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!

Going viral....

Well at least that was my target!  Aim for 250 000 YouTube views and get some world wide recognition for Duchenne Muscular Dystrophy.
Cooper's Story - DMD
Well its currently at 645 views after 4 days of being posted.  It wasn't until I sat down and thought about it that I realised that 600 views is huge!  That's 600 people that may or may not know about Duchenne.  If at least one of the 600 had never heard about Duchenne Muscular Dystrophy than I have helped the DMD community become that little more stronger.

The book I have contributed our story to, "Saving Our Sons and Daughters II" has finally arrived in Australia.  Yippee!!  Apologies to all those that had purchased back in Feb.  That was one long wait! I hope it was worth it.  And to everyone that has purchased I thank you from the bottom of my heart.  The commission I've received is going directly to Cooper's care.

You are still able to purchase the book at ... http://www.mistyvanderweele.com/sosd2orderpage/?ap_id=Anderton 
be aware that the book is coming from the US and can take a couple of weeks for delivery.

I'm an Author!!

Well I cannot believe I've done it.  I have written our family's story on Cooper's diagnosis with Duchenne Muscular Dystrophy.
In collaboration with 39 other people around the world our stories have been published in a book titled "Saving Our Sons and Daughter's II".  Pre-sale began 1 week ago and my friends an family have purchased 12 copies aleady!
I can't thank all our friends and family enough for your constant support.  What began as therapy for me has turned into financial support for Cooper!!!

See the link to the left for book purchases!!!

As a family we started a group called 'Cooper's Crew' too participate in The Age Run Melbourne.
In the beginning I thought that we would have maybe 5 members participating.  The guidelines for setting a target said to aim high. So I figured we may be able to raise $2000 for the Duchenne Foundation, so I set our target high...$5000.

As of January 24th, 20 days after registering we hit the $5000 mark!  We currently have a tally of $6200 and we have a whopping 28 members of Cooper's Crew.

Matthew and I are just so excited that we have been able to make a positive impact for the Duchenne Foundation who contiue to help Australian Boys with so much support, research, advice and equipment.

If  you would like to visit our fundraising page here is the link The Age: Run Melbourne Cooper's Crew

Christmas 2011

Well Christmas began with farewells at Kinder! Our kids loved the year they spent with Shar and Jo...but I tend to think we Mums will miss them more!

And those of you that know Reese, our 17 month old daughter, will know that she thinks she's 11.

But Santa was so initimidated by her screams that he had to hide behind his own chair!