Sadness

When Magic Kisses and Wiggles Bandaids Don’t Work Anymore.

by frogpondsrock on May 3, 2012

in David,Ehlers Danlos Syndrome,Family,Sadness

There was a time when a magic kiss fixed everything and what magic kisses wouldn’t fix, a wiggles band-aid certainly could. It is a sad day in a mothers life, when she realises that the one sure fire cure in her arsenal, just doesn’t work any more. That the magic has faded from her kisses and that wiggles band aids are made for little chubby fingers, not almost man hands.

I don’t often think of myself as the mother of disabled children, I certainly don’t think of my husband and children as disabled.When I think of disabled children, I think of the stereotypical image of a brain damaged child in a motorised wheelchair.

But I am, the mother of disabled children. My children are broken, betrayed by their broken gene and dislocating joints.

In my broken family Veronica and The Spouse are two of a kind, they both have a strong work ethic and they both treat their disabilities with a nonchalant disdain. They battle furiously on, until they collapse in their various heaps, gathering their breath, marshaling their strength and poking their respective ribs, shoulders and hips back into place.

David and I are of the same ilk, we both coast along doing just enough to pass, whilst also giving of ourselves to all that need a hand. We are the ones with the ready ear and the solutions, the broken naturally gravitate towards us. Or more especially the broken gravitate to my son. I learned a long time ago how to ration myself so that the psychic junkies didn’t drain me dry. This is a skill my son needs to master, but it is also a skill that only comes with growing up.

My son, my youngest child David, will be eighteen next month and somedays he is so broken it hurts me to watch. It is hard enough navigating the minefield of young adulthood with out having to deal with a broken body as well. I often wonder if I am in some sort of denial about the extent of David’s Ehlers Danlos or if it is just that I am so used to my husband and daughter being broken that I don’t think too deeply about it anymore.

My refrain in the mornings as David complains of feeling sick has always been, “You will be fine once you get to school.” As I pushed him into the shower, into the car, onto the school bus, out into his life.

Pushing him to push through himself.

David is in bed as I write this. He is having his first Ehlers Danlos Crash, he has pushed himself for so long that his body has pushed back and said STOP. I have a thick lamb stew on the stove and I am letting my son sleep. We have a Doctors appointment on Monday and then I will begin to push again. This time I will be pushing the Doctors to do what I want. I fought for seven years to find out what was wrong with my girl. Veronica has cleared the path for her father and her brother and armed with the knowledge and the support of my daughter I will try and make things a bit easier this year for my son.

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Thank Goodness for Dory

by frogpondsrock on May 17, 2011

in blogging,David,headfuck,Love and Loss,Sadness

Because if it wasn’t for her I would have stopped swimming long ago.

This blog is only a slice of my life, it is a tiny snippet of how things are. I use the blog to get the words out of my head. I write out the sad, press publish and then walk away. The simple act of writing out how I feel, helps me to make sense of my emotions so that my head doesn’t explode with the weight of the words circling like so many hungry buzzards inside my mind.

I think hungry buzzards as a metaphor was a bit over the top but the image of words with wings flying in lazy circles is making me smile.

I like this internet connection I have with you. I like the fact that Jess can hear the stones whisper, that Achelois completely gets where I am coming from, Janet sends me dragonfly notebooks and youtube clips, April sends me chocolate and Christmas ornaments that remind her of dragon eggs.

There are far too many of you to list but you all help me and I am grateful.

But there is a dark side to the internet community as well. A darker side that is giving me the shits. Trolls are not uncommon, plagiarism is rife, a holier than thou attitude is starting to come to the fore, cronyism is becoming more obvious and mini dicatorships are springing up left right and centre.

And now the Australian mummybloggers have a manifesto. I will not be signing the bloggers manifesto. I will not be told what to do. I will especially not be told what to do in such simplistic terms, as if I am a child tottering about within the interwebs being told to “play nicely now.”

I like my manifestos to have a little more substance, to be a little heavier in weight, I like a manifesto that makes me think. My personal favourite is A Humanist Manifesto. Then there is the Dada manifesto, or the Communist manifesto or even the SCUM manifesto to give my brain an early morning work out.

But this post isn’t about blogging this post is about Dory whispering to me, to just keep swimming.

I took my teenage son to the doctor yesterday with the sole intention of getting him a prescription for anti depressants.

No mother wants to hear their child tell them that there isn’t any point in living because life is just too fucking hard.

The pressures of a new school environment where every bogan bully wants to fight the big guy in order to prove they don’t have small dicks. The constant pain from his Ehlers Danlos syndrome. The ongoing grief and loss from the death of his confidante and main support person, his Nan. All these things combined with the normal adolescent pressures were enough to send my son hurtling into a well of darkness and despair.

Our family GP could tell I meant business and he wrote out a prescription for David. He talked to David about lifestyle choices and the need for exercise and sunshine.

He also in one sentence totally dismissed David’s Ehlers Danlos Syndrome as being a contributing factor towards his depression.

For Fucks Sake.

This is the reality of living with a rare genetic condition in Tasmania.

Sometimes it is all just too hard for me as well.

But I am an adult, with 45 years of life experience behind me. I know that nothing is ever as hopeless as it first looks and I also have the clay which grounds me and gives me an outlet for my rage.

Dear internet, here are the words that are in my head.

I give them to you, so that they stop flying around my mind.

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When the stones whisper their secrets to you.

by frogpondsrock on May 12, 2011

in Grief,headfuck,Sadness,thinking out loud

Your friends either suggest lithium or nod their heads and smile.

