The missing doesnt stop.

by frogpondsrock on April 7, 2011

in Autism,Family,Grief,Mona

Some days I miss my mother so much that even writing down the words make my eyes prickle and fill with tears.

There is a heap of stuff I am trying to deal with. On their own, these things don’t have much weight but tie them all together and it feels like I am swimming through mud.

My grand son was officially diagnosed with Autism yesterday. Systems will be put into place for Isaac, autistic specific playgroups will be found and the experts will step in and try to help as best they can.

This is good. This also breaks my heart.

I am trying to write an email to a physiotherapist to tell him that “The Spouse doesn’t want to continue with his appointment because it is obvious the Physio knows nothing about Ehlers Danlos Syndrome and in The Spouse’s words is “completely fucking useless”¬† How do I say that? How do I say “Listen son, you need to bloody well do a bit of research on EDS before we go any further”.

I worry that he will break my husband or my daughter with inappropriate exercises designed for non-bendy people and I also wonder if I can be bothered dealing with his air of professional superiority because he is a trained medical professional you know. ( insert sarcasm font)

I worry that my grand daughter who has an unofficial diagnosis of Aspergers as well as EDS will fall through the cracks. I worry that the paediatrician in charge of her care is another one who knows absolutely nothing about EDS and is more than happy to think about his golf handicap instead of my grand daughters care.

My son is living in town with his friend and I worry that he will decide to sleep all day, rather than go to his classes. My mantra when the children were growing up was, “your choices, your consequences”.

It is hard not to want to live their lives for them.

I want to shake my son and say look, look at all the mistakes I made, don’t do it, don’t make my mistakes. All I can do now is watch and hope and wish that mum was here to gently laugh at me.

I am watching a very clever liar, weave a complicated web of deceit and I am in two minds whether to call them out and wear the fall out or just wait and see what happens.

I went to Mona yesterday and once again I was drawn to this fabulous sculpture PXIII by Belgian artist Berlinde de Bruyckere


This sculpture makes my soul sing. The artist says this work is about loneliness and I can relate to that.

I think that I am becoming invisible, the older that I get.

I interacted with Australian artist Greg Taylor’s art work titled¬† My Beautiful Chair, featuring a couch, a lamp, a rug and Philip Nitschke’s suicide machine. As I watched the prompts on the computer I thought about my Mum and how peaceful her death was. I remembered what it felt like to stroke my mother’s dead hands and the beautiful ivory colour of her skin.

 

 

 

 

 

 

 

 

 

 

 

 

 

It was a very introspective three minutes.

 

 

 

{ 32 comments }

sharon April 7, 2011 at 10:43 am

And still the world turns and we can only continue to do our best with what we have. It does hurt, but you have to keep picking yourself up and get on with whatever life throws at you. The alternative is not to be recommended my lovely ;-)

xox

frogpondsrock April 7, 2011 at 2:20 pm

I know Sharon, I know. Just keep swimming, just keep swimming.

Liz April 7, 2011 at 11:37 am

Sometimes all we can do is to be compassionate to our vulnerable selves, breathe in and out, and yes, just do the best we can with what we have. Remember that you are loved, you are worthy, and you are allowed to just be. And if you so choose you can tell that physiotherapist anything you want!

frogpondsrock April 7, 2011 at 2:20 pm

Yes.

Happy Elf Mom April 7, 2011 at 12:04 pm

Odd! One of my first thoughts after reading the diagnosis post a bit ago was wondering what your Mum would think. I really wondered but then I thought what a disjointed thought that really was. I wonder what she would say to you guys or if she would somehow just being there allay those fears. I remember that story about your Mum cracking up in the doctor’s offices when things were so gloomy and I think somehow, someway she would see something bright here.

I cannot say what I mean but hopefully my “picture” is getting across. My word sculpture. :)

frogpondsrock April 7, 2011 at 2:22 pm

Your Word Sculpture is perfect my friend. Mum would be full of proactive advice and contagious energy. Mum was very hands on. She would have made things better.

amandab April 7, 2011 at 12:31 pm

You could never be invisible. xx

Our mistakes and regrets define us as much as our triumphs. If he makes the mistakes it’s what he needs to become the person he was supposed to. And karma will have a way of kicking the liar in the teeth, so let karma take the fall out :)

frogpondsrock April 7, 2011 at 6:33 pm

Probably something to do with the bright purple hair Amanda :)

Ali April 7, 2011 at 1:14 pm

Oh Kim. There is so much, just so much. We all have these times in our lives when it just feels like there is thing after thing after thing heaped upon us. At least I hope we all have them or wtf, universe?

