Close to two years on ...

02.11.2013


Well I've been inspired to write in my blog again, at least a tiny update !
Surprisingly, what I've written is still being read, with a total of just under 95,000 views- totally amazing.
I like to think that maybe this is helping someone struggle through a hard time in their life plus ultimately still getting the word about Mitochondrial Disease out there.

Life is busy with two boys. Our rainbow baby will be ONE is two months. How did that happen ?
One of the things I hate about life is that time still passes by. I know it has too but its hard to grasp that the years go by and people keep 'living' when someone is forever missing.

Stella will have been gone a long ( but fast ) two years in just six weeks. Talk about hard to fathom. Its still hard to even think this is my daughter I am writing about. I still have not actually read through this blog. I bared my soul and wrote in this through the darkest time in all of our lives. I'm glad I did as it helped knowing I had the support but I'm still not ready to 'go back there'.

Anyway on with the update:

Jett will three next year and he's still a sweet darling boy. Loves his mum and dads cuddles and knows his sisters literally the brightest star in the sky ( we look for her each night )
Chase is a scallywag, very loud and boisterous and wanting to do EVERYTHING his big brother is doing. No one can make him laugh like Jett does and if he's not being occupied he's not happy !
My hubby and myself are doing fine. We are probably stronger then ever now and I look forward to what our future holds.

Lastly just a big big thank you ...
Too everyone who supported us...
From when Stella was first rushed to PICU at the Mater, to everyone who supported us while we spent all that time on Ward 7, the 8 months that followed from that first day and to everyone who showed us their love and generosity when Stella passed. Lots of you I know and plenty we didn't.
Oh and a massive thank to all who still comment on my 'Sunday Photo Shares' on her Facebook page (  https://www.facebook.com/stellasgalaxy )  and the people who still private message me telling they think of Stella. or that something reminded them of her. It truly means a lot. Anyone who has lost a child knows that the greatest fear is that they will be forgotten. Each and everyone of you have insured that I can know she's still all in your hearts just as much as she is in all of ours and I thank you for that.

Cxxx

Ripples

19.04.2013

What a story     
                                                                                                                   
Epic highs and unfathomable lows  
                                                                             
Strength, courage, anger, despair, love      
                                                                         
All in this story, my daughters story, my story  
 

Looking back through this blog… it makes me cry & it makes me smile  
                         
Such raw emotion
                                                                                                                 
It’s so hard to read but I’m so glad I started this back in September 2011 
                          
It’s been my virtual diary and was such a great outlet through a lot of our darkest and brightest times
 

It’s been a while since I posted in here. I’ve been gloriously busy with my two beautiful boys

They make me smile and laugh and I'm so thankful for them every second of every day

We talk about their sister, Stella Grace
                                                                                    
She will never be forgotten and now I’m not scared about people ‘forgetting’ her
                   
I know she touched so many hearts and I’m damn proud to call her my daughter, my first born and my star forever shining bright

 

Our baby princess, forever xxx

 

New Love

21.01.2013
 

It’s been a little over a month since I last posted on my blog.

We got through Christmas and New Year’s. Another year not having Stella here for such joyous occasions is still very hard to comprehend.

On a much happier note:
We have some wonderful news…

Stella and Jett’s brother baby arrived on the 7^th January 2013. Chase Riley arrived early morning weighing 9lb 4oz.

He seemed determined to arrive near his sister’s birthdate, now both of them share the birthday week.

He’s a lovely calm boy, just like his brother was.

I am more than certain Miss Stella is now watching over her two brothers, sending down beams of love to us all while we send up all our love every day.
This time around I’m taking more time to just enjoy each moment, good or the trying, as every moment does pass.
This lovely newborn stage doesn’t last long.

I can’t wait to see my two boys grow up together, with sensitivity in their hearts that only experience can give

C xxx

Chase - 5 days old 

365 days

17.12.2012

*** I wrote the below post in preparation last week ***

This last week has been tough.

On Saturday though we celebrated with Stella.
She's around, she knows we love her and I know she loves us to, just wish we weren't divided by a whole universe



Looking back on the year that was, I’m surprised at how 'well' I have actually coped.
I don’t know if the fact that my daughter Stella isn’t here and never will be has even sunk in properly yet as when I think about it I wonder how I could function normally on a day on day basis.

