Wordless Wednesday 29 February

My post today is my part to create just a little awareness of International Rare Disease Day. 

Wednesday 29 February is a once in 1461 days occurrence. The extra day in a leap-year. And it is NZ Rare Disease Day.

Most rare diseases occur much less frequently than leap-days. One in 2000 to one in hundreds of thousands is the pattern for more than 7000 rare diseases. Individually they are rare but together they are common, affecting an estimated 8% of the entire population. If spread evenly that would be one in twelve households affected by a rare disease.  If you want to find out some more try here

As some of you are aware one of my children fits this category.  He  has Cystinosis a rare metabolic condition which effects many of the bodies organs.  At the moment the disease is evident in his kidneys and eyes.  Along with this he has some secondary conditions...cognative delay being the most significant of them.   He has many doctors who help look after his health and he has regular stays in hospital.

Legally my son is disabled.

So these photos are a celebration of him and all the medical professionals who are part of the team looking after him.

(Hayden just after school showing me the stamp he got for being a good boy at the school he attends)

(Another photo of Hayden enjoying boxes, tape and scissors)

(Of course it would not be Hayden if we did not have a photo of him in hospital.  This visit was in November with a gastro bug.  Three days and four nights in hospital.  Here he is ED while blood tests are done so the right hydration and electrolyte plan can be implimented before being put upstairs into a ward.)

I am linking this post to My Little Drummer Boys.

Did I tell you...

Did I tell you that there is a budding flautist in our house.  My tone deaf daughter has to learn an instrument for the next 4 years at school.  I suggest she might be best to learn a untuned percussion instrument.  School picked the flute for her to learn.


At least after two weeks she looks the part but no notes to be heard.  Plenty of wind though.

Monday Menu 27 February

The end of February is here already.  Here is my menu

Monday  Sweet and sour chicken with noodles ( used the noodles not the rice)

Tuesday  Beef Crockpot

Wednesday  Cold meat and salad

Thursday  marinated lamb on rice with tomato salad

Friday  Fish patties in a burger bun with salad

Saturday  Sausage casserole

Sunday  Leftovers

I am  linking this post up to Im an Organizing Junkie

Soliloquy

So my Little Word, Breathe, is making steps forward.  As part of my art journaling journey I needed to write something pertaining to a soliloquy.  I chose to write a letter.  Actually it turned out to be something very deep from inside me. 

I am sure learning to stop and look at my life just a little more carefully this year.

(The credits for this page a long with a closer look at the journaling can be found here at Nuts4Digi)

Look there Grandad

Hayden makes us smile frequently.  This was just one of those moments that he shows where is cognative level is at.

Hayden (talking into the phone)  

(Ok his hair looks bad.  He attempted to cut it by himself)

 Hello Grandad.....yes .....yes...... Hayden said the F word.   Yes he said the naughty word..........Grandad can you see the plane in the sky....there it is.  ...look it is a cesnar.

Wordless Wednesday 22 February

Here is another week of Wordless Wednesday.

Needless to say school athletics day can be a heap of fun.

Lets not forget the green hair colour and the green finger nails.

I am linking this post up to My Little Drummer Boys.

The Grassy Knoll

The yard at our house is a work in progress.  Now we have the paddock/ now lawn under control I am about to tackle the grassy knoll.  Really this part of our yard is the large pile of clay with a little top soil mixed in that is leftover from digging the hole for the water tank we installed. 

(Here the digger is creating the pile of clay)

It was too difficult to spread out over my uneven lawn places so I have decided that a grass knoll is the way to go.....the way to make the very unsightly space look more pleasing to the eye.

To be honest it was difficult to even imagine that anything would grow on clay I thought that I would start with a sample area as we were getting very close to summer and the idea that clay would induce plant growth at any time was tricky to imagine.

So I purchase a little wild seed pack and sprinkled, watered and then crossed my fingers and wondered what would happen.  By some miracle some grass grew. Of course the space was still unsightly but just imagine what it looked like with nothing except a clay layer.

