HAWMC Day 6: Letters

Dear Cystinosis, When I hear people say they hate you, I get defensive on your behalf. Something inside me cringes.

I want to say, "Don't hate the hungry lion for being hungry. Look at his beautiful mane."

But I don't say it. I can't say it.

I have said it using other words before: just as I cannot hate my brown-sometimes-green eyes or my neither-curly-nor-straight hair, I cannot invite the sort of self-loathing that comes with hating a part of who I am. A part of who God created me to be. A part that has blessed me more than it has cursed me.

Sometimes I imagine being born without you. Would I push myself to climb mountains?

Maybe you would, a voice whispers. Because that is who you are. But maybe the mountains would look different. And maybe without the hungry lion chasing you, you wouldn't push as hard.

If brown eyes caused someone else pain, or wasted away their body, could I hate the trait without hating myself?

I'm coming to terms with the fact that maybe I could.

But I don't hate you in me. I hate what you do to others. But I can't imagine myself ever hating what you've done - and undoubtedly will do - to me.

Like a mother hen protecting her chicks, I hold you fiercely within my feathers and wonder why others just don't understand.

But maybe I am the one who doesn't understand. How can I possibly tell someone who has lost a child, a sister, a brother, a spouse - how can I possibly tell that person to love you?

I am the one who doesn't understand.

Yet when I go (whether that be many years from now of old age or tomorrow in a car accident), I want my husband to share not what you took from me, but what you gave to me. When weighed against one another, the latter falls heavy on the scales and the former remains lighter than a single grain of sand.

You have made me the hungry lion. Hungry for life, hungry for feelings of empathy that come too rarely, hungry for changing how we all tend to view the world around us. Hungry to push harder with no one but myself chasing me.

Because I know that the joy in hearing "Your legs must be very strong!" from someone else observing my movements isn't that it's true (though I hope-wish-pray-long for it to be true), but that no one would have said that to me a year ago.

For all that you're doing in my life and all that you've done,

Thank you.

Jessica