Wordless Wednesday : Despicable Me

Guess who brought both iPad and Mini to Sydney ...much to his twin's - that was despicable - he did it on purpose attitude TOO.

J had 5 days with just my old iPod. Anyway, this Cheeky Minion had a Neurogenetic Clinic appointment at Westmead - for annual Neurofibromatois review. We encountered this big Minion in the corridor. Sam wanted this picture ! It is so HIM.

An InLinkz Link-up

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10 ways to stress less while your husband is having an MRI

My husband is off having an Brain MRI right now , hopefully as we speak.

He had a follow up appointment with the Radiation Oncologist at Cancer care centre , all seems good. A huge relief .

Then he saw a Neurologist because of the the ongoing headaches. They decided they would do another MRI just to rule out anything, it's been 11 months and 1 weeks since his last one.

It was supposed to be 3 weeks ago but 15 mins after they booked the scan (7pm the same day after the appointments) by the time he had walked up to give/receive informative the machine had broken down.
They think it is more likely stress, and they told him to adjust his medications too.

I am not stressing. 


Last week , when Sam had his annual Neurofibromatosis  [NF1] review at the Children's hospital clinic . We saw the Specialist not just a registrar . She decided Sam needs a brain MRI too. Again just to rule out anything causing his vision changes.

The eye appointment 3 weeks ago shows his eyesight is slightly worse in left eye. The eye they can't see the optic nerve in because of the myelinated nerve fibres covering the disc.

In children his age they give them a trial mock MRI first to see if they will cooperate and lie still enough without a general anaesthetic. When I mentioned we were going away for 2 months in 3 weeks, she said let's try to get it done before you go...have n't heard yet.

If he can have it done without a GA the wait will not be as long. I am not stressing ... !

How do I stress less ?




(Just what I am doing)

I said to myself "I can manage at least a few of these every day" ...

He just called and is on his way home.
How do you cope with stress ?

Edited to Link up with Sif @ At the bottom of the garden's 10 things on Tuesday.
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Wordless Wednesday Jeans for Genes

Aussie Not so Wordless Wednesday for a good cause

This brings back a few memories ...

Drummer boys @13 months in Daddy's jeans

5yrs 1month - Jeans for Genes

• “Patch Your Jeans” Facebook App: Create your own denim patch using the ‘Patch Your Jeans’ app and share it . I attached our own patch above!  To check out the app, visit the Jeans for Genes Facebook page (www.facebook.com/jeansforgenes).
• Become a Fundraising Genie: Organise a fundraising activity at your home, office, school or community on Jeans for Genes Day.  It could be as simple as asking your group to wear jeans on Jeans for Genes Day and make a donation.  To get a free Genie Kit, visit the website to register: https://www.jeansforgenes.org.au/consignment-landing.aspx
• Wear Denim on 5 August and Share Your Pic: Remember to wear denim on 5 August, share it on Facebook and tag Jeans for Genes in the photo so it can be shared with supporters of the campaign!

If you’d like more information about Jeans for Genes Day or CMRI, please visit the CMRI Web site at www.jeansforgenes.org.au.

Jeans for Genes day ... it means more to us because Sam has a genetically inherited disease Neurofibromatosis 1. So do I and other members of my extended family.

It is extremely variable - and there is so much more unknown but we live pretty normal lives albeit with more medical appointments and treatments/surgery when things come up.

Ps My Canon camera battery is flat and charger awol so I had to instagram these.
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Something new ~ Hair

I few weeks ago I was invited to THE Barney Martin's  hair salon in Surry Hills courtesy of P & G to colour my own hair . 

I have darkish brown hair and fortunately very few grey hairs*.

I have to confess that I haven't ever coloured my hair...never apart from a few foaming highlights.


Having had long hair for most of my adult life I haven't spend much time or money on my hair.

My career was in Nursing, in a Children's ward so I always wore my hair tied back and up in a pony tail. It was simple and quick to manage. NO style no worries.

