Reflections On The Year Gone By

I am the type of person who likes to share the good and I don't often dwell on the past or share feelings of sorrow. As Noah's first birthday draws upon me I do find myself looking back and thinking of what I was doing. Blissfully unaware of what was to come. Writing this Blog has become a way that I can share my thoughts, feelings and experiences. Sometimes it helps to just get it out. Thanks for listening :)

This time last year the early signs of labor had started and I was enjoying a home cooked meal my husband made :) Excited and nervous with anticipation to meet our little 'Baby Reed'. It feels like a lifetime ago but it too sadly feels like no time at all has passed, as we have been stuck in a sort of 'limbo'. With Noah not really progressing at all and starting to show more signs of the outcome of his birth injury. Not knowing if the latest temperature, infection or respiratory trouble could send us down another path.

I guess in the course of life things happen to us that are not of our choosing. There are times when we are not sure where to go from here...or what to do. Sometimes the news we receive can change everything so completely. The world around us seems to go on without realizing how much our hearts can be breaking...and without taking into account how helpless we suddenly feel. Life has a way of teaching us lessons we didn't necessarily want to learn...and giving us tests we never planned to take.

And what a test the past year has been. I have come to realise that the things in life that can bring you the most joy can also, on the other hand, bring you the most agonising heartbreaking pain. It's just the way it is in life. There are no immediate answers to the "whys", that we ask ourselves when trying to deal with this type of tragedy. "Why did this happen"? "Why Me"? And even if there were maybe we wouldn't understand them.

In the past year I have learnt that I can be amazingly strong, that I have a whole other area of myself that I can love with, I guess I'd call it unconditional love. I have always believed that a person is more than their body. That they are a spirit or soul or whatever you may call it. Noah's body may be broken but his spirit is so strong and it shines through. It has taken me a while to look past what I can see and the "complexities" of Noah. And I think because there was a high possibility that Noah wouldn't make it to a year I couldn't let myself love him too much. But somewhere along the way that changed and although I may still lose him I am not living as if  "today could be the day". I am taking each day as it comes, which has got to be the single most simplest and best piece of advice I have taken on. Some days are good, some are bad and some I just feel utterly destroyed. But each day is a new day and I am learning that it is not what happens in that day that I can necessarily control or choose, but I can choose how I react. And I choose to focus on the positive and be brave and determined and live and laugh and take one day at a time.

I have come to realise that the man who is my husband is so much more amazing than I could have ever thought was possible. Strong, understanding, encouraging, tender, compassionate, selfless are just some of the words I could use to describe what a truly wonderful person Aaron is, and has always been my best friend and never has that been more needed than in this past year.

Well its now about the time exactly when 1 year ago our lives were changed forever.

Happy 1st Birthday Noah, we will face a new day with you with love,courage and admiration xoxo

Hills and Valleys

So much happening these days, they all seem to disappear. So much to confront and overcome and learn. Somethings are amazing and inspiring and make me cry with tears of joy and thankfulness and other things are just not fair and heart wrenching and I am overcome with sadness. One of my fellow HIE Mammas has described this as Hills and Valleys. Some Highs some Lows. I thought I would share some of the Ups and Downs of the last few months...

The biggest and best high would be that Narelle, Trav and Carlee Climbed Mt Kinabalu for Noah on July 11th. They fundraised a huge amount for Noah and because of them and the support they received, life will be a bit easier for us and we will be able to pursue some new therapies and equipment  in the near future. You guys are truly legendary! Thank you so much to everyone who donated and showed their support and compassion for Noah.

Following on from that I entered a competition through Red Balloon where you had to tell your Story of Thanks. I entered in how Narelle, Trav and Carlee climbed Mt Kinabalu and fundraised for Noah and how I could never put into words how much it means to us. We ended up with top votes and were chosen as the winners of the competition. We won a $500.00 Red Balloon gift voucher for our awesome climbers. Whilst in Melbourne we used this towards a special Limo Wine Tour of Gippsland. We had such a lovely day. It was nice to get out and spend some time with the people we love.

