Eleanor's Fundraising Flyer

We are very grateful for all the wonderful support we have received in helping raise the required funds for Eleanor's feeding program in Adelaide. To help keep us motivated and inspired, my lovely friend, the talented Tanja from Candy Design Co designed a flyer that can be printed and distributed if you want to help in raising funds and awareness of Eleanor's dream to eat.


To view and download Help Eleanor learn to eat flyer click here

Please feel free to contact me if you require any further information on beckyjoyholland (at) gmail(dot)com

Eleanor's story was also shown on Weekend Sunrise and can be viewed on YouTube

Eleanor on Today Tonight

Our family portrait was taken last year

We had the honour of sharing Eleanor's story on Today Tonight Adelaide. We'd love to share it with you. 












Here is the link.

http://www.todaytonightadelaide.com.au/stories/eleanor-holland

We are making progress with the crowdfunding. Eleanor's Pozible Project is at $5,910. What a blessings to watch such progress.

Unlock your words with a walk

My feet hit the cement with a thud. My feet are so heavy as I walk pushing my screaming, cranky and tired toddler around the hospital grounds. Buses, cars and trucks race the traffic lights and the air is heavy from the exhaust. The air is touchable and it lingers heavy around me as I walk. All around me there is scaffolding on the buildings, jackhammers and men yelling out instructions. People rush by not noticing what’s is happening around them. I watch a magpie fly over me (relieved it didn't swoop me) and then land a short distance away on the tiniest patch of grass. No seats just green luscious grass. There is no seating on the grass between the car park and the road people just walk past like they don't know what to do about it. It is nearly too perfect looking. As I walk the ground vibrates and other mums walk with prams, children pulling at their hands longing to be free and fluoro-coloured workmen in deep discussion with cigarettes in their sunburned hands. I continue with one foot in front of the other trying not to be run into. I feel totally insignificant among the buildings disappearing into the sky and the clouds sitting on their tops with the sun struggling to fight its way to the ground. I’ve never noticed until now there are not any bugs, no flies, no ladybirds only the occasional bird that has adapted to this abnormal environment created by man. The trees even look like they are gasping for air and longing not be cemented into the ground. The sound of construction trucks changing gear and hooligans on motorcycles make me want to cover my ears like a child saying “make it stop, make it stop”. The vibrations are felt in the depth of me. I take a deep breath in and out, I let out a cough and relax my shoulders. The tension that has been mounting causing my head to throb.

Where is a quiet place I can run too and escape the cityscape. As I look around the best I can find is the edge of the hospital grounds with its towering pylons and abstract art. The green benches simulating grass and the long poles brown tree stumps. As I stretch my eyes resting them on a far off hoop pine with its tired pale look, there is a sparkle of water. It’s the river. It’s the river attempting to fight the pollution and man-made influences. A river that bends and winds its way through the city. The sound of the trucks, cars and buses fill my head as I gaze at the river and its freedom but then it is also trapped and constrained as well. The hoop pine grabs my attention once again and a willy wagtail lands on the very highest point reminding me how I love little birds. It brings a smile to my face. The joy of watching life and nature at work among the intensity of the cityscapes. I think of home and feel blessed to live in the country.

My journey began as a walk to help Mr T to go to sleep, after hours of waiting at the city hospital for Eleanor to have a minor casting for a brace. But among the noisy, messy and chaotic city I realised I could find calm when I let go and let my mind absorb and wander.

Next time you take a walk and if you have the chance write what you saw and write the way the walk felt. Unlock those words it feels surprisingly refreshing and free!

My writing today was inspired by "the little red writing book" by Mark Tredinnick

Extra Steps: Food Play & Tastes

The moment she raised her smeared hand with the pear and banana puree and touched her rosebud lips with it sticking to her lips and chin I was astonished tastes were happening so soon. This might seem like a very small achievement in the scheme of moments to be celebrated but the last time Eleanor Faith willingly tasted the food was two years ago or more. For a split second my husband and I were in shock and then started cheering. Eleanor Faith saw this as a form of encouragement and continued to repeat her small taste several times. To continue to encouragement her on in her journey of food discovery we will be giving her a range of tastes in her drink bottle, starting with diluted apple juice and working our to smoothies, milk and other juices to help her in her journey. 

Pozible Fundrasing Update

Current: $4,000 - we are getting there

Target: $15,000

http://www.pozible.com/project/200432

A Week in Review

It has been just over a week since we launched our Pozible project. We have experienced many blessings with so many of you reaching out with your support through sharing our story and also giving to our project. It has been truly joyful reading your comments on the Pozible project page. It has inspired me to continue on reaching out to media outlets, newspapers, magazines, and anyone who can help us spread the message about Eleanor's story. If you have an idea or contact we would love to hear from you as we haven't reached our target yet. AND if we don't reach our target we won't receive any money. So our work isn't done yet. 

After several media interview's the local newspaper, The Northern Rivers Echo gave Eleanor the front page. The Northern Star also published her story. We love being able to share Eleanor's story in the hope it might bless you too.   

Here is the link to the stories in case you want to read and share:

The Northern Rivers Echo

The Northern Star

The Daily Mail

I have learned many lessons in the past week. I have grown in many ways. I have become stronger and been blessed by making new friends and finding support in many places. It is comforting when a writers group rally around you providing encouragement and support when I struggled at first with my first negative comments on my story. My story definitely engaged with the reader and provoked opinions, personal, indifferent and uplifting.Instead of recoiling and hiding from the nasties it empowered me to show the good and the blessing in Eleanor's story. 

