Fragile X Awareness Day

Actually I love quite a few people with FXS

Today is Fragile X Awareness Day.

Fragile X is a rare genetic condition that two of my beautiful children are affected by.

It was unknowingly passed on by me to them.  

I also passed it on as a carrier (unaffected) to my eldest daughter.

Like me, she has a 50/50 chance of passing it on to any baby she conceives and if she passed it on, her child would be quite significantly affected.

I kind of have a love/hate relationship with Fragile X.

I hate it because it sometimes affects my life in a bad way - behaviours of the boys, therapies, appointments, the struggle they have with learning, the fears for the future.

In other ways it was something that made me wake up! and finally see my life for what it really was - not that good actually.

What I mean by that is that I was completely career focused, worked with lots of people who where actually not nice people and I felt I was turning into them - not a good thing at all. 

Any when it all came crashing down, I tried to hang on to that shit.  Hmm I really tried hard.  Fuck how brainwashed was I, to try and hold on to complete and utter shit???

And I was not a person I really liked or wanted to be.

It made me see how bloody awful people can be and how absolutely superb others can be.

  

Essentially, the best and worst of humanity.

Being brutally honest, I am incredibly ashamed to say that when I was young I once thought if I ever had a child with a disability, my life would be over and in fact I probably would give the child away.

Seriously, what an ignorant fucking twat I was.

So, some days I hate and despise Fragile X.

WITH PASSION!

But, most days I thank the universe for changing my life, actually making it better, getting me to pull my head out of my arse and to get away from revolting people in my life.

My life certainly isn't over and I love my kids passionately.

And I am really happy with my great life.

Can't ask for much more than that eh?

Best laid plans of mice and men, often go awry.............

I am a planner by nature.  I really like to have a plan about what I am going to do and how I will do it.

I have learn't, over my years of life - but especially over the past 5 years, that the best laid plans often go wrong, have huge issues or will never happen.

I admit, this was (and remains) a incredibly tough life lesson for me to learn.  

I'm getting better at acceptance of things not going to plan as I get older and "stuff" doesn't bother me as much anymore.

I have had a relationship breakup, a new relationship, finding out we were having twins, discovering Fragile X Syndrome and then that some of my children were affected (disabled) from it, losing my "safe government job" of many years because I needed to work part time, changing careers, working part time and so on and on.................

Prior to all the above, I had PLANS that didn't include this happening to me, in my life.

My sister, husband, 2 kids, dog and birds crashed at our place over the past couple of weeks.  They were moving to Queensland permanently, and there was a period of time between moving from their old house and getting into the new one.

We all had an absolute ball!

Then we followed them up to Queensland.  We stayed overnight at Woolgoolga in a bit of a dodgy hotel.  It was clean but needed a lot of work.  The owner told me he had just taken over a week ago and obviously the previous owners had let it get significantly run down.

Unfortunately, Ben got a bit sick on the way up there and vomited in the car and then in the hotel!  Oh the joy.

He seemed fine that night and we carried on to my sisters new lovely place.

Unfortunately, the blow up bed I had wasn't very good and it deflated overnight, which made for a VERY uncomfortable sleep.  The next night I bought a piece of foam for me and sorted out the kids beds, only to have Ben vomit the WHOLE night.

So, I decided to come home because the sleeping arrangements weren't the best and if I didn't get a good nights sleep I didn't want to be driving such a long way home under those circumstances.

Ben only spewed once more in the car on the way home.  We stayed in a nice (but expensive) motel at Nambucca Heads.  I got a good nights sleep ready for the remaining trip home.

So, best laid plans and all that!

The great things were that I learned that the boys travel really well and were very good.

I also learnt:

• Always take a bucket for spewing on a road trip (I only had bags for the first half of the trip and that didn't work out.  Got a bucket at Woolgoola.)
• McDonalds is everywhere and the kids always want it - sigh
• Motels vary wildly in what they offer (ie facewashers, tea, coffee and soap).
• Traffic noise is annoying when you need sleep!

I'm now planning my next road trip to my sisters place for a "proper" stay.  She will by then have beds available and I will be an expert in road trips with the boys.

A great time had overall, even if the plans didn't go to plan!

Half way through 2016 already!

I am amazed that we are now half way through the year already!

June just flew by so quickly.  Another birthday for my eldest daughter Alex and I (we are a week apart).  Another anniversary of the passing of my beautiful stepson Sean, 16 years now.

However, where there is sadness, there is also happiness.

As happened 16 years ago, I found out I was pregnant with my second daughter Jemma right at this time.

We now can announce that Alex is pregnant with my grandchild - a little girl!

(and she doesn't have Fragile X at all).  Due in January.

I'm super EXCITED!

Waiting for genetic testing results is a torture all of it's own, and I don't wish it on anyone.

For my birthday we went to a cafe that makes fancy milkshakes.  The kids loved it.  It was very yummy but not something you would want to have every day.  SO sweet!

Financially it has been a tough month.  

Both our cars needed rego.  Goodbye to over $2k right there.

Someone needed to borrow a few thousand from us.

Both our cars needed new tyres (as the place that put them on didn't wheel balance them correctly - sigh)

We made it through.

I feel like I have lost my mojo though.  Too busy and lots of stress - not a good combo. 

This month I am focusing on getting it back!

I have an exciting month coming up - we are going away on a road trip, having visitors stay over and going to our favourite farm at Courtney's for a fun play day.

Watch for updates!!!

Love to all xx