat darkness. You see, when you act in the name of the Star King, you are much stronger than you thought you were.
You are much braver.
And it turns out that the name of the King carries a lot of power, as do the gifts he sends. And it also turns out that you were never alone in that storm. Not once. Because once you use the Star King’s light, you can see that he has warriors fighting for you all the time, whether you know it or not.
Finally, it happens–the girls arrive at the Star Kingdom! And it is so beautiful, and so perfect, and there is a man standing on the dock that they swear they recognize somehow…
“Are you the Star King?” asked the youngest daughter, although she felt sure that he was.
The King smiled. “I have many names: Elohim, Jehovah, the Alpha and the Omega, the Prince of Peace, the Good Shepherd. And, yes, the Star King. Oh, my beloved children, I am so glad you’re here.”
And then, my favorite part…
“The banquet table is set for five guests,” he said, holding them close. “Now that you are all here, we shall feast.”
“Five?” said the middle daughter. “But there are only two of us.”
“Are there?” the King asked. “My daughters, look behind you.”
Ah, yes. The Star King is not bound by time, is he? So who do you think the girls saw when they looked behind them? Who do you think was going to complete that feast for five? I’ll bet you can guess.
He will wipe away every tear from their eyes, and death shall be no more,
neither shall there be mourning, nor crying, nor pain anymore,
for the former things have passed away.
And He who was seated on the throne said,
“Behold, I am making all things new.”
This story is full of confusion and grief and anger. It’s a children’s book, yes, but it doesn’t shy away from how the family feels in the midst of that storm.
But the ending is oh so happy.
It was hard to say which of them hugged the other first, or who kissed whose cheeks the most, but after a while, the Star King spoke again.
“I have prepared a house especially for you,” he said, nodding toward the mountains. “I think you will recognize it.”
A small, oddly familiar house sat on one of the mountains. It faced the Celestial Sea and overlooked the Radiant Palace.
“It’s our house from Village-Upon-Stone,” said the father.
“And yet it isn’t,” said the mother. “Not quite.”
The holes in the roof were gone. They hadn’t been patched; it was more like they had never existed at all. Even from the dock, the family could see a fire dancing merrily in the hearth.
But the best part was the space over the house, which was clear, sunny, and decidedly un-stormy.
“When you are ready, the celebration will begin,” said the King. “Welcome home.”
So that’s my secret project. It’s called Voyage to the Star Kingdom, and
I’m hoping to release it this January. It’s available on Amazon now! All profits will go directly to the family’s trust fund.
I truly hope that whoever you are, and wherever you are, and whatever storm you are enduring, that you feel the love and truth of the Star King as you read this story.
Behold, He is making all things new.
If you would like to keep up with Frazer and Dana’s story, you can find their blog here.
*EDITED JANUARY 2017* – For those who may not know, Milla (the “middle daughter” from the story) went to be with the Star King on November 26, 2016. Her little sister, Elle (the “youngest daughter”) began a clinical trial for an experimental drug for Batten Disease in the fall of 2016. Although the drug has shown potential to halt the disease’s progression, it is not a cure. Please continue to pray for this family, and pray for a cure to be found for Elle, and for other children with Batten.
*EDITED MAY 2019* – Elle joined her sister in the Star Kingdom on May 4, 2019. As Dana so elegantly, yet simply, says: Blessed be the name of the Lord.