Headfuck

On this day

by Veronica on September 5, 2009

in Ehlers Danlos Syndrome, Headfuck

On this day three years ago, my little girl was born. A silent bundle, plopped onto my chest. Wide eyed, she looked straight at me.

This day; today, she turned three. Three. A big number for such a small girl. But then, she’s not a baby anymore, nor a toddler.

Today. The day after I popped my ankle badly. I woke up, smiled and helped open gifts. I took more painkillers than I probably ought to, braced everything up and put a smile on my face.

Because my little girl, she had turned three. And she deserved that from me, the happy and the smiling and the Very Happy Birthday she kept telling me she was having.

And I smiled and breathed deep when the tears threatened to flow. Because my little girl had turned Three and there should be no room for grief here.

I smiled at the barbeque in her honour. I held my shit together, helped along by more elastic bandaging than one person should fashionably wear. I smiled and laughed and took photos.

Inside, I died a little.

Because this is not how it should have been. We were not meant to be missing someone so badly that breathing hurts.

Amy turned Three and my world started to crumble. My walls, built up over these last ten weeks fell apart.

***

My physio set me adrift yesterday.

Here are your exercises, make sure you do them, feel free to ring me with questions, make an appointment if you need more braces, goodbye.

Somehow I can only think that I’m not the success story she was hoping for.

Treating Ehlers Danlos is not an easy task. I know this.

Still. I was hoping for a little more.

Hopefully my next referral gets me somewhere.

***

Adrift.

Washed in a sea of grief.

Sinking, through the bubbles.

Not breathing.

Until suddenly I am.

Breathing again.

Because I have to.

***

Today was hard. Harder than I expected, harder than I’d have ever imagined.

***

Today Amy turned Three and it was bittersweet.


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Millions of Ideas

by Veronica on September 3, 2009

in Ehlers Danlos Syndrome, Food-Issues, Headfuck

A million ideas whirl through my head.

Flavours for a wedding cake, learning to cook gluten free, things we can do today.

Unfortunately, my body is completely unable to keep up as I stagger around the house holding myself together. Parenting is perfect when done from a horizontal level. Perfect for me at least. Eventually the kids will need feeding or changing and I’ll have to stand back up, a larger undertaking than I’d like it to be.

I’ve had the flu and my brain is still foggy from it. Writing is not coming easily today, yet I still want to share; to write. A project of mine sits calling me. I don’t think my wrists will hold together long enough to do any substantial work on it. I set it aside. I could work on it, at the expense of tomorrow’s movement. I’m not willing to give that up though.

Tomorrow I have physio. I was meant to have been doing exercises for this last fortnight.

Unfortunately stability ball + Amy + 2 cats + a baby + the flu = no time/energy for exercise.

The cats run over the ball, making me thankful that it’s hard rubber. Amy jumps on me. Isaac cries.

In order to have space, I need to clean up the toys first. By the time that is done, I really need to lay down with my feet up before I fall over.  It’s not conducive to exercises.

Instead I practise tightening and releasing all of the muscles I can feel in turn. It’s not enough, nor is it what has been prescribed, but mobility has not been my strong point this week.

I worry that the physio is just making me tired and isn’t quite tailored for what I need. It’s exhausting, having to hold yourself together to move. It leaves me with another thing I need to be doing, when all I want to do is sleep.

I can’t bend at the moment. Leaning over and then standing back up is more of an effort than I’d like it to be. The pain through my pelvis tells me that things are slipping, that I’m not holding it together well enough. My hips slip in and out of joint as I walk. I ignore it, thankful to still be able to walk.

It’s sunny outside. I sit on the grass and lean over to pull weeds from the garden. Isaac gurgles behind me, thrilled to be outside, pulling at the grass. His bouncer bounces frantically as he tries to kick himself out of it and into the dirt.

I know he’d love the dirt, but I’m not ready for that yet. Plus, the grass is wet.

Amy bounces on the trampoline. Golden highlights glint in her hair as she smiles. I like her again. I never stopped loving her, but she was a hard child to like some days. She was difficult. I don’t remember how I coped. Moment to moment I suspect. It was bad. It’s better now. Gluten is Evil.

Everything runs together in my mind.

A million thoughts. A million ideas.

There is an open home for Nan’s house next weekend. Surely that’s too soon? How come we’re moving so fast all of a sudden?

