Fractured Fairytales

A Legacy.

2009-08-18T06:21:00.000-07:00

I think when a person contemplates their death they hope that they will be remembered for something good. That people will speak of them in a favorable light long after the sun stops shining.

I used to think that I wanted to be remembered for being a good person, for for always doing the right thing by people. Not bad aspirations, I hear you say, but I think just recently the thing I want to be remembered for is not those things. Or at least not only for those things.

I want to be remembered for something else. My Legacy to this Earth. I am leaving something that I know will bring so much happiness to so many people. It's more precious than the finest jewels, it cannot be bought, bartered for or traded.

The Legacy I am leaving this Earth with, is quite simply my greatest achievement.

My 3 wonderful children. Simply by their presence they make this world a better place.

My personal love affair.

2009-06-18T03:38:00.000-07:00

[IMG]http://i589.photobucket.com/albums/ss333/Eddtv/myspace/EiffelTower.jpg[/IMG]

I can't begin to tell you about my obsession with this tower. It probably borders on abnormal - but I don't care.

How can you fall in love with a building you've never seen?

Easy. When you are an impressionable 6 year old and you see amovie with this beautiful tower and the film shows this couple falling in love and the nam proposing to the woman underneath the tower..........well there you have it. I've loved this building since i was 6 years old and I'm now 40.

I have trinkets, postcards, paintings, charms. I even wear a silver Eiffel Tower around my neck.

I'm yet to actually visit this building in person - but i'm sure it's everything I dream of and more.

A Mother's Day reflection

2009-05-10T07:19:00.000-07:00

On this special day - I will turn to the words of another:-

To You, My Sisters
By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

*Dedicated to all the mother's of children who have special needs - especially those beautiful girls that live on "The Island"

They turn my Holland into a little bit of Italy everyday. I love them.

Just when I was getting the hang of it all.....

2009-04-27T05:59:00.000-07:00

Unfortunate incident last week.

I came down with Gastro. I didn't know it was gastro and toddled off to see my doctor.

She wasn't happy that I had cancelled my appointment with the Gastroenterologist (and the Upper GI scope).

I explained to her that for me, having a diagnosis of Coelic isn't a death sentence. It's a diet modification and therefore I was happy to accept my diagnosis based on the blood tests alone. And let's face it - eating GF is pretty easy. (It's the whole Gluten in make-up deal I am still coming to terms with). To also be frank - I really didn't feel like having a biopsy just to see "what's going on".

So anyway.....I digress......doctor asks me how the GF diet is going. I tell her it's pretty easy (except when you eat out and you put your diet & trust in someone elses hands). It's been almost 6 weeks, but to be honest I don't feel any better. Fatter maybe, but definitely not better.

She wants to run some blood tests. Great! I've just paid for the last ones.

So I figure I will ask her to do a specific Coelic tissue type sampling - a gene test. To have Coelic you have to carry certain genetic make-up.

So I've been tested for that, again a full blood count and B12. I went in this morning for the blood tests, got a call from the doctors surgery tonight at 8pm saying I need to go back in to see my doctor.

I'm not overly worried. Either I have Coelic or I don't. No biggie either way. I'm guessing my B12 levels are shot again.

So why can't they tell you this stuff over the phone? Instead now, I have to go in, pay for avisit and probably hear news that isn't life threatening. Life threatening results I understand - normal results I don't. And why do they insist on calling you in the evening? What's with that?

So......here's waiting. Wish me luck!

Divorce......at what price?

2009-04-26T06:31:00.000-07:00

A good friend of mine whom I have known for about 15 years came to me recently for some marital advice. A bit ironic because I'm not too good in the marriage/relationship area myself - but heck - I'm never one to turn down a chance to talk (or give advice) (sad I know!)

Having worked in the area of family law for a while, and living in a relatively small town (280,000), you get to know who are the good lawyers and who are not. I gave him the names of 4 lawyers, all of whom I know their work. Good ethical lawyers who will try to resolve the issues at hand in a reasonable amount of time. Sadly not all lawyers live by that creed - most do but as in any industry there are sharks.

He then asked me for some advice - he really hadn't been involved with lawyers at all and let's face it - most people haven't. And lawyers can be pretty scary people at first. I should know. I worked for them and I'm in a relationship with one.