Losing a child is not something that many people have to endure (thank goodness) and when you do it puts you in a special category.  When I’m out I appreciate the fact that you don’t know everyone’s story. You don’t know what people may be hiding behind a smile. I know people are shocked when I say I have a daughter; but she passed away last year at only 23 months old. They don’t know what to say, and I don’t blame them.

The year 2012 has been full of smiles, love, sadness, reminiscing and the start of a new life.

Smiles made by good friends, new and old who keep me sane and are always open to talking about my Stella, always there for support.

Full of love with Jett giving me just what needed to cope with each day without Stella…. A special little being who has the kindest soul and sweetest nature, even with his new found tantrums.

Sadness, overwhelming at times that my Star has gone. How could this happen to us. We’re good people. It’s just not fair.

Reminiscing on what Stella use to do, what she use to look like and how she use to act. Soon she would have been turning into a cheeky three year old.

And even sooner, a new precious bundle to welcome into our family.


Each day I appreciate the fact that I am very lucky to have what I have.

I’m very lucky to have had Stella, if only for a short while, at least I have met her, my daughter. So strong, brave and beautiful. Im better off for having known her thats for sure.

I’m also very lucky in the fact that we could be blessed with another child not including Jett. I’m so grateful that we live in this age in time, where genetic testing can be done & this little baby in my belly is healthy.

I’m lucky to have a loving and supportive husband, who still loves me as much as he did when we met over 7 years ago.

We have an amazing family and I an even more amazing mum. She’s always been there for me and truly gave me the strength I needed last year and this year. She let me believe that I could do it, be strong and be there for my own daughter through the darkest of times.

And last but not least I have my health. Being healthy use to be a given, something that I never thought about… I now know it’s not to be taken lightly. So many people are not healthy. So many people suffer through various diseases, both physically and mentally. My own daughter was very very unwell. She passed away due to vital organ failure.
Seriously, writing this seems so surreal. I don’t think I’ll ever comprehend what she and ourselves have actually been through and sometimes thinking too much is not a good thing. So having my health, I am truly blessed, both in my mind and spirit.

One year my sweetheart

Forever on my mind, forever in my heart.

 

 

 

 

 

The whole truth ?

05.10.2012

Yesterday I didn't tell the whole truth and it felt wonderful. I wish my fantasy was actually a reality.

While out shopping for a baby girl gift for a friend I was asked if the items were for me. I said no, we haven't found out what we're having. Jett was with me so of course she asked me if i was hoping for a girl. Without hesitation I said I've already got a girl and a boy so will be blessed either way with our third.
Then at the checkout another lady asked me if the items were for me.
We got talking and she asked how old my girl and boy were. I said Stella will be three in January and Jett will be two in March, and this baby is due 2nd January which means I would have three under three.... She said with a smile that I'm a glutton for punishment , oh how I totally and utterly wish I was.

This is my third magical pregnancy yet I only have one child here. It isn't right and it isn't fair.

Somedays it's easier to say nothing at all.

Somedays I NEED to tell all.

And somedays I love to live in a wonderful dreamland when out and about and pretend like my Stella is still here, and she's not actually with me cause she's with her nana or at daycare

Cx

 

My little Miss just over 6 months old

 



World Stay In Bed Day

23.09.2012

Today marks World Stay In Bed Day

 

Its a day where people around the world are staying in bed to raise funds to find a cure for those who have no choice about being bed ridden.

Mitochondrial disease is a debilitating, incurable genetic disorder that robs the body’s cells of energy and can lead to multiple organ dysfunction or failure and potentially death.
Mitochondrial disease affects up to 1 in 250 people; many are symptomatic but undiagnosed or misdiagnosed, or are at risk of developing the disease or passing it on to their children.

Please take the time to read the information page here : World Stay In Bed Day
If you would also like to donate you can do so here : Australian Mitochondrial Disease Foundation

My little girl spent most of her time lying down.
She couldn't walk, sit up or even lift head ( She sure as might did try though )
This disease is extremely debilitating and its just not far that anyone let alone young children should have to live their lives like that.

