Thursday, 10 December 2009

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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