Weekly Winners 22 2009

...has there really been over 22 weeks of 2009 ?

May 24th to 30th Edition 22

It has been cooler still and with a few more rainy days this week too we made sure we had plenty to do.
Tomorrow is the first day of Winter ...no wonder it is cold ! We never get snow here though I wish it.

P is for park !

(In case you missed it ...last Sunday we went to the park)

O is for ogling Orchids
(@ large chain hardware/home handyman/garden centre- everything under the roof)

Jumping

Helping the cook by
Lickin the beaters

Waiting for cake

finger licking goodmmmm

lossing the curly locks

Lost in space (at Wiggly play centre)

Hide

n seek

SlipperySlide

Remember Weekly Winners is a meme to show off your favourite snaps of the week ,
not a competition so anyone can join in the fun ...
Please go see more Weekly Winners @ Lotus's
I have no idea why but blogger uploads my photos in reverse ..grr so some of the pictures are out of order.

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N is for Neurofibromatosis

Another confession . I hate talking about it.

May is International Neurofibromatosis awareness month .I have rarely mentioned it on my blog that I have NF1(much less in real life). It affects about 1 in 3000. It is more common than CF but I know many would never have heard of NF1 or 2. Yes, neuro f.ckity fibromatosis it is a hard word to say and it's even harder living with it.

Twenty years ago this month I discovered it quite by accident , though the signs and features had been there since my infancy.

In May 1989, I found a newsletter from the NFAA - (Neurofibromatosis Association of Australia) on my Aunt's table .I was visiting and as she was busy with her 3 toddlers, my then small cousins, I started to read it. My toddler cousin had not long had an optic glioma removed (common NF1 type tumour on optic nerve ~ removed via brain surgery in 1988/9).

I knew straight away NF1 was what I had ...had since birth. I cried for days , alone and despairing.I was so shocked. I almost lost the plot.

Despite being a registered RN nurse I didn't know much about it. I think the medical profession was largely undereducated too or rather they never mentioned it to most of the 'family' the implications of having NF1 signs & clinical features.

No doctors had ever mentioned it ~ though I had numerous and very large cafe au lait spots (milky coffee coloured / 'dirty' marks) plus other definite signs. After, I calmed down I went to see a neurologist, a geneticist and other doctors. It was more of a case of wait and see...then manage the symptoms. I've seen a few Drs over the years.

NF is a genetic disorder, 50 % dominant inheritance which means pretty much 1 in 2 chance if you have an affected parent. It can also be a new mutation in about half the cases...not quite a freak event but you know what I mean.

The family history started to fall into place.My grandfather, mum, aunt, 2 uncles (I deceased @ 31), my sister, 2 cousins ...now one of my sons and my cousin's daughter (2). My grandfather didn't have much contact with his extended family after he got married but I suspect they carry this too from a few things that were mentioned in hindsight.

I suffered a fair amount of 'teasing' at school because of my many 'birthmarks'. Mild bullying and social 'exclusion' but it wasn't too much to deal with. Just enough to bring misery, luckily I always had a few good friends to make things okay.I am /was so thankful for them. I loved books and reading too so the library was my friend some days.

We [my affected family members] all live relatively normal lives though we have almost all had various 'surgery' for removal various tumours. Now, I have a large one in my left thigh that causes extreme pain if pressure is applied (which wriggly little boys do often climbing onto my lap) and other sensations -tingling/pulling/tightness.

When I wean my sons I'll go see a surgeon maybe ! They say they leave them alone unless they cause pressure/pain or other damage by structure /organ or nerve compression .

I have hundreds of small nodules/skin tumours/ ugly bumps & soft lumps and freckling (skin pigmentation). My body is hideous to me but clothes cover up most things , thank 'God' ! I have several small soft lumps on my face but nothing too hideous or noticeable ...yet. Click here to see a picture of elderly woman's back severe NF 'skin'.

There is a huge range of severity and manifestations even within the one family and it varies from individual to individual. (They call it variable expressivity).

I joined the NFAA years ago for a few years .One year I didn't renew my subscription .I put it off because the newsletters were too depressing and scary. I couldn't read them anymore.( I still haven't re joined.)

Still , it gives me a spirit of darkness and has been upsetting me more lately. Unsettling and freaking me out.I won't describe it as being depressed, but my mood lately has been bleaker and it scares me.
There I said it...
Neurofibromatosis awareness month is almost over but the awareness that I have to live with this sh.t is with me everyday.
That my young son has to face this life long 'demon' too gives me a lot of grief. We keep a close watch on him .He is being followed up closely by the Children's hospital clinics. There is no cure ...yet ! Management is a program of treatment by a team of specialists to manage symptoms or complications as and if they arise ... if .
My twin sons are also participating in a 7 yr study about cognitive development in NF1.

