"Oh the places you will go"… A reflection of the past and excited about the future

As 2013 comes to an end, and we look forward to Ellie starting school in 2014, it has made me reflect on the last 5 years.

I still cannot believe that Ellie is going to be a school kid, a little prep kid.

Its not that I ever doubted her, or that I thought it wouldn't happen…

Its just that when you look back at the first few years of Ellies life, we had a lot of downs compared to ups… & when we had those downs it was very hard to look into the future, to imagine what Ellie would do, to imagine what she would become, and to imagine what she would achieve.

Upon reflecting back on Ellies 5 years, I went back to old photos, and put this video together. This shows how far our little fragile baby has come.

She has become a strong, determined, resilient, beautiful, young girl… I am very excited to see what 2014 brings for Ellie and for Ellie to show us all that she can achieve.

Enjoy the video, it is a long one, as I had to many favourite photos.

Your off to great places, Today is your day!
Your mountain is waiting, So… Get on your way

This free picture slideshow generated with Smilebox

5.. How did we get here??

There are times that I feel like Ellie has been here forever and I cant remember my life before her.
Times when I think back and realise how far she has come.

Then there are times when I feel like it was only yesterday that Ellie came into our lives.... and I can still feel those raw emotions of fear and joy.

Fear of what was to come?
Fear of what Ellie's life would be like?
Fear of what our life as a family would be like and how our life would change?
Fear of the unknown?

Joy at the arrival of our precious little girl.
Joy at our family of 2 becoming a family of 3.
Joy at this little thing that was going to amaze me..!!!

These are days like August 22. Ellie's birthday. This year she turned 5.

5..!!! Where did that come from??? What I have a 5 year old.

Over the last 5 years, there are still occasions where I go back to those fears I had when Ellie was born. There will always be some sort of fear of the unknown with Ellie. That just comes with having a child who has a disability.

However that is only short lived. When I look at our girl, and she reminds me that she is a strong, determined, resilient and funny girl, that has so much love to give.

It amazes me that we are here at 5, planning school next year for Ellie.
It makes me beam with pride how well she has fitted into kinder, and melts my hear that she has made her own kinder friends.
It makes me SMILE and helps subsides those fears...!!

Happy Birthday to my beautiful Ellie. You bring us so much joy...!!!

Bitter Sweet

Bittersweet. Meaning: Producing or expressing a mixture of pain and pleasure

The word 'bittersweet' has been going around and around in my head for a few weeks now. I think sometimes having a child with a disability forces you, wether you like it or not, into a world that is 'bittersweet'

I think I have always been in this 'Bittersweet' world. However having Cooper has made me realise this. 

There are times with Ellie, when things are really hard... Like when she is not herself and you don't know why, because she cant verbalise it to you. Or like when you see her really wanting to do something like walk, and she is giving it her all, but she just doesn't have the balance or strength yet... the look in her eyes shows she really wants to do it. 

Its also pulls at the heart strings watching how at ease Cooper is with drinking out of a bottle, holding his head up high, and holding onto rattle when it is given to him.. Things that Ellie really struggled to do. These times are bitter because it really smacks you in the face how hard having a child with a disability is. 

Then there are the 'Sweet' Times, like when they learn a new skill, it could be as basic as  holding onto a toy, responding to their name, or even waving... then there are the bigger milestones.. sitting, self Independence such as eating and drinking, crawling, standing, the list goes on.. Not all kids with a disability reach all these milestones. 

But believe me when they reach a milestone. No matter how big or small, the feeling is so unbelievably sweet, that for that moment in time you forget about the 'Bitter' times

and you SMILE

These 2 make me smile...!!

And then there were 4...!!

2 weeks ago we became a family of 4. On June 15, 2012 we welcomed Cooper Ryan Young into the world. He is an absolute dream. He was 3.27kgs (7.21 lbs) and 49.8cm long. He was born with very very cool dark spiky hair.

Ellie is extremely curious and intrigued by him. She is definitely aware that there is another 'person' in the house. She is actually quite gentle with him, and it is quite beautiful to watch her take all of this in and process this big change. With Cooopers arrival, Ellie has grown up over night.. she looks so much oler now. She is a BIG sister..!!!