This is The Mountain that is the backdrop to the city of Hobart. I grew up under the shadow of The Mountain and one of the hardest things about moving inland was not being able to see the changing moods of The Mountain every day.

I haven’t been up the mountain by myself for a long time. As a young teenager I used to ride my horse all over the mountain, from Lenah Valley to Fern tree and back again. As an older teenager we used to drive up the mountain and light cooking fires with the wood provided in the huts. We would drink cheap wine and try to count the lights of the city below, before turning our attentions to more serious teenage concerns.

I have been feeling restless lately with a wistful yearning in my soul for something. The practical side of my nature ignores the fanciful and mockingly whispers that a midlife crisis isn’t a good look. Whilst a small part of me feels like crying out, “Can you see me? Can you tell me that I am not invisible?” I push the thought of any sort of crisis away and ponder instead what it means to be 45 and overweight in a society that worships at the altar of anorexic youth.

I am teetering here on the precipice of my next great adventure and as I spread my wings ready to leap, I am filled with an unbearable sadness that my mother isn’t here to help me on my way.

Mum would tell me that it is normal to feel like this at 45. That it is normal to have quiet moments where you feel old and ugly, withered and useless. That the drumming I hear in my ears is my biological clock banging away erratically and that I need to get my shit together and just ride it out and to remember that I am only invisible if I choose to be.

My grief has settled into a cycle, in tune with my own lunar cycle. The grumpy irritability of PMS has been mostly replaced by a week of tears and longing and introspection,which is annoying as I would much rather slam a door in anger and be done with the shitty mood, than reach for a box of tissues and cry like a child for my mother.

On a whim I drove up the mountain and had a good talk with the stones. I let their ancient energy wash over me and I opened my mind to who I am and what I do.

The stones told me that it is okay to feel old as long as I don’t act old. To remember who I am and where I come from and to not lose sight of where I am going. To remember the ley lines and to feel the power of the earth through my bare toes. I think that is half the problem, I have been wearing shoes for too much of this year and I am losing touch with that energy that only comes from walking barefoot in the garden.

I bought a small stone down from the mountain with me and I think it will make nice marks in the clay. I met a twitter friend the other day who gave me some bones to use as tools, in return I am going to make her a ceramic altar to hold her offerings from the sea.

This feels good.

When I just do what I am supposed to do without thinking too deeply, when I let the clay guide me and I rest in that sweet spot, that silent intuitive space, the work just flows and I feel complete.

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There is too much silence

by frogpondsrock on February 1, 2011

in David,headfuck,Mona,Sadness

I wonder if one of the reasons for the reluctance to talk to our young people about suicide is the mistaken belief that we might give them ideas. As if by starting a conversation about suicide we might inadvertently plant the seed of death in their heads.

On Monday evening I went to bed early as it had been a long week and I was knackered but there is never any true rest in my house whilst my teenager is awake as he bangs doors, clatters dishes and clomps about the house late at night in an eternal quest for food and facebook.

There wasn’t to be any rest for me that evening either as one of David’s friends had put a suicidal status update on his facebook page. I lay awake in bed listening to my son trying to contact his friend, X on the telephone, hearing my sons voice rising in fear as he demanded that X pick up the god damn phone.

After about 15 minutes of distraught phone calls and frantic inboxing with no response from X, I ended up in the car in my nightie driving David down the road to X’s house.

I was so tired I was a bit trippy and the memory of my son frantically ringing and ringing X’s mobile has become less real now. Eventually when we were about half way there X’s brother answered the phone telling Dave he had come home from work and found the boy passed out in his bed covered in blood from multiple slashes to his arm and wrist.

Shit.

Luckily the cuts were only superficial and didn’t require stitches.

David stayed with X that night and the next and on Australia day I picked them up and drove them down to the Mona museum.

I don’t know what I was hoping to achieve by taking the boys to Mona. I know that I was hoping that the museum would work her magic on X. That he would see that there is a whole other world of beauty and art and expression out there.

That there is never only one path.

That it is okay to be different.

That we are all different.

Maybe I was also a little bit starstruck by the sheer amazingness of the Mona museum and I know I wanted the boys to share my joy because in hindsight Mona really isn’t the place to take a confused and sensitive 16 year old. X was totally freaked out by the place. The darkness of the rooms made him jumpy and video art works that my eyes had only skipped over because they weren’t my cup of tea drew the boys in and they were repulsed by them. X was horrified by the wall of porcelain vaginas and declared Mona to be totally creepy.The boys didn’t even glance at Snake as I took them to see the fat car hoping that the sensual curves of the car and the brightness of the red bodywork would at least be a positive experience for them and it was.

As we drove away from the museum towards the city park where they like to hang out with their friends, we had a brief discussion about what is art and what isn’t. I had forgotten the black and white certainty of being sixteen, of a sixteen year old perspective that art has to be beautiful in order to be called art and I worried if I had done more harm than good.

On the Thursday morning I took X into a youth counselling place, I had previously spoken to them about X and they had prepared a packet of pamphletts and such for him. I waited in the car whilst Dave and X walked into the building and I knew that I had done all I could for this boy.

It is never easy when it is someone elses child.

Years ago an old woman held my toddlers hands in hers and told me, this boy is going to be a healer. Over a decade and a half later I watch as my child gathers the broken to him, as the broken are drawn to him and I worry.

It is never easy when it is your own child either.

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