Sleepless Nights

Author: Veronica

  • Wait and see.

    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:
    051

    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.

    +++++

    028

    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.

    +++++

    001

    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.

    +++++

    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?

     

     

  • Handing over the reins for a bit

    Today I have a guest post from the ever-amazing Caitlyn Nicholas. I can’t remember how I stumbled onto her blog a few years ago (gosh, time flies) but my envy of her warm weather and her blooming garden hooked me and her writing and personality kept me returning.

    I do suspect that she is superwoman though, because she has published not one, but two books in the last few weeks. I know. I KNOW.

    I am honoured to have her on my blog today to talk about herself and promote her two new books.

    ———

    Hey Lovely Veronica!

    Thanks for having me on your blog. I am a huge fan of yours and I’m really excited about being here today.

    Through November I watched with interest as you progressed through Nanowrimo. Huge congrats by the way for making it through to the end! It’s not easy. I know. It’s how I wrote my first book.

    I’m a terrible pregnant person. I get very morning sick, in fact I could give Kate Middleton a run for her money (though neither of us would be up to much running!!) When I was pregnant with my second child I needed something to take my mind off hurling every six seconds, and so started to write a ‘Mills and Boon.’ It was the best decision I ever made. I loved having something to focus on that wasn’t about babies or how I’d get to the shops and back without puking. When I got to about 10,000 words we arrived at November and a chance post on the Romance Australia loop alerted me to the existence of Nanowrimo.

    I dived in. Finished the book, submitted it to Mills and Boon (who rejected it in world record time!) edited it, subbed it to a competition (it came 4th) rewrote it, and then submitted it to Samhain Publishing. My Miss Nearly 7 was born two weeks later and I received my first book contract a couple of weeks after that!

    I just don’t think I’d have finished the manuscript (named Running Scared) without nano. If you’re curious about that story it’s still available via all your usual e-sellers in print and e-versions.

    I’ve had a few more books published since then, and, in the last couple of months have had two new releases.

    The first, a rip roaring romantic suspense called Drive Me To Distraction came out in November.

    Sometimes life or death decisions are easy. Alex Radford has a choice – borrow the money to treat her mother’s rare and aggressive cancer from sleazy moneylender Hamish MacCameron. Or do nothing and watch her die.

    MacCameron has an agenda. He wants Alex in his bed, and he wants her to help him exact revenge on his sworn enemy, Robert Dryden. He is only too happy to lend her what she needs, but the strings attached form a tangled web from which Alex has little hope of escape.

    It’s not all bad. Since she was a girl Alex has had one dream: to become a Formula 1 driver and show the boys how to drive a race car. MacCameron’s money gives her a shot at fame, and in a move that scandalizes the F1 racing fraternity she becomes the new driver for Rob Dryden’s struggling F1 team, Prometheus.

    Alex tries to keep her distance from Rob, knowing that one day she will need to betray one of the few people who ever had faith in her. But things begin to unravel when Hamish MacCameron is murdered and she and Rob are the top suspects on the list …

    Amazon | iBookstore | Kobo | Goodreads

    And the second, a romantic suspense novella called The Danger Game, came out in mid – December.

    Flick likes computers. She’s good with them, and they do what she tells them, mostly. People, however, are more of a challenge.

    But when a terrifyingly dangerous program is stolen, and her mentor killed, Flick finds herself on the run. The police are convinced she’s committed murder, and a sinister weapons developer will stop at nothing to force her to work for him.

    In Ben’s line of work being suspicious keeps you alive. So when Flick turns to him, he quickly realises that she’s up to her neck in trouble and hasn’t fully grasped the danger she is in.

    First he has to keep her safe, and then, together, they have to figure out how to save the world from an epic meltdown.

     

    Amazon | Amazon UK | Kobo | iBookstore | Goodreads

    I hope that your story, and the stories of all nano participants make their way out into the publishing world. There has never been a better time to be a writer. The opportunities are huge and chances of getting a publishing contract are never better. I’m always happy to lend help and advice where I can. Stop by my blog and leave me a comment if there’s something I might be able to help with…

    Huge thanks for having me.

    Caitlyn can be found online at Caitlyn Nicholas

    and

    Blog | Twitter | Facebook | Google+ | Goodreads:

  • The goalposts have shifted. My how they have shifted.

    I put Evelyn on her stomach this morning and she held her head up for five seconds, before collapsing, exhausted and crying. I celebrated. Five seconds. Maybe as much time as it’s taken you to read this. That’s how long her head was off the ground for and that’s what I was celebrating.

    Oh how the goal posts have shifted.

    I flipped her back over and picked her up, snuggling her into my chest. She looked at me with her huge wide eyes as if to say “what the fuck did you even put me down there for you tortuous milk woman” and I stroked her hair and held her close.

    She held her head up for five seconds and oh, I wish I had a photo of it because for a moment there, she looked so strong and so normal and I wanted to cry. I might have cried. Briefly. Damp eyes. You can’t prove anything.

    It must have exhausted her because she then went on to nap for four hours.

    Ups and downs.She’s almost 19 weeks old.

    She woke up and I nursed her and her eyes stopped working for a bit, which frustrated us both, because how can I make her smile easily when she can’t see me and “holy fuck the world has just gone dark again, I can’t say I enjoy this, hold me close and rock me milk woman.”

    That’s been my day. My week even. The next few weeks are peppered with doctors appointments. I’m expecting to be thoroughly exhausted by the time Christmas rocks around, but who knows?

    Today Evelyn held her head up for five seconds.

    And that is enough.

     

  • Christmas Shopping

    This post is sponsored. Ebay gave me $200 to spend at Ebay on Christmas presents and I said I’d tell you about what I bought. I agreed to this because I loathe shopping in-store for things during the Christmas madness.

    —

    I get twitchy taking Evie to shopping centres. Because of all her medical issues, we haven’t been able to vaccinate her yet and on the bad days, all I can imagine is her contracting whooping cough or something ridiculously awful and landing us back in hospital. Plus, not easily being able to get to the shops without Isaac in tow made it even harder.

    So I went online and shopped from the comfort of my living room.

    Look, I like Ebay. I’ve had good experiences with them, and I’m pretty loyal. I like that I can buy just about anything there that I can’t pick up elsewhere because of the International shipping. Case in point, Evie’s much loved dummies – the gumdrop kind, the only kind that she would actually take, can only be bought through Ebay if you’re an International customer.

    I finished up the last of my Christmas shopping last night, through a few stores, but Ebay was nice and easy.

    Among other things, I bought Evie these:

    And for Amy, I got this:

    Isaac missed out on the Christmas round of Ebay (I had him covered already), but his birthday is in January, so I’ll probably be back soon for him.

    The images should all be links, in case you’re also interested. I did buy other things, but they’re secrets still.

    It was an easy way to do everything, especially with small children in tow.

    Now my only problem is that I need to get to the postman each morning before Isaac does!

    If you buy now, then everything should be delivered well before Christmas. I think the press release said that the biggest day for online shopping is actually December 9, so you’ll even be beating the rush.

  • No control

    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.