WE LOVE YOU HAILEY, REST IN PEACE, PRINCESS!!

I just cannot believe that Hailey is gone.  We got to know each other at the Royal Children's Hospital, Melbourne Australia.  She was funny, cheeky, smart, courageous, sensitive, loving and a true friend to everyone she met.  I have never met such a genuinely gorgeous young woman, to have to go through what she did in her short life, not many people would really cope with.  She was a true inspiration and really didn't want to let people know how much pain she was in.  Hailey showed such love and acceptance with all the kids she met in hospital.  She took to Noah instantly, she knew how bright he is.  They got along really well and she encouraged him through tough times.  Noah knew that Hailey was someone very special.  He would always smile Hello to her when he saw her.  She would teach him things on the LapTop give him encouragement where she could.  She had an innerstrength like no other.  She would always make sure that her friends, brothers and sister were always looked after when she was in.  We spent so much time leading up to Christmas in 2009 and 2010 so got to know each other.  Noah was flat on his back with spinal fractures and when we were there for such a long time and Noah had no visitors, Hailey would come into our room and hold Noah's hand, sometimes for up to 2 hours.  It just gave him strength and she did tell him she was giving him strength.  She was just that kind of girl.  I wish my family had have met this young lady as it would have put things into perspective, what's important and what isn't!  Living a life like Hailey has lived hers, mostly for her friends and family, have really touched me.  Noah and Hailey shared the love for Elmo and she would bring in little things of Elmo, pictures she had coloured in, things she made in the Starlight Room, a ribbon with an Elmo picture that she shared, what a kind hearted person.  She loved Elmo just as much.  Hailey was always giving, of herself, her thoughts, the smallest of gestures, thats what is important.  She knew that Noah understood what she was saying to him and would go off and tell him stuff that only they shared. 

I got to know Narelle too. And met Shane a few times in Hospital.  He was such a big Teddy bear (and a bit scarey too). Don't cross my Hailey or else.  But they live for their children and Narelle was there for Hailey's every hospital admission, too.  She would be there for most of the day and then Shane would take the night shift.  They have other children to look after.  I got to know them a little in hospital and towards the end and when Hailey was having her dental surgery early this year, I was so scared for her.  I went to visit a few times, with Noah, saw the big gash she left behind with her wheelchair, always giving her a kiss Good-bye. (I wasn't sure if I would see her again).  I was so scared. 

The day that Hailey passed away I read on facebook a note that Narelle put up and called her straight away.  I couldn't believe it. Nooooo. I was so upset.  but I had to hold it together as we were having guests for dinner, that night.  I held it tight, too. 

Oh how I felt for Narelle and Shane, I wanted to write something but it took me a while to think of something to say,  but then it came to me and this is what I wrote:

Our dear friend @Hailey Hood passed away this morning. I am in shock. Just can't believe she is dancing with angels now. She couldn't take it any more, too much pain. I will never forget you precious girl, you and Noah have shared a lot in RCH and when he was really down, flat on his back, no visitors, you would always come and hold his hand and tell him to be strong, but you were in just as much pain if not more. You gave of yourself like no other. You were just you. But that you is something real special to Noah, myself and Adrian. To know you started school after such a long time and you were truly happy, breaks my heart. Whenever I see Elmo I will always see your smiling face. You and Noah will always share the love for the crazy red monster. Love you Hailey, love you always. People come, people go but some stay forever, you will be forever.

I must have said something that really touched Narelle and Shane, because they read this word for word in her Eulogy.  And I was mentioned a few times.  I wrote it from the heart and said it how it was and is.  Hailey was who she was; there was no pretentious bullshit.  I feel honoured to be a part of their service and a part of Hailey's life.  She was a princess in every way.  You will live with us forever, and have footprints on my heart till I die.  You sure have taught Noah about maturity,  he was truly remarkable at your celebration, he listened til he could no longer and fell asleep, it was his way of dealing with his pain and grief. He loved you Hailey!!! You have taught him some things about life. Unconditional love!!!

SUMMER HOLIDAYS - JANUARY 2012

This is my husband and Noah with his school friend, Daniel at the beach.  We had the most amazing time at the beach. He had a beach wheelchair which could float in the ocean and we did take him out until we were waiste deep.  It was relaxing it was fun, and it was reconnecting with each other.  It was brilliant. 

We went out for breakfast, got to the beach in the afternoon sun, stayed out late, had ice-cream at the beach, walked along the pier, took the dog to the beach.  Ate out at Portsea Hotel which is the end of the Mornington Peninsula.  We had the first beach holiday, in 4 years.  Noah was in hospital the past two summer holidays in a row. We had to do something this year because he has been so healthy and so happy.  Thank you, God!!! 

I thank God for the memories I had at the beach, I thank our friends for accepting Noah for who he is.  Look at this picture, it tells a thousand words. Noah loves the company of his friend and he is the first friend he's made.  They are hilarious together.  I don't let me guard down very often anymore but this family we have met are the nicest people I have ever met.  They have two with ASD so they get it.  I don't see their "DIS---ability"  I just don't see it.  They are gorgeous kids.  If I could adopt a few, I would.  Great holiday had by all!!!!

7th February 2012

It has to be the worse week we have had in a very very long time. Two kids we know from RCH Melbourne have passed away, up with the Angels looking down.  I just can't believe this.  I am so devastated for Cathy, Mark, Alex and Abby.  I am also devastated for Narelle, Shane, and family.  With all that our kids endure in their lives they deserve to fight this.  I just can't believe that Hannah-Hannah is gone as well.  Hailey on Saturday.  How can that be?  We try so hard to keep our kids healthy and safe.  I just ask why? how am I going to tell Noah tomorrow afternoon? How is Finn going to cope???

Sunday 5th February 2012

It is the start of the new year at school for Noah.  We have started at Ringwood Heights Primary School, last year in July.  He has been there for six months and has settled in better than we expected.  There will be a few hiccups I know, but it is better than Noah being at the Special School.  He is learning so much more and loving it too.  I am very proud of what he has achieved.  It is a milestone for him,  it is something that I am happy about as he was so bored in the other school.  He was actually going downhill in the other school.  There were no expectations of him to achieve, children like Noah have no capacity to learn but I have proven them all wrong.  He is happy and doing very well.

This weekend has been a real sad one for us.  We have spent a lot of time at the Royal Children's Hospital, Melbourne.  We found out that one of our friends passed away yesterday morning so today has been a really somber, pajama day.  I spent most of the day in bed crying and Noah slept beside me for quite a while.  He was also upset.  I really need to get some photos together and make a slideshow of the two of them together at the hospital.  I just think Noah loved Hailey as a good buddy to have around when he was flat.  She always picked up on his moods and that he was feeling very low. Hailey would always come into our room and make Noah feel good about himself.  She was an incredible young woman who will be really missed.  Noah knows the concept of passing away as he remembers his beautiful Oma and when she passed away.  Hailey was bubbly, happy, those beautiful eyes, she was incredible. Love you Hailey.