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