One thing you wrote that struck me. about becoming invisible. I wonder, too, if that’s something we all feel. When I think of you I think of a ball of energy growing brighter, stronger, more complex, ever increasing layers of colour and light. To me you seem to be becoming a brighter, stronger you all the time. I’m sorry that’s not how it feels on the inside.

Oh, by the way, good physios are few and far between. They are mostly arsehats. They have learned only about how a “normal” body “should” function and seek to apply those rules to those of us whose bodies work differently. No matter how many times I’ve explained to them that “no, that’s not how my body works” it changes nothing in their eyes. There seems to be a culture of superiority amongst them. I say write a REALLY frank and honest letter to the physio so that he can have a little dose of reality

frogpondsrock April 7, 2011 at 6:36 pm

Ah you have made me smile Ali. I will email the physio and explain my misgivings and then see what happens.

Donna @ NappyDaze April 7, 2011 at 2:18 pm

Your pain is so tangible here, as well as your obvious love of your family. I often dedicate far too much time to wanting to cosset up the ones I adore to keep them safe and imagine never having to farewell forever those we love…. Oh to live in an ideal world…

I wish you all some peace on the rocky path ahead and hope your Mum’s spirit shines through to ease some of the pain x

frogpondsrock April 7, 2011 at 6:38 pm

I was having a bad morning Donna. I was very close to my Mum, we all were. I went up to my studio and did some work and now I am a bit more balanced.

pixie April 7, 2011 at 6:37 pm

all the *stuff* added together can be very debilitating………….I know..am dealing with stuff myself ATM.

I found myself wanting my mum the other night……..she has been gone for over 27yrs………so I get it….

gentle hugs

frogpondsrock April 7, 2011 at 6:38 pm

Thanks Pixie.

river April 7, 2011 at 7:54 pm

Hugs, Kim. And speak to the physio. Direct him to Veronica’s and your posts on EDS if necessary.

Kim (frogpondsrock) April 7, 2011 at 8:29 pm

You know River, I can hear your voice and see your smile here in the comments. Thanks for the hug.

Barbara April 7, 2011 at 10:44 pm

I agree with some of the other comments. I think you should say something (or write a letter, possibly a better idea) to the physio – the worst that can happen is that he’ll refuse to treat The Spouse – that’s got to be better than him breaking The Spouse hasn’t it?

I wish there was something I could say to make it better – but I don’t think there is really.

I definitely don’t think of you as invisible – you, your personality are/is amazing – larger than life even through a screen.

xxx

Kakka April 7, 2011 at 11:28 pm

Thanks Kim, you post was just what I needed. I love my Mum, but have been withdrawing a little as I was feeling overwhelmed of late. You have just reminded me that before I know it she may be gone and then what do I have left but her absence.

I hope you grandchildren get the help they need. And what you feel like saying to the physio – just say it – sometimes they need to hear.

xxx

Meegs April 8, 2011 at 8:59 am

Oh Honey….I know exactly what you mean…am struggling with my own offspring right now and was thinking just the other night how I wished Nan was here to help me along too….I dont think I will ever stop feeling that empty little hole in my stomach everytime I think of her (which is often). Her words to me were…”everything looks better the next day” xxxx

Kellie April 8, 2011 at 9:14 am

Thinking of you. I really wish I had the words that could help make things better for you, but I don’t. Unfortunately.
Take care of yourself. And keep up that art – it really is the best therapy.
PS. I haven’t been to MONA yet, but have had a good look through the book. Incredible stuff! Although, not all of it was in my taste. LOL!

kim (frog ponds rock) April 8, 2011 at 9:28 am

Thanks Kellie, MONA is fabulous. My eyes just skip over the stuff I don’t like :) and there is more in there to like than to not. But I wouldn’t take younger kids in there as there is some graphic stuff designed to shock. But overall it is a fantastic fantastic experience and I am totally in love with the place.

As for making me feel better, the comments do that :) I was having a bad morning and it is Mum’s birthday on the 11th. So I am just a bit flat. On the other hand next Friday at the ART FORUM at the uni Julie -Anne Long is talking about her performance piece The invisibility project and I am really looking forward to hearing her talk.