Very occasionally I wore my hair down or styled when we went out.I just never worried  too much about it.
I rarely wore makeup either I preferred to go 'ugly' naturally.

I am far from 'attractive' due to many complicated reasons I won't go into here, mostly a genetic disease NF1 and my eyes. Hair and makeup have been the least of my day to day concerns.

However, as I 'age' with young sons, I am now more self - conscious because I do not want to be called their grandmother when they start school. As an older mother I want to look my best and take care of what I have left.

I am just too much of a scrooge to spend money on my vanity. I do feel more self conscious now more than ever as NF1 is causing an increasing number of small but highly visible lumps over my face (& everywhere).

I really try not to let it bother me because beauty is only skin deep.


Anyway, I digress. I decided to bite the bullet and try a new hair colour - medium golden brown. I wanted to feel better about myself because I've been feeling down. 

At the P & G event I was given the opportunity to colour my own hair with the Clairol Nice ‘n Easy Colour Blend Foam (rrp $17.99). Amidst several other fabulous 'style' bloggers also receiving Nice ‘n Easy Colour HAIR makeovers or for some just a pampering hair wash and salon blow dry & style , I felt very insignificant (- like why was I invited). 

I was pleased to hear my hair was in very good condition.

...So on with it - we started the colouring process ourselves - it was incredibly simple : Just pour bottle 1 into bottle 2, tilt the bottle gently up and down 3 times , then gently squeeze the bottle onto your hand and apply the no-drip foam to your hair. Long hair needs a little sectioning I learned.

I realised it was something I could probably do myself at home with a successful result. It's very affordable too. Though my stylist helped me finish up as the salon chair was not as easy at the bathroom at home. There was little mess and I only slopped a little foam onto my face.

The foam was left for about 10 mins then rinsed out by the stylist . I felt very pampered because it included a divine scalp massage. Followed up with a blow-dry and professional style experience. It was quite a treat for me as I only get my hair cut about 2-3 times a year ; rarely salon shampooed and styled.
 

The P & G event included the promotion of Pantene Pro-V Nature Fusion Shampoo & Conditioner . A new formula enriched with ingredients uniquely derived from Cassia seeds (One hundred crushed Cassia seeds in every bottle).

I loved the smell. Nature Fusion is specially designed to promote hair fullness and shine with scientifically naturally derived ingredients. It's suitable for most hair types. My husband likes it too.

I've been using it for 4 weeks and I love the way it makes my hair feel. It deeply conditions my hair and I've noticed less breakage. I love my new colour, though most people didn't notice a difference.

We were also shown the new Wella Pro Series {at home} Collection , they used these products {mousse & hair spray} to style our hair.

Inspired by stylists and developed by WELLA experts, closest to salon smooth hair in retail at an affordable price

I got to try the Pro Series mousse and Hair spray at home .They have a whole range in the collection.I look forward to trying their Shampoo and Conditioner range (It's available in a pump pack ...my favourite). All are available in supermarkets and/or Pharmacies.

Click the links below to read some of the other fun and informative posts for P & G Hair day.

Procter&Gamble certainly do everything in style. They even flew down Kelly & Nikki from Brisbane for the day.

L to R: Rear Kelly ~ Be a Fun Mum, Nikki ~ Styling You, Front Emma~Emma’s Brain, Lori ~ RRSAHM,  Zoey & baby P ~ GoodGoogs, Brenda & gorgeous S ~ The Mother Media & MummyTime  Mrs Woog ~ Woogs World, Me

Kelly has some great tips for busy mums.There are some great hair care tips on the Wella site too.

This is not a sponsored post though I was by invited Procter & Gamble and their PR to attend, I had no obligation to write this post; all opinions expressed are my own.

  

Professional Photos Credit - Georgina Morrison

PS: I only posted my pics so people who I haven't met , yet, will know who I am when I attend the Blogger's Brunch & Nuffnang Blogopolis.

* I did have a scary dream the other night I woke up with all grey hair growing out.