Please keep spreading the word about our precious star and all the other Mito warriors fighting out there.

( Here's Stella's FB page, Pls follow us here too: Stella's Galaxy )

Cx

Miss you Stella Bella

11.08.2012

Stella has almost been gone 8 months.
8 months is also how long she fought so very hard to live and beat this disease.
In that 8 months from the first long standing seizure to the night she passed she was just pure love and delight.
It was hard, hard for the whole family. Within weeks we had taken on a critical nurse role and it wasnt easy, but having that time to cherish with Stella is something I'll never forget.
We were ever so lucky to have that time to use each day as best we could, filled with love, cuddles and smiles.

Some days I still can't believe that me, Chelsea, has lost my only daughter.
It still seems surreal and untrue. I don’t think it'll ever 'really' sink in.

Each morning I go into her room and say good morning.
Each night we go into her room and turn on her star lamp and say goodnight.
My mother (Nana) and I still buy her things we think she would like when we are out.

Doing these things helps me feel like she's still around, I know she is, I do wish daily though that I got to see her grow up into the special being that she was but I guess that was not her path.

Miss my pretty little princess....
We all do....

C xxx

7 week old Stella Grace 

Mixed feelings ....

11.07.2012

Today would have marked Stella turning the big two and a half.
It also marks me being 15 weeks pregnant with our third little blessing.

I have so many mixed feelings. I still can’t fathom that Stella isn’t actually here with me.
My first born who I had so many hopes and dreams for isn’t actually here on earth anymore.
It still blows my mind; I think it probably always will....

We are however over the moon to be bringing another baby into this world.
This baby has been tested for what Stella had and is thankfully all clear and healthy.
We can’t wait for Jett to have a little brother or sister to play with and grow up with, all the while knowing of their biggest and bravest sister, Stella.

Oh, I miss her pretty little face, her cuddles and her just being her, full of love and hope and light x

Twinkle Twinkle Little Stella

15.6.2012

Twinkle twinkle little Stella

Way above with the stars you are

You came, you saw, you shared your love

Your time here will never have been enough

An angel living amongst all of us

You and your brother never knew all of the fuss

Your smile, your eyes, your pale milky skin

No-one could be compared akin

I love your face, with eyelashes miles long

Everyone commented ‘where did you get them from’

Your soul will shine forever on in our lives

For to know a living angel, is a very rare find

Twinkle Twinkle Stella, you’re the brightest star

Always in my heart is where you are

 Isnt she just divine ?

It has now been six whole months since she left us,
Six months without her physically in our lives.
I think about her every single day, some days with tears and others with a smile.
She is missed very very much.....

Hope you're all living everyday with as much love as you can possibly fit in it.....

xx

My toddling son

6^th May 2012



Jett turns 14 months and 5 days old today.

Stella was this exact age last year when she presented with her first uncontrollable seizure.

When I look at him I see her.

He is so funny and cheeky like she was.
He pulls the same faces she did and is very much a rascal like his big sister too.

Watching Jett is wonderful. He toddles about when Stella never really got the chance too.
That’s a big thing for us, as before she first went to emergency that afternoon I had been waiting impatiently for her to start walking properly, and she never did get too.

It’s unbearable some days, seeing friends with their little ones and knowing Stella should be the same age or older.

Looking back at the year myself, family and friends have been through... well, to say the least it’s been unbelievably distressing and well and truly life changing.

Sometimes I think too much, what I've seen Stella go through- well you wouldn’t wish it upon your worst enemy.... and a lot of the time I couldn’t even watch, I had to look away.
On the other hand, she was and is still absolutely and completely loved.
I just try to remember all the good times, the times she smiled, giggled and smirked.
Its hard to remember her before April last year, as when she got unwell and we had no diagnosis I had to block out how she was previously as the heartache was way too unbearable. To think of how she was just broke my heart, and I tried to see her for who she was then at that time and who she would be in the future.

I never ever (not once)  stopped believing that she would be different, that she would show this stupid diesease what for and beat it. If it was something that she could of beat she would have for sure, she was just that amazing.

