This week I found a new hero, the strongest, bravest person I’ve met in my life. She is six years old, and as light as a feather, at six years old her muscle development is like corded iron, even though she is thin and slight, she is strong. That’s because of the pain wracks her body every hour folds her in half and leaves her writhing in agony, gasping for breath.
Even through the pain she is bright as a button, she smiles at her mum, occasionally shouting “Mummy” when she wants us to change the game on the iPad. She kisses the little mermaid, or the crazy cars, she gives me a coy smile and tears a hole in me with her beautiful, big, blue eyes.
Melody is enchanting, when she is not in pain she dances to her favoutrite song, and sings(Shouts), she plays games with me, choosing her favourite colour car(The red one) and occassionally giving me a slap because I’m clearly not paying enough attention.
She is so tough, when the pain sets in she grits her teeth and gasps for breath, she fights it’s onslaught until she curls into a little ball, unable to keep the pain at bay. When the nurses come into the room with the meds, she know’s it’s bringing pain, and like a torture victim she zones out. She knows the difference between the medication trays and routine checks. That’s because she misses nothing and she’s smart, so smart.
Melody is a fighter, a fighter like I have never seen before. She comes back from every bout of pain, sometimes she falls asleep from exhaustion, but most times she bounces back to play. The pain won’t have subsided completely but she’ll sit up and grit her teeth, nod her head and tackle the rest of it.
That fight bring’s me to Melody’s mom Karina, who is a kind, gentle person, she spends every minute possible fighting for Melody too. Karina has a different kind of strength, the strength of commitment. Don’t make the mistake of thinking Rett Syndrome only affects the girl(or rarely the boy), Rett Syndrome affects everyone exposed to it. There are decisions Karina has to make and that she has made, that no parent should ever have to make. She has steeled herself with an iron will and a hawk like vigilance that is constantly keeping an eye on what’s happening. In the middle of our conversation, she correct a nurse, such a minute detail I have no idea how she caught it.
Karina assures me it wasn’t always like this, she’s had to learn the craziest stuff. She’s had to endure some horrible things, and not just from Rett Syndrome. It’s made her strong, stronger than she thinks. She’s also often had to make these decisions alone, and that is tough.
These are the kind of decisions that plague you every minute of every day, they are the kind of thing that we just cannot answer, as humans and as parents. They are also the kind of decisions, that as humans we should never judge. Karina has been judged, and she’s had to live with the shadow of that judgement.
Karina and her family have not deserved the treatment that they’ve got, not from people who should have been there to help and support.