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“Thank you so very much for coming all the way to Great Ormond Street to take Melody’s pictures. These could be the very first but also last professional photos I have of her.” -Karina
She was watching Disney princess shows when I first met her. I walked past the rows of beds filled with gravely ill children.
The show on her iPad were distracting her from what the nurses were up to. Melody was having her vitals taken from one side, blood taken from the other. Just 48 hours before, she’d had a portion of her colon surgically removed. Until she was 18 months old, melody could sing, walk, use her hands. But Rett syndrome took that, too, and now she can’t say where it hurts.
Seems that most of Melody’s life has been full of taking. This sweet little girl who can catch your eye and say so much yet can’t speak a word. This precious little life who, it would seem, hasn’t known anything but suffering. Melody is a hero and a fighter. She fights so very hard.
Melody doesn’t just have Rett syndrome. She also has Lupus and a plethora of things that go along with it. She’s living on the highest possible dose of steroids which puts her at a risk of a shattered spine. Her insides are being invaded by vasculitis which is creeping its way around her organs. She’s living on morphine and ketamine which doesn’t always manage to keep the pain at bay. At one time, she received her nutrition through a feeding tube straight into her heart, bypassing her entire digestive system.
The list could go on and on but I don’t just want to tell you about her illness. I want to tell you about Melody.
When Melody catches your eye, she doesn’t look away. Her gaze is so deep and long and her mouth moves as if she has something she desperately wants to say. Melody is very good with her hands and loves to smack her daddy and play on her iPad. She smiles the biggest when she sees herself on the screen. I wonder if she thinks she’s beautiful.
Melody’s mother is strong. She’s positive in the face of what’s coming. She always knows what point in the day is a blessing. She looks on the bright side. Her cup is full.
Melody’s father is playful. He adores his little girl – you can see it in his eyes. He can’t really stop looking at her, touching her, holding her.
Melody’s army is large. When she can no longer fight, we will fight for her.