So here it is:-

1. Leave emotion at the door. The more you look at your situation as a means to an end the better off (emotionally and financially) you'll be.

2. Stop trying to punish your ex. You really and truly want revenge? (you do don't do?).
Live your life well. That will be the best revenge you will ever have.

3. Do not drag your kids into the divorce. IMHO this is a form of child abuse. There's no excuse for slanging down the mother/father of your children EVER. Even the youngest of children internalises a divorce and it changes them. Ask any adult who was the product of a nasty divorce as a child what it did to their perception on relationships.

4. Be reasonable (and smart). Don't get into lengthy negotiations over stupid things like toasters, t.v's, garden settings. Let them have that old stuff and with the money you save not fighting it through your lawyers - you can go out and buy some new stuff. Don't sweat the small stuff!

5. Your lawyer is not your friend. You are paying them to give you legal advice. If you want someone to give you sympathy about the amount of time you spent planting that garden or the amount of times you sat home alone, or how this isn't fair - call a friend. Buy them dinner and pour out your woes - it's much cheaper.

6. Don't start dating. The worst time to start a new relationship is when you actually haven't finished with the old one. Believe me, you have issues (or you wouldn't be going through a divorce).

7. Don't befriend your ex on facebook/MSN/(insert networking site here). Same goes for their family. Bad move.

8. And don't slag them off on it either. Word travels.

9. Be aware that sometimes the law is not about what you can (or want) to prove. It's about getting the best possible outcome for both parties. It might seem that it isn't right or isn't fair (and sometimes it isn't) but the law is about getting the best possible outcome in what is a shitty situation.

10. Life does go on. And once you get over those first "firsts' (Easter, birthday, mother's day, father's day, Christmas) it does get easier.

oh....and here's a little divorce blog I like to read http://themarriagemaven.blogspot.com/ She's in the U.S and I'm in Australia and our laws differ somewhat - but heck if you feel like a light read - she's got some good advice.

edited to add one more thing:- Please don't punish the grandparents. Your ex might be a dweeb but his/her parents still have grandchildren that they love. And having those extra people around who love you no matter what isn't a bad thing is it?

The Low Down on Gluten free so far.

2009-04-08T20:24:00.000-07:00

Well, truth be told it isn't/hasn't been that bad.

Labeling laws in Australia are pretty good, so even for dummies like me who get confused by ingredient lists - it's usually stated on the packet in plain old english if the product is actually Gluten free, so my brain fog hasn't really affected my eating so far.

The downside for me has been the scales slowly creeping upwards. I've been assured that this is only temporary, but never the less for someone like me who has a fat phobia it has been concerning.

The rest of the family is eating GF as much as possible which helps. That's because I do the cooking and refuse to prepare numerous meals on top of everything else I have to do. The family is however still enjoying bread, crackers, sliced cheese and chocolate bars (the fact they can still do that with me glaring at them is another matter....LOL). Our snacks (except for the chocolate) are all gluten free too.

So far, I am disappointed to say I don't feel any different (except fatter). No magical wonder diet here. Like everything else in my life, it seems that anything good from this will take it's time.

The very good news is............Champagne and Red Wine are gluten free! *Cheers*

Pity party over

2009-04-05T05:34:00.000-07:00

Okay.......it's dust yourself off and get on with it day. Pity Party Day is over.

Today is a new day and a chance to start over.

I need a new direction and I don't know what or where it needs to come from.

Ready for a journey? I guess I am!

Keep Going, The Art of Perseverance.

The fact is, the sun does not always shine. Gentle breezes can grown into tornadoes. Too much rain can lead to flood, and too much sunshine causes the drought. Life is life–it is what it is. It offers no certainties, except that it will go on with you or without you. The sun will rise and set every day. Though clouds obscure your perception and you do not see it coming up and going down, it will do so nonetheless. So do the seasons follow their unerring cycle, waiting for no one or nothing. The seasons turn into years and the years into ages. Neither waiting nor caring if you join them, but never denying your choice to do so. They will go, and so much you because your journey is waiting. And in your journey you will learn reality and balance.
I found this excerpt on a wonderful blog I read called Gee Patty. A lovely lady whose own journey has inspired me.

So today I got thinking

2009-04-04T05:11:00.000-07:00

I am approaching 40. Yup the BIG Four Oh!