Life is definitely busier with another little person in the house..!! I am feeling quite rested as he is a really good sleeper at this stage (touch wood..!!)

Here are some pics of our little man. LOVE him to bits xx

Close to home...

In the last week or so I have seen a video doing the rounds on facebook. I finally got around to watching it, and it touched me. It hit so close to home. It brought back memories, feelings, and fears I had when Ellie was born and we were told she was born without her right eye.

It made me remember the stares, points and even comments about Ellie from complete strangers when we were out and about. Those early days were hard..!! Hearing people say horrible things about my daughter, watching people stare. I even had people ask me "Whats wrong with your daughter"

Yes it upset me, but I thought "How dare you..!! a complete stranger make me feel uncomfortable about my daughter"

What did I do? How did I deal with it?

I would stare back at them..!! Till I made them cringe and look away, and hopefully I made them feel awkward...

I would approach them, and let them know that I heard there  horrible comments about my daughter and that it was  mean and rude...

I even had business cards made up with Ellie's photo, and it said "My name is Ellie Eda Young and I have Wolf Hirschhorn Syndrome" And the web address for the blog, in a hope that people would go home and look up WHS or Ellie's blog, and be educated about her and her condition.

What on earth makes complete strangers feel the need to voice there horrible thoughts about people with disabilities?

Is it really necessary to point, laugh and ridicule these people?

I know it is human nature to look at things that are different. People that are different... I do this too.. But there is a difference in looking to staring... and then also making comments loud enough for these people and their parents or carers to hear.

Take the time to watch this video. This beautiful little boy, was born without both his eyes. His parents endured the looks, the comments and were even asked, why they didn't abort their baby...!

In this video I see her excitement at finding out she is pregnant...
I see her fear as they realise half way through the pregnancy, there is problems with their baby...
I see her sadness as she talks about how strangers treat her and her baby boy...
I see her joy in her face as she talks about her beautiful boy...

I see everything that we have been though.

www.youtube.com/watch?v=oWCbkyR0cy0

Reflections. How far we have come..!!

Recently I have been sorting through Ellies things, moving furniture, buying baby things... all to get ready for our new addition which is due in 8 weeks.. A few days ago I was taking Ellies clothes out of her draws, as these were going to go in the baby's room. Going through her socks I came across a tiny box, which had Ellies first socks that she wore and her hospital bracelet from when she was born.

These 2 items gave me a real reality check on how far we have come, or should I say, Ellie has come from when she was born. The socks were actually Baby Bjorn doll socks and her hospital bracelet was not much bigger than a 5 cent coin.

It made me think back to that day over 3 years ago, when when Ellie was born. Nothing could have prepared us for that day. We had a baby born at 1.8kgs (under 4lbs) who was to small for 000000 clothes,  premmie nappies went half way up her back, and we were also shocked to find out that she was also born with one eye. If I look back at photos I remember that time clearly, but there is also allot that I don't remember due to the shock of the situation....

However fast forward 3 years, and we now have a beautiful, cheeky, funny little girl.. Who wears size 1 clothes, is moving around on her bottom, is very switched on, loves life... and continues to amaze us.

How far we have come...!!
And how much we have learnt... Not only about Ellie but also about ourselves.

(The sock on the right is Ellies current sock size..!!)

From this...

To This...!!! 

Amazons response to my complaint

If you read my previous blog update you would be aware that I emailed a complaint to Amazon.com regarding a book with an offensive title for sale on their online store

(Read that blog post here)

I did ask for a response. Read this below. Now.. I did expect that I would get a generic response. However I did not expect to get a generic response that didn't even answer my enquiry or acknowledge my complaint.. I don't know what has infuriated me more... the book that is for sale, or the lack of proactivness to my complaint... I feel a reply email coming on.

Watch this space..!!

_________________________________

Hello,

The items you referenced are not available for sale. Thank you for contacting us.

Thank you for your inquiry. Did I solve your problem?

If yes, please click here:
http://www.amazon.com/gp/help/survey?p=A1A18G8TBLK8BA&k=hy

If no, please click here:
http://www.amazon.com/gp/help/survey?p=A1A18G8TBLK8BA&k=hn



Jagadish S