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JulEYE and your child's sight

As you know my five year old,Sam, has worn prescription glasses since he was 20 months old.

We didn't detect a problem ourselves apart from the white eye reflection which I picked up in my photos when he was 11 months old. I was terrified *.

Sam has a genetic disease "Neurofibromatosis 1" - which can result in an optic glioma, his eyes were being already being checked (initially every 3-4 months) to detect them early if they occurred.

Fortunately while he hasn't had an Optic glioma , he does have myelinated retinal nerve fibres plus myopia (causing nearsightedness).

I still get photos with a white eye reflection - potentially a serious symptom of some eye diseases.

I know what Sam's is - myelinated retinal nerve fibres plus myopia - white fibres cover his lens. It has affected his vision though wearing glasses helps corrects this. I just hope he doesn't end up with a turned eye ('cross eyes' -like me) because when a child has vision issues that go undetected it can cause the brain to switch off that eye (like lazy eye).

It was only on subsequent visits they found he was longsighted in his other eye. I am glad we were having his eyes checked. Sam may still need a patch for one eye to strengthen his weaker eye.

When I received an email asking me to mention about JulEYE I immediately had to share it.

Why ?

Every 65 minutes, an Australian loses part or all of their vision – this may explain why one third of Australians list blindness as their most feared health condition alongside cancer. Yet the majority of Australians do not get their eyes tested regularly, despite the fact that 75% of vision loss is preventable or treatable. The Eye Foundation, a not-for-profit organisation, is once again encouraging all Australians to get their eyes tested in July as part of its annual ‘JulEYE’ campaign kicking off on July 1.

Each week of ‘JulEYE’ will focus on a different aspect of eye health. The third week will be focused on children’s eye health and encouraging parents to have their children’s eyes tested and be aware that vision problems are not exclusive to the elderly only and can affect babies and young children. 

As a mother,  who has faced such issues I wanted to share this.I am aware that is quite widespread in Australia.

Undetected vision problems are estimated to affect one in four Australian children. Parents need to be aware of the importance of children’s eye health and that regular eye checks are just as important to a young child’s overall health and wellbeing as other regular health checks, therefore, good eye health beginswith testing from birth. 

The Eye Foundation is asking all Australians - no matter their age - to get their eyes tested this julEYE, and place eye tests every two years on their family’s calendar of regular medical checks. 

AS parents we need to protect our children’s vision

Kirk Pengilly is the ambassador for ‘JulEYE’, as well Australian country artist, Lorin Nicholson and many other young, inspirational Australians currently battling eye disease.

The eye foundation would love others to mention this and help spread the word about this great cause!

For more information or to link to the Eye Foundation website please go to www.eyefoundation.org.au

They are also getting social this year so you can:

•   Follow on Twitter- @EyeFoundation;

•   Like on Facebook-  The-Eye-Foundation FaceBook Page; and

•   Chat to them on their blog- EyeSiteBlog.com

*Everyone please note - white eye reflection is not normal and you should get a referral to an Opthamologist asap if you see it in your photos. It could be life threathening if left unchecked. 

 

PPS I can't stress enough how important sight is. I am almost blind in one eye for a completely different reason (head injury as a child at school with undiagnosed partially detached retina).I have peripheral vision but a huge blind spot in my central vision.

This is a non sponsored community announcement - because it is so important to me.

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Grateful Saturday - Lost & found

1. It is a beautiful , sunny & breezy Saturday morning , even if hubby woke up @5.30am and I heard him so I woke too. The cuppa in bed was worth it. (I might have to go buy a kite now I've been inspired by Maxabella.)
   


2. For the kind words of support after my post on Neurofibromatosis. I'll keep you posted.


3. We are immensely relieved that my husband's followup appointment with the Surgical Oncologist was good. No signs of tumour regrowth at the site and a PET scan is booked for February 1st.
   


