My grandmother is 87 today and Isaac will be one in a few days.
I successfully avoided getting together with my extended family at Christmas.Today we will all be together for the first time since Mum’s funeral. Combined with the fact that I handed the keys to Mum’s house over to the lawyers on Monday has made this past week very emotional.
Tears are never very far from the surface and my men are tiptoeing around me lest I rip their heads off.
Veronica has been busily disagreeing with a “hate blogger” which has provided me with a much needed distraction from myself. The comments section of that blog is a hoot. Accusations, sweeping assumptions,aspersions and arseholiness are the main themes.
It is all very amusing for about five minutes until you realise that it is real people they are ripping on. I am very proud of Vonnie for standing up for what she believes in and loudly saying that by our silence we are giving these stupid hate bloggers more power. Personally I believe in Karma and I cant be bothered with the small mindedness of chicken liver and her pathetic cronies but I will stand shoulder to shoulder with my daughter and say this crap shouldn’t be tolerated.
David is aghast at the ramming and subsequent sinking of the Ady Gil by the Japanese security ship the Shonnan Maru. The Japanese are killing whales in Australian territorial waters and our government is hoping that by ignoring the problem, it will just go away.
I have been very impressed by my son’s articulate and passionate response to the sinking of the Ady Gil. David would love to join the Sea Shepherd’s crew and be actively involved but the ships are vegan and my son is honest enough to admit that he isn’t quite that committed. Yet.
There is a rally to support Sea Shepherd at the Abel Tasman Memorial fountain at Salamanca at 11 am on Saturday the 16th of January.David is keen to attend his first environmental/political rally.
I am very proud of both my children for passionately standing up for what they believe in.
Thankyou for the response to my video of Harry and the pigs. Jientje and Barbara have asked me to make some more videos and so I will. What sort of things would the rest of you lovely people like to see?
I have had the camera out a bit this past week and I think that I might have enough decent shots to post a couple of photos later on this week.
Lastly I want to thank you all my dear internets. I really don’t know how I would have gotten through the last six months without your support. Thankyou.
The first sentence of the opening paragraph sets the tone for the whole piece of writing that follows. This is even more true for a blog post where lots of people don’t actually read the whole post. The opening and closing sentences give the skimmers a point of reference to frame their questions or comments.
Sometimes I will sit here and the words just spill out onto the page faster than I can type them. The piece of writing takes on a small life of its own and all the words fit together nicely.
Other times I will be interrupted and lose my train of thought so many times that, I either just give up and save the piece to my drafts folder or I struggle along clumsily, placing all the wrong words in a crooked line.
Often I will read something my daughter has written and the powerful beauty of her words will take my breath away. I will start to cry as I nod yes to her words, and then withher pain ringing in my ears I end up here trying to articulate my own.
Veronica will be 21 on Thursday. Veronica’s 21st birthday was the milestone that Mum was aiming for. I am struggling to contain my bitterness that we lost Mum to a cancer she should never have had. I am so sad for Veronica that her birthday will be such a difficult day without Mum.
Normally we would have planned a celebration. There would have been lots of food and music, laughter and joy. Now there is only sadness and ashes.I am bitter that the joy has been stolen from my child.
Veronica and I are going out for lunch to our favourite Japanese restaurant tomorrow, just us two together.
Tomorrow is Remembrance Day (11 November) marks the anniversary of the armistice which ended the First World War (1914–18). Each year Australians observe one minute silence at 11 am on 11 November, in memory of those who died or suffered in all wars and armed conflicts.
If I am honest with myself, I will admit that Ehlers Danlos Syndrome frightens the shit out of me. I try not to think too deeply about the long term prospects this disorder has for my children and my grandchildren. I am generally an optimist who doesn’t belive in worrying about things beyond my control.
But.
Some days an icy hand of fear just grips my heart and squeezes tight.
