At school, when report cards arrived Mum always insisted she didn't care about the marks, what mattered were the Teacher's comments.
These past couple of years, I've found myself uttering the same words to the Big Sister. So it must be true.
Yesterday I was on the receiving end of my first report card for a good while; when Bearhands, the girls and I fronted up for my first appointment with my neurologist since treatment.
I was a bit surprised when he asked how long ago I'd finished. Seven weeks ago, I said.
We discussed my energy levels and persistent headaches (less frequent lately, but still my major hangover from the whole deal).
Then he declared me his star patient. It seems I'm recovering as well as any patient he's seen. We don't have any measurable results yet, we're just going from my general well-being and his observations but it's encouraging. Maybe I'm manifesting my miracle after all!
Life post-treatment hasn't been all gold stars and glowing reviews though.
I struggled during the school holidays. The Big Sister had three weeks off and we couldn't get out much because I was still in quarantine. The weather was lousy for the first few weeks, the kids were stuck inside and they bickered. We'd all come down with a dose of cabin fever when Bearhands suggested we head to Fraser Island for the final week of the holidays.
The packing wore me out and I was exhausted by the time I climbed in the passenger seat, but it was worth it. We chanced a week of beautiful weather. The sun and the fresh air were just what the doctor ordered. I plonked my bottom in a camp chair while the kids made sandcastles while Bearhands fished. We swam and I cooked dinner on the beach one night and it was wonderful.
On our last day the Big Sister had a checklist of things she wanted to do before we left. She wanted to climb Waddy Point and toboggan down the sand dunes. Waddy Point is a headland near Orchid Beach; we make a point of climbing each visit. I'd promised her we would, so after lunch we found ourselves carefully navigating the thin track that leads up the side of the Point.
When we got to the top, I had a little moment. I realised that climbing Waddy is one of the reasons I had no option but to choose Lemtrada. I need to be able to keep climbing that point with my girls until we're all old. I started to cry. I haven't cried during this whole process. Not even when I had those frightening few hours on day four or on day five when I was covered head to toe in a rash that was maddeningly itchy. It wasn't a big cry, just a few tears of relief and gratefulness.
In the weeks preceding I'd been a bit grumpy about the process. Being quarantined was inconvenient, my infusion sites hurt and I kept knocking them accidentally. I was tired of being tired. But there at the top of Waddy, I had a little epiphany; I've survived the first round and I'm on the other side. All the inconveniences are for a purpose - so that I can lead the long active life we've planned. I stood there, soaked up the view, felt the sun on my face and gave myself a little mental high-five.
Then the Big Sister shouted 'Look Mum a whale!' and I turned to see it launch itself out of the water, breaching just for us, a message from the universe in humpback form!
Later, inspired by my little epiphany, I dragged my tired body up the sand dune to have a toboggan race with the girls. There may come a time when I desperately want to race the kids but can't. My fresh realisation meant I couldn't squander the opportunity.
Just in case you're worried that the treatment has made me crunchy, here's a dose of reality.
On the way back down that steep slippery track on Waddy Point I fell on my arse. Don't worry friends, I might be seeing cetacean messengers, but the universe is also keeping me very very grounded.
has the universe ever sent you a message?
A beautiful post Amanda. I have only been to Fraser Island (I live in south-west WA) but it was so lovely & a great place to explore. Congratulations on your first round of treatment. I think you will find your way with it as time goes on. Stay awesome x
Emily @ Have A Laugh On Me says
What a lovely post, and I hear you about being grounded by the universe. xxx