A little disappointed that no wild flowers were there.  That was all before Christmas.  Now it is the end of February and I find the wild flowers still small, but slowly emerging from their clay bed.

If you look closely you can see a few specks of colour from the flowers. 

So what does that mean for my grass knoll.  I think that come autumn I am going to treat my clay with a little organic matter and mow the grass once the flowers have seeded.  I now a little more research is needed and come next spring I am going to give this another go.  I am sure in this part of my yard a little wild flower spot will look spectacular.  I guess though like with any good thing it is going to take some time to make it work just how I imagine.

Monday Menu 20 February

Gosh how quickly the weeks are going.  February is nearly over and it feels like summer has not really arrived here.

Monday  Left over cold meat and green salad

Tuesday  Beef barbacoa Crockpot

Wednesday  spaghetti bolignaise

Thursday   lamb cutlets with baked potato and salad greens

Friday  Homemade pizza

Saturday  tuna burgers homemade

Sunday  left overs

I am linking this post to I'm an Organising Junkie

I am so lucky

I am a very lucky person as  my DH gave me a smart phone for Christmas.  It is the android variety phone. 

I am still learning to drive the said item but I am really keen to work on using a digital calendar system so that I can get rid of the really large diary I lug around every day.  After all who wouldn't want a slim line easy to use diary when you lug this around....it is only the beginning of the year and it is feeling heavy.  This is my diary towards the end of last year.

Now I know that it will be difficult to get rid of the paper diary.  I keep a lot of paper work in there especially paper work I need for Hayden but other little things. 

When I sat to look at what I need the list looked like this

• record of days I have worked and will be working
• DH roster
• Hayden appointments
• list of things to do

Well it is not a large list but each part playing an important part of my week and importantly in my record keeping. 

I am really struggling to find the best application.  Perhaps there is not one for me but I am determind that there must be one that will look after a lot of the stuff I write down.

Hmmm what do you think?  Are there any applications that I should give a try?

Wordless Wednesday 15 February

I am trying to create a wild flower filled grassy knoll.  I bought some wild flower seeds to test the idea and this is just one of the surprises we got.  I will have to blog about this some more at a later stage.  I have no idea what this flower is but boy it is a great colour against my grass.

I am linking this post to My Little Drummer Boys

Just sometimes a heart is all it takes

McKenzie thought that she would show how much she loved us but making this and holding it up to us with the sign language of I love you.

I am still smiling about it especially as it was coincidental as we don't really do Valentines Day in house....well not in any really big way.

Monday Menu 13 February

Here is this weeks menu.  A little late but I promise it was written down as I went to the supermarket today.

Monday  steak, baked potato and peas

Tuesday  steak n kidney stew on rice.

Wednesday  cold meat and salad with baked potato

Thursday  baked falafel with salad on rice.

Friday  noodly dinner

Saturday  Of to a dinner party

Sunday  left overs

I am linking this to I'm an Organising Junkie

Propinquity

I know a tricky word was what I needed to work with on the part of my Art Journalling adventure and a new one to me.  So here is the meaning for Propinquity

After about a weeks sub conscious break I thought what this really meant to me.  I really wanted to show how I was trying to celebrate the here and now, the everyday moments.

This is the page I came up with

(the credits can be found here)

Sometimes they say things that really make me think

As you know my son Hayden goes to a school for children/ young people who are disabled.

Yesterday I got a txt from his wonderful teacher aide (Nat)

Nat txt    just got 2 tell u hayden was in trouble with K (teacher) for pushing 2 be 1st.  He knows he gets away with murder with me so he complains about these people and I ignored him.  Thn he says these women are studpid.

Me txt     Oh he won't learn but fancy women being stupid he didn't learn that from me ha ha

Nat txt     yes I know.  we thougth it to be a classic :-)

The funny thing about this is that Haydens brain opperates at about a 2 - 3 year old.  He has trouble learning things accademic but sometimes he drags things out of his memory that I have no idea where he got it from.  In fact I don't even know that any 3 year old would have been able to come up with such a statement.

I have to say I had a little chuckle about it knowing full well that I am a 'Girls can do anything' type of gal.

