Ehlers Danlos Syndrome

On this day

by Veronica on September 5, 2009

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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Dear Internet. What a lot I’ve got to share with you.

by Veronica on August 31, 2009

in Ehlers Danlos Syndrome, Food-Issues

Dear Internet:

Well now.

A week ago, I was going slowly insane. Amy didn’t listen to a word I said, I was yelling more than any person should have to and I think my head was about this close >< to exploding. Amy was having multiple tantrums an hour, being told no was a TRAGEDY of the HIGHEST ORDER and I was constantly running two steps behind, just trying to stop her hurting herself or destroying things.

It was bad is what I’m saying.

Then I read this post on Mommy is Moody and little things started to add up. Reading about Zoeyjane’s daughter’s food intolerances and her behaviour after she’d accidentally ingested some wheat was like a light going off in my head.

So I quietly eliminated the gluten from her diet one night. I didn’t say anything, I just checked labels and watched her. She was okay. Not fantastic, but okay. I watched her all morning the next day and then let her have noodles for lunch. (Wheat noodles)

The down slide in her behaviour was enormous. Within an hour she was tantruming. She screamed, she hit, she bit. It was awful.

It was enough to convince me.

That night, Nathan and I sat down and discussed things. We talked and talked and decided that as a trial, Amy is going to be gluten free.

Three days later, the difference in her is astounding. Let me say that again, the difference is ASTOUNDING. She hasn’t had a tantrum in three days. No screaming. No throwing herself to the ground screaming like the world is ending. No biting (herself, not me). No hitting. No hurting herself in order to scream louder. Nothing. She’s been lovely.

Before, Amy used to be a little manic. She’d bounce from one activity to the next, never stopping longer than a minute, never able to sit still. She wouldn’t allow you to correct her on anything and if you tried to teach her anything (counting, colours etc) she’d scream at you to SHUSH! until you stopped. She learned things at her own pace DAMMIT and don’t you DARE try and talk to her about anything she didn’t want to listen to.

We own a bookshelf full of children’s books. None of which she’d let me read. After 2 pages, she’d get bored, snatch the book and throw it away. Eventually we stopped trying.

However.

Three days into a gluten free diet and guess what we did yesterday? We sang the alphabet. Together. I read five different books to her. We counted. We talked. She ran up and threw her arms around me, just because she wanted a cuddle. Without screaming. She is happy.

She’s a completely different child.

Before, I don’t think anyone except Nathan and I knew just how bad she was. She’s always been well behaved for her grandparents, even if she was a little manic. Nathan and I spent a lot of time just looking at each other, trying to make it through another day.

Now? We don’t need to do that.

Sure, we have the regular toddler issues of boredom or having to share her toys, but she’s not in constant meltdown.

It’s really fucking nice.

Oh and LOOK. I’ve just discovered that people with Ehlers Danlos Syndrome tend to have food allergies/intolerances. Now really, are we surprised?

Because somehow, with all else that it causes, I’m not.

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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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Dear Isaac

by Veronica on August 22, 2009

in Ehlers Danlos Syndrome

Dear Isaac,

Next time you need to poo, could you not do it while your nappy is off? Today is not the first time I’ve hastily grabbed baby wipes and cleaned you up, trying to make sure nothing went on the carpet. Today IS however, the first time you’ve been faster than me.

Your sister would be proud.

Today for lunch you had: a small breastfeed, half a cup of mashed peas, a whole mashed pear and a slice of bread. You ate it all. You are slowly losing interest in milk-as-food, preferring instead to eat solids like the rest of us. Milk is a quick snack, grabbed between meals, or a mouthful here and there to satisfy thirst.

Except overnight of course. You drink more milk overnight than you do of a daytime. Thanks for that.

You’ve only had 2 naps in the last ten hours. Each of those naps were 20 minutes long. That’s not enough sleep. Not that I don’t love spending time with you, I do, truly. It’s just sometimes, quality is better than quantity. Tomorrow you can nap longer. I won’t mind, I promise.

That 10 minutes of non-stop giggles before? Awesome. The tired crash you’ve had since then? Not so awesome.

Your eczema has come back. I know, it sucks. We’re slathering you in cortisone cream and sorbolene, but until it starts to work, could you possibly refrain from scratching your eyes out? In the end you will be better for it. Eyes are handy things.

Your mobility is outstanding. You can’t crawl yet, but that doesn’t stop you wiggling all over the house. A quick note though, there is nothing interesting under the futon. You’ll just get stuck. Again.

You’re growing at a rate of knots. Clothes that swam on you yesterday are fitting perfectly today. I admit, this scares me a little. Soon you’ll be big and your head won’t smell nearly as good. I’ll cope though.

Oh and one last thing, if you could refrain from letting your joints click when I change your nappy/pick you up, that would be lovely. You have an appointment for an echo-cardiogram this week. It’s an Ehlers Danlos thing. I’m sure everything will be fine, but we’re just checking. Your sister will have to have one too. And me.

Anyway little man, I love you very much.

Love, Mummy.