Cooper starts school..

On the 4th of February, Mitchell started his first day of Grade 1 and Cooper his first day of Prep at school (Prep being Victoria, Australia's first year of schooling).


My how quickly they grow!  Cooper had been looking forward to being as big as his brother.  He managed first term ok, tiring quickly like most Preps.  But he had hurdles to overcome as well!

Dealing with his friends being told that he has Duchenne Muscular Dystrophy for one.  His mum bringing his motorised scooter in and explaining that Cooper needs to use it because he has weak muscles would be the second...

 Consequently after explaining all of these things to the Preps, a majority excitedly explained that they too had 'weak muscles.'  I did explain that their weak muscles can feel better after a good nights sleep.  However they still insisted that their muscles were so weak that they to would need a scooter as well. The only way to curb the excitement was to explain that Cooper, and his family, had to have a blood test with a needle and then a doctor told us that only Cooper had the messages in his blood explaining that he had weak muscles.  I was careful to ensure I didn't scare Cooper's classmates about needles, but emphasised that a Doctor has to 'read the messages' in their blood. 

But he finished the term on a high note at least...  One of the concerns for Mitchell has been "what will happen when we have the school cross country?  How will Cooper compete?"
I had worked out between Cooper and his teacher that he would take photos at the finish line. But when I got to the event and the Preps had all lined up to do one lap of the school oval, I was informed that Cooper was 'hiding behind the bush about 6 metres from the finish line'.  I initially thought that was a bit unfair for the other kids having Cooper scare them on the way around. 
I didn't realise that as the competitiors came around the bend for the finish line a beautiful Grade 6 girl, led Cooper in front of the others to cross the finish line first!  It was an amazing experience watching his big beaming smile as he ran across.  Lucky I had my sunglasses on to hide the emotion.  But when I saw the actual winner of the Cross Country that afternoon, I made sure that I congratulated his effort and commented at what an athlete he was, coming first! 
For as much as I appreciated how much the school cares for and caters to Cooper's needs, I'm always mindful of the considerations of the other children in his class. 

Life's a Beach

All so different and unique! They love the beach and just playing for the entire day.  

Mitchell loves to prove to himself how athletic he is and then finishes the days with quiet moments floating in the shallows.

Cooper finds it hard to find his enjoyment.  He tries the skiffle board, the boat, using the net to catch the little fish in the shallows...and after a while he always goes back to simply playing in the sand! That is what brings him enjoyment.  He stops silently comparing himself to his brother and finds his niche'.

Then there's Reese... She just runs, smiles, splashes and loves it all.  Especially the Mr Whippy van, where she asks Granny.  Big eyes, innocent pleading smile which would melt any heart and of course gets her an ice-cream.

They never want to leave... so we don't.  Just like when I grew up in Rye...someone goes to collect the fish n chips and then the battle to digest the salt rather than the sand begins. 

Oh the memories I have that I get to now share with my own children...What a gift to share these experiences with them.

Miracles do happen...

These photos were taken in November 2012...it was the closest Cooper had been to riding a bike really fast.  The smile could not be wiped off his face and it was quite amusing to watch Mitchell push the bike (with Cooper) around the uphill corners.

Then in December shortly after Christmas, Cooper was elated to have the opportunity to ride his friend Jack's bike.  It was made for a child with special needs before Jack owned it which made it easier to pedal.  We could not get Cooper off the bike all afternoon.  (Thanks again to Jack who was extremely understanding)!  This is Cooper riding on his own for the very first time...

After returning home we have seen Cooper try to get on various bikes and tricycles and has successfully been able to pedal.  So after a special trip with Dad...Cooper has his own bike. 

After a trip to the local netball courts...Cooper's now flying along...

(We still had to contend with the frustration he has at not being as good as his brother and finding things challenging...but he was riding... on his own!)

I love my kids!

Life's a Roller Coaster

You can ask me on one day.. how are you going and I will reply with all smiles "Good".
But in the back of my head I have been thinking, Did Cooper have his medication today? Shoud I be concerned about his attitude at blending in and striving to 'NOT' be different than his peers?
have we done his exercises properly and often enough?  Is his flexibility remaining the same or is he starting to decline? Question after question after question!
But that's a parent's demand in dealing with Duchenne! 

But I do have to share this with all my friends and family. 

Please note the link to the blog below is intended to be an honest and real account of what life is like as time goes on...
This blog was written by a good friend Sharyn who's son also has Duchenne.  It was intended for people to read and learn about the realistic side of this disease.

We are so lucky to have the supportive family and friends that we have.

Sharyn's blog entry is titled:  

Duchenne Without The Sugar Coating

It is not Cooper's Life now but will be in the future.

