Just wish those who see whats going on to get it.

31st March 2012 6:50pm

This post is going to be one full of emotion.  We have come out of RCH this afternooon Noah and I arrived home at 12:45pm.  Totally exhausted.  I have had hardly any sleep and Noah was prodded and poked by the nurses at ungodly hours of the morning because they had to do their obs. 

Noah's veins weren't the best this time and had been pricked about 5 times and he didn't even flinch.  He took it and not a peep out of him.  If it were any other kid they would have screamed the place down.  He just took it.

On Thursday morning I awoke at 1 am to find Noah in a pool of sweat, took his temperature and it was 37 degrees, He had just had calve muscle lengthening two weeks ago so he was still recovering from that, I gave him panamax and diazepam because I assumed he was having muscle spasms.  We went to sleep, then woke at 6:15 am with Noah having a barking cough but sent him off to school as I had a funeral to go to at 12pm.  I just didn't want to miss it.  I still feel upset that I couldn't make it. I had a meeting in Glen Waverley in the morning after dropping Noah off and I was going to make my way down to Dandenong for Avah.

Noah's Aide at school was amazing.  She did everything she was supposed to do, kept him calm and kept him on oxygen as he was progressively getting worse as the morning went on. and I kept gettting the updates every 15 minutes so after the third phone call I decided it was time to go get Noah and take him off to hospital.  He was on 6 litres of oxygen before I got to school. 

From there  I decided to take Noah home and get a few things together for hospital.  I packed the van with everything I needed at hospital and we were off.  Noah was insisting we get going sooner than later, he just knew how he was feeling.  No GP was going to fix this.  Off we went to RCH with a phone call to ACE project first.  (Accelerated Care Through Emergency) we just had to let them know we were coming in. 

In the back of my mind I was thinking I have missed Avah's funeral.  My mind was everywhere, keeping an eye on Noah in the back seat and also my mind on the celebration of Avah's life.  She was such a princess. 

We got to hospital and went straight through to Resus room 3 in emergency because they had to assess and give more oxygen if needed.   I was calm and did what I had to do with Noah, kept him calm reassured him, but he was also reassuring me.  In his own way telling me he was in the right place and he felt safe.  he was comfortable and have to thank the nurse in resus, he was just brilliant with Noah and myself.  Doctor was really great too, as he knew that I knew exactly what I was doing with my boy.

Lungs weren't good and neither were his ears and throat.  I just knew so it was on with the Angel cream on 4 sites.  Still umming and arring as to whether he needed oral or IV antibiotics.  We were moved to a cubicle when he was stable, went off for a chest xray, came back and waited for the results.  Doctors were sure it was viral pneumonia, still lots of waiting, (we have learnt that screaming at doctors to hurry up doesn't get you anywhere)  lots of patience does.  At this stage it was about 5:30pm and Noah still had not had all his PEG feeds as he just didn't feel like "eating".  He was getting dehydrated too.  Still Doctors were unsure about IV so we waiting till we got onto the ward for this to occur.  Two doctors tried to insert an IV in 5 different sites on Noah's arms, then an ICU doctor was called but didn't arrive until 4.00am when Noah and I had just got to sleep.  what a night. I told him to come back in the morning. 

Noah woke up better than the night before and was smiling, then the ICU doctor walks in and sees Noah who then decided that Noah did not neeed IV antibiotics.  We could treat this with oral penicillin.  Off oxygen the next day, antibiotics started and then his started to pick up.  Two  days of hospital and we are home.

I think there are people in my immediate family who just don't want to know what life with a special kid is like.  Its hard at times but majority of the time I wouldn't have it any other way.  I have learnt so much about myself and how strong I really am and just how weak, ignorant, inconsiderate, spiteful, rude, judgemental, some people can be.  This is my life, I didn't choose Holland but wouldn't change it for one minute.  He is who he is and that is that.  He can communicatie if people would just give a little of their time.  If people gave a little of their time they would realise how clever my son is.  Sometimes its really hard to explain to people that having a physical disability doesn't mean they have an intellectual disability.   People just see the wheelchair and the high physical non-verbal child and assume he is intellectually challenged as well.  Noah is nearly 10 years old and they still think he is intellectually impaired because he is non-verbal.

If you do not have the ability to speak, then you must be intellectually impaired.  It is not the case with Noah. He understands what is going on, but has not really had the chance to use his voice to express himself because others just don't give him the time. When we are at family gathering Noah can be at the table with everyone else but he is ignored, I timed it one day, Noah sat at the table with his cousins, Aunties and Uncles and not one of them spoke to him for three quarters of an hour.  I just couldn't believe such ignorance, such rudeness, spitefulness, being inconsiderate to someones needs and feelings. They don't see that Noah feels, sees, and often wonders why do they act the way that they do.  He often asked me in the past, but not anymore, he treats them the way they treat him.  What are they teaching their own children, that its ok to treat someone with a disability with such low regard.  I am to the point where I don't want to be around them because of the selfishness and ignorance.  They have had 10 years of getting used to Noah.  If they haven't got it by now they will never get it. 

Mainstream schooling was the best thing that we did for Noah, and some just still question why?  Why?  They should go into that special school and see what it is really like for the children who attend then they would know why. and NO it is not the best place for him, so he can be segregated like it was 30 years ago.  I don't think that is what I would like for Noah.  He deserves better than that.

I will be adding to this but for now chew on this.

Noah's Nonna came to visit today.  Its a one hour visit every month or so and she only lives 10 minutes away.  Noah is PEG fed and has been for 5 years, she came with a block of chocolate and told Noah that "mum will squash it for you to eat". it was a slap in the face. who does that??? who says that???

She looks after my sisters children twice a week but when Noah got his PEG I was told never to ask mum and dad to help me again because they are too old.  Double standards all the time. What can I say????

Since Noah has come into their lives I have seen a side that I don't really like.  Noah is all perfect but they can only see his disability.  I have seen things that I don't really understand and I think I will never understand.

I can't rely on anyone but me.

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.

Another day in the life of Noah.

Oh what a busy few months we have had. So much has happened another school year nearly over, and wandering where all the time has gone. Noah has come up to his 38th hospital admission and we just don't know any different anymore. This is how we have lived our lives for the past 8 years. It has been an insteresting journey to say the least. I am very new to this blogging so if I just go on and on, sorry.

My Queensland Holiday

I went to Queensland with my son, Noah and a friend and her daughter.

We left on 29th June 2008 and got back on the 9th July 2008.