Monday, 27 April 2015

ANZAC Centenary

Saturday 25 April 2015 (ANZAC Day) commemorates Australia's involvement in World War 1. Communities all over Australia and the world remembering the landing at Gallipoli on 25 April 1915. 2015 is the 100th anniversary of this moment. ANZACs stands for (Australian and New Zealand Army Corps). I still remember being seventeen and visiting Anzac Cove, Turkey for the first time. I was taken by the beauty of the landscape. I wondered how a place so beautiful shared such a tragic story. As I walked along the stone beach I was sad for the lives lost but with such gratitude for the sacrifice made.

Today, as many people travel to ANZAC services in their own town we drive an hour and half to a town with less than 500 hundred and join in their remembrance of the fallen at Gallipoli.

The weather is perfect and the air is fresh with barely a cloud in the sky. I can't recall the last time I attended an ANZAC Day march but I am honored to be part of it. As we watch the march, there is pride in the faces of those marching showing their care, respect and gratitude of those past men and women lost at Gallipoli. This is also a time to remember all those who serve in the defence forces and the sacrifices they have made.

Lest we forget

What to know more? click here

Woodenbong ANZAC Day March

Outside Woodenbong

Just outside Woodenbong

Mt Lindesay - Near Woodenbong NSW

Thursday, 23 April 2015

Blended Diet Faith Style

What is a blended diet?
It is when you blend food in a high power blender and push it through a feeding tube. We choose to use the Vitamix Blender. 

Where did we purchase our Vitamix?
We purchased it through Raw Blend. The were fast with delivery and we received quite a few extras.

What has it achieved for Faith?

  • Faith's hair has grown. Her hair went from fine to thicker curls.
  • Her nails are stronger. Faith's nails used to be quite weak and in combination with the blended diet and extra salt, her nails grew stronger.
  • Faith weight increased slowly and stayed on. It is still a battle and we are always tweaking her blend but it works.
  • Faith has a healthy glow to her skin.
  • We found when Faith was having a lot of commercial formula her vomits were huge and frequent. She stills vomits daily and this is due to many reasons but we have seen less daily vomited with a blended diet. 
  • Faith would wake many times unwell and now she has blended food her sleeping improved.
  • General well being improved.  
How often do we blend? We blend once every two weeks and freeze the blended food. We find this works bests for us.

A Family Affair
Blending at our house is a family affair. We all have a job whether buying, cooking, blending, or sieving. 

It has taken us a long time to find the perfect blend for Faith but we are at last happy with it.

What syringes do we use?
We use Baxa 20ml syringes as we find that works best for us.

'Blend Burnout'

The blended diet is hard work and we all get 'blend burnout' every now and then. It is worth it as we see less vomit and Faith grow. That is the reward for all the hard work.

What can go wrong?
When Faith had her NG Tube we only got it clogged once or twice and that was due to some probiotic that went clumpy. We were always careful the NG tube was inserted correctly. 

We haven't had any blockages with the Mic-Key or Bard Buttons.

How we travel with blended food

When we travel we have a car fridge so the blend stays cool and fresh. We use the Engel fridge/freezer.

We are currently in the process of organising an additional battery to our 4WD as with the fridge/freezer and exploring the possibility of a car hoist for Faith's wheel chair we would drain the battery. Also, as soon as the ignition is turned off the fridge/freezer turns off.

Wednesday, 22 April 2015

I'm on The Huffington Post

The Huffington Post are sharing my post on Having a Disability Is Not Wrong

This is my first story on The Huffington Post and I feel very honored and very excited.

Monday, 20 April 2015

Having a disability IS NOT wrong

Very excited to have this post published over at The Huffington Post!

Ten top questions it is best not to ask a special needs parent

Being honest is hard. When life is different to the 'norm' it can be hard to know what to say. In the early days the below questions confronted me and hurt even if a person means well it doesn't make it easy to answer. These days they don't bother me as much but I still don't like them.

1. “What's wrong with her?” If you are a stranger think about whether it is any of your concern. It might hurt the mum involved or perhaps it is too complex to explain. I don't mind talking about my daughter but it's not everyone's business. Nothing is wrong with her. Having a disability is not wrong.

2. “I understand what you mean”. This can mean well, but unless you are living a version of it you simply can't understand - empathy is much nicer.

3. “God only gives you what you can bear”. This is a tough one and very complex but it does sound condescending whether you are a Christian or not. I survive moment to moment. There is a time and place for everything including exploring the challenges God gives us and how we respond.

4. “What's the prognosis or is she going to die?” I’m not God. Perhaps I don't want to know or maybe I am still dealing with my emotions on this. But please don't keep asking this one.

5. “Is she meeting any milestones yet?” Every progression whether big or small is an achievement and it should not be defined by this overused word to define a child's abilities. We are all unique. How many tears have been shed over children not fitting into the 'norm'? Celebrate the small victories with me not the lack of milestones.

6. “Are you going to send her to a special school?” All options are open to me but just because she has a disability doesn’t mean she can’t go to a mainstream school. Why not rephrase it, what school is she going to attend?

7. “Why can't you do all the therapy yourselves?” I am not a super mom I don't know everything and I make many mistakes. Hindsight is my best friend but physically I can't do all the therapy myself I need the help of trained professionals.

8. “Did you know before she was born?” What does it matter? Another special needs mum asking is different as you are sharing a journey but she is here isn't she? That is your answer.

9. “What happened to her?” Nothing happened to her. She is perfect to me.

10. “Didn’t you think of a termination?” Defenses go up with this one. My choice and here I am.  We all have to make a choice we can live with and this is mine.

