Causes and effects: a letter to my child’s rare disease

Dear Harlequin Ichthyosis,

Yes, I’m talking to you today. You, whose name I couldn’t pronounce for days after hearing it for the first time. You, who appeared unexpectedly on a December afternoon 3 years ago, causing panic and fear on what should have been a joyous day.

I know you now. I wish I’d never met you, because that would make my daughter’s life easier, and I would do anything as a mother to make her life easier and more comfortable and happier. But I know you very well now, and I understand you more every day.

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Here’s the thing, HI (I think we’re close enough to be on abbreviation terms):

Your physical causes are certain, written into medical textbooks and clinical research.

You cause the production of excess skin. You cause calories to be consumed at a rapid pace. You cause the inability to sweat and trouble regulating body temperature. You cause skin to allow germs to enter and overtake, causing infection. And in many cases, you cause death. You nearly caused death for us.

As a rare and severe disorder, your emotional causes are expected as well.

You cause grief, you cause fear, you cause frustration, you cause loneliness.

But your effect… now that, my friend and enemy, is on our terms.

Where you cause grief, we can choose to extract joy.

Where you cause fear, we can choose to look ahead with hope.

Where you cause disfigurement, we can choose to see beauty.

Your ultimate effects on our lives are decided by us. Your effects worthy of our energy and our focus are the stories of unending love we are embracing, the stories of dazzling beauty we are telling.cIMG_1247

HI, you’ve caused some changes in our lives – some hugely significant and others in a million little ways.

And your effects will shape and mold and define us, for years and years to come…but we will determine those effects. We’ll strive to leave the negative ones behind and focus on the positive. We’ll acknowledge what you’ve caused in our family, but we’re choosing to tell our own story about how you’ve affected us…a purposeful story of fierce love and intense beauty.

Tomorrow is Rare Disease Day. Learn more about Brenna’s skin condition here.

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VeggieTales Noah’s Ark giveaway!

We’ve been a huge fan of the VeggieTales series since Connor was a baby – we just love the messages of the stories, and the cartoons are really cute and engaging.

The newest VeggieTales movie is being released on March 3, and it’s a story we all know and love – Noah’s Ark!

This arrived in our mail on Monday, and both kids immediately clamored to watch it while I was getting dinner ready. I love the way VeggieTales brings this story to life in a way that is appropriate and light-hearted for children (because let’s be honest, the whole part in the Bible about the destruction of the world can be a little overwhelming for kids.)

But in the VeggieTales movie, they focused on a key message within the story: trusting God’s plan. It features Noah’s son Shem and how he first questions, then embraces, his father’s direction from God.
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The movie stars Wayne Brady as Shem, and he performs 7 original songs in the show.

In the movie, Shem and his wife arrive home from their honeymoon to find the ark being built, and Shem doesn’t understand Noah’s unshakable faith in God, particularly when animals start arriving two-by-two – while the rain is nowhere to be seen. When the deluge does come, Shem begins to understand Noah’s determination to preserve humanity’s future … and the importance of trusting in God.

Noah's Ark 1Since my own kids are enjoying our new VeggieTales movie so much, I am excited that I get to give away another copy today! This would make a great addition to someone’s Easter basket :)

Simply use the Rafflcopter tool below to enter to win… I’ll choose a winner Friday night (2/27)!

a Rafflecopter giveaway

Dashing through the snow

Mother Nature tossed nearly a foot of snow at us in Illinois this past weekend – a bright white thickness that just begged for sledding and boot prints and snowmen.

The stars aligned just so to give us a big snowfall without temperatures that take your breath away… so for the first time, we bundled up this little girl for her first snow experience.

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She was thrilled to be outside with the rest of the neighborhood, but was more observational than anything else…

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Daddy was a good sport and pulled the sled around our street over and over and over. Brenna sat tentatively in Connor’s lap, and with every slight turn or shift, she’d nervously laugh and call out “this ride is WILD!”

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She’s starting to realize that she has to miss out on some things, so I was overjoyed to be able to say yes this weekend…to give her this snow experience all bundled up in the cold and fluff, instead of watching from the window.

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And a beautifully white Saturday with nothing on the schedule was made even better with a roaring late afternoon fire and a rousing game of Memory! :)(null)

Did you get out into the snow this weekend with your family?

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