Today we're going to see The Wiggles and I'm going to enjoy watching Jett walk around, laugh as he picks things up and throws them. Watch him while he claps his hands and grooves his body to the music !
I'm going to enjoy watching him squeal when he wants something and I'll watch him, while trying to hide my smile when he's getting a temper.... all because I'm just so lucky that he's here and he's able to do all these things !

I've said it once or twice before and I'll say it again, dont take any day for granted, enjoy your kiddies, and if some days they are really trying, take a deep breath and think how completely lucky and blessed you are to have them here with you because there is so many people in this world who have lost their newborns, children, teenagers, and many who do not even get the chance to have a child....



Miss your pretty little angel face Stel Bel

Chels xx

16th April 2011

15.04.2012

Today is the eve of the day when one year ago our Stella was rushed off to the hospital.

The naivety I had that day makes me cringe now.
I honestly thought she was just having an allergic reaction and that she would be out the next day.
How wrong was I.

A whole year, It seems to have flown by.
There were however many times through the year when it seriously felt like the whole world had stopped. That I was the only one moving.
I still can’t bring to myself to ‘really’ think about the last year we have endured.
What we have gone through has been devastatingly life changing and I will always carry sadness in my heart.

Stella was and is still amazing.  

I will miss her for as long as I live.

How am I living my life now ?

I will not take anything for granted and I will make the most of each day.

Seem like pretty simple quotes to live by but I know so many people don’t.

I don’t bother getting caught up in petty stuff anymore. I make time for people who feel good for my soul. I try to smile more and have an even more relaxed attitude when it comes to living life in general.

Every single day I take pleasure in the little things.

I love watching Jett.

When he’s playing, eating, sleeping, talking.
I cuddle him and I kiss his face and chubby cheeks so many times a day.
I hold him and dance, and we snuggle on the couch. I really hear and listen to the giggles and laughter. 
I saviour him every day, and I feel incredibly blessed to have him here with me and to have had Stella too.

Everything he does, I look in wonder. This little being is so very lucky to have his big sister watching over him. He will always know who his sister is, how brave she was, and how much of a beautiful soul she had.

As the old saying goes;

“It’s better to have loved then to have not loved at all”….

Well, that’s an incredibly hard way to think when you have lost your child but it’s so so true.
I hated that saying last year, and I hated myself for thinking, at times when the grief was overwhelming that it would have been easier not knowing her at all....
I couldnt even say the verse in my head without bawling.
Now, I can smile through tears as I am so very very blessed to have had her in my life, for even only a short time, and in that time I can honestly say I loved  her and fed her posistive energy every single day. She in return loved me, and taught me to be a better person and mummy.
She was here for a reason and she left for a reason to.
As crap as it is, it's how it is and nothing can change it.

Love you Stella Baby, for eternity, and till we meet again xx

Stella on the morning of the 16th April 2011: 

A normal, healthy, funny pretty little girl x

Over three months on

23.03.2012

Well its been a little while since I last wrote a blog post, and to be honest I haven’t because I haven’t known what to write.

How I feel day to day varies so much.

I drove past our ‘old route’ to the Mater last week, and I swear I nearly had a panic attack.

I was out shopping with my hubby and I saw a cute little sign that said
“I’ve already found my prince, his name is Daddy” , I read this and felt like crying. My husband has lost his little princess.

We were at a friends house for dinner two nights ago, and he handed me Stella’s pink tea party basket. I use to use it to carry her toys around when visiting people.
It has been there for over a year and I had forgotten about it… So many dreams and hopes in just a little tea set...

I hate feeling like I have to say that Jett is my first child to people I meet in day to day life, just so I don’t make them feel “uncomfortable”. People dont know what to say, and a lot of the time it's easier to say nothing, but then I feel so terrible. He is my second, and Stella was and always will be my first   :'(


I still buy Stella pretty things every week. I can’t help myself. I place whatever I have bought in amongst all her other “treasures” in her special room.

I just miss her, miss her sweet little face.

My little Stella Bella, baby princess forever xxx

Jett turns 1 today !