Some days the fear sits heavy inside my head pushing out all thoughts, except for the ones that tell me that I am afraid. I am afraid for my children, afraid of their choices. Afraid of the possible consequences of their choices, afraid of fear itself.
My fears which are the normal fears of a parent are magnified by the loss of my Mother and by the challenges assosciated with living with Ehlers Danlos. This post written by Achelois, gives me a glimpse into a possible future for my daughterVeronica and whilst it scares me witless, I know that Veronica is a strong young woman who will cope in her own indomitable way.
My son David had a dentist appointment yesterday. Pre-EDS, Dave would have just walked to the dentist from school, had his fillings and then gone back to class.
Post-EDS it is a whole different ball game.
David had to be assessed by a senior dentist in Hobart to see if it was safe for him to be treated at the small local dental clinic. The senior dentist needed a copy of Davids echocardiogram report and so it took nearly four months of to-ing and fro-ing before it was decided that yes, Dave could be treated at the small clinic which is attached to his school. But, he needed to have a preventative dose of antibiotics an hour before his treatment.
I don’t know exactly why David needs the antibiotics before his dental work, it is something to do with either his heart or his lungs. The Spouse took the phonecall from the dentist and didn’t ask why, he just wrote down Dave’s appointment times.Gah.
David’s Echocardiogram shows that he has mild pulmonary hypertension and the right hand side of his heart is enlarged. He is fifteen.We have an appointment with a cardioligist in September and I am trying not to think too deeply about the implications for my son until then.
But again that icy hand of fear is giving my own heart a bloody good squeeze.
As I was sitting in the waiting room of the dentists, trying to ignore the crap on the tv, I was quietly worrying about my son. I was hoping that the dentist wouldn’t accidentally dislocate David’s jaw.Possible scenarios and implications of a dislocated jaw played through my mind, all I needed was a brunette mournfully wailing for Heathcliffe and the melodramatic scene in my head would have been complete.*Sigh* I have a very vivid imagination.
David’s jaw didn’t dislocate but it became very clicky during his treatment and they want a senior dentist to have a look at it, at Dave’s next appointment.
Since Veronica’s formal diagnosis of Ehlers Danlos Syndrome earlier this year everything has become much easier,well much easier within the medical system at least. That little piece of paper from the geneticist means that Veronica doesn’t have to fight to be taken seriously.Her children are being closely watched by the paediatric team at the hospital and there are protocols being put into place for them. YAY.
Tired, I am tired today. Tired of worrying about my daughter. Tired of trying to keep my shit together. Tired of being strong. Tired of being nice. But mostly I am tired of cowardly fuckwits like anyonetoblog.
Hmmm am amazed that you cant write 40 words yet you can type till the cows come home…. is this just writing for profit or just a sympathy blog………..god only knows
For fucks sake arsehole, if you actually read the post it is glaringly obvious that Veronica isn’t after sympathy. But of course self centred dickheads like you only see what they want to see. Leaving a nasty,anonymous comment is a cowardly, low act and tells me all I need to know about what sort of person you really are.
Achelois, a lovely English blogger has written about trolls in her latest post The Internet Bully & A Request her post is well worth reading.
I hadn’t really thought about trolls being bullies. I had just thought that they were a shadowy sub-species, sort of a cross between Gollum and Dr Phil. Full of useless advice and observations delivered in a slithery tone of voice.
“Oh yessss my precioussss you is not broken. You issssss pretending.You neeedsssss to get a real job and sssstop writing on the internetsssss.”
I have written a formal comment policy for my blog. It is up there at the top of the page. So in keeping with my current policy I will now edit anyonetoblog’s comment to amuse myself. Even though the comment wasn’t left on my blog, they harassed my child and as such only deserve my contempt. Veronica’s father’s feelings are quite unprintable.
Hmmm I am amazed by you. you cant write 40 words without falling apart, dont worry writing is overrated as evidenced by my own pathetic attempt. you can type away till the cows come home I adore you.….you should be writing for profit have you considered a career in journalism. just a sympathetic word or two from you will be enough to make me happy……..god only knows i couldn’t manage like you do.