Click Here To Read More About Our Day on Red Balloon's Blog

I am yet to reconcile whether Noah being accepted into The Centre for Cerebral Palsy is a high or a low, if that makes any sense. What I mean exactly is that I am glad because it means better therapy and support and access to things that will help us and Noah. But it is also just about the most terrifying thing at the same time. Its scary and unknown. Noah has been diagnosed with Spastic Quadriplegic Cerebral Palsy, as a result of his HIE. There are different severity's and Noah's is in the highest severity level (V). As he is still young this may change somewhat. There is thus far no cure for CP, although there are quite a few different therapies/treatments which can be very helpful. We are currently researching and finding out what will best suit Noah. We have a team of therapist at TCCP. But our overall coordinator who is our Occupational Therapist is our favourite :) She is lovely and so on the-ball with things. We have been trying out some different equipment to aid Noah in different positions as he can't support himself very well. The one on the right is called a "Wingbo". It's a type of tummy time swing. It puts Noah in a great position to push off his arms and get his head up. This was the first time Noah was able to lift his head up in a tummy position. This may seem like such a small milestone and not a huge deal but it was such a strain for him and a huge, massive achievement and we are so very proud of him.

Another awesome thing that happened recently was that Miranda Kerr and the Kora Organics Team posted our story on their Blog. Miranda is quite the advocate for CP and such an inspirational person. She has actually written a lovely book called  "Treasure Yourself ". She says about it, "I wish to share my inspiration with you, so that you will treasure and believe in yourself, have faith in your abilities, accept who you are and uncover your own unique gifts. We all have wings, but it is up to each one of us to have the courage to fly. My hope is that these words and the affirmations included will help empower you to reach for your dreams even in difficult times. With action, anything in life is possible". - Miranda Kerr xxx She seems like such a lovely, down to earth, natural type of person. We were really touched by the addition of our story to her blog.

Click Here To Visit Kora Organics Blog Post

Noahs First Holiday Part Two

They say that a picture tells a thousand words and I am not the most accomplished writer at the best of times, so I thought I would share some of our treasured photos from Noah's first trip back to Melbourne. I have been meaning to share these for a while but time just gets away

Noah and his gorgeous cousin Taree

Noah and Sam




I am Tougher than I look :)

 

Noah and gorgeous Cousin number two, Hayley



Another gorgeous cousin (Sarah), lucky boy!



Noah and Paul

Thanks for my bath Aunty Narelle

.......



& for helping me sleep



Last Goodbye for Great Nana

Noah's First Holiday Part One

I am currently writing my latest post all the way on the other side of Australia, in Melbourne. We decided to bring Noah over to meet the rest of his family and friends. He has been lapping up all of the attention. I imagine it must be daunting enough to travel with such a young baby, but in my case I was petrified! I had myself fully convinced that everything was going to go wrong. As Noah doesn't swallow I thought the pressure would make him scream and worse case scenario he would rupture his ear drum. I thought he would have seizures. I thought that Qantas would think he was too "sick" to fly. I worked myself up to imagine the plane trip from hell ending in the plane having to make an emergency landing!

Well I should have just listened to my cool as a cucumber husband because Noah was amazing. He slept on take off and landing, didn't really cry at all and Qantas were awesome. They loved Noah and helped us with all his medical supplies and let us board first. Phew now I can breath a sigh of relief and enjoy our holiday :)

There were many people anxiously waiting to meet our little man in Melbourne. Aaron's Nanna, who is unable to fly, was first on the list to meet her first born Grandchild.

Noah was very popular at Nanna's nursing home. Everyone wanted to meet the little boy that they had heard so much about. There was a crowd of oldies and nurses trying to jockey for position with their wheelchairs and walking frames.

Next up it was Aunty Carlee's turn. She finally got to have a big cuddle.

Nanna Pam got to catch up with Noah. He has changed so much since she saw him in the NICU at just 6 weeks old.







Noah also got to meet a few other family members for the first time including Uncle Steve, Uncle Adam and Aunty Tanya. Noah loves meeting new people so I am guessing he is glad to be part of such a big family :)

Little Charlotte finally got to meet Baby No-ha as she calls him. So cute.

So many awesome new people to meet including the very cool Brendon. Love the glasses guys.

Happy Fathers Day

Things like Fathers Day, Mothers Day and the like can be a bit bitter-sweet. Its so hard not to think about what should have or could have been. I am sure that the "firsts" are the hardest and it will get easier in time.

I decided to surprise Aaron with a DVD I made of pictures of him and Noah. I used the words off of his Fathers Day card. Its times like these I realise how lucky I am to have such an amazing man as my husband and the father of our child. Happy Fathers Day Aaron, you're the best xx

Here is a smaller version of the DVD I made for the Best Dad in the World!