4. For lost & found...my missing mobile phone. I discovered I left it at the Dr's surgery, it had fallen behind a chair on Tuesday.
   Wednesday, I searched everywhere at home ...ringing it ...well even though I last remember putting it on #Silent.
   Thursday I rang everywhere I'd been Tuesday afternoon .The Dr's surgery was engaged constantly from 9am, so I rang the chemist, Radiology/scan place, Bunnings...#nothing. The Dr's reception at the family practice found it in the room Thursday morning, (the room wasn't used Wednesday) but couldn't turn it on to see who owned it #FLAT .
   She wondered why no one had called and thought it must have been a child's toy #NOT.
   


5. We went to a new residents night @ Old Dubbo Gaol. We haven't technically moved here but we will be.
   It was very interesting with free 'drinks' and nibbles and a great night tour of the Old Gaol. Our little guys especially Sam was the star of the night and had everyone in stitches playing along cheekily with the guard.


6. A little Farmer's markets, cattle mustering & motorbike riding is on the agenda today so I'll pop back later.

See more Grateful's at Maxabella's place.

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N is Neurofibromatosis

What ?

Yes, neuro f.ckity fi-bro-mat-o-sis it is a hard word to say; it's even harder living with it.

NF 1 isn't 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.

Everyday, I feel like I am dodging a bullet ...you just never know which one going to get you. No exaggeration.

I rarely talk about NF, even within my extended family, so believe me when I say how hard this is to do. Lately, because of what my husband had to deal with his cancer I've been immensely anxious and terrified by unmentionable fears for both of us. Mind games I don't want to talk about.

I finally got the courage to ask my GP to refer me for a Brain MRI. It's booked for 2 weeks. I'm also having a few more tests for other concerns I have... I am so sad I can't talk to anyone.

Thursday 14 ...because I am superstitious about 13.

1. I have rarely mentioned it on my blog that I have NF1(much less in real life, many friends would have no idea). It affects about 1 in 3000. It is more common than CF but I know many would never have heard of NF1 or 2. I discovered it quite by accident , though the features had been there since infancy. In 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 complex brain surgery in 1988/9).It left her blind in right eye & cosmetically affected. (She is now 25, a lovely young mum, still beautiful..now they use chemo to treat it.)
2. 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. It was before Google and the Internet (showing my age) No mistake, I knew from what I'd read that it was a potentially horrible neurological disorder. 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 clinical features.
3. The end of her 4th year medical student the other day hadn't heard of it.
   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.
   
4. I've seen a few DRs over the years. I decided a long time ago to move on with things and not let NF1 defeat me. I made some appointments , got myself checked by a neurologist and broke the news to my boyfriend (my DH).He said he didn't care, he still loved me ...this I think was my greatest concern apart from the NF1.He told his mother, who at the time had her concerns I hadn't explained it fully to him. (Not that it was her business -really he was 22). Her neighbour a Paediatrician had given worst case scenario. I HAD...honestly told by BF (DH) everything.It didn't break us.We got engaged 2 months later and married 7 months later.
5. 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 (K 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.
6. I suffered a fair amount of 'bullying & teasing' at school because of my many dirty 'birthmarks'. Bullying and social 'exclusion' wasn't too much to deal with ..just enough to bring misery.
   
7. We [my affected family members] all live relatively normal lives though we have almost all had various 'surgery' for removal various tumours.
   My Uncle K, had died in a nursing home at 31yrs of age (he was 1o yrs older than me). He had a benign [non cancerous] brain tumour but surgery had debilitated him and broken him. Surgery and complications from blocked brain shunts left him physically handicapped , ? incontinent , barely able to walk or talk or swallow properly. My elderly grandparents had no choice but to admit him to a nursing home.K died 3 wks later - l think it was a seizure not from the tumour .I didn't know it then but suddenly I knew K had NF1 most definitely (he had birthmarks too). I was in shock.
8. I've had a large one in my left thigh(over 7yrs) It only causes pain if pressure is applied (which wriggly little boys do often climbing onto my lap) and other sensations -tingling/pulling/tightness.They say they leave them alone unless they cause pressure/pain or other damage by structure /organ or nerve compression.
9. Nekkid (of course that isn't going to happen) ... it's no exaggeration when I report I have maybe thousands 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).
   