Tough questions hurt and challenge. It doesn’t mean they are wrong just need to be approached with care and caution. For a long time I was defensive because it hurt so much but responding in that way sets a bad example to my daughter. I smile and hold my tongue most of the time. Today, being rude seems to be ‘norm’, what happened to being polite and friendly to everyone? Perhaps, next time you meet a mum or even a dad with a child who has special needs be gentle as you don't know what their daily challenges are. Perhaps offer some encouragement and let them tell you their story when ready. Some questions come naturally to a friendship but instead of asking such targeted questions perhaps just talk about what is real and true now. Keep your curiosity at bay. Hold onto the future successes and help if you can. Remember having a disability isn't wrong it’s just a different type of normal.

Monday, 13 April 2015

Exploring the world and finding peace

Mutton Bird Island Nature Reserve - Coffs Harbour NSW
“Man cannot discover new oceans unless he has the courage to lose sight of the shore.”  Andrew Gide

The first days, weeks and years of Faith's life were spent commuting to and from the city hospital. They were horrible trips filled with pain and angst. We were never really home long enough to enjoy our own beds or be involved with friends activities. It was a lonely place. Night's were long and it was hard to distinguish the days. It was a challenge and when we came home we stayed at home, because it was easiest. It was easiest not to plan a holiday because not once did a plan we make ever happen with Faith being sick. Hindsight is beautiful. As I look back I see so much more wrong with Faith I didn't see it because I didn't know. Faith being our first baby how were we to know what was beyond the realms of 'normal'.
Southbank, Brisbane

Hospital admissions became less and we survived. We slowly grieved what was lost, walking, talking following the natural progression of development. We started embracing each moment and hours of Faith's wellness. Days were split into hours as it was the only way we managed. We started going for little outings and then little drives. We ventured further from home. We saw the world differently. We had longed to be free for so long and these mini adventures gave us not only hope that we could manage out with oxygen and a NG tube but we appreciated the beauty around us more. The clouds seemed deeper, the world looked fresher and inviting. Faith loved exploring, watching the water dash over the edge of waterfall or the raindrops hitting the car like squashed cling wrap. We started feeling less stuck in medical land.

Fast forward, four and half years on and we still love our mini adventures. Faith loves touching the water, splashing in the water, being part of everything, no longer willing to sit on the sideline she wants to be part of the action. Her stroller has traveled up steep hills, been carried up steep steps, strolled along beaches with only her wheel marks to say we were here. We have pushed the stroller into a walk in pool and sat by the water and marveled at the beauty of where we live. 

It has all taken courage, courage to not just accept 'I can'ts' but to try and try. Never give up. We have failed so many times but was it failure? Or perhaps it was good that we tried. Slowly the attempts at being part of life again became more successes. There was less tears and more laughter. There was adapting to change and finding joy in a different style of fun. At last we embraced the difference and found new ways to be a family and we found peace. 

Monday, 6 April 2015

4WD Trip - Loving the outdoors

Washpool Creek, West of Baryugil
We have been fundraising for Faith's power wheel chair for several months and we have been blessed, amazed and astonished at how the fundraising has progressed. We are currently just over half way. Our church family held a ladies French breakfast fundraiser and it was a wonderful time of fellowship and fun. I had the honour of sharing our journey with Faith. I have never spoke at a function like that before and it was me who felt blessed to share our story.

Faith still plays the movie of herself in her 'test' drive of the power wheel chair. It is exciting watching how far she has come in 12 months. She now asks for the power wheel chair with Proloquo2go (communication app) app on her Ipad. We then tell her it is coming and she cheers. We wouldn't have seen this 12 months ago.

Faith loves being free and exploring. Here are some pics in her current mode of transport. It doesn't support her much anymore but she loves exploring in it just the same. Faith has been everywhere in that stroller and she has had loads of fun but Faith is ready to be a big girl and explore on her own. We took her down to the creek's edge and sat her on a rock dipping her toes in and having a splash. It was a bit cold but she was very content. We all love taking a road trip.
We love our Nissan Xtrail.
crossing at Washpool Creek, West of Baryugil

Top Plains Road Clarence River

Thursday, 2 April 2015

Life has many seasons

No spring nor summer’s beauty hath such grace
As I have seen in one Autumnal face....

~John Donne, "Elegy IX: The Autumnal"

I love the change of seasons. Many years ago I lived in Armidale and the change of seasons is marked beautifully. A chill arrives and the wind starts to blow. The leaves change and so do the people. Life slows a little. The cafes become full with tea and coffee drinkers. It is like a book waiting to picked up and read. 

Living in the Northern Rivers of NSW with subtropical weather the trees take longer to lose their leaves or not at all and summer still reappears its steam room air. Seasons are changing everywhere. On the other side of the world spring has arrived and there is new birth and new life around. Whereas, summer has ended here and autumn is here. Autumn with the change of the leaves, the days becoming shorter and colder. Washing no longer dries overnight, it always damp, the air is heavy with wood smoke but people are in the parks and out walking and exploring,

Leaves of so many colours fall and trees become naked letting in sunlight that has for many months been dark and humid. Running as fast as I can through the leaves and feeling the freedom. But change is upon us in another way, Faith we hope will have her power wheel chair by month's end. This will mark a new beginning. A beginning of freedom, exploring, of accidents and crashes, of discovery. A lot of firsts will happen. No longer will Faith need us to move from room to room, no longer will she have to wait to be moved she can take off and hide from strangers, follow her favorite people around or just stop and watch. For years she has needed us to move from seat to seat or room to room, she will be her own person making choices. No longer can I leave her in one place to know she will be there when I return. She could be anywhere. I have longed for this change for so long and I can't imagine what it will be like only that it will be magnificent. This year the change of season brings a life change never to forget.