Sleepless Nights

Author: Veronica

  • Bedtime never goes how I want it to.

    It’s bedtime.

    However, I still have one child sitting at my feet eating steamed carrots and the other child, well she is laying in bed, screeching her demands. It’s a good thing she doesn’t have any hostages in there, as the situation is escalating.

    I NEEEEED an APPPLE!

    No. You don’t. It’s bedtime.

    I walk away again, before the next demand comes.

    MUMMMEEEE! I lost my DRINK!

    Back down the hallway I go, to point out to her that her drink is still next to her pillow.

    But I need cordial and water!

    Not for bedtime. For bedtime you get water.

    OOOOOOH.

    And the meltdown begins. Again.

    I can hear her now, demands silenced in the face of my No. Go to sleep. attitude, playing with the toys. It’s meant to be bedtime, but Amy is Three! and Three! doesn’t cave to the demands of sleep and how your body is tired. Not tonight.

    Isaac is crawling around, a late nap in the car has stuffed his bedtime up. As much as he enjoys playing, for him, it’s suicide hour and I’m not sure if my legs will survive anymore biting. We won’t talk about my nipples.

    I chase him around the lounge room, trying to change his bum. The little bugger is getting faster and he giggles as I pin him down. Until he realises that I am putting a nappy back on him and then he fights me, like I’m trying to murder him.

    Stop that! You need a nappy on.

    AIEIEIEIIEEEE.

    He twists and turns and it’s like wrestling an octopus.

    An octopus that someone has covered in oil.

    He’s faster, but I’m bigger and stronger and I confuse him with kisses for the 10 seconds it takes to get the nappy done up.

    Exhausted, I let him run away to play.

    It’s almost his bedtime, and today, almost mine as well.

    I love my children, so very much. But my favourite part of the day? That comes when they’re both tucked up in bed, asleep and I can breathe again, without any short and loud people throwing themselves at my front in a huff.

    I like the evenings.

  • Happy Birthday Isaac!

    Dear Isaac,

    It’s been a huge year little boy. You spent your first few weeks in a sling, coming with me to doctors appointments. Your great-grandmother had cancer and we were part of her support team. She was in hospital when you were five months old. We sat there, waiting to speak to the doctor when you began to scream. And scream and scream. You got to spend a night in hospital that night. We still don’t know why you screamed, although I have suspicions.

    Nan died a few days after your hospital admission. You were in the room with us when it happened, fast asleep in your pram. I’m grateful for that, that you were sleeping.

    You had a seizure when you were 6 months old. We spent yet another day in Emergency with you, only to be sent home. Luckily you haven’t had another one. The six months since then have been a whirlwind of doctors appointments, geneticists, tests and more tests. You’ve been diagnosed with Ehlers Danlos Syndrome and been poked and prodded and shown to students.

    You’re my happy boy, always smiling. You’re a bit grumpy this morning, but that is what you get when  you spend most of the night awake. You’re still smiling, you just want to be doing it from the safety of my arms.

    You still don’t sleep through the night, or sleep much at all actually. I’m going to blame genetics for that, your sister didn’t sleep either and neither did I. Or your grandfather for that matter. It could be the Ehlers Danlos; actually it’s highly likely it is, but we’ll never know as you can’t tell me.

    You crawl so fast, especially when you think you’re missing out on something fun, or food. You like nothing better than launching yourself at your sister, only to have her scream ‘Isaac is going to GET ME!’. You giggle and I have to rescue her, as you try to pull her hair, or squash her flat. She’s not very rough and tumble and yet, you are.You don’t walk yet, although we’ve had moments when you’ve forgotten to hold onto anything and stood by yourself for a few moments. I’m not worried about the lack of walking, not at all. With your bendy bits, walking is too hard for you right now. You will do it when your legs and body are ready and that is fine.

    Isaac, we’ve got an interesting road ahead of us as you get older. I’m not looking forward to seeing how the EDS manifests in you and your sister. I spend a lot of time hoping that you’ll only ever have a mild hypermobility, but then, I’ve seen your skin tear and I may be kidding myself.

    When it comes to food you are SO there. Any and all food, you don’t care, so long as you can feed it to yourself. You’re gluten free like your sister, as gluten causes you terrible eczema. You’re off to have (genetic) blood tests for coeliacs tomorrow and I suspect that is going to be great fun, pinning you down for a needle.

