No control

by Veronica on December 1, 2012

in Evelyn, Grief, Headfuck

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.



Ankia December 1, 2012 at 7:47 pm

Shame lady, I don’t even know what to say… Stay strong! XXX

dharawal December 1, 2012 at 7:57 pm

My heart is breaking for you right now, and I wish I had a magic wand to wave. Much much love.

Mindy December 1, 2012 at 8:02 pm


Bree @ Twinkle in the Eye December 1, 2012 at 8:10 pm

I’m so sorry you are experiencing such anxiety when you should be experiencing such great joy. I pray that you find your answers and that your little girl will be well xo

Pixie December 1, 2012 at 8:21 pm

I’m so sorry you had a bad day.

Hoping you find some peace soon

Love xxxxxxxxxx

tiff December 1, 2012 at 8:50 pm

Sending love. Bad days are just very bad, huh?

Anne December 1, 2012 at 9:02 pm

I can’t imagine how hard this must be. Sending big hugs…

Glowless December 1, 2012 at 11:48 pm

I have no idea how you even make it through this heartbreak xx

Linda December 2, 2012 at 6:48 am

obviously Evelyn was given to parents who had the strength to manage her issues. Sending all the love and positive thoughts and energy your way.

Linda December 2, 2012 at 6:48 am

obviously Evelyn was given to parents who had the strength to manage her issues. Sending all the love and positive thoughts and energy your way.

Anne December 2, 2012 at 7:32 am


Madonna December 2, 2012 at 7:34 am

I know this feeling well. My Lara is now 4. Four years old!! I have experienced much of what you have. The not knowing. The sadness, the grief over what *should* be and yet, is not. I’m sending you a hug. Because sometimes the hard shit is just too hard and it’s not freaking fair. Love on that baby and hold her tight because we both know that’s all you can do. xoxoxo

Fiona December 2, 2012 at 8:39 am

oh my lovely. Much love your way

Alison December 2, 2012 at 8:56 am

My heart breaks a little for you, each time I read your words. Nobody can know what you and your family are enduring, though you write of it so poignantly. Thank you for the having the courage to share it with us. Maybe another project like nanowrimo to keep your brain busy would be a good idea? I read your story and look at your photos and hope, and hope, and hope…

river December 2, 2012 at 2:01 pm

This is so sad, it makes my heart heavy.
I want to bring you comfort and solutions, but I have nothing.

Kate December 2, 2012 at 2:47 pm

Dear Veronica, every atom in my body wants her to be okay too. I have looked on her dear, sweet face in your photos and wished and hoped and prayed, and I know others have too. I hope all our collective yearning moves the universe in this direction.

Heather December 2, 2012 at 3:32 pm

Big hugs!!

Michelle December 2, 2012 at 5:16 pm

I’m sorry to see that you’ve had such a bad day… I wish I could help you.


Marylin December 2, 2012 at 11:31 pm

There are no words, are there? Sending you so much love, sweetheart. xxx

Kirsten December 3, 2012 at 8:28 am

If something is wrong, Evelyn is so lucky to have you as a parent who will help her to see it through x

Pamela December 3, 2012 at 5:08 pm

I have been reading your blog for a while now and I can’t believe how strong you are even, actually especially, on days like this. Then when you had your birthday and I found out how old (young) you are I was blown away. You are one amazing woman.

Leslie December 4, 2012 at 4:55 am

Sending lots of love to you, my friend.

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