Crap.

In my 20's I pictured my 40's being a time of sheer indulgence. My kids would be approaching their own 20's, i would be cashed up and my DH and I would still be young enough to travel. And I'd still look good ;o)

Reality is the person I thought I'd be spending my later years with is gone. Not dead gone, but gone. Our marriage of 10 years a mere memory these days. My thoughts of being "cashed up' are gone too. 10 years post divorce and 2 kids to raise has eaten up my savings.

Moving along.......as a new partner and a new baby.....looking good right? A new start?

Throw in a premature birth, a diagnosis of Autism, two other children to raise and you can kiss any chance of cashing yourself up goodbye. Add a blended family into the mix and Hello - Jackpot.

I LOVE all my children dearly. They are great kids and I'm so very proud of each and every one of them.

But the stresses of what we have been through these past 6 years have taken their toll on my health and my looks. The old woman I look at in the mirror doesn't need to wonder where that wistful 20 year old went. She died. She died in all the crap that has become her life.

And I hate her. I hate that youthful 20 something for wanting and I hate the almost 40 something for knowing she can't have it. That old bitter face I look at so much has become a symbol of failure and of sadness and of regret. I hate looking at myself so much I have only 1 mirror in my home and it's in the bathroom. I haven't even looked at myself in a full length mirror for as long as I can remember. I can't remember the last time I felt good (or looked good).

My 40's will be a long way short of the dreams I had in my 20's.

L's Easter Gifts

2009-04-02T06:24:00.000-07:00

I asked L if he would like to give easter eggs to the children in his class. "Yes!" was the response.

He is in a small class of 7 students (including him) and all have various forms of Autism.

I asked his teacher if it would okay for him to distribute the eggs tomorrow before they break up for the Easter holidays. I got a list of who is allergic to what and any dietary preferences.

Armed with that, I went hunting for:-

Gluten Free / Dairy Free Eggs
Nut Free Eggs
& just plain old Easter Eggs :o)

I've put labels on the eggs and because L is learning to read, he will be able to hand over the eggs himself (with some help). I've even included one in the bag just for him and a spare one incase one gets broken. Let's pray it isn't the gluten free/dairy free egg that bites the bullet. That sucker was hard to find.

It's hard to say what the reaction of the other kids will be, but I know L will enjoy the experience of giving them out.

Wordless Wednesday

2009-03-31T22:42:00.000-07:00

A day off...

2009-03-31T05:49:00.000-07:00

So does anyone else let their child stay home from school without a 100% legitimate reason? Nobody?.......come on I can't be the only one! Wait.......is that a hand in the back row? Yes! I knew it! Of course we all have those days and as a kid isn't it just the best when your parents let you have a day off school?

Yesterday when I picked L up from school he was a snotty nosed puffy eyed little boy. He was tired and a bit grumpy. His teacher mentioned that she was going to be taking the day off today, but that the kids would be going on a school trip to a local playground.

When L woke up this morning, he was a little puffy eyed and a bit congested, but I don't think he was in any danger of being germy, but I let him stay home anyway. I was tired, had a massive headache and couldn't be bothered rushing to get him to school.

But the real reason lies in the fact his teacher wasn't going to be there today. I have to admit that I'm not sure about the classroom aide. She is way too heavy handed when dealing with the children and although there is a strict "No Hands on" policy with L, I didn't want to risk her being under pressure with a field trip and maybe grabbing L and distressing him.

L really missed school today. Surprisingly so. He ad libbed and quoted ALL day. I heard script after script of conversations obviously going on at the school. It made me laugh. He is so innocent, these were excited conversations that I would expect a 2-3 year old to be having. Instead they are coming from my 5 almost 6 year old. There was a day when I didn't think he would ever talk, so this is so special. Language is something we take for granted because it's should be such a natural thing, but for kids with ASD it is such a struggle sometimes.

So anyway, playing hookey from school (and work for me!) really turned into a lovely day because I was reminded just how sweet it is to hear that little voice squealing with pleasure over absolutely everything. Precious.

Decision time!

2009-03-30T05:55:00.000-07:00

As a follow up to my "Time" post, I have again found myself running out of it and having to make a decision.