10. I joined the NFAA years ago for a few years .Then I didn't renew my subscription because the newsletters were too depressing and scary. I couldn't read them anymore.( I still haven't re joined.).It still 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.
11. There I said it...Neurofibromatosis that I have to live with this fear 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 has minor vision problems.He is being followed up by the Children's hospital clinics. The cosmetic things you learn to live with you can't hide them.I worry every day for my little boy.
12. Some children have learning difficulties but most attend mainstream schooling with some therapy as required. I didn't have any learning difficulties I am not exaggerating but I was chosen for a gifted & talented program at school and I did manage well academically.
    
13. If you saw me walking down the street you probably wouldn't know I had NF.My clothes hide me well.I don't leave home without them. Some others are less fortunate as they have severe facial disfigurement or other disfiguring tumours . 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 .
14. I revised and pulled it out again wrote this post not to 'whinge' but because if I could bring awareness to one person /family and help them in some way then it was worth baring all.
    

Sorry if it was too long ...

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Honest Scrap (warning it's only part 1)

The Good, the Bad & the Ugly.
First ...The Bad - I was given this

oh about a month ago by MissyBoo.I've been procrastinating thinking hard and carefully about it. That's bad !

The Good ...I am supposed to nominate 3 other people for the award ...though most have already done it.
I took my time because I too really needed to honour Alison , Fe , Missyboo who shared some very intense and private things. I tried to do the same (well within reason).
The Ugly Honest

1. I wasn't really ready to write 10 honest things about myself, to lay myself open for judgement too! I'll start with something easy. I have always hated having my photo taken, I have always felt ugly ...though I know beauty is not the be all.


2. Shortly after I got my driver's licence I wrote off my mum's car. It was low speed accident no one hurt. It was an older model car but they had just finished replacing the automatic transmission or power steering (I digress).
   I went to pick up a friend to go to church . Inexperience meant I made an error of judgement. I didn't drive again for over a year. I only started to drive again because I had to to continue Nursing = shift work and no public tranport. It took me ages to get back my confidence.


3. I have been reading other honest scrap awards stories...on sexual abuse. The statistics are scary 1/3 girls and 1/7 boys. My own experience wasn't that 'bad'. All sexual abuse scars but I just can't think of any other word to describe it as a lesser evil.
    Protect your children at all costs.


4. I met my husband via a radio match making program, he called in ... read more here.(Remember it was pre Internet in the olden days). The night before our wedding my father rang the radio station guy and my tongue tied husband to be was 'made' to talk. It was taped by the 'best' man, unbeknown to us.
   At our wedding reception they replayed it (a few times) ...and everyone was rolling on the floor laughing.It was funny because poor Dh messed up a few things .He was so embarassed at the reception and also sick. He had food poisoning on our wedding night- not so much fun.


5. I was 22 when I found out I had a genetically inherited disease called Neurofibromatosis 1.I found out by accident. Even though I was a registered nurse and had completed a 3yr full time university equivalent Nursing course.
   I honestly found out by snooping & reading a Newsletter on my Aunt's kitchen table.Her 2yr daughter(my cousin) has just had major brain surgery to remove a tumour from her optic nerve. It left her blind in that eye.
   The newsletter was from the Neurofibromatosis Assoc of Australia ...I started to read it out of curiosity.Within a 30 secs I realised the truth. It was ME, they were describing.There was no Dr Goggle or Internet but I knew from what I'd read that it was a potentially horrible neurological disorder.
   It explained my numerous 'hideous' birthmarks [cafe au lait spots] and a few odd lumps I had.
   