    Your favourite things are wheels and buttons, although I suspect boobs come in very close. We’re slowly weaning, cutting out feeds left right and centre. I wouldn’t be so adamant that we needed to wean if you didn’t keep biting me. Biting is not pleasant. Laughing when I tell you no, even less so.

    You’re getting so big and I’m not entirely sure where the time has gone. It passed in a haze of appointments and grief and busyness. It’s been a hard year this year and it’s still hard. You’re always ready with a snuggle and a hug though and for that I am grateful.

    Happy Birthday baby boy. You’re my handsome boy, my beautiful happy child. I love you more than life itself and I would do anything for you, even when you do bite my nipple and stay awake all night.

    Isaac - First Birthday

  • I want…

    I want to run myself a bath.

    Slip under the water and feel it swirl around me.

    I want to lay there, in the warmth and day dream, imaginary conversations between me and people I’ll never meet. I want to let my imagination run wild and emerge, warmed through and ready to write something, anything.

    But, it’s the middle of the day and Isaac has just woken from a nap. Amy is asking for food and Isaac is laughing at me.

    There is no peace, not for baths. Not for daydreaming or imaginary conversations.

    ***

    Everyone is talking about Haiti.

    And I want to ignore it.

    Because after getting emotionally involved with Black Saturday, with Hurricane Katrina, with the Tsunamis, with everything, I just can’t.

    It comes on the news and I purposely zone out.

    I can’t think about it, I just can’t.

    I need to protect my emotional integrity, in order to have enough for myself.

    I can’t take on board the suffering of hundreds of thousands of strangers.

    Not this time.

    ***

    It’s been almost 7 months since Nan died and I miss her more every day.

    But it’s been 7 months and it’s harder to say that I miss her when I’m having a bad day.

    It’s not an excuse.

    It just is.

    It’s also the reason I can’t look too hard at the eyes of the Haiti victims.

    Because I need my emotions for myself.

    And I’m sorry.

    ***

    I thought I was over the bitterness that trying and failing to conceive brought out in me.

    I thought I had lanced that wound with the successful birth of a healthy baby boy, who seems to have made it unscathed to his first birthday (more on that tomorrow).

    I’m not though.

    The announcement of a pregnancy this last week, from a girl who I will say should not be pregnant again, has me bitter all over again.

    That poor child.

    The mother, and the baby to be.

    She sounds pleased about it.

    I can think of people who would better deserve a child.

    And I’m a bitch to think that, I know.

    Who am I to say that she shouldn’t have a baby? Who I am to judge?

    I’m no one.

    I don’t get a say.

    But I still think it.

    And I discovered, from this, that having trouble conceiving a baby leaves wounds.

    It leaves wounds, that while they might disappear under the surface, they never really heal.

    So I can safely say, that while I am happy now, I can still be bitter.

    I want to not be bitter.

    I want to read her pregnancy announcement and be simply happy for her and not terrified about what it means for everyone else. About what it means for a system already clogged with women like her, babies like hers.

    It’s a horrible thing to admit.

    ***

    I want to curl into a ball, and hibernate for a while. I want time to be sad, to be bitter, to ignore the world for a while.

    There is no time, not for me.

    Eventually.

    Maybe.

    I’ll be less busy.

    I’ll have more time.

    ***

    There will be a doctors appointment soon, where I discuss my panic attacks and hopefully, get something done about them.

    Because they’re crippling.

    And horrible.

    But I have a tendency to be matter of fact about things.

    And doctors don’t take matter of fact seriously.

    ‘Oh that? I just dislocated my shoulder. I’ll be okay.’

    ‘It’s just my knee. Hang on, I’ll put it right.’

    ‘Meh, it will be okay.’

    I want to say –

    I hurt and

    I keep panicking

    and I’m not sure it’s normal to wake up at 3am and not be able to breathe because you have something sitting on your chest.

    But meh.

    I’ll be okay.

    I just won’t look the Haiti victims in the eyes.

    At least,

    not until I’ve got my head back together.