On a brighter note...
I will be attending the Duchenne Foundation Conference: Riding the Wave from October 4th -6th on the Gold Coast!  So I hope to learn as much as possible while there!

Hope to post more soon!
Donna xxx

Run Melbourne 2012 for the Duchenne Foundation

Cooper's Crew July 15th 2012

I cannot believe it has been 2 weeks since we competed in Run Melbourne 2012.  The weather forecast predicted 13 degrees celsius and showers.  But someone was definitely looking out for us as the rain clouds passed around the city for the morning.

Many arrived before 7am to take part in the 21km or half Marathon.  9:30pm saw the 10km event begin and the majority of the crew managed the 5km quite successfully. 

Cooper found it a little overwhelming he mentioned at one point that "People I knew from everywhere were there!"  he knew we had been preparing for this day for 6 months but when it came to it I don't think he realised family from all sides, friends, school and kinder mum's, his Kinder assistant or KBFF (kinder best friend forever) would be there. To say he felt loved was an understatement.

We are so proud of Mitchell and his cousin Grace for participating in the Kids Run Melbourne 3km fun run the day before.  They completed their couse in a speedy 18mins!!!

The flip side of so much support was the idea that crept in to Cooper's understanding was that...Weak Muscles must be pretty important for all these people wanting to be part of Cooper's Crew.

Cooper did come home with 7 race medals that day.  He was given only one by race officials when he crossed the finish line in the pram Dad was pushing, but he was apparently enjoying the clinking sound so much that other Cooper's Crew team mates gave him theirs.

People had given their all in competing, their time, energy and stamina...and they just kept on giving...including their medals!  

Again, from the bottom of my heart I cannot thank everyone who supported us in competing, donating, the encouraging messages the 'likes' to Facebook posts or the words of encouragement before the big day.

It is thanks to you all that Cooper's Crew managed to raise $15 450 for the Duchenne Foundation.

Words could never really convey the depth of gratitude Matthew and I felt on the day, nor continue to feel.

With the hardship our Cooper has in front of him, we know we are the lucky ones with the amazing family and friends we have to support us!

Thank you

the Andertons



Life....

So, I often have many people come up to me and say
"Donna, you're incredible.  All that you do and your so positive!" 
Then I'm surrounded by incredible.  All the Mums and Dads of children with Duchenne Muscular Dystrophy.  Not to mention the friends and family that we rely on for support. 

We are strong but not always.  Unfortunately the mask you see when we are in public can often slip or crack.  It is somewhat removed at night as we climb into bed and reapplied in the morning like makeup to start the day!

We have to be positive!  We have to focus on our children, all our children.  But behind the mask we are often contemplating like all parents, Are we doing the right thing?  Are we offering enough normal? But are we considering the consequences of daily activities? Is he over tired from daily activities or is he beginning to struggle more?  And all these considerations to some degree are felt by all parents.  The pressure however that we place on ourselves when you have a child with special needs seems to just magnify those considerations.

We smile and carry on, because we strive to be normal parents!  The thoughts, the strains and the struggles are always in the back of our heads, 24/7 as they say!

However I am not on my own, I know many people who have children with different needs and specialised requirements.  I am beginning to see this as the new normal!  Normal is having a child with special requirements.  So if this is the new normal than we are creating one of the most accepted and well adjusted generation ever.  We now all know someone with something!  We adapt, include and appreciate those with different needs. 

This is the ideal at least I like to focus on.  That at least must be the reason for all of the new diagnoses that are being exclaimed daily. 

We are all different and all unique and some may not be on this earth as long as others, and some may need assistance to struggle to live and appreciate all the world has to offer.  But it is life!  It is treasured and I (yes and you too Matthew) created the 3 little lives in my life.  What a privilege to be there at the beginning! My greatest achievement ever!

Less than 10 weeks to go....

Cooper's crew we have less than 10 weeks until we compete in Run Melbourne. we have chosen the Duchenne Foundation as our chosen charity.  Their support and encouragement I must say has been exceptional and so overwhelming...in a good way!
Deb Robins and Pam Bianchi have been on the phone offering support and resources along the way.  Matthew and I are extremely grateful..

T-shirts have been designed and are now selling to support Cooper's Crew...

With less than 10 weeks to go I can announce I have started training....which I might add is not easy to do with 3 little munchkins.  But with my pram and some good friends we make it around a local Birdsland walk in one piece and believe it or not still standing.  I don't know how some members of Cooper's Crew have actually decided to compete in the 10 km and half Marathon!!!!

Cooper is loving seeing the tally of 'His' crew increase daily.  He believes he has raised the whole $8745 to date.  I suppose in a way he is responsible for the fundraising.  But when Mitchell proudly announces he has raised $500, Cooper replies "Yeah but I've made $8000...what's that number Mum?"

Gotta love kids hey!