   Just a few months before my 'young' Uncle K, had died in a nursing home at 31yrs of age. He had a benign [non cancerous] brain tumour but surgery had debilitated him and broken him. Surgery and complications from blocked brain shunts left him physically handicapped , ? incontinent , barely able to walk or talk or swallow properly. My elderly grandparents had no choice but to admit him to a nursing home.K died 3 wks later - l think it was a seizure not from the tumour .I didn't know it then but suddenly I knew K had NF1 most definitely. I was in shock.
   
   Once I got home (to a house I shared with 2 girls) I locked myself up in my room at the back of the house.Deeply depressed. Alone, I cried and I barely talked to anyone for a week.I didn't know how to tell my then boyfriend (now my hubby of almost 20yrs) let alone deal with it . I was a shift worker so my house mates didn't worry that I wasn't around. They got from work late and left early.
   
   I decided I had to move on with things and not let it defeat me. I made some appointments , got myself checked by a neurologist and broke the news to my boyfriend (my DH)
   He said he didn't care, he still loved me ...this I think was my greatest concern apart from the NF1.
   
   He told his mother, who at the time had her concerns I hadn't explained it fully to him.Her neighbour was a Paediatrician. He had given worst case scenarios.
   I HAD...honestly told him everything , in terms of children having 50% chance of inheriting it through me and what I might face.
   
   It didn't break us.We got engaged 2 months later and married 7 months after that in 1990.
   
   We saw a Geneticist & genetic counsellor regarding future children ,They did not advise whether or not to have children but explained the 'facts & chances' and consequences of doing so.
   
   About 2 years later we decided to try for at least one child . We had a 50% chance of having unaffected children too, as well NF1 was very variable in the way it affected people and mostly treatable. Though the cosmetic things you learn to live with you can't hide them.
   Whatever happened we would manage, together.
   I never discussed it with my family.
   If you saw me walking down the street you probably wouldn't know I had NF.Some others are less fortunate as they have severe facial disfigurement or other disfiguring tumours . Close up now you can see a few lumps & bumps. Nekkid (of course that isn't going to happen) ... I now have thousands of small lumps/freckling on my torso, arms and even a large neurofibroma in my left thigh the size of a tennisball.
6. Getting pregnant -it didn't happen with a bang like we thought it would. Though NF doesn't affect fertility. We briefly investigated our IVF options in 1993.Then we decided instead to try adoption . In Oct 1993 we started the ball rolling after I heard a radio advertisement :).
   In April 1994 we passed our interviews and 'graduated' to the waiting pool of 'adoptive parents'.
   
   In July 1994 we got 'offered'our son (now 16), we were the adoption agency's second choice (the first couple declined because he was 13 months old already though in the newborn program).It was the day after we just back from a 1 week island holiday. We jumped at the chance , though because I didn't have my hearing aid in or it wasn't working , I hardly heard what they said.He was a beautiful baby I couldn't understand why his mother relinquished him.
   
   We bought him home in August 1994. Six months later Feb 1995 a judge in his chambers signed the adoption order ....most coincidentally on our 5th wedding anniversary.
   
   We had the opportunity to adopt a 2nd child. We went to the preparation course when DS was 3. In the end we /I couldn't face taking someone else's chance away from them.I.e. being greedy to want 2 children when others were waiting on one child to complete their family. I was still hoping if we relaxed and adopted 1 child getting pregnant would automatically follow ...as they say (I wish I had a sarcasm font).
   So we had ditched all contraception ... infertility has its benefits!
   
   Here ends part 1 (bet you are glad)...part 2 to follow.
   ♥
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Reasons to be grateful

Every day I am reminded how lucky I am. I find it can be such a mood lifter to focus on the good things that you have in your life when you feel anything but ...

An attitude shift = mood lift.

Still, lately I just never feel as if I’m 'winning' and that everything is in chaos.

Reflecting, as 'you' do, on the bad things does nothing but make me melancholy. I want to look forward and live in moment enjoying every day I can .

Yes, things still go wrong and I feel like sometimes I could scream or cry ... and of course , I do , (the conjoined twins story made me tear up so much). I feel awful and regret it when I yell and get cross with my little boys though.