01.03.2012

My handsome baby boy turns the big one today !
He has brought so many smiles and so much love and laughter to our whole family.
He'll never know how much he has helped me this last year, he's one special little soul who I know came into this world for a very profound reason just like his special sister, Stella.

My Stella Baby should be here having fun with her brother.
Stella would have been 2 years, 1 month and 3 weeks old today.
I know he see's her most days, as he waves to the air, always races to her room to play and blows kisses to her photos...

When he's older he's going to ask where Stella is. He's going to know her and remember her and that's just how I want it.

Jetty Spaghetti having fun at the pool

62 Days ....

15.02.2012

Its been 62 days since you’ve been gone Stella Bella.

I miss you; your face, your eyes, your hands, your toes…

When I see pretty little blonde girls out, that Jett watches with joy as they run around, I think of you.

I love remembering your attitude, your jibber jabber, your cheekiness.

How you loved swimming and just being in the water

Also hanging out in the shed with your Dad.

How you use to bop around whenever you heard any music.

How you loved having breakfast at the Coffee Club with me.

I love remembering your ‘scrunch face’, sooo kissable !

I also love picturing you doing the ‘star fish’ on the floor when you were getting tired.

How you use to drag your massive knitted blanket around everywhere !

Also how much you loved banana cake and spaghetti bolognaise.

Sometimes the grief is crippling but so too can be the happiness I feel for you, I know you’re safe and I know you are loved.

One dear friend said: “How lucky is Stella, all she has ever known is love- here and there”

Stella the Supernova

28.01.2012

I still remember very distinctly when we left Stella at the hospital on the night of the 15th December 2011.

I remember feeling light, like I weighed nothing at all.

I also very clearly remember looking up to the night sky and seeing not one star. I thought to myself and said to my husband, Stella is the only Star tonight.

The following morning we received a newspaper article from a family member. The piece was from the Daily Mail ( published in the UK ) that she had purchased that morning.

The brightest kind of supernova spotted just 11 hours after it exploded… the best for decades

Pic 1- Before and after: Pinwheel Galaxy before (left) and after (right) the supernova called SN2011fe happened - it's the bright blue dot bottom right.
It's the brightest and closest stellar explosion seen in 25 years

Supernovae are bright, so bright they can sometimes be seen with the naked eye, despite being hundreds of thousands of light years away.

Now astronomers from the Lawrence Berkeley National Laboratory in California have caught radiation from the brightest category of supernova – the type Ia – just 11 hours after it exploded.

Called SN 2011fe, it was seen in the Pinwheel Galaxy 21million light years away. Not since 1986 has a type Ia been spotte
A supernova occurs when a star dies or when a white dwarf star sucks matter from a nearby star, eventually reaches a critical point and explodes with extraordinary ferocity and brightness - the equivalent of at least 10 billion d this close to Earth.

The light from thousands of type Ia's have been studied, but until now their physics - how they detonate and what the star systems that produce them actually look like before they explode - has been educated guesswork.
suns.

A star dying is a type II, a type Ia is the latter variety and the most luminous.

Peter Nugent from the Berkeley Lab said: ‘We caught the supernova just 11 hours after it exploded, so soon that we were later able to calculate the actual moment of the explosion to within 20 minutes.’

There's a specific limit to how massive the white dwarf can grow, equal to about 1.4 times the mass of our Sun, before it can no longer support itself against gravitational collapse.

As it approaches the limit, conditions are met in the centre so that the white dwarf detonates in a colossal thermonuclear explosion, which converts the carbon and oxygen to heavier elements including nickel,’ says Nugent.

‘A shock wave rips through it and ejects the material in a bright expanding photosphere. Much of the brightness comes from the heat of the radioactive nickel as it decays to cobalt.

‘Light also comes from ejecta being heated by the shock wave, and if this runs into the companion star it can be reheated, adding to the luminosity.’

‘It only takes a few seconds for the shock wave to tear apart the star, but the debris heated in the explosion will continue to glow for several hours.

‘The bigger the star, the brighter this afterglow. Because we caught this supernova so early, and with such sensitive observations, we were able to directly constrain the size of the progenitor.’