But then, there would never be enough time for me to come to terms with it. I need to just keep breathing, one foot in front of the other. There isn’t enough time to dwell. Not enough time to grieve either, but I can’t create more time.

Millions of thoughts. Rushing past, like water under a bridge. Or the bubbles that float past as you sink into the ocean.

I feel I’m drowning in a sea of grief and anxiety. Everything is blue and the bubbles are rushing past faster as everything slows down.

I don’t have time for this. I push to the surface and breathe.

Just breathe.

One step after another, tightening muscles as I go.

One breath after another, holding myself together.

****

Unrelated: I have a giveaway happening for US residents. (Sadly, not Australian ones. Grump)

You can either click here, or click on the giveaway’s tab at the top of the page.

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Daffodil Day

by Veronica on August 28, 2009

in Cancer, Grief, Headfuck

Daffodil Day 3 years ago:

I was sitting in a hospital waiting room having irregular contractions. According to my dates, Amy was 5 days overdue. According to their dates she wasn’t due for another 2 days. I was big, heavy and uncomfortable.

My name called.

Come through.

An American doctor. He was brisk. I told him I was having irregular contractions and he offered to check my cervix. Or more correctly, he offered to have his medical student check my cervix so long as I didn’t mind.

Two checks later, it was ascertained that my cervix hadn’t jumped ship and gone for a holiday like the med student suspected. Nor had it gotten lost, she just wasn’t very good at checks yet.

I was pronounced 3cm dilated and ready to drop. Thrilled, I put my pants back on as the doctor told me he’d probably see me tonight.

We walked out of there happy, certain our baby was on the way.

***

One hospital floor down, Nathan’s father lay in a bed, having just been diagnosed with cancer.

***

We bought a daffodil pin that day, as well as a little yellow bear. Still a little shell shocked, we walked out of the hospital not knowing whether to celebrate the impending birth of our daughter, or cry for the diagnosis my father-in-law had been given.

***

Three years later my father in law is alive after undergoing intensive chemotherapy. It wasn’t easy, but then, cancer never is.

Three years later we’re getting things ready for Amy’s birthday. Despite being told I’d give birth that night, Amy hung around in there for another 8 days. We’ve got presents hiding in the closet and I’m trying to decide on a cake flavour. I’m counting sleeps until and hoping that things will just fall into place like normal.

Three years later I’m grieving my grandmother, a victim of a cancer she was never at risk for. She, who’d never smoked a day in her life struck down by lung cancer. Her second run in with cancer, leaving us broken without her. Stronger, maybe, but flawed. Always flawed. Grieving.

Three years later I’m not sure how I’m going to get through Amy’s birthday without Nan. I’ve spent so long coping and just doing what I’ve got to do that I haven’t taken time to cry or process anything. I’m starting to be very not okay anymore and I don’t know how to handle that.

Three years later I don’t have the time to grieve alone. These children of mine have wants and needs and their wants are mostly louder than their needs.

Three years later and the edge of my purse still has the daffodil pin stuck in it from so long ago. A pink ribbon has joined it.

Showing support for the people who suffer; the people who die.

It’s not enough, but it’s all I’ve got.

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Isaac’s E.C.G.

by Veronica on August 26, 2009

in Ehlers Danlos Syndrome, Headfuck

As we walked into the hospital, I took a deep breath. The hospital smells like cleaning agent and regurgitated air conditioning. It’s not a smell you forget in a hurry. It was bitterly cold outside and I hopped up and down a little as we waited for the lift. Isaac gurgled in his pram and I smiled down at him.

I hadn’t thought about it. I’d pushed it to the back of my mind and refused to even dwell on the possibility of anything being wrong. It’s just a baseline appointment. We don’t expect to see anything wrong here. I breathed.

The lift bell rang as the lift arrived and we stepped in.

Level 2.

The same level all of Nan’s oncology appointments were on.

As the lift doors opened, my heart started to race. I stepped out with a confidence I didn’t feel and walked along the corridor.

We got to the junction of the two hallways. One would take me to cardiology. The other led to the Oncology doctors rooms.

I looked down the hallway I had walked so many times before.

Walk along there. Turn left and then left again. Smile at the receptionist and then a right turn into the waiting room.