Facts & Stats about NF1.NF is not a rare disorder, it is the most common neurological disorder caused by a single gene. Find out about the facts and stats for NF here.

It is (was) Ehlers Danlos awareness month too Veronica knows all about this.

Like Veronica ...the main reason I wrote this post was not to 'whinge' but that if I could bring awareness to one person /family and help them in some way then it was worth baring all.
I rarely talk about NF, even within my extended family, so believe me when I say how hard this was to do.

♥

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Wordless Wednesday - P is for park

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On Loss ...

I don't talk much about losing my first baby, my still 'born' daughter .
Certainly the hard days are fewer and fewer.
On Mothers' day I felt her loss and her presence.
I remembered the day just over 5 years ago, my first positive pregnancy test held between my trembling fingers after 12years infertility.
I remembered the changes we made buying and moving house.
The emotions flooding from fear to elation back then ...I was a parent already of an adoptive son but it was still my first 'known' pregnancy.
I had no idea of what was ahead of me ...
Not long after I had our first scan , then another at 12 weeks ... then the one that told us 'she' was 'she'.
It was all over too soon ...
Saying goodbye before we got to say hello .
A final gut-wrenching scan so there were no doubts ...after my OB couldn't find her heartbeat @26weeks at a regular appointment.
No doubts ... except how was I ever going to deal with the reality of losing my long awaited baby girl and the pain.
It is easy now I no longer focus on the raw emotions . I fumbled my way through in the begining. I had no clue . I didn't know anyone who had lost their baby.

So what do you do...

You wake up everyday and breath.
You believe in yourself that you can get through this.
You remember that this is as bad as it gets, from here, each day, you will survive and sunshine is never to far away.
You hug each other.
You find people to support you and you ask for help when you need it.
You remember that its ok to cry.

You will be surprised at the strength you find in yourself. Take each day as it comes, don't think to far ahead and tell yourself everyday that you can only do your best.

YOU WILL get through this

This advice I found recently ...and it is really good.

'You find people to support you'.

The other was to find and surround myself with friends who had cried & crawled walked the same journey(s) , hand in hand , side by side , leaning on one another when we needed to.
Some, still now, are real life friends. Some I have never met . We went on to share subsequent infertility / pregnancy journeys and parenting after loss.
Yes, we still meet and talk about the days of empty arms and broken hearts.
♥

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Weekly Winners 21 2009

May 17th to 23rd Edition 21

We had a busy week and an even better weekend but it was over too soon ...
It has been cooler and rainy this week but last Sunday we were 'falling' in love with autumn.

can you see the rainbow ?

Olympic Cauldron converted into a fountain ...

What I didn't take pictures of ...

• The heavy rain pouring down ...the washing ... not complaining, just saying ...

I pray for the safety of those affected by floods and the strength they will need to deal with the massive cleanup.

• The mess S & J made being inside 24/7 instead of outside...but guess where we went today and now the toys are all organised.

• The crowds in IKEA. I have never seen so many people in a store like we did in IKEA - it will lead the ecomony forward - the checkouts were so long.
• The people I saw at dusk walking the hugest billy goat on a dog lead, along with their fox terrier and the tiniest tiny Chihuaua dog. I didn't realise till we were right alongside them the huge beast was a goat LOL. I am going to stalk the streets since they told me they take the goat out often.
• My little puddle jumpers ... next time !

I wish I had more time to play and edit my photos (better or even at all) ... hopefully next term I will get to my photography course.

Remember Weekly Winners is a meme to show off your favourite snaps of the week ,
not a competition so anyone can join in the fun ...

Please go see more Weekly Winners @ Lotus's

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Talk like a pirate

Smiley Saturday

I really wasn't going to ... but this was so funny.

Yesterday, I discovered Pirate 'english' on Facebook. 

A friend, CB, I met at a real life pregnancy loss support group told the 'crew' about pirate english.It had me staggering off the plank laughing. 

This wasn't the funniest bit !

A different friend of mine F (who doesn't know CB) who I also met through a pregnancy loss support group chats to me regularly on Facebook and MSN. Late, last night I told her how to make FB 'talk' pirate english as she needs a good laugh.

Tonight, I quickly log on my computer to actually turn it off and I see F had tried to chat with me. I read the following ...