Jess April 8, 2011 at 11:20 am

I feel like that horse today.
Aside from that, you are your best advocate. If the doc isn’t helping, keep looking. A PhD doesn’t a doctor make. In fact, it’s nothing more than a few letters after a name. In dealing with my kids I’ve gone through legions of doctors. Some get it, many don’t. You will never regret finding a new one, but you will regret sticking with one you don’t have faith in. It’s not personal, it’s business.

Hopefully tomorrow brings some sun.

suburp April 8, 2011 at 1:24 pm

sometimes it all becomes just too much and you feel that you sit in a deep pit of angst with no way out. :(
i admire how you can relate to art in that context. i feel a bit stuck in a mundane environment when it comes to dealing or expressing my the weight on my own soul.

Kelley @ Magnetoboldtoo April 8, 2011 at 8:52 pm

This morning I was making my coffee and all of a sudden I thought of my nanna.

My beautiful nanna whose hand I held while she took her last breath.

And I realised that my life mirrors hers in so many ways and I wish she was here to talk me off a cliff every now and then.

So I understand that my love. xx

Watershedd April 8, 2011 at 9:06 pm

You can call me strange, perhaps with my priorities in the wrong place, but eight years on, I still miss my hound the way you miss your Mum. Oh dear, I choking up even now. I’m fortunate to still have my parents. I expect that some day, I will miss them like this too.

Isaac’s diagnosis opens doors. It will all be fine. You just have a little person in your lives who sees the world from a different perspective. The GOFA used to do art with a whole heap of autistic kids. They have a special place in this heart and he found many were quite adept at creating human or animals forms on canvas or in clay. He loved those days. I think it’s time he went and played with them again. Thanks for reminding me.

Marie April 8, 2011 at 9:35 pm

I am deeply touched by your struggles and your feeling of invisibility. But I have to say that what also shines through like a beacon is your underlying love and determination for your nearest and dearest. And your eye for beauty, for light and shadow and seeing shades of grey – both in your art and in life. I wish you strength to get through the tough times ahead – I wish I had something more practical to offer.

(and yes, I felt like that horse many times.)

Matthew April 8, 2011 at 10:36 pm

Your husband and daughter are very sensible people. As for your son, well I slept through lectures at times and I still turned out Ok. :)

Kelly April 9, 2011 at 1:18 am

I am really sorry to hear all of this. At least the issues with your grandson have been confirmed, though it can be stressful thinking about the future under such circumstances. I will be commenting on Veronica’s post as well. I think too often so many out there just don’t appreciate good wellbeing. I wish you all the best of luck. :)

On a side note, just came back today. Great design! :D

Patti April 9, 2011 at 1:54 am

So sorry to hear about your family’s troubles. I can so relate to wanting to live the kids’ lives for them, to protect them from their own mistakes. I usually envision horrible outcomes based on what’s going on right now but I try to remind myself that the future won’t be all bad just because it looks that way today. Not sure if missing Mom ever goes away … it’s been 7 years for me. Life is hard sometimes and that’s when her absence shines way too bright. Sending you {hugs}.

Achelois April 9, 2011 at 12:37 pm

I have so much to say but my hands aren’t working.

Suffice to say that we are so very very alike. Apart from the fact that I am not a talented artist.

I hear you, really hear you.

It will be complicated but at the same time, its better that early diagnosis happens early intervention has shown to be very very successful.

Mail me please to say whether the Physio has had that letter. I so get what your spouse says. Understand wholly.

Love you my friend.
xoxoxo

Mrs. Oh April 9, 2011 at 1:52 pm

Funny how we are a world away and yet so very similar. I would send chocolate but your post made me need some too! Hugs and Love and all the jazz!

Cherie April 9, 2011 at 5:14 pm

Oh Kim I probably know you least of all the wonderful people here so I hope you don’t mine me adding my two bobs worth? The suggestions you’re getting are brilliant. You’re a much loved, wonderful woman!
I’ve never met one good physio, my 2008 physio battle knock your sox off. They’re a bunch of self servings FW’s … writing what you have to say is an excellent idea. Keeps your blood pressure and your demeanor under control! Slam it down in front of the nob and then succinctly T.I.F.I. in other words tell im, fuck im !!! I hereby give you my TIFI gem! I even once had a kitty cat I names Tifi. It’s stood me in good stead to all who’ve attempted to disrupt this precious life !
Please don’t allow them. I learnt the hard way you can’t fight other people’s battles … you have to let go a smidge Kim otherwise you’ll go under!
Always be there, but let them have their own experiences, no matter what, knowing you’ll always be there if and when needed.
TIFI and purple hair sound like a perfect combination, what a force ;)

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