You see for the last 6 years I have been a University Student. Not a good one either, or I would have finished my degree. Circumstances of the past few years has meant that I am constantly deferring my studies, withdrawing from units and as such after my 6 years - I'm still a 2nd year student.

I did enrol this year and tomorrow is crunch time for withdrawing from units without recording it as a fail. I opted out of 1 subject today (Criminology) and toyed with the idea of trying to actually get through my other subject (Ethical Communication & Citizenship).

The real truth is that I don't want to study - at least not these subjects. Trying to study as mature aged student is difficult but when you throw in a child with a disability, a household to run and an unsupportive DH, parents to care for and a job and you are fighting an uphill battle.

So I'm about to take a look over my study guide and decide whether or not I could actually make an attempt to do this subject. I'm tipping no. I took a look at my schedule today - and quite frankly, I don't have time to factor in a breakdown.

Time......

2009-03-29T06:27:00.000-07:00

There's just not enough of it! Stuff fills it up, and before you know it - it's almost April.

So here's an update on what's been happening these past few months:-

Me: - Coelic diagnosis. Thrilled to death about that one. Allergic to what? Pies, cakes, garlic bread, biscuits, chocolate? You've got to be kidding me! I'm only just starting to look into Coelic forums and see the real deal. Did you know that you can buy Gluten Free make-up? As if dealing with my diet isn't going to be bad enough, now you're screwing with my make-up? If I can't get a mocha coloured lipstick that's GF - well, I won't be responsible for my actions!

L:- He's a little school boy! And not only that, he is a little school boy that loves going to school! How cool is that? After some hesitation (on my part, not his) this school has been the best thing that's happened to us in a long time.

N:- My big boy :o) Starts a new job tomorrow! Working in IT.

A:- My princess - Starts her hairdressing apprenticeship on 6th April. Loving the fact I'll have my very own hairdresser in the family.

DH: Well, not much I can say there. It's a relationship that is going nowhere....and I am accepting of that - for now.

OMG it's August already!

2008-08-08T22:18:00.000-07:00

Do you know what? I think I've been in some sort of grayish funk brainwise. I literally had no idea that it was August! I know to some it's easy to lose track of time and dates but I really have no excuse because on most days I actually need to write the date down in my order book!

Upon the realisation that it is indeed August, I am now in panic mode! ARGH! In some dark part of mt brain I kept thinking I have at least 6 months to choose and prepare L for school. What sort of parent am I?

Granted, I do have the school picked out. Phew! But I still haven't lodged the paperwork that is needed to get a cognitive assesment etc etc Oh no! I'd just sort of um....left it.... because I figured that if I left it somehow overnight L would wake up and the issues of Autism would be gone. That being said, the hardest part of what I would have to do is choose which one of the swanky private schools I would be sending L to.

Reality check mummy! It aint gonna happen. not this year anyway. I've made the decision not to mainstream L for his first year in prep. I figure prep is hard enough on a child without having to learn the rules for 2 different schools and get used to numerous sets of teachers and kids.So special ed school it is for us! The school looks lovely BTW and I am actually really pleased that he'll be going there. (plus secretly the word 'inclusion" used at a lot of mainstream schools is just a bullshit word. There's no 'inclusion' at all. It's more a case of we'll take your childs funding and give you stuff all in return).

DH and I got to tour the school we've chosen a few months ago and I just fell in love with it and the kids that were there. I know all kids are special.........but these kids....WOW....they just take your breath away.

The parents of special needs kids are a whole lot diffeent too. Everybody 'gets it'. We may not know the particulars of a childs disability but there is a common ground of understanding and appreciation amongst us. You only have to say to a mum of special needs kids that you've 'had a bad day' and she gets it! You don't need to go into details. She understands!

Anyway, I digress - back to the paperwork issue. Must - lodge- next- week!

Someone remind me? please?

Grief - mummy guilt

2008-08-07T00:10:00.000-07:00

People normally associate 'grief' with death. The loss of a loved one, the end of a relationship and I guess I would have fallen into this category before I had L. Having a pregnancy end prematurely does give you a sense of grief. You feel like a failure as a mother. I mean, for a start pregnancy is a perfectly natural event... right? A god given right. It's those motherly instincts that set in the very moment you find out you are pregnant. No late nights, cut out the alcohol, no painkillers, cutting out the sushi....the list is endless. You are going to do this right!

