My grand son, Isaac gave me a kiss yesterday. This might not seem like a very big deal to most people, but to me it was one of those golden moments, where I was left with the taste of strawberry lollypops on my lips and love in my heart.

This was my very first proper kiss, willingly given and I will store this memory up and savour it.

Isaac is 33 months old and he has Autism. Isaac does not like to be touched.

When I visit, he will eventually come and sit next to me on the couch but if I go to stroke his hair or touch his hand he pulls away from me. So we sit side by side and talk of small things.

My grand daughter, Amy on the other hand launches herself at me and sits on my lap and chatters incessantly about things that matter to a five year old. Her dragon fly mind, flits from subject to subject and I relate very strongly to this child.

I look at Amy’s sensory seeking behaviours and I see myself mirrored there, I like to touch things to see how they feel. I like to occasionally touch people as I am talking to them as it gives me a better sense of who they are. I like to feel the world breathing with me.

Quite by chance I had bumped into my daughter Veronica at a shopping centre, as she was getting ready to leave, Amy gave me a big hug and a kiss, I looked at Isaac and said, “C’mon Isaac give Nanny a kiss goodbye”

Isaac actually walked over to me, raised his little face to mine and gave me a proper kiss right on the lips.

A proper kiss.

On the lips.

It was sweet.

As he raised his face to mine everything slowed down, there was only this little boy who I love with all my heart and I,

In that moment, just for that split second it was only the two of us. I gently kissed my grandson and Isaac kissed me in return.

I will savour the memory of this kiss as I reckon it will have to do me for a while.

Now my lovelies that I have shared my joy, I must finish packing my bags and head to the airport.

I am attending the problogger event in Melbourne tomorrow and if you are there and want to say hello I will be the one floating two inches above the floor with my memory full of strawberry kisses.

That is what I reckon this post will be, all muddled up without a coherent train of thought running through it to pull it all together. But that is life. Life is messy and muddled and I just make it up as I go along and hope like hell I am doing the right thing.

I started to write this in response to my daughter Veronica’s post, about her grief and her sense of aloneness in all she is facing at the moment.

I had a long talk with Veronica yesterday, as we do nearly everyday. She prepared me for the content of post that she had written knowing that her sadness would make me cry. My parting words to her in her aloneness was the only truth that I could give, that at the end of the day she is “The Mother” and she just has to suck it up and get on with her life as best she can.

The only comment I could leave her after I had read her words was, to just keep on putting one foot in front of the other.

Because that is all we can do, just keep on plodding along.

The Ehlers Danlos Syndrome makes everything doubly hard for my little girl and then you throw a sprinkle of Aspergers into the mix and I don’t see any easy days in my daughter’s future at all.

So there is grief on top of grief.

Grief for all that we have lost with the early death of my Mother. Mum was an energetic whirlwind of a woman. A 5 foot tall bundle of contagious, hands on practical energy. Her catch cry was, “Lets Go!” and go we all did, swept along in the wake of Mum’s enthusiasm for life.

Grief for the loss of easy children, with simple answers for Veronica. We all want our children to be happy and sometimes the despair I hear in Veronica’s voice is enough to bring me undone. Again.

There is also Anger, frustration and  a good serving of stress to top it all off.

I am slow to get angry but when I do my anger is like a flash fire, hot and fierce and all consuming. I am an Aquarian born in the year of the horse and my Chinese element is fire and apparently for those that know these things I am true to my signs.

I can feel my anger building. Anger with those that make my daughter’s life hard. Anger with members of “The Spouses” family who wont believe that EDS is real. And a general delayed anger that my Mother is dead because everything would be a hell of a lot easier with her here to help.

I believe in truth and for those medical professionals and assorted bystanders that don’t want to hear my truth, your denial isnt going to stop me saying the words and fighting for the best outcomes for my family.

Ehlers Danlos Syndrome isnt an easy illness to deal with. Ehlers Danlos Syndrome is pretty much invisible and those with EDS are used to being in pain, or feeling sick all of the time so they don’t make a fuss. But as the mother of two EDSy children and an EDSy spouse it is very hard for me to watch and feel helpless in the face of their illness. So I do the only thing that I know how to do and that is support my immediate family and  try to educate other people about EDS.

I simply do not have any emotional energy to spare for those people who are unwilling to make an effort to understand what my family are going through on a daily basis.

The Spouse can not stand for longer than five minutes at a time without feeling like his hips are going to fall out and his back is on fire. He put up with this pain for a long time and was starting to spend longer and longer in bed because it was the only place he could be pain free. Until I dragged him, unwillingly I might add to our family GP and organised for him to have better pain relief in the form of slow release morphine patches. The Spouse has your typical Aussie blokes attitude to doctors and wont go to the doctor unless I push it. The Spouse’s remedy for his pain is to just drink more beer and hope it goes away enough so that he can sleep.

