Sunday, October 10, 2010

More pesky angels

Stacy and I went and watched a movie this week. Stacy enjoyed the Eat, Pray, Love novel when she read it a couple of years ago. As the movie is now available to be enjoyed in living colour we decided to check it out.

As we cruised out of the theater into a bustling Friday night we ran into our mates Stu and Maylin. Stu was talking in a jolly English accent and gnawing on a big fat US burger, May was weathering the wet conditions with expected grace and charm, despite having a hand dipping into a large and incharge bowl of chips.

Stu looked relieved that it wasn't him exiting Eat, Pray, Love and I don't think he'll be heading out to get the book after we finished talking about it.We hit the road and Maylin hit the chips.

The next afternoon Mr and Mrs Neild Senior were over and we were all dusting and tidying our little hearts out. It was a very productive afternoon, yeah, cleaning! Mid way through the afternoon Dad came back in from a run to the bin with a special delivery package.

The 'Eat' part was on Stu and May last night. What a great Saturday afternoon gift.

We are so loved and supported by all our friends, and the kindness that comes flowing our way is really important to our continued healthy state of mind.

Its impossible for us to record all the beautiful moments of consideration that we experience however every now and then its great to celebrate publicly.

Thanks for everything you give to us folks.

Mike and Stacy

Friday, October 8, 2010

Big Sky 10

Over 4 hectic weeks in late 2009 our extended Brisbane family planned, prepared and delivered 3 separate and fantastic fund raising events. Stacy's Starlight mates organised a themed trivia night which you can read about in the following blog post.

Starlight -

Stacy's 21 year old adopted little sister Liela put on a fun run in the Roma St parklands that was enjoyed by around 200 people. There is a reflection in the link below.

Fun Run and Big Sky 9s -

Kicking it all off on the last weekend in October last year our Frisbee friends, Mat, Sandra, Gen and Tony coordinated Big Sky 9s, a single day frisbee tournament including roughly 150 frisbee players.

It was a spectacular month of community support. Stacy and I felt so loved at the time, and continue to feel loved now. The money raised allowed us to take our recent big trip over to the States to visit Stacy's family and the spend 8 weeks receiving treatment in Reno. We also went on a couple of cheeky trips and upgraded the 6 year old $150 second hand TV we owned.  Excellent.

It is one year later now and the Frisbee community is coming together again to celebrate and support Stacy in her battle. Big Sky 10 will be run on October 30th this year. There are already over 100 Frisbee players registered on 12 teams with more to register in the mext few weeks. The Gap Soccer club grounds are getting plenty of rain which will hopefully cooperate and not rain on Saturday the 30th.

I recommend heading over to the Big Sky blog to check out all the info and it's worth scrolling down a bit to see a few photos from last year.

All our non frisbee friends are invited to come on the day and enjoy the action, there will also be a social function later in the evening at the club house next to the fields which everyone is welcome to attend.

While the heavy planning and organising is being done by the Gen, Sandra, Mat and Tony, 3 of these folks are playing in the tournament on the Stacy's All Stars team.  Consequently there are some administrative tasks that will need to be completed on the day that Gen could use a hand with.

This is a call for our mates who wont be playing on the day to contribute if they would like. I understand the kind of things that could be helped with are raffle type stuff (in the lead up as well as on the day), collecting team fees and registration on the morning of the tournament, other general admin gear - i'm really to sure. Gen however is sure and would, i'm sure, appreciate some help.

If you would like to get involved the send Gen an email or give her a call on, 0401 889 453

Stacy and I are getting really excited for Big Sky 10s (maybe me a little more than Stace) and we hope to see many of you on the day to enjoy the action and support Stacy's All Stars in our bid to defend the title.

Tuesday, October 5, 2010

Pesky angels

There they go again, just storming in without asking, like they own the place.
Rearranging furniture, spit polishing all the shiny things that have gone dull.
Piecing together all the broken parts with wads of celestial chewing gum and golden thread.
I tell you these angels are pesky ones.

Sunday, October 3, 2010

How are you really doing?

Many people have been asking me 'how are you?' I say, 'good thanks' and we move on with our day.

The reality is different however and I thought despite how hard it is I should tell you how I'm really doing.

The things I don't say to you all when you ask me how its all going are:
Today like everyday at the moment is a struggle to get through.

Having MND is like being in a glass coffin.

I can see what is going on in the world but I cant participate. Mike and I have all this time on our hands which I would normally fill with activities like sending emails or organising the house, doing craft, etc except my hands don't work. As a result I have all this time and all these things to do but I cant do them. I used to participate in life and now I feel like a spectator.

You can imagine how frustrating that would be. My voice doesn't work as well as it used to so sometimes people don't understand me. It is now hard to hang out with friends or call people over in the states as talking on the phone is difficult. Not being able to express myself as quickly and clearly as I want to makes me feel a bit cut off.

I think it is impossible for people to understand what my days are like.

I still get out of bed everyday and go out into the world. I still laugh at funny things and definitely haven't lost my ability to enjoy tasty food.

So how are we doing really? As good as we can do.