Delivering a baby prematurely is a shock. Not only does you body go into shock, but your mind does too. It gets an overload. How on earth can you get a pregnancy wrong when you are so strict about the care you take of yourself? Suddenly you are thrust into the world of Neonatal Instensive Care (NICU). It's a horrible place to spend any amount of time. For us that time amounted to almost 11 weeks. It wasn't until I was home that I began to grieve for my 'lost' pregnancy. Here I was bringing an 11 week old baby home and he shouldn't have even born yet. The 'congratulations' were few and far between. Nobody brought gifts. It's a surreal experience.

Fast forward on and tune into our son's pyschology evaluation in September 2005. I get the news "Autism". The months after this diagnosis were horrible because I felt grief that was unimaginable. I grieved for the little boy who may never talk, the little boy who may always feel like an outsider in his peer group, the little boy who might always be picked last because he was 'different', the little boy who for now was cute playing with his cars - would that be as cute when he was 20?.

I grieved for my lost boy and also for myself. Suddenly instead of just being a mother - I had the label 'carer' thrust upon me. Absolutely everything I do now is focussed around my son. I left my job working in family law to work in lower paid sales positions because the hours were flexible. I gave up my university degree in Criminology to pour over books on autism. I gave up friends, long lunches and late nights for nappy changes on a 5 year old, autism playgroups and meetings with therapists. The saving grace for me is that my son is a gift......and I love him to death.

But still I grieve - grieve because Autism not only stole my son away from me..................it stole my life as well.

So why is it?

2008-08-05T05:20:00.000-07:00

That when you make a decision that's uteerly life changing, nagging doubts surface? I doubt myself on the big decisions and I think that's in part because I have lost confidence.

I told a good friend about my decision to leave my DH and she urged me to think about some counselling. She is also an ASD mum and knows the stresses and strains of raising a child with special needs. She says that the counselling saved their marriage and refocussed them back into a 'relationship'.

I don't know if I want that - although in itself sometimes counselling is good to actually point out the reasons you SHOULDN'T be together. I do believe though that people don't really change. Not for the long term anyway. We are what we are. It takes a really strong and committed person to make those life long decisions and I think that despite good intentions people ultimately fall back into what they know.

Even if I take away the ASD stuff, I don't see a future with DH. Looking into your future.....wow....there's a depressing thought for me! I've distanced myself from all my friends, don't have 'work' collegues and my family is all over the place. The house I will be able to afford...sigh...it's just as well I'm handy with a paint brush.

There are so many aspects of this I don't want - and yet the alternative to stay in a relationship that's stagnant and stale - not appetising either.

Oh well...................enough lamenting! Time for a glass of red wine and maybe a dvd.

Difficult Decisions

2008-08-03T20:20:00.000-07:00

Let me start right off by saying I am the world's worst decision maker. I either jump right on in or procrastinate to the nth degree. Neither is working for me ;)

I have come to a decision these past few weeks that needs to come into force sooner rather than later.

That is..........I am going to leave my relationship of almost 8 years. There are no tales of sorid affairs, vicious arguments or anything of the sort. I can't even say 'we grew apart' because I really don't think we had 'it' to begin with.

What we have is a tale of two people who really stayed together because they had no-one else. Throw in a child with a disability and you have the ingredients that will make you stay far longer than if you didn't.

Our son is 5 and has been diagnosed with Autism Spectrum Disorder. He won't understand any of this 'adult stuff' - infact it's hard to say whether the change will affect him at all.

So here I am 39 years of age - about to be single (again). Clearly I'm not good at this marriage/relationship stuff. Or maybe I'm sick of being a doormat. I don't quite know yet.

I'm scared of the change.......but I'm going to do it anyway.

A journey

2008-06-05T06:17:00.000-07:00

This is essentially a journey of a girl who wants to stop existing and start living. A journey of a girl who knows she deserves better but is unsure exactly how to go about it.

In order for me to change, I have to revisit things in my life. Some good, some not so good.

Mahatma Ghandi (who I admire greatly) once said: "Be the change you want".

I find that difficult to actually believe. I'm a good person - that I do know. But that good seems to make me a doormat, an easy target and I settle for less than I deserve. Maybe I am reading the quote wrong. If you can shed some light on it - please let me know :).