This week I found a new hero. The strongest, bravest person I’ve met in my life. She is six years old and 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. Pain wracks her body every hour and folds her in half, leaving 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 right through me with her beautiful, big, blue eyes.
Melody is enchanting, when she is not in pain she dances to her favourite song, and sings (shouts), she plays games with me, choosing her favourite colour car (the red one) and occasionally gives me a slap because I’m clearly not paying enough attention.
She is tough. When the pain sets in she grits her teeth and gasps for breath, she fights the 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 they’re bringing pain, and like a torture victim she zones out into her safe place. She knows the difference between the medication trays and routine checks, that’s because she misses nothing and she’s smart, so smart. She indicates it by zoning or by smiling at the nurses.
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 brings 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 had to make that no parent should ever have to make. She has steeled herself with an iron will and a hawk-like vigilance that is constantly monitoring everything. In the middle of our conversation she corrects 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 cannot be answered as people and as parents. They are also the kind of decisions that, as humans, we should never judge. We are never in any position to judge with any certainty. Karina has been judged, and she’s had to live with the shadow of that judgement.
Fighting Rett Syndrome is not just about chasing a cure. The easiest thing we can do as a community is support each other. To make sure that people are not alone, that they have support and that they know there are people there who care. How we choose to do that is down to us as individuals. The way you treat someone is a reflection on you.
I choose to do it by being there, if not in person, in any other way I can. I’ve surrounded myself by people who want to do the same. I love them – they’re amazing. All the people who’ve supported her, changed their avatars, sent her messages and driven to the hospital to see her. You’re amazing, you show people the genuine power of community.
This is what Cure Rett is about, it’s not group of people doing stuff on the internet, it’s an army of people telling the world and each other that they care.
You are her army, every one of you.