Stress builds up in me. I get all 'woe is me' , till I tell myself I am so lucky. I have all I need today (well I wouldn't mind a personal assistant chef & cleaner a few more 0o's) .

Yes, most of all , I wish I didn't have NF1. (no it's not no ef'n idea) I wish my sweet Sam didn't have it (and other family members) .That, I think, is what does it, makes me depressed and scared for my future.

As I spend my life rushing from one thing to the next, I know I am missing so much and yet it is hard to slow down and be grateful for the small things some days.

Days of Grace 26/365

1. Special friends and random acts of kindness (RAKs) or acts of random kindness (ARKs)
2. Books and a great local library (though been waiitng months for My Sister's Keeper)
   
3. The rain, ~ I hope it is filling the dams on my FIL's farm.
4. Kisses & hugs," I love you' from small boys and "I'm sorry" from a bigger boy.
5. It's Friday tomorrow and you know what follows...

♥

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Sticks and stones

I had already planned to write on bullying sometime during November, tonight I realised I missed the SBS program on Bullying. It's been on my mind.

Tonight at Little athletics a 4 yr kid was calling Sam, who wears glasses , glasses boy ! I didn't worry too much and Sam didn't even notice, but I did ! I wanted to cry for him. It's starting. I can't bear the thought that he will be a victim of bullying ...not just because of his glasses.

As a consequence of having NF1 (neurofibromatosis) though I didn't know it was called NF then , I 'suffered' bullying all through my school life.

I learned to live and deal with it. I can't even tell you the names they called me, oh I remember a few of them, I just don't want to tell you.

The birthmarks known as Cafe au lait are flat milky coffee irregular shaped 'spots'.They were the main reason. I had a large one down my left arm and numerous other ones large than 50 c piece and spotty freckling.

In primary school it was mainly name calling and sometimes a little physical abuse, hair pulling, chasing (fearful not playful) and spitting and like Rudolph they never let me play their games. Exclusion from play didn't hurt me but it scarred me emotionally. I was smart and I relished working hard to gain the academic awards to soothe my self esteem.

When I was 10, I had to wear glasses and this gave them another reason to taunt me. I also had a turn in my eye, I was 'cross eyed'.

This was due to an accident at school when I was 8. I suffered a head injury , and a black eye when a bigger child knocked me over. This was an accident I remember it. Part of my retina detached and it wasn't detected.I am technically blind in my right eye with very slight peripheral vision. My eye still has a noticeable turn despite surgery to cosmetically 'straighten' it at 16 & 21.

I had a few friends over my primary years, the one main one lived across the road from school and she went home for lunch every day. We lost touch when we went to different high schools. We were both quite intelligent too.She had the additional trait of being 'bossy' so she had her own dramas with other kids. It wasn't an easy friendship ;).

I was always in the last couple of kids when it came to picking teams and I was just glad I had an excuse not to do school swimming...thank God for ear infections. Crazy but true!

In high school most of the same bullies went there too. The girls were bitches and merciless.So were the boys. I just had a thick 'ugly' skin.Thankfully, by the middle of yr7 I found a group of friends. There were 5 of us in our posse. I am still very good friends with 2 of them today; 30 years of wonderful friendship.

I still decided not to attend my yr 10 formal and my yr12.

My posse of friends all left school in yr10. We were all around 16yrs. It was a very lonely 2 yrs as I finished my HSC (higher school certificate). I was once again excluded and alone. I was laughed at behind my back, and I could tell they didn't like me in their 'group' projects etc. but it wasn't physical by my mid teens. I ignored it.

What else could I do, I was always on the fringes. I went home for lunch, often, though it took me 10 mins to run home, 5 mins to make & scoff a sandwich and then 10 mins to run back. Rather this, than be alone and seen to be alone.

I lived for the weekends when I had my old 'school' friends again and a new friend I made, L. I met L when we were both on our family holidays. We were both 16, she was turning 17 in 2 wks and got her drivers licence. She invited me to try a new church , I became a Christian and I saw things in a new light. I didn't feel so damaged. I made new friends outside school. So school , for me , was a place just for education.