F says:

hehehehe

F says:

Dh is going off at me about facebook

F says:

I logged into his and put it on 'pigeon'

F says:

he went to use it and was like omg wtf have they done to facebook!!!!

F says:

hehehehe

...I reply 

Trish says:

pigeon or pirate ?

5 mins later chat window peeps

F says:

nfi

F says:

pirate?

Trish says:

it's pirate you goose 

F says:

are they the same?

F says:

what did i write

Trish says:

pigeon

F says : I need some sleep LOL

Trish says:

so did you enlighten DH

F says:

nup

F says:

he is going mental

F says:

and i am lovin it

Pirate says things like...

Th' saucy wench Trish be usin' Ye olde Facebook with the tongue o' English (Pirate)

'Trish be eyein' this with pleasure".

  "Trish flapped her gums " 

If you want to know how to do it too - ok I know you might think I some people have too much time on their hands but really I don't. I just really needed a laugh.

STEP 1: SCROLL TO THE BOTTOM OF YOUR FACEBOOK PAGE. 

STEP 2: CLICK ON ''ENGLISH US'' 

STEP 3: WHEN ALL THE DIFFERENT LANGUAGES APPEAR, CLICK ON ENGLISH (PIRATE) ...

STEP 4: HAVE FUN 

Go see more Smiley Saturdays at Lightenings

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BAHA ?

Today, I went to see my Audiologist about getting a new hearing aid.
My current hearing aid(s) were fitted ten years ago ...though I only wear one as the other aid doesn't help. I know technology has improved over the years and I was very excited to hear a new option.

He told me about a new system called BAHA (Bone anchored hearing aid) and suggested I might be a candidate.
I made a few phone calls and booked an appointment for July for a hearing test and assessment to see if I am a suitable candidate.

I found this on the Cochlear Aust site...

Cochlear, the world leader in implantable hearing solutions, now brings hearing to more people than ever before. Our bone conduction implant, the Baha® system, helps people with conductive hearing loss, mixed hearing loss as well as Single Sided Deafness (SSD™).

The Baha sound processors provide hearing to people who cannot or do not want to use traditional hearing aid technology.

I have struggled with moderate hearing impairment for over 20 (to 30) years. It is mainly conductive deafness but I suspect it is mixed as well.
I suffer from constant ear infections and wearing the hearing aid exacerbates it.I have almost complete deafness in one ear and moderate hearing loss in the other , plus my middle ear bones have been affected by numerous infections and I have a perforated ear drum. It is not suitable for reconstruction.
This may be the answer I have been looking for to improve my life, and restore sound and communication.

The operation is 'simple' and the device an implantable prosthesis is allegedly covered by my health fund (The BAHA device @$6000 is not cheap). I have no idea of the cost of surgery though some will be covered by PHI.

I read it is also available through public system but have no idea of the waiting list time.
Today , I am very grateful we have private health insurance - I've paid thousands over the last 22 years.

Has anyone heard about BAHA ?
PS : The Audiologist didn't even charge me for his advice and he said he loses a sale over it too ;)
I joined an online forum and even got an email tonight from one of the first BAHA recipients 4 yrs ago.
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Tiny talk Tuesday

I am loving age 2 . The language explosion is so much fun.

I wish I could remember to write down all the funny things they say ...let alone do (and did I mention how glad I am to have my camera back so I can take pictures).

I am a fan of Tiny talk Tuesday .Today I finally remembered I have something to add.
A few weeks ago I asked the twins to pick up the blocks spread across their bedroom floor.

J (age 2 & 3/4) : "No, you do it I got sore bad - ow "

...complete with a flick of one hand and the other hand on his lower back .
(previously showing no signs what so ever LOL)

My Darling hubby started calling him 'Compo' (the colloquial term for someone getting 'compensation' particualrly when alleged to be 'faking' e.g. a sore back to get out of working whilst still getting paid)

PS : I also won a competition on Facebook for it ...$30 voucher to an online store - woohoo!

Tiny Talk Tuesday helps parents focus on one of the many joys of parenting - the funny things that our little ones (and sometimes big ones) have to say.

Join in the fun and record the Tiny Talk overheard in your house! Publish a post on your blog and link us to the laughs.

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Weekly Winners 20 2009

May 10th to 16th Edition 20

The I finally got my camera back edition ...

I love Autumn (Fall)

Lizzy was getting some sun down by the duck pond too
(wish I could have caught the coloured reflection better)

♥ feeding the ducks ...except they enjoyed eating the stale bread too

New shirts (click to read all about them)

Hope they don't try trains next !

When do we get the smarties mum ?

