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Dear My Daughter's Rare Skin Condition, This Is What You Don't Have Control Over

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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 three 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, more comfortable and happier. But I know you well now, and I understand you more every day.

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

Your physical symptoms are certain. They’ve been 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, creating infection. And in many cases, you cause death.

You nearly caused death for us.

As a rare and severe disorder, your emotional tolls are expected. 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.

We decide your ultimate effect on our lives. The things worthy of our energy and our focus are the stories of unending love we’re embracing and the stories of dazzling beauty we’re telling.

HI, you’ve caused changes in our lives — some hugely significant and others in a million little ways. And your effect will shape and mold and define us for years and years to come. But we’ll 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… a purposeful story of fierce love and intense beauty.

Follow this journey on Blessed By Brenna.

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Originally published: March 5, 2015
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