My great-grandmother passed away early yesterday morning after a short illness. She will be dearly missed.
Go in peace Nan.
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Grief
If I was any kind of popular blogger, I’d be doing something called vagueblogging today. It would be all woe is me, I’m all sad, things are hard, love me please. But I’m a crappy blogger and I hate vagueblogging and vaguebooking and any kind of vagueness that doesn’t come with an excuse of I was awake all night with my baby/kitten/goat/lover.
(That’s a goat, OR a lover, not a goat lover, because that’s illegal.)
It’s my grandmother’s birthday today and I am all woe is me, sadness and dark. She would have been 68, except fuck cancer. Fuck cancer, man. Cancer is a bastard thing, tearing families apart and leaving wounds in its wake.
Cancer.
Fuck cancer.
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It feels a bit like sacrilege for a chocolate lover like myself to suggest that I don’t enjoy the holiday that encourages gifting of chocolate, but I don’t. I don’t like Easter.
Once upon a time, Easter was right up there as my favourite holiday, tied with my birthday and Christmas. As an older child, my Grandmother used to rent a beach house with a few of her friends and we would spend the Easter holidays on the beach. I have fond memories of communal Easter breakfasts of hot cross buns and waking up to find the house scattered in chocolate.
Inevitably, some years, Easter would land on my Grandmother’s birthday and we would celebrate doubly, often with seafood, family, and the never-ending supply of Red Tulip eggs. There was laughter and love and a general joy in the celebration of all things chocolate.
Then came cancer, and the slow slide down into death. Watching someone die is both more and less dramatic than you think it’s going to be. There is a privilege in witnessing the passing of someone, along with the inevitable realisation that the moment will be forever imprinted upon your brain.
Now Easter just feels like the beginning of my season of Sad. The slow slide down, remembering how we passed these moments four years ago (celebration, love, laughter, the knowledge of death hanging over our heads) and how we passed the moments to come.
Sometimes it feels like my sadness is an honour. It is an honour to love someone so much that the hole they leave in your life will never be full again. But sometimes my sadness is a weight, a giant millstone around my neck, reminding me that we’re missing someone, that she is missing everything and that nothing will ever be the same again.
I don’t like Easter anymore, because all I can remember is the Easter before she died, and all I want is for the next three months to pass me by quickly, filled as they are with painful anniversaries.
Tomorrow, the Easter Bunny will bring my children eggs and chocolate and their excitement is not quite enough to soothe my shattered soul. I will sit with them and eat chocolate, and I will remember exactly what we’re missing this holiday.
Easter will never be the same again.
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We saw the neurologist for Evelyn last week. The official line is wait and see. We don’t know anything and we won’t know anything until she starts to display differing symptoms as she gets older. It’s hard, this wait and see. Wait and see if she improves, or goes downhill. Wait. See. Horrible. I have a phone appointment with our Paediatrician tomorrow to get the results from her last lot of blood tests and that’s it until after Christmas.
Encouraging things though are this:
This is Evelyn holding her head up briefly the other day. It didn’t last long and she hasn’t been able to repeat it (I say she’s storing up energy for next time) but she did it and I am so very proud of her.
Yesterday she giggled for the first time. I nearly cried.
Everything else continues along steadily. She’s still having episodes regularly, she still sleeps more than any baby ought to – especially a baby who is over four months old – and her eyes still aren’t great.
But she is deliciously kissable and every little thing she manages is a huge achievement. Go Evelyn.
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Isaac saw the doctors too regarding his stomach issues and we’re looking into starting the FODMAP diet with him. I expect the adjustment period to be a bit hellish, but we hope it’s going to help. Just waiting on seeing the dietician now.
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I held Evelyn’s feet in my hands and kissed them until she smiled at me. I looked at them; at the silvery scars on her heels and the remnants of failed cannulas and I tucked them back under her blanket for her; safe from air and touching and harsh needles.
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I’ve been reading a lot. This year has been rough and I’m ready for it to be over. I keep dreaming that my grandmother is alive and that everything is okay with Evelyn and then I wake up and nothing is right. I’m not as mentally healthy as I could be, but I suspect a lot of that will be fixed by the holidays. Until then, I’m reading and I’m writing and I’m kissing my children.
How are you?
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I had a bad day today.
It’s this limbo of not knowing what is going on with Evelyn. Of watching the days slide past in a slow trickle, like sand through an hour glass, but not seeing any real changes in her behaviour. It’s not knowing if what I’m seeing at any given time is a “non epileptic paroxysmal episode” or a new type of seizure. It’s not knowing if she will be normal, or severely challenged, or somewhere in the middle.
It’s the waiting, most of all.
I sat on the floor today, holding my daughter and watching her try and smile at my voice, while her eyes darted around, not looking, not seeing. I sat there, and her tongue twisted strangely, and her arms jerked and her hands felt spastic (in the true sense of the word) and I wanted to cry, because we just don’t know.
If she’d had an MRI and an MRI showed serious brain damage, then every thing that she did would be a celebration. From sneezing, to waking up of a morning. Instead, her MRI is clean and I’m left not knowing anything. Constantly wondering if this is it, is this what she will be like forever? Or is this just the very beginning and in five years, I’ll be remembering the days like today with a bitter taste of fear and crisis averted hanging around in the back of my throat.
She should be normal.
She is not.
Evelyn is eighteen weeks old today and I can’t even think about what my other two children were doing at eighteen weeks old.
And yet, it runs through my head, a constant litany that I cannot turn off; that I want to turn off.
[Amy noticed her hands at eight weeks. Could hold a rattle consistently at nine weeks. Rolled at eleven weeks. Ate solid food at 17 weeks. Could sit propped up at 18 weeks. Was crawling at 22 weeks.
Isaac noticed his hands at 7 weeks. Batted at his toys at 9 weeks. Had good arm control by 10 weeks. Rolled at 12 weeks. Rolled around the house to play at 16 weeks. Crawled at 24 weeks.]
This constant litany, over and over again. I could play with them. They laughed. Enjoyed games. Enjoyed toys. Enjoyed us.
It’s not the case, here and now. I hold Evelyn and cover her face with kisses. She licks me and smiles, occasionally cooing at me, but more often gagging on her own tongue and saliva. I stroke her hair and hold her tight because I don’t know how this story will end and every single second breaks my heart.
I want her to be okay. I want for her to be okay so badly that every atom of my body aches for it.
But I am only her mother and I have no control over this.
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