Make a digital slideshow

The Kindness Of People

I wanted to share with everyone the kindness of people and the support we have experienced. As you may have read on our blog our amazing family has supported us from day 1! They have visited at different times and helped out with caring for Noah. Our family and friends are always there to help and listen when we just need to vent :)

Our situation has not only hit us emotionally but financially also. When Noah was born we were in the hospital everyday for 6 weeks. He has been back to hospital a few times since as well. Looking after Noah is very exhausting to say the least and then there's all the hospital trips and appointments for his therapy, that until this point we have had to travel into the city to attend. And then there is all the extra costs associated with his care.

 

We are lucky that Aaron has his own business and so can have time off when needed. But having a lot of time off certainly takes its toll. That's when Aaron's sister Narelle came up with the idea "Climbing Kinabalu for Noah". Narelle, Travis and Carlee are due to make the climb July 11th. They are spreading the word and gathering support. All our family and friends  have gotten involved....... I hear there are cards and wishes coming from people we don't even know. I am so astounded by the generosity of people. I look forward to sharing with everyone how it all goes and thanking everyone who has supported us.  

Trav, Carlee & Narelle at Mt Kosciuszko (Training for Kinabalu)

 Thank you guys so much, it was your idea and thoughtfulness that has blossomed into a massive amount of support and wishes for Noah.

Then a few weeks ago we got a message from a lady called Bree. Aaron used to go to school with her many moons ago. She heard about Noah and saw his blog and wanted to help. She set up an auction on Facebook. She is such an angel and worked really hard spreading the cause and keeping the auction page updated. This has been such a positive experience and we have received so many messages of support and offers of help. We just want to thank everyone from the bottom of our hearts. It means so much to us that people would reach out and help us in a time of need. Help with offering auction items, bidding on items, spreading the word and sharing words of compassion. We will never forget the love we felt from everyone.



Bree and Her Beautiful Family


It was so fun to see the "bidding wars" going on and the high spirited banter between bidders. There were such amazing items donated. Including this picture donated by South Brisbane Storm Chases. It was taken the same day Noah was born, which I thought was such a heartfelt inclusion.

I would also like to thank the following businesses/people for their wonderful donations to our auction:

Little Loves Hand Stamped Jewellery & Baby Gifts
Grace's Corner
Cards and Stuff
Sweetly Scented - Soy Candles & Melts Handmade By Sarah
Sonix Family Entertainment
Sandilira - Holiday Shack Rental
Lizzy's Letters
South Brisbane Storm Chasers
Original Mischief
Siobhan Johns Photography
$1.00 Donation On Every Item Sold - Every Little Bit Counts
Bubbanooshka
STUNT Girls
MCC Photography
Kakara Soy Candles
Moments To Share
Jason Ayres
Kids Cove
Christina's Bridal Elegance
Tezzas Tagger Scraps
Your Child!! The Movie Star
Belinda's Place - Bargains For Everyone
Tezabears Bedroom Buddys and Window Clings
Brightstar Kids Agent - Emma Joseph
Blaise - Poetic Baby
Fiona & Tania Vanstone
Tupperware Consultant
RJ Couture
Carol Watkins

And of course a big, fat, huge, massive, enormous, gigantic thank you to everyone who bid, donated, liked and spread the word about Noah's Ark.


People are like stars... we all have our own special light that shines from within. Sometimes we find our light to be dim and we struggle to shine... but that is when we need the light shed from the other stars to help us light our path once again..... Thank You to all the Stars out there xx



Welcome To Holland

Since Noah was born I have been looking into different things to do with HIE (Hypoxic Ischemic Encephalopathy) which is what Noah suffered at birth.

I stumbled across a group of people on Facebook whose babies had suffered the same thing. All in different degrees. Some were only mildly affected and have gone on to have small if any long term disabilities, some, like Noah, are very severely affected. And there are many in between. Although we all have different individual stories and babies some of our questions and emotions are very much alike. It definitely helps to know you are not alone and there are people who can truly understand what you’re going through.

Some of the people I have met have blogs like the one I made for Noah. I was reading one ladies blog and she posted a story she had come across. It really hits home with me and I wanted to share it with you.

"Welcome to "Holland"

By Emily Perl Kingsley, 1987. All rights reserved.

”I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas.You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland"
you say. "What do you mean Holland I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.


But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.”

After reading this I realized that I don’t want to keep going over the why’s and what if’s. I don’t want to be stuck in the past and focused on all the negatives. Noah may not be here for a long time but I am going to do my best to find happiness in the time we do have. Yes I really wanted to go to Italy (and maybe one day I will get there) but I ended up here in Holland and I am going to do my best to find tulips -xx