The waiting room that would no longer hold my mother and grandmother. We three. The girls club.

From Nan’s diary.

[…] the good thing about Kim & Von is that we can talk about anything, I can be doom and gloom or happy and chatty it makes no difference to them they don’t get uncomfortable and can do the “what ifs” with me. What would I do without my “Girls Club”??

I breathed and walked in the other direction. Along another corridor we three had all walked together more times that I counted, and finally down a new one. One without any lingering memories.

We found our area and spoke to reception. Isaac gurgled in his pram and I lifted him out to feed him. He elected to smile and gurgle instead. Smiling back at him I gave up on the breastfeed.

5 minutes later, his name was called.

Here you go, come in. Can you take his tops off for me? Right. Let’s begin.

She was lovely. We made small talk while Isaac gurgled and tried to eat the ultrasound wand. I watched the screen nervously, but there is nothing to see on a heart ultrasound. The faint whoomp whoomp of Isaac’s heartbeat at intervals broke through the pictures being taken.

Well. Everything looks fine. There are no issues with his heart whatsoever. His mitral valve has no leakiness. It’s a perfect baseline. Once you get him dressed you can leave. No need to talk to the girls at the front desk. Will you need to come back again?

I’ll talk to the Paediatricians about it. I think they want to keep an eye on both children, but it wouldn’t be often, probably every 2 years.

That sounds about right. I’ll see you later then.

She held the door for us.

Thank you so much.

She looked at me and smiled.

Nathan and I walked down the corridors, back to where all my memories lay.

It’s really nice to walk out of the hospital with good news.

Yes. Yes it is.

We walked on.

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The House

by Veronica on August 17, 2009

in Headfuck

I pop my key in the door and turn the lock. It opens with a click and I walk into the dim depths. The house that was always warm is now cold. I flick on a light and wrap my arms about myself. With a press of a button, I turn on the heatpump. Knowing that it will take a while for the heatpump to warm things up, I turn on the wall heater as well.

Nathan brings the children inside. Isaac is in his pram, complaining about the lack of mobility he has in there. Amy walks around the house getting into mischief.

The house is a mess. As I walk around, I pick things up and put them back down again. This doesn’t feel right. It’s not easy here.

The floor has gotten dusty. Nan would hate that. I poke at the dust with my foot, unable to muster the energy to find the broom and sweep.

We wait for Mum to arrive.

Boxes litter the floor. Empty, they are just waiting for things to fill them.

It’s not right that you can pack someone’s life into boxes after they are gone.

I take a deep breathe and pick a cupboard and a box. Chin up and head back, it needs to be done. There is no time for memories.

The scrape of gravel outside tells me a car has arrived. Mum. Amy is excited.

Nanny! Nanny! We are at MyNanny’s house!

Yes. We are.

Amy doesn’t quite understand the concept of death. She’s been told that MyNanny died, but she doesn’t understand what that means. She just knows that MyNanny is no longer here, in her house.

I know this too.

Mum and I look at each other, understanding without words. This is not easy for us, to work methodically through Nan’s house packing things up. It’s not a small job either.

Grab a garbage bag. We’ll do the closet.

Okay.

Vinnies*?

Yes.

Yes.

No. I’ll take that.

You sort, I’ll fold.

Okay.

It feels a little morbid as I pick items from Nan’s closet to go into mine. We’d talked about this, in the before. I knew that she wanted me to have her clothes that I would wear. Hell, I’d been borrowing her clothes since I was 10. It was what we did.

I take a deep breath and pick through.

Emptying clothes hangers.

One.

By.

One.

I stroke things. Remembering things I’d borrowed previously. Remembering things Nan used to wear often. Some things I can’t bear the thought of.

Vinnies. Please. I couldn’t wear it.

I know.

Okay.

It smells of Nan here still. In the silence, it almost feels like she is watching me. I know she is not. She swore she wouldn’t haunt her house and I believe that if she’s watching me, here is not the place to find her.

I’ll fall apart later. Not now, not here. Panic attacks when people are watching are awful.

Breathe. Just breathe.

Slowly we’re emptying things. Packing them up. Leaving them empty.

A person lived here once. Not anymore.

Here, there are just broken hearts and silence.

A lifetime, being packed into boxes and carted away.

***

*St Vincent de Paul Society. Second hand shops.

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