Bad Trampoline hair day
Loving my new Little drummer boy shirt
Sidewalk Chalk artist


Ready set go ... Hold on tight
Saturday Sunset
Remember Weekly Winners is a meme to show off your favourite snaps of the week ,
not a competition so anyone can join in the fun ...

Please go see more Weekly Winners @ Lotus's
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Smiley Saturday

1.My biggest reason to smile ... I got my Canon DSLR 1000D camera BACK AFTER 6 LONG WEEKS ! Indeed I am so happy...insert sounds of joyous clapping, high fives and jumping ! YES !

2. A few months ago I won a competition from Tina@Mummifiedx5 - for a personalised made to order kids t- shirt.
It took me forever a while to chose. Since they are all made to order - oh the choices !
Karousel Kids has so many wonderful choices - a gallery of beautiful embroidered designs (boys & girls) and even your child's name or a saying (a choice of 24 fonts) , choice of over 20 fabric colours , then your choice of t shirt /long sleeves as well as plain t shirt or raglan , ( different coloured sleeves if you want). They are all made to order in 1-2 weeks.
Kris was so helpful and patient. She even searched for a embroidered drum design especially for S & J. As Karousel Kids says the only limit is your imagination...
My t shirts arrived this week not long after I made my final decisions.
I am thrilled with them. They are bright, soft and well made, and we love the design. Everyone is smiling. They are unique and very affordable.

They would make very unique gifts.
Kris also has a Karousel Kids Etsy store and has some very cute one of kind bibs, onesies/bodysuits/hats/overalls & dresses. Remember retail therapy is the best way to make anyone smile.
Karousel Kids has a blog too.

we made them contrasting ...
go see more Smiley Saturdays over @ Lightenings

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Wordless Wednesday - Blog this mum

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On my mind & heart

Today, is the anniversary of my online friend Chris's death 2 years ago ... 3 months after she gave birth to her long awaited IVF baby. I wrote a  post about her last year and shared on Mothers.

I had never met Chris in real life before she became seriously ill after a sudden stroke and brain surgery.When I first visited her in hospital she was 'unconscious' , unlikely to recover. 

 

We had wanted to meet but it was complicated because I had twin baby boys and I couldn't go far alone. Chris was pregnant, after long term  IVF , high risk with a cervix stitch and had previously delivered precious twin girls who were stillborn. She lived two hours away. Though we chatted every other day on msn and emailed. After she gave birth we spoke on the phone a few times and texted ...then nothing ! I didn't find out what happened for weeks afterwards. 

At the time I never knew ! I was sorry we hadn't had the chance to meet before. Then I went to her funeral to honour & respect my cyber friend , her husband & son. 

I now chat infrequently to her husband on msn messenger he is now sole dad raising his 2 yr son. He still uses her email and sign in name and I get a jolt every time I see him online.

So, I was saddened (even angry) to read a few posts recently about bloggers/members on internet forums who pretend to have lost a child or others that fake serious illnesses. 

I can't imagine why they would do it. 

For the 'sympathy' it appears.

I know we have a choice to take what bloggers / people write on websites as the truth or not. In reality while we may suspect that what some bloggers write may be 'embellished' to make it more dramatic, or heart wrenching or more fiction than fact, or just funnier we can't know the truth.

So we chose to believe or not. 

I first read about Carly @ Names in the sand  getting requests from people whose babies /children were alive ... selfish people who wanted her to write their living children's names and take photos . Emotional frauds who guttered Carly. 

Carly wrote Charlotte's name for me in October last year. Carly inscribes ~angel~ babies & children's names  in the sands of time at a beach in Western Australia , at sunset, then takes  a photo. Very inspiring.

 

Last week Melissa @Stirrup Queens & Sperm Place Jesters wrote a brilliant post on Emotional fraud on the Internet. Then she followed it with an update. Wikipedia even has given it a name Munchausen by Internet.

Niobe also wrote about it ...she said it leaves people feeling shocked and betrayed ...

Sherry wrote about it too.

We're forever nursing our own deep wounds, but we rally ourselves together and dig deep into our souls to offer all we do have to someone we can relate to - someone who tragically loses child after child

 That is what got to me . We may shed rivers of tears for some of these people, pray,offer up supportive comments and say thank God it isn't me - but it is all lies. Tragically ever after we wonder if another parent is for real because seeds of doubt linger a long time. 

Two years ago I discovered a woman who I suspected was faking the death or her child(children in fact) on a parenting forum.  

