Noah is the amazing one (my talk at Noah's funeral)

For the past ten years I have imagined what this day would be like and what I would say about our amazing son, who changed our lives forever.   No words that I can say and no amount of time can really let you know what a privilege it was to be Noah’s Mum.  I often felt inadequate to know that such a special spirit was given to me.

When you are told the words that your child is severely disabled, everything that you ever had planned for your family just flashes before your eyes and changes in a heartbeat.  The image that I had in my head of a perfect family was gone and I wondered and questioned why Noah was sent to us the way he was, and if I could be the Mum I imagined myself to be when Aaron and I were married.

Ten years later I can say that I think I am more than I imagined.  He made me so much more patient, loving and caring than I ever would’ve been without having him.  We often get told ‘you guys are amazing’ or ‘you are an amazing family’ but to us Noah was the amazing one as he changed us little by little and did it without ever saying a word.

I was once asked by someone if I didn’t believe in miracles.  When I asked them what that meant they said ‘don’t you believe Noah can be healed’?  To me Noah WAS the miracle. He didn’t need to be healed because he chose to come to earth the way he did, and the miracle was that he was able to smile, laugh, interact with us and touch so many people despite never being able walk or talk.

Simone shared with me how much Noah has touched her over the years and especially as she was needing to be comforted last year.  She said that “Noah, who cannot talk reached out and comforted me in a way that people who talk a mile a minute, (like her!) could never have.

When you are around Noah you just know you are in the presence of someone who is a very special spirit because of the way he made you feel.  After we found out that Noah was disabled we went through a period of adjustment and we even grieved for the child that we didn’t have, but after a while we saw that even though Noah’s body wasn’t perfect, he really WAS perfect and we started to see how blessed we were as a family to have such a perfect spirit living with us every single day.

Often when I would take him to an appointment and the person didn’t know me they would ask ‘and you are?’ wondering if I was Noah’s Mum. I was always so proud to say I was his Mum and often I felt like Noah’s spirit was so much wiser than mine that it felt strange saying I was his Mum, as he is the one teaching me.

When Noah was born we were told that his life expectancy would be short.  We are so grateful that Noah was able to stay with us for ten years and if it were our choice we would’ve loved and cared for him for another ten or twenty years if we were able to.  I have been told many times ‘I don’t know how you do it’ but when you are blessed with a child like Noah you know how easy it is to do it, because of how many blessings he brings into your life, and how much loves he gives back to you.
There were many things that we had to do every day for Noah that just became a part of his and our lives – appointments, therapy, doctors visits, medications, suctioning, doing physio, toileting him, turning him in the night, or having to stay at home because he was sick.  Over the past week I’ve been sitting at home every night thinking it’s med time or time to change his feed over, or time to change his nappy for bed, and wishing so much I was still doing all of those things all day, every day. The love and joy you felt from caring for Noah far outweighed anything else.

I remember once saying to Nicole who was one of Noah’s first carers in our home that I wondered what Noah would be like if he wasn’t disabled.  She just simply said ‘he wouldn’t be Noah’.  I then stopped wondering and was just so grateful that such a special spirit was given to us to love and care for.

Over the past ten years we have had so many experiences which we’ve had fun talking about over the past week as we remember them.  We’ve met so many wonderful people who we wish to thank today for showing so much love to Noah and our family over the past ten years.

We’ve had some lovely carers over the past ten years including Nicole, Bridget, Angie, Alison and Di.  Di and Alison were Noah’s current carers and they have become very close friends and are now more like family to us, and we know that they love Noah just as much as we do.

We are so grateful to Noah’s doctors, Dr Chris Bailey and Dr Jehan Phillips who treated Noah so well, would fit him in straight away whenever he was sick, and gave him everything that he needed to live the most comfortable and healthy life possible.

The staff at St Giles, especially Janet his OT and Kerryn his physio, who have spent many hours with Noah over the past ten years.

The Make a Wish organisation and volunteers who granted Noah a wish in 2006 and we were able to go on a very special holiday as a family and have many happy memories from that time.

We’ve also ‘met’ so many people from all around the world whose children also have hydranencephaly and I’ve become close friends with many of them.  I’m so grateful that our children have brought us together and even though we haven’t met in person many of them I consider to be my closest friends.

Our very kind and generous friend Naomi who is also our chiropractor and treated Noah at least once or twice a week for the past 8 years, and our friend Marlo who is also our naturopath who also saw Noah regularly over the past 3.5 years.

The staff, doctors and nurses from ward 4k at the LGH and also the pharmacists and girls in the hospital pharmacy.  The hospital felt like our second home at times and even though Noah was in there when he was sick, we always look back on those times with a smile because they made it so much easier to be there, and our other boys loved spending time there as well.  We will never forget the generosity of  nurses who arranged for Noah to be given some funds to go towards buying ramps so we could get Noah into our van after he got his first wheelchair.

The staff and students at Punchbowl Primary School who made it so easy to send Noah to school because of the love and care that they showed to him. It was so nice to push Noah into school hearing the kids yell ‘Noah’s here!’ or to watch them as they would go up to him and rub his arms to say hello.

And the staff and students at NHS who gave him so many opportunities to develop as much as he could and showed so much love to him (I then read letters from each school which I will post later). 

Lastly we would like to thank the amazing staff, doctors and nurses from the Intensive Care Unit at the RHH.  They made Noah’s last week as comfortable as possible and cared for him so well. They also showed so much love and support to us as a family and we will never forget them as we said goodbye to Noah.  Seeing them crying right along with us touched us so much and we will never, ever forget them.

As last week went on Noah was really letting us know that it was his time, and he was just holding on, waiting for us to be ready to say goodbye.  Saying goodbye to Noah last Saturday was the hardest day of our lives and I don’t think anyone can be ready to say goodbye to their child, but knowing where he was going made it so much easier.  As Aaron said to him as we sat crying by his bedside ‘it’s not long now, you are going home’.

I’ve heard others say that when a loved one passes away they felt like there was no colour in the world anymore.  After having Noah in our lives I now feel like the world is actually more colourful. I now see the beauty in simple things.  He has taught us what is important, what our priorities should be and our family would not be how it is today, without him.

A friend wrote to me a few days ago and I loved what she said. She wrote:

"Now it's time to take the very best of Noah, his finest qualities, incorporate them into who you are, make them yours and share them with the rest of the world. In this way, through you, Noah lives on".

I hope and pray I can take his finest qualities and make them mine and share them with the rest of the world.  I love you Noah and am so grateful that you chose me to be your Mum.  I will never stop missing you and will never forget the love that you gave me each and every day.