L was my transport everywhere, youth groups, church and social outings. L is still a good friend but sadly she lives 2-3 hrs away and busy with her young family. Once we were housemates for a year and she was my bridesmaid.

L, K & W looked beyond my imperfections and I am so thankful for all my friends they saved from from despair. Still I wasn't diagnosed with neurofibromatosis till I was 22 . I just thought I had terrible excess of birthmarks.

I worry now for Sam and his cafe au lait spots. Will they both get taunted because of me and the way I look ? I have more bumps and lumps coming up everywhere. I hate it. I have always worked harder to fit into groups I still feel the stares.

I worry will Sam be strong enough to deal and cope with bullies ?

I am so thankful his twin will at least be by his side, so he won't be lonely in the playground, so he will have someone to back him up, maybe help him protect himself and to pick him for his team. They have each other. Already I can see Joel has a protective nature and is looking after Sam. I can only hope...

♥

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Shades of Black

I have been desparately looking for the light...at the end of tunnel (I was told due to the GFC they have switched it off )

Lately , I find it hard to know what to write about. I have so many things I am juggling and many I can't blog about or don't want to. I don't like to put my fears in writing least they come back to haunt and taunt me.

I feel very anxious about my Neurofibromatosis and I don't know what to do. I read inspiring stories like this fellow and also Reggie Bibbs.(I am not affected by facial tumours in this way) I want to cheer their strength and tenacity for thriving and living life to the full, at the same time as I'm feeling depressed about the future.

I feel a lot of guilt.

I recently read Jodi Picoult's 'Second Glance' ... one of the themes in the book was about genetics. It briefly, in fiction (but definitely with supporting factual information) detailed how at various times in history people have been sterilised against their will (or murdered) for the purposes of 'wiping problematic citizens from the population'. Eugenics.

Nazi eugenics or racial hygiene was practiced by Hitler and even today genocide is common place in some countries, purely racially motivated.

Preimplantation genetic diagnosis was also mentioned in the context of parents chosing embryos so that they are unaffected by genetic diseases or of a sex that cannot pass on inherited diseases. The ethics of it all both scares me and encourages me. I honestly don't know how I would feel if I had to make these decisions.

I would give anything not to have NF in my family but at the same time what would the world be like if we were all perfect. So many of us are different and do not fit in because in the eyes of the world we are less attractive. Beauty (and body perfection) is foremost, a quality that makes the world revolve, billions of $ are spent on attaining beauty and the celebration of it .

Billion$ more on counselling for those who feel they fall short of the mark. Others starve themselves thin or undergo surgery to correct imperfections.

Does having imperfections or disabilities make us less valuable or less likely to be loved?

What if society comes to the point that we disregard every baby not born perfect or wipe them all out while they are but a few cells...or later on. I have to say now that those parents who face terminal diagnoses for their baby during pregnancy have my heartfelt respect. I would not want to walk in their shoes ever ...I am just saying .

What if we weren't given a choice and all those identified as "life unworthy of life" were terminated. It is all too terrifying.

I still wish I was normal and so was my son.

PGD was not an option for us ...

So is black a shade or a colour ?

Black is a Colour. Black absorbs all frequencies of light in the visible spectrum producing the colour black. The black object does not emit or reflect light.

Black is a Shade. Although Black is primarily considered a colour, Black can also be part of the Achromatic colour sets - Grey, (or Gray) is a range of tints and shades ranging from Black to White.

so the argument here is not "Is it a shade or a colour" at all...~It is both!

LIVE every moment ღ♥¸.•*¨`*. ¸.•
LAUGH every day ღ♥¸.•*¨`*. ¸.•
LOVE beyond words ღ♥¸.•*¨`*.¸.•
BE Grateful for what You have¸.•*¨`*.¸.♥☼ and I AM !

♥

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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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