(Here is Hayden with his box, scissors and tape)

What we do for love

Just sometimes it is the little and unwritten things that we do show our children how much we love them.  Even if it means getting up really early so they can catch the bus to school. 

I took this photo about 10 minutes after I got up and then got McKenzie out of bed so she is not rushing too much to get ready to leave the house in the morning.

Wordless Wednesday 8 February

Nothing like a little cooling down on a hot summers day.  I love that this photo is so full of action right down to the fact that Hayden, who has cystinosis which makes him very thirsty all the time, is capturing the water on his tongue.

I am linking this post to My Little Drummer Boys.

Art Journaling the Adventure

I decided this year that I would challenge my art skills somewhat and turn my hand to Art Journaling.  I thought that to help my endeavours to reflect on my life just a little more.  My journaling will be linked to my Little Word, Breathe, for this year.

I know that this technique of scrapbooking is stretching my skills a lot but I think that this something that I need to do for many reasons.

So without further ado here they are, my first Art pages.  Well I call them art.

Here is my mind in confusion and being challenged.

(Credits here)

This page is an affirmation letter to myself

(Credits here)

The next prompt was Clandestine.  I chose to share 6 things about myself.

(Credits here)

The interesting thing is that it took me absolutely ages to create these pages.  I sat at my computer looking at a blank PSE page.  It gave me a creative block.  I guess I was paralysed with fear that I could not find my ideas within this new technique I am trying.

Monday Menu 6 February

Here is the menu just in time for the full swing of the school year to hit my house.  Yes that means that I will feel like a full time taxi driver.

So here we go with DH away and me doing things solo at the moment

Monday  Cold meat and salad especially for a public holiday here in New Zealand

Tuesday  Beef Nacho

Wednesday  fried rice (easy the recipe says...I guess I will find out this week)

Thursday  falafel pita pockets

Friday  Noodly Dinner

Saturday  pesto and spaghetti

Sunday   leftovers.

I am linking this to I'm an Organising Junkie

Beginning of the school Year.

With a rush back into reality the school year has begun.  There will be no looking back, new adventures to be had, new teachers to get used to and of course and a whole new world of knowledge to explore.  Each of my children were excited about starting school.  Even Hayden who is difficult to understand or even know what he remembers or even understands at times seemed excited.  Sadly we don't know what he is doing at school and he is unable to have that discussion with us.  McKenzie happily went off to College, Andre stayed at the same school but for the first time he is at school without McKenzie there.

So here they are with the obligatory first day photo.  It was fun.  We had to take it at the end of the day because McKenzie left for school just a little early for the boys.

January's Summary In Numbers

I have thought about how I summarise each month and how to keep it easy and quick to assemble.  So I have discovered Making Notes on Paper and decided to participate in My Month in Numbers.

Here is my inaugural version of this endeavour.  Watch out because I love numbers and how they work so I am sure I will get a more interesting array of numbers to share.

1  is the number of birthdays in our family this month

Andre celebrated his eight birthday and enjoyed every moment of it with his choice of food which included dinner out.



10 is the number of people who went camping. and 6 was the number of children present.

Our really good friends and us went camping at Ohiwa Beach.  We had such a good time with them and can't wait for next year to arrive so we can do this again.

8 is the number of trailer loads of dry wood we moved ready for winter and keeping us warm.

I know we are early but summer is the right time to collect the wood so it doesn't smoke us out when we really need it.





4 is the number of days fishing that were had while we were on holiday.  Apparently the locals favourite spot.  9 was the most successful day fishing.....catch, look, release.

Wordless Wednesday 1 February

My children got to experience cockle collecting for the first time during the holidays.  This is where I discovered that Andre is a catch, look and release type of child and McKenzie was real keen to see what they tasted like when quickly cooked on the barbeque.

You can see that there are even a few barnacles attached to these shellfish that are nothing more than 3 - 4 cm wide.  The rules state that you are not allowed to collect more than 150 in one go.  Incase you are interested there is a whole lot of effort for something that tastes sandy.  Yuck.

I am linking my post to My Little Drummer Boys