Mark Sullivan of Oxford University said:

‘Understanding how these giant explosions create and mix materials is important because supernovae are where we get most of the elements that make up the Earth and even our own bodies - for instance, these supernovae are a major source of iron in the universe. So we are all made of bits of exploding stars.'

 Their results are reported in the December 15 2011 issue of the journal Nature.
Full report at Daily Mail- Supernova

Pic 2 - Light fantastic: SN 2011fe glows bright - from 21million light years away 
 

I love this, Stella my star !


For everyone to see,
shining ever so brightly





xxx

And I miss you ....

26.01.2012


We are back from holidays.
We had a lovely time; seeing Jett play with some other beautiful children made me smile but it also made my heart yearn for Stella.

I really dont know how Im going to be able to cope with missing my girl for the rest of my life, it seems like such a long long time

"Made for an angel"  while on our holiday 

Family time ....

20.01.2012


We are going on a family holiday, yay ! …  so I won’t be around for a week

Please keep sharing this with your friends and talking about it to someone new.
The more we talk the more awareness we'll create.

I just wanted to say a big thank you to everyone who has supported us through this amazingly tough journey. From dear friends, to acquaintances and to total strangers, I feel a connection with each and every one of you and can also feel the love that has been sent for our Star and to us.

Give your loved ones an extra cuddle (or ten) today xx 

Much love, Chels xx

DOG WASH AND FAMILY FUN FUNDRAISER IN MEMORY OF STELLA

17.01.2012

Yesterday I received an email from a great friend, saying she had organised a event to raise money for the Mitochondrial Foundation in Stella's name ! Wow !
Thanks so much to Ang at Pamp Ur Pooch and to her partner Brad, who have been friends of ours for a very long time.

Below are the details of the morning:

Please find the event on Facebook here : Dogwash and Family Day FB Event

DOG WASH AND FAMILY FUN FUNDRAISER IN MEMORY OF STELLA

 Many of you know about Stella’s story and what an amazing star she is. For those of you that don’t Stella was born with a rare condition called mitochondrial disease which is a life threatening condition. At just 23 months of age beautiful Stella had fought as much as she could and passed. Stella amaz......ed so many people with her strength and determination through all of her journey and it is easy to see where she got it from.... her amazing family.
This debilitating disease affects so many families in so many different ways and there is no cure at this point in time. Please come and support this fundraiser to not only raise money for research but to raise awareness of this disease. Let’s all get together and spread the word!
With much needed help a cure can be found and stop families in the future from going through a heart breaking journey like this one.

DETAILS:
Sat 4th of Feb
The Spit Gold Coast
Time: 8am - 2pm

There will be:
Dog wash
Sausage Sizzle
Jumping Castles
Face Painting
Silent Auction

So bring the hound and the kids for a great family day out. For those of you that don’t know there is a dog beach at this location so they can have all the sandy and salty fun in the world than get a nice wash before the car trip home.
Please note that ALL money from this day (not just profit) will be donated to the Australian Mitochondrial Disease Foundation to help for future research.
If anyone would like to donate items for the silent auction it will be appreciated very much.

Please phone or email Angela 0412 531 705 or angie.pampurpooch@gmail.com if you need anymore information or think you can help.

Thanks so much, hope to see you all there.

Love this quote ....

15.01.2012

"What the caterpillar perceives is the end, to the butterfly is just the beginning"

Photo taken on Stella's birthday last year

Thanks Cass D xxxx

P.S- Thank you to all involved in the auction, it went incredibly well x

Peekaboo Auction for Stella x

Today Peekaboo magazine  is holding an online auction on Facebook (  Peekaboo Magazine Brisbane FB Page ) with all proceeds going directly to us....

What a lovely thing to organise and thank you so so much to all the great businesses who have donated such beautiful items and another massive thank you to all the bidders.

We love you all.

..................

It's getting very tight here at the moment with Scott not having worked since November and us only receiving the disability payment so this boost of cash will really help with everyday living and hopefully also help us to create some fun and happy memories as we head in to a new year  xxxx


Please go on over and check it out - everything in the album is truly gorgeous !!

AUCTION ENDS TOMORROW MORNING 10 AM 13/01/2012