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.
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.
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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