There now, that is a much nicer comment.
Now on to some happier stuff. My friend Robin took some photos of my work and I have added a ceramic gallery to my blog as well. The photos are all thumbnails and you can click on them to make them a bit larger. The images are only a small selection of my work and I will be adding to the gallery as I find the time to photograph any new work.
You might remember that I was having an exhibition at the Lady Franklin Gallery in October. Unfortunately I had to cancel that in June because I just didn’t have the energy to think about an exhibition at that point in time. I have been invited to take part in a group exhibiton tentatively planned for November.Yay. So I have enough work lined up to keep me busy for months.
Remember the platters that I was working on last month? I have fired two of them and I am pleased with the results. They are gutsy pieces with a raw energy that make me feel a tiny bit hopeful.
These handbuilt platters allow me the freedom to just chuck some clay around and have some fun as well as giving me a large surface area to experiment with a range of different glazes. If you want to know what any of the glazes are, or how I got that interesting crawling just ask me in the comment section and I will share the recipes.
I will finish up with a piece I made for my Mother. Mum loved this little vase and it will now be my inspiration for a series of its own.
Hi all. It’s Veronica here, guest posting for Mum. Or more correctly, copy/pasting my recent post into her blog so that this info is over here too.
*****
It’s EDS awareness month, which I am doubting is taken seriously enough in Australia. Goodness knows that doctors everywhere seem to be hideously undereducated about EDS.
We are not freaks. Not all of us can contort ourselves into a tiny little package, nor does ’skin involvement’ necessarily mean that we can stretch our skin great amounts. My skin involvement is simply a bunch of stretchmarks showing up for no reason at all and getting worse, despite me not gaining any weight, the worst of them are at the back of my knees. I injure easily, take forever to heal and my scars stay purple for ages, before turning silver and widening/raising (there is a medical word here that I have forgotten). Also, you can generally find bruises all over me, even if I haven’t done anything to myself. My most recent ones were on the back of my hand (seriously, wtf?) and an orange sized one on the back of my calf. I’m also stretchy in my skin, but with everything else, it seems like nothing much. Sigh
Most of us don’t even realise we are different when our fingers bend back further and our elbows hyper-extend. I showed my brother a photo album of EDS photos the other day, only to have him reply ‘What’s so special about that? And that? And that one?’ Well nothing, IF YOU HAVE EDS. If you don’t, you’re left looking at the flexi people and thinking, ‘that looks like it hurts.’
I think one of the most common misconceptions about EDS is that our dislocations don’t hurt. Unfortunately, our dislocations DO hurt just as much as a sport/injury induced dislocation that you might have suffered. Even more unfortunately, our dislocations happen more easily and more often that normal people. It’s just the way it goes.
There is a huge range of abilities within the same EDS spectrum. Some people are only very mildly affected, while others may experience worse symptoms and be unable to do everyday things.
I suppose that it makes sense that I am having a crash* in the middle of EDS awareness month. What better way to make everyone aware than feeling like shit for a while? Not a very pleasant way, unfortunately.
Oh well. I do know that a bunch of Tasmanian doctors are getting a crash course in EDS management simply because of my diagnosis. Like BendyGirl said, if me getting a diagnosis helps just one other person going through what I’m going through, then it’s worth it. It sucks, but it sucks more to be told it’s all in your head.
To find out more about EDS and HMS (Hypermobility Syndrome), you can visit here or here.
*A crash generally happens when I’ve been pushing myself too hard. Getting over one pre children used to leave me in bed for a week, just sleeping and resting. Post children is a slightly different matter, as bed rest is something hard to come by. I reckon this crash is just caused by 4+ months of sleepless nights catching up with me (late pregnancy is not conducive to sleeping through the night any more than having a newborn baby) and keeping the household running/fed/clean(ish).