For a man with a very strong work ethic it is very frustrating for him to be limited in what he can do and that frustration often presents as aggression.I don’t take any notice of the grumpy old bugger when he is having a whinge and his anger whilst loud, is mostly directed at himself.

The parts of your brain that deal with pain are right next to the parts of your brain that deal with anxiety. So pain and anxiety go hand in hand. The Spouse hasn’t been to any of my exhibitions as he doesn’t like crowds. He wont go into the city and the only time he willingly leaves the house is to go fishing.

Both my children have varying levels of anxiety as well, this is all part and parcel of the Ehlers Danlos Syndrome.I am hoping that the psychologists at the pain clinic at the hospital can help Veronica without having medication that turns her into a zombie.

As I wrote earlier when you throw Aspergers syndrome as well as Coeliacs into the mix it makes for a very challenging headpace. I am missing my mother dreadfully and I worry about my grand children a lot. So I throw myself into my work and join another committee, set up ceramic blogs and facebook pages so that I don’t have to think too deeply about the future.

And then my daughter Veronica will patiently correct me again. I will feel slightly guilty that by not immediately understanding all the minutae of Amy’s Aspergers and Isaac’s developing issues I will have put more pressure on my girl.

But that is life and at the end of the day no matter how frustrating my responses to Veronica’s statements are. I am her mother and she loves me.  I will just pretend that I don’t hear the exasperated sigh in her voice as I try and find strategies to help me cope.Whilst I can empathise, I can’t really relate to the difficulties that Veronica is facing parenting Amy, as Veronica was an exceedingly easy child to parent herself and time softens the memories of the hard bits.

I am on a bit of a journey at the moment to readjust my thinking in order to help my grandchildren live in this society of ours with the minimum amount of stress. By stress I mean stress to the children not anyone else.

I was reading this post, “Portraits of Autism#10″ and it helped to adjust my thinking slightly again. And that is what is important here, that I adjust my thinking and expectations.

As a society we expect our children to be perfectly behaved little robots that should be seen and not heard. Children shouldnt disrupt our lives too much, as they grow into perfect young adults who move out and have successful lives of their own. Leaving us to pick up the threads of our own perfect lives with plenty of time to do all the stuff we put on hold when they were small and needy and unrobotic.

Life isn’t like the magazines would have us believe though. Life is messy and ugly, chaotic and beautiful and perfect is incredibly boring. Blogs like Casdok’s, Mother of Shrek help me to re-adjust my thinking. New friends like Marita help me with strategies and Veronica patiently tells me the same stuff over and over until I have grasped some of the complex realities of her life.

I have no idea how I am going to help my grandchildren cope in this difficult world they inhabit. Like most things I do in this life of mine, I am just making it up as I go along.

Hello out there my lovelies. I am sitting here perched on the edge of the couch tapping away at Mum’s laptop, I am trying to get a rhythm together to write something about the past week but it is hard when I am not at my desk. Confused? I will try and explain but before I do, if one more person smugly tells me to get a Mac just remember that I know where the zombies lurk, and I will give them your address.

I have needed a new desktop for a long time now, the one I was using was ex council stock that Mum and I bought on tender three or so years ago and it was very very slow. The spouse’s views on computers are unprintable, he sees them as an extravagant waste of time and money. Where as I, on the other hand plan to take over the world via the internet and so I need a new computer dammit.

After lots of angst serious thinking both Vonnie and I decided to not make the change to Macs. As much as we lusted after a Mac we just couldn’t afford them as well as shiny new lenses for our cameras.

And now my brand new computer is broken aaargh and before you say anything, remember the zombies.

I am going to take it back into the shop today and hopefully they will just replace it.

But, my lovelies the computer is the least of my worries, today is the appointment with the head honcho at the paediatric unit of the hospital. The fact that the most senior doctor there wants to discuss Amy and Isaac’s blood test results scares me witless. Veronica wrote about it here if you are interested.

I had been hoping to do some work over the Easter break but time is just racing away from me. I will update this post when I get home from the hospital this afternoon. Fingers crossed it isn’t horrible news.

Updated: The paediatric appointment was just a formality, there is nothing to worry about at all. I am sure Vonnie will write about it soon. Thank you very much for your kind comments. I am sorry if I worried you.

The lovely people at Harvey Norman replaced my computer. So now I will be able to continue on with my plans for world domination muawahahaha…….

There are two photos of an orb spider in this week’s winners. This spider lives just outside my front door. Every night her web gets totally destroyed by large moths and every night she repairs her web. I took these photos with a flash at night and I like how they have turned out. Once again if you scroll past her really fast you might not notice her at all… cheers  Kim.

ps. there is a photo of a baby in here somewhere as well…

I don’t think I really need to say anything at all..