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Gray

Gray. It’s my favorite color, but not when it comes to knowing. When it comes to knowing, I want answers. I want to know when. I want black or white.

But dying, like living, is full of gray.

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As I type, just got an email notification from the middle school Jayden would have been attending if he didn’t have Sanfilippo. It was a reminder about the school dance tonight.

As I type, I listen to the rhythm of his breath. In the background, Mickey Mouse Clubhouse plays.

 

I can’t believe it’s snowing.

I can’t believe it’s November.

I can’t believe my son is dying.

Continue reading “Gray”

What Feels Right

I walked Ellie to the bus stop this morning.

It was 47 degrees. Cloudy. With just enough warm left in the air to make the crisp, cold air inviting. I have really enjoyed the fresh air everyday the walk brings. I find myself craving it. It’s good for my soul.

I held her tiny hand in mine. She told me she’s the “chair helper” at school. If a kid forgets to push in their chair, she pushes it in for them. She’s really enjoying kindergarten. The sounds of spelling, singing about her colors, counting, reading, and playing school has become our soundtrack to this season.

It has felt right.

Continue reading “What Feels Right”

I see you, mama: A word for mothers navigating a different dream

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Sunday, April 23, 2017, I had the honor of keynoting the annual Charles Tillman Foundation’s TendHER Heart Luncheon. This spring 250 mothers of critically and chronically ill children attended a special brunch, which honored them for the sacrifices they make in caring for their ill child. The brunch provided these women with the opportunity to “take a minute” for themselves and enjoy each other’s company and support. 

Here are my words from the luncheon.

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Continue reading “I see you, mama: A word for mothers navigating a different dream”

Me and She in Haiti

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There She is.

Me and She. I didn’t know until I left Haiti the first time, She was the reason I went. And She, is one reason I am going back.

Haiti is no joke. It was hard. And bringing an extremely large group of high schoolers there for a mission trip was a challenge. It was hard to lead students while I was experiencing and processing everything they were for the first time. The blind leading the blind, so to speak. Although I think I was learning more from them, then they learned from me.

Continue reading “Me and She in Haiti”

Field Notes from Pain: Part Two

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This is part two in a two-part series entitled: Field Notes from Pain

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“Sometimes God allows what he hates to accomplish what he loves.” 
― Max Lucado-

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There was this youth group kid that whittled. You know, the art of taking a piece of wood and turning it into a troll or something. He did that. And he was good. I was fascinated- first, that a high school boy liked to whittle. Random. Then, I was fascinated by his work. He had an entire village of what I imagined to be Wemmicks.  Continue reading “Field Notes from Pain: Part Two”

Field Notes from Pain: Part One

This is part one in a two-part series entitled: Field Notes from Pain

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“Darling, you feel heavy because you are too full of truth.
Open your mouth more.
Let the truth exist somewhere other than inside your body.”

-Della Hicks-Wilson-

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I feel “ick” today.
Heavy.

Maybe a bit sad, or tired, I am not sure which. Or hungry. Those three tend to blend together.

Jayden and Brooklyn are fine, not sleeping, but fine. As fine as two dying kids can be. In fact, most days, I fear they are doing a better job of living than me. Justin says I am too hard on myself. Perhaps. Ellie is great, too. Still asking a bunch of questions like most four-year olds do, and playing baby. Specifically, “a baby named Ellie who talks with her eyes. And crawls. And walks. And laughs. And giggles. And sleeps.”

Everyday. Continue reading “Field Notes from Pain: Part One”

Character Over Coloring: A Lesson On What Really Matters

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Can I tell you guys a quick story?

A few days ago, I walked into Ellie’s preschool to pick her up and saw these scarecrows on the wall. Each child was given a plate and told to make a face on it. They were great. The kids had drawn two eyes, clean lined mouths, and button noses. Pretty impressive for four, until I noticed Ellie’s. Her plate was covered in random purple, gray and pink scribbles.

Continue reading “Character Over Coloring: A Lesson On What Really Matters”

A look back: Where I am, 2 years in

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This post came through my news feed and it is just as true today as it was five years ago when I wrote it. As we adjust to new normals, God’s Word remains true and steady, even if my feelings waiver. 

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November 2011:
October came and went this year with no mention of it being two years since our diagnosis. And, that is just fine with us. As we settle in to this lifestyle, we have learned to really embrace Sanfilippo as a welcomed friend more than an intruder. Let me be very clear. It pains me to see Jayden regressing. It hurts to see Brooklyn still progressing, knowing those skills will soon be a memory. That is my human desire talking. But, I can spend my days counting down till we lose them, or just embrace them while they are here.

And, although we may never have answers this side of heaven as to why God made them this way, we have gotten to a point where we actually see the many blessings hidden in Sanfilippo. Our children’s salvation is secure. They will never be a part of this awful world. They will never hurt someone’s feelings. They will never judge anyone. They never have to work and have a crummy boss. They never will have their heart-broken. They will never complain that they don’t have this or that. They will never think life is unfair. They will never talk back, get in a fight, or cause a car accident. I will never have to worry what they are doing out past curfew, whether or not they are hurting themselves, partying too much, or being fake at school. They will live their life as a blessing-always living in the moment. They will fade away slowly from this earth, only to lean more into their real home-heaven.
Continue reading “A look back: Where I am, 2 years in”

How One Woman is Embracing Plan B After Her Son’s Tragic Accident: A Guest Feature by Kristen Clack

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Hold onto your seats, friends, and grab the tissue. I can’t wait for you to meet my friend Kristen. Her story is remarkable. But what is even more remarkable is her faith in the midst of her circumstances. She has such a contagious joy that can only be understood in the context of her Savior, Jesus.

What if your worst nightmare came true? Could you praise God in the midst? Kristen’s faith is a challenge to us all. Thank you so much, Kristen for sharing your story of going from Type A to Plan B with such grace and joy.

 

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Continue reading “How One Woman is Embracing Plan B After Her Son’s Tragic Accident: A Guest Feature by Kristen Clack”

It’s Never Too Late to Find Freedom From a Shameful Past: A Guest Feature By Dawn Stewart

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So…. I can’t wait to introduce you to my new friend, Dawn! You know when your heart is whispering something, and then you meet someone else who says their heart is whispering the SAME thing? That’s what happened! Dawn and I connected through a mutual friend and when she began to share about the beauty in brokenness, trying to keep up, and unlocking the truth– I knew our souls were connecting, and we all would learn so much from the story God is writing in Dawn. So lucky for us, when I asked her to share, she said YES!

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Continue reading “It’s Never Too Late to Find Freedom From a Shameful Past: A Guest Feature By Dawn Stewart”