A few weeks ago Aurelia was going out with Ben. She's been going out solo with him since she could first go without milk for a few seconds. He used to rush back and pass me a boobie obsessed waif, but the trips can be longer these days. It used to be her favourite thing to go with just him, but now she says,
"Mummy coming too?"
She asked it brightly, with hope that I would be joining them.
"Mummy's staying home this time. Just Aurelia and Papa," I said.
Resignedly she said,
"Mummy bit tired. Mummy need a little break."
I felt sober as I agreed with her. How many times has she heard those words to be uttering them at just turned two? It must be hundreds of times. I was stunned by her comprehension, but hearing her disappointment in my body grazed me. My body has daily let me down and down, and it is not comfortable to know that it's going to disappoint her too. She was born oblivious, neither aware nor affected by my state, but each year she will discover a tiny bit more about how her mummy is tired, hurting, can't go, can't stay up late, can't entertain, can't work part time, can't exist as she expected she would. Aurelia encounters illness young, and she will watch it from the closest seats in the house. One day, it's likely she will glimpse me lying in bed unable to lift a fork and bowl because I went to one of her evening concerts, and will that hurt her more or less than me not attending?
I'm like a rose which withers soon after it has opened. A saggy petal after my shower, and wilted by noon. I don't imagine it would very pleasant having a wilted mother. My mother is and was a beautiful and robust evergreen. I will have to figure out a different way.
"Mummy bit tired," is certainly the sanitized version. I'm glad that she didn't say, "Mummy so wildly zausted she calling Papa frantically to come home from work, cause Mummy can't form nother word in eternal strength-sucking story she reading me, and can't cope with nother of my tantrums where I lie on the floor and scream, they must really push Mummy over the edge cause she buyed ear plugs so that she is less zausted by my commotions. Mummy and Papa lucky to get me in bed before 9 o'clock anymore cause Mummy holding onto to my long day sleeps like a woman obsessed. She must be very tired lady."
I mean, we haven't told her all the gory details.
I was watching the heart wrenching documentary about CFS, called Unrest. I've waited and donated for it's release since 2012. Interviewed in the piece is a mother who said she missed the events that no parent misses: sports events, dance concerts, school ceremonies, and parties. The big ones, where every mum and dad shows up with all the other exuberantly proud parents. But she said something important: CFS mums may miss the documented events (or suffer disproportionately afterwards), but they are more present than most parents. They can't fly out the door leaving a whiff of perfume as they drive off to work, and socialise, and volunteer. They are allergic to perfume. Current thought says that children need to see their mothers taking on the world, but I'm not convinced.
Unwell parents will be there when their child leaves for school, and when they get home, and years after the toddler doesn't need them every minute. They will be there for listening and talking and reading and being, the being that occurs behind closed doors or in peaceful nature. They are not too busy.
The pace of life in our family isn't exciting. I want to take her to Christmas Carols this year because the last two years I was not well enough from her waking in the night. It stung, the FOMO that arose from hearing of people blithely attending my favourite event and probably not being incapacitated afterwards. I also wanted to get through Christmas Day without a bad hangover, and that didn't eventuate either, despite avoiding a month of preliminary fun. My body objects to the flutterings of December that I have loved so much since childhood, and the missing out pains haven't completely resolved. But I spent some of the happiest mornings of my life that December, dancing her around the lounge to Rend Collective carols every morning, smelling the pine needles and her pink onesie, and showing her Christmas lights and mice on the tree. In our home tucked away from eyes and hype, we lived quite wonderfully that month.
It is to my detriment that I forget that the unseen and undocumented lounge room living is as important and impacting as all the rest. Not as glossy, no, but full of heart. My body is a bit tired and I need a little break, but my heart has as much vigour as it did before I wilted. Hearts can be green when bodies are withered, and love is not bound by the vessel it dwells within. Love can be exhaled in a quiet moment from a weak person on a couch.
