You have the power to banish all variety of "owies" with nothing more than a kiss and a band-aid. Superhuman strength to toss squealing kids into a pile of pillows. Inhuman wisdom in answering life's important questions. Supernatural engineering skills to fix just about any broken toy with nothing more than a scrap of duct tape, a couple of toothpicks and a tube of super glue. It's great being a superhero! Until you hit that shard of Kryptonite that rips through even your most impressive powers and makes you realize that you're just... a Dad. Who can't fix everything after all.
My Kryptonite lurks inside my five year old. An insidious, unrelenting villain has a hold deep inside her. Just when you think he's been banished back to his evil lair, he rears his ugly head again - like he did last week. Danna's battle isn't with something you can see, touch, or banish with a quick burst of superstrength - but with a disease that's got a grip on her kidneys, and just won't... let... go. And last week, when Danna's cute five-year old cheeks started getting puffy again, despite her low sodium diet, despite her regular course of steroids... we knew it was time to head back to the drawing board.
And this Super Dad feels small. Powerless. And - can a superhero even admit this? Scared.
So - allow this scared not-so-super hero introduce you to the real hero in the Rubesh family. She stands about 3 feet 9 inches tall, and has beautiful brown hair, freckles and grey-green eyes. She loves ice cream (chocolate please), Hannah Montana and Princesses. She stages dance shows in the bay window and enjoys dressing up her dolls, toddler brother and cat. She's an excited Kindergartener, is learning to read, and "writes" long letters to imaginary friends.
She takes her own treats to birthday parties, where she can't eat the snacks the other kids can. She has her own special "salt", popcorn, chips and crackers... looks a little longingly at the "good stuff", but doesn't complain. She's stares down any incoming needles in disdain - and barely whimpers when she has to give blood... yet again. She's not quite sure why the pants that fit her fine last week are uncomfortably tight this week - but she rolls with the punches and finds another pair. She's a great pill swallower, which is good. While many kids her age might have multivitamin with breakfast, she swallows potent cocktail of 8 pills each day. One will suppress her immune system. Another weakens her bones. Together, they should help her kidneys keep on doing their thing.
She makes me laugh. She breaks my heart. But most of all, she makes me so... incredibly... proud... all at the same time.
Danna's my little girl - and my true Superhero. And as she battles this villain - and I stand by helpless - all I can do is love her. And use whatever powers I still have at my disposal to keep her smiling through her fight.
Wow Rubesh family! I'm so sorry to hear that Danna's having yet another flare up. I've been keeping Matt in the loop here, and he keeps telling me he remembers the same thing happening to him. Just when he thought he was in the clear, "boom", it hits him like a ton of bricks.
On the bright side, 10+ years on prednisone, methotrexate, and several experimental drugs - he's had no long-term side effects.
Thinking of you!! Jill and the family in India
Kevin, that is a beautiful tribute to Danna! It seriously made me cry. Thank you for this.
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