Grief

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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My grandmother is dead.

Pffft, I hear you say. You know this already, and sing a different tune already. She’s been dead for over three years now in fact, surely I ought to have gotten over it?

But no. My grandmother is dead and I want to rail at the Universe, because she should be here. She should be here, because selfishly, I need her help with my smallest daughter and instead, she is dead. Every time I update my parents and Nathan’s parents after an appointment for Evelyn, I miss her. Every time I have to venture back into the hospital, I think of her. Every time the days seem long and shitty, I want to be able to phone her and shout about the fact that my baby is still sleeping, still seizing and nothing is getting better.

Instead, she is dead and I am trying very hard not to kick the universe for this fact.

About a month after she died, I lay in bed having what felt like a panic attack. I was done. I was so ready to be done with grief, to be done with the crapshoot of missing someone that badly, I was just done. I wanted my do-over. Door #2 please, I’ll take that one instead. No, cancer, you can get fucked, we’re picking a different path this time. Someone go back and pick me a new ending.

The thought of having to miss her every single day for forever was just too much – the finality of it all was just shit, as the future stretched out in front of me – a future that was never going to have her in it, no matter what I went on and did with my life.

It feels a bit like that with Evie now. I am ready to be done with the seizures now please. Ready to have my daughter magically fixed, by karma or whatever. Ready to wake up from this nightmare and have Evie’s eyes work perfectly and to be living the life I was obviously meant to have, before someone got confused and pressed the wrong button.

The future of this is all stretched out in front of me and I don’t want to think about having to cope for another day with a baby who cannot see, and who has seizures and who is confusing the doctors at an alarming rate.

But this isn’t a nightmare. This is my reality. The reality is that the baby seizes a lot. That yesterday and today she wasn’t even able to see high contrast toys, let alone our faces. That sitting on the couch with her, her eyes rolled around and flicked everywhere as she listened to my voice and she smiled when I kissed her cheeks – but didn’t, couldn’t, see me. That she sleeps all the time, spending only a tiny amount of time awake before needing to be put back to sleep.

It feels like someone ought to come out shouting that I’ve been on candid camera, and that this is all a giant cosmic joke.

Instead, the baby is asleep again (still) and my grandmother continues to be dead. Yay, reality.

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Internet, I am feeling sooky. It’s probably a side effect of scoring a few days at home without blood tests or waiting for phone calls, but I’m feeling sooky and my hormones are obviously having a giant party without me.

It was triggered by a package in the mail from Marita at Stuff with Thing, that not only contained fleecy warm suits in 4×0 size for Evelyn, but the best gift for my older children as well. As I speak Amy is happily colouring in and Isaac is bothering her. This is on top of a package from Kelli and the breastpump and some gorgeous clothes from Kate.

I am so grateful for all of you that read here, the people I am proud to call friends, as well as the regular readers, commenters and lurkers. I have devoured every single comment in the last 12 days, with every well wish leaving a warm spot. It’s been fantastic to know that I have this level of support and hand holding when I need it.

The juxtaposition is, of course, my side of the family IRL, in which Evelyn’s birth seems to have flown pretty much under the radar. Not that I expected balloons and flowers, but a phone call would have been nice. An email even. A “like” on facebook. Any of these things would have worked, especially as I had to say no visitors in the hospital because of the whole NICU admission.

Of course, I don’t expect that the birth of my baby is something universally celebrated and making news with all of my family members everywhere.

It’s very possible I am just missing my grandmother a lot today and that my grief is manifesting as frustration with the rest of my family who are not dead.

In good news, the Clinic Health Nurse weighed Evelyn again this morning and she has gained back the weight she lost after birth, plus extra. Almost 80g overnight, taking her to a grand total weight of 2.44kg.

I TOLD YOU she was feeding well.

She’s a litttttle jaundiced, no? In the same way an oompa loompa is a little orange. We suspect a spray tan addiction.

She looks slightly less orange in natural light. Yay for natural light.

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