    ***

    Isaac turns ONE tomorrow and I will certainly have a post celebrating that. We had a good day today, with my parents coming over to visit and gift him with a wooden train. It was a good afternoon. I’m just a little flat this evening.

    If you want to donate to Haiti you can click here to donate through the Red Cross. Just because I can’t watch them, doesn’t mean they don’t need helping.

  • Different

    A phonecall this afternoon:

    Hi, I’m calling about your appointment on the 19th?

    Yes?

    It’s been cancelled. He needs to see a Paediatric Opthamologist, not the regular one.

    I think: You knew how old he was when this appointment was booked. You knew he was a baby, why all of a sudden did you realise the need for a Paeds Specialist?

    I say: Oh, okay. That’s fine.

    It doesn’t matter, we still have to go into the hospital that day anyway, both children are having blood tests to test for the gene that causes Coeliacs. A minor annoyance, compared to the Ehlers Danlos Syndrome, but one they want to follow up with.

    A letter in the mail:

    When I first saw Isaac, he was sitting at the 10th percentile for gross motor development.

    That number, 10th percentile kicks me in the guts. I knew he was delayed, but 10th percentile?

    Since then, he is crawling and pulling to standing. He is now at the 30th percentile for gross motor skills.

    30th, I think, that’s better, right? It could be worse.

    Then I kick myself for thinking that it could be worse, because for some people, it is worse. Some children are off the charts, never to fall back on them again. Some children are at the 1st, 5th, 10th percentile still.

    I was warned that both children would be slow with their gross motor skills. I know that Amy was, I watched Isaac lag behind his peers also. It didn’t bother me, knowing that walking would be late, that things were going to be a little harder for them.

    Seeing it on paper however, 10th percentile, 30th percentile, even as I tell myself that the numbers mean nothing, that hurts. Because on paper, all they are is a number. No one sees how well Amy talks, or how Isaac is clever and works out how to do things differently, that he is determined and that she is amazing. They’re just a number somewhere, a statistic.

    Traversing the realm of doctors and genetic testing and blood tests and physio is harder than it sounds. It’s a stretch of my already limited energy, but it’s something that needs doing. They need the physiotherapy and the follow-up care and the specialists.

    And I’m grateful, I truly am.

    I’m grateful for a diagnosis, I’m grateful for the Australian Medical System, that means this, all of this, it costs me nothing. I’m not likely to go bankrupt providing the children the care they need.

    I’m grateful for the quality of care we are receiving, even when not enough is taught about EDS in med school.

    But sometimes, I wish that the children didn’t have to be just a statistic. Even if that statistic is, in my opinion, deeply flawed.

  • It’s been a long time.

    I started this blog in August 2007, when Amy was almost 1. I was lonely, living in the middle of nowhere, with no adult conversation.

    I am positive that blogging saved my sanity, more than once.

    This little space, it’s been my safe haven. My place to hide, a dumping ground, somewhere to write out my thoughts and stresses, deal with them and move on.

    When I started, I had no readers, except my mother. For months, no one was reading here, until I participated in NaBloPoMo (National Blog Posting Month). I picked up a few readers over the course of that month (Hi Marylin!) and slowly, my readership grew.

    Blogging is fluid. I’ve gained readers and I’ve lost readers and 2 years later, aside from my regular commenters, I have no idea who reads here anymore. I’ve got less time to comment now, although I’ve probably got more blogs in my reader. Nowadays I tweet as much as I blog and I enjoy every second of it, even if the social media moguls are sure that I’m ‘doing it wrong.’

    It’s funny, I still check my Feedburner numbers most nights to see how many subscribers I have (in the scheme of things, not very many) and I will check my stats and referrals to see where people are coming from, at least once a day. Some things never change, and my obsession with stats is one of them.

    I think, after all this time that things are starting to fall into place for me.

    I’m a little late I know, but today is Delurk Your Lurkers day and I would LOVE to know who is reading here and a little more about them.

    Who is your favourite blogger (while I’ll be thrilled if you say me, I know that it’s not true across the board, so be honest) and who was your first blog read?

    My first reads were Lotus when she was still on Myspace (Gasp! I know!). Once I’d moved away from Myspace and convinced her to come too (aren’t you glad I did?) I found MiscMum and promptly lurked all over her blog roll.

    And 2 years later, here we are.