Thursday, November 17, 2011

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

Wednesday, November 16, 2011

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.

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.

Tuesday, November 8, 2011

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