I started to google her and tracked her through several websites /parenting forums across the www. Even on a leukemia support forum. My Dad had leukemia and passed away after after complications of  a bone marrow transplant. Shocking, was the depth of her deceptions. 

 

She used the same unusually spelt names and the story was a little different in each place ...living in foreign country ... her little girl died of Leukemia ,12 months later a new baby was born, new baby dies of SIDs  one month later.

On another the same little girl was still alive but dying tragically before her eyes of AML (all around the same dates) , a son with autism (sometimes) , then her mother passed away (on Christmas day) on another site .
She was running out of people to die ... even her grandmother but I stopped there and never looked at that post. 

I notified the moderators of the forums involved and some deleted her posts, some didn't, one deleted mine when I questioned her. Most never even advised the victims of the emotional scam of the truth, despite the multiple links I sent to prove it.

 

I was sickened by what she wrote. She even posted links to photobucket of her alleged dead baby (while still alive) ... she had a collage of Jon Benet Ramsay on there I found .This alerted my concerns further on her emotional fraud.

Have you ever discovered a blogger or someone who turns out to be not what they say ... or suspected a story is too far out even if it doesn't involve such dreadful topics ? 

♥

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Weekly Winners 19 2009

May 3rd to 9th Edition 19

Cooking hot air popped Popcorn is fun

not always buddies

Doing the flap (Wiggles) Car style

Zig Zag railway
Hug time
mmm Chocolate Caramel slice
....
.My secret agent mama Mother's Day swap surprise ...thank you Tina
..
... Big Brothers are really useful when it comes to building tall towers

Remember Weekly Winners is a meme to show off your favourite snaps of the week , not a competition so anyone can join in the fun ...
My DSLR camera is still being repaired so I missed starting the photography course at the Community college *shrugs* ggrr8.
Please go see more Weekly Winners @ Lotus's

Anyone know how to turn off Zemanta ...it somehow turned itself back on when I did a Firefox update?
I h8 it.
Blogger has been giving me grief and Goggle chrome will not let me edit text ...the HTML & formatting has gone crazy. I give up.
could my woes be worse ?
.

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Out of order

So another month has swept by and it is only 231 (?) days to Christmas ...

One's life is not as fixed as one believes. Surprises may lie in store for you, the unexpected often tends to happen, sometimes bringing in its train the most delightful change in one's life or circumstances.
Elizabeth Aston

I can always dream for Sunday can't I ?...

I have been feeling very low but keeping on my happy face.
I feel my life is out of order.
There are so many chores, things left undone, things I want to do but there just aren't enough hours in my day or week or month.

The daily rush.
Squeezing me.

My blog is suffering , my connections in real life and on here.
Facebook is just another burden at times but I am so addicted to the tiny snippets from my friends both real and imagined lives. (I just don't do the other applications - I ignore these requests)

Really but keeping tabs on everyone, while a lot of fun, is just like more work and time wasted. Time away from my family.

I don't mind working ...really I just feel I am a terrible mother for having to do it.
I take them to pre-school with a heavy heart (ok it just 2 days a week).
I feel I am forcing them into unwanted separation but they love it.
The reunions are magic, heart exploding stuff.

I feel they should still be with me all the time, they are still just babies. I am forcing independence on them before they are ready...or is it me. They already have to share me .

I know that happiness is really a choice
... and so I choose today (and everyday) to be happy as much as I can because despite some of the bad in my life, the good things are really good especially ...

Little boys , funny habits, doing funny things, having adventures and developing new language skills ... more than just NO !

J (2) said the other night when I asked him to pick up his toys ...

"no you do it I got sore bad"
...complete with a flick of one hand and the other hand on his lower back

Sunny autumn days
Outside
Perfumed roses.

My little boys soon to be three who love the life they live... love it more if I gave more chocolate more !
All day giving me reasons to smile.
I want to tell them often "little buddies enjoy this life you've been given, you are (ok we are) truly blessed".
I think they know we know it too .
Gosh it is Friday already ...in 10 mins
♥

Weekly Winners 18 2009

April 26th - May 2nd edition 18

It has been a busy week so not much time for my interwebs .

Lots of time concentrating on the things that matter most ... family.
A day or two of sickness ...I caught the Brothers' vomiting bug.
Crispy cool and sunny autumn (fall) days.
Slipping between warm sheets.
Bad news ~ I rang about my Canon camera -it's still not fixed ...upload cord to Dh's point& shot camera misplaced (so can't get off my other photos)
Breathe ...
Smile ...
Enjoy ...
Love the ones your with every day

Please go see more Weekly Winners @ Lotus's
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