Yes, we are asking for people to help us reach our gigantic goal of raising $15,000 but we also want to share Eleanor's story. She is strong and she is capable. She is accepting and never judges well unless you stop wearing your hat and sunglasses. She might talk at you until you put them back on. Her difference might be hard for other's to understand, but she shines goodness and happiness into so many lives. She is a blessing to me and I just want to share her bit of twinkle with you all.

 Here is the story I wrote for Mamamia and The Motherish. 

Any ideas on how to spread Eleanor's message please comment below or let's be friends on Facebook :-) or on Pozible http://www.pozible.com/project/200432

Eleanor’s story: The beautiful little girl who hasn’t eaten in two years

Eleanor is a gift. But she needs your help.

I gaze into her big blue eyes, long dark eyelashes and golden curls. I have learned every moment is a gift. Every milestone a celebration no matter how big or small. Sometimes it is a step forward and then a few back — but as long as we keep moving forward with good days it is okay.

When I heard my daughter sing for the first time, learn a new sound or word it is a delight to my ears. I never thought I would see her so happy and growing, but it wasn’t always this way. There is still a long road to take, but small steps are all it takes.

To read more of my story follow the link 
 http://www.mamamia.com.au/parenting/raising-a-child-with-a-disability/#17o1cOzIDMi3EILJ.99

Crowdfunding - Check us out on Pozible

I wanted to share that we have launched a crowdfunding project to raise the funds needed to take our darling little lady to the feeding clinic in Adelaide.

If you are able we would love your support through sharing our project.

Our aim is to raise $15,000 in the sixty days the crowdfunding allows.

Here is the link

http://www.pozible.com/project/200432

How will the money be used?

Hospital stay costs $1100 per night for six night's $6,600
Feeding Program Fee $3,500
Information about the program: Speech Pathologists, Dietitians, Occupational Therapists, Parent-Child therapist and Paediatrician provide extensive and personalised therapy to holistically and successfully wean children from tube dependency. The therapists are experienced at addressing the many issues and concerns which arise around the mealtime environment and a child’s behavioural response to learning to eat orally. The intensive week is the final stage of the weaning journey which often takes place over many months prior and culminates in the final inpatient component (Lively Eaters Feeding Service).
Specialists and Therapists costs
Travel from Northern NSW to Adelaide
Accommodation en route and up to ten days accommodation in Adelaide
Food and fuel for trip
Any remaining money will be used for ongoing support after program or put towards physiotherapy or speech therapy 
Estimate total cost $15,000

Here is the link

http://www.pozible.com/project/200432

Mind a Whirling

My mind has been working over time the last week. My thoughts went a little out of control and with a bit of less sleep I let them take hold. I have struggled at times to process everything that was happening around me. There were tears, some laughter and a crazy chat with an insurance guy (that made me laugh and distracted me) but also some serious thoughts.

I thought asking to have respite care at home was wrong.
I thought it made me a failure as a mother.
I thought I shouldn't need that extra help as I should be able to cope and manage on my own.
I thought I was doing ok.
I thought the tears that daily flowed were ok.
I thought I would feel uncomfortable.
I thought I could do it all.
I wanted to do it all.
I was wrong.

But as the day drew closer a realization that I was starting to become a little excited about some extra help. A little excited because for three hours, (twice a week for only six weeks) Faith would have a companion to read stories to her, do craft (she asks to do craft quite regularly during the day), be her hands to learn, grab, grow, explore and spend time talking to her. At first she was shy, but a walk around the neighborhood and some bee craft later, Faith made a friend. From then on Faith would tell me her companion was there for her and I shouldn't talk to her too much. 

But, there is nothing like a stroll in the sunshine to clear the mind, soak up the beautiful Spring weather and just have some quiet peaceful moments. Days might be hard and many battles to fight and compromise on but there is many blessings. The only exception that, is magpie swooping season and we narrowly avoided a magpie attack. The man walking towards us with a stick above his head was a warning for us to take another route. His zig zag direction to confuse the magpie was not entirely working as it flew low and straight at him. But then there were tears as that was the direction Faith wanted to go and we didn't want to risk the wrath of the magpie.

Today, I realised the blessing of receiving some extra help and support. I didn't realize how much I needed that support but sadly in six weeks it will end (no more funding). But we are blessed to have six weeks of a companion for Faith. An extra pair of hands allowed me not to worry about Faith when I was making my numerous phone calls and completing my piles of paper work. Or perhaps I'd forget it all and play with the little man while his sister was distracted. It was such a relief to have some support during the day.

Flash Back Friday

Flashback Friday to the day our little girl was born. Oh, the memories.

A new life is born

She couldn't breathe on her own. She had to have a tube down her throat to help her breathe. My husband went to be with our little one and hold her hand. She grasped his finger. It would be many years until she could grasp a finger like that again. 

We named her Faith because it was faith that sustained us through my pregnancy and faith that will keep us going too. I wish I could have been there too. They put a little hat on her head which I never saw again. I just have a photo of it. The anesthetist's assistant was madly taking pictures for us so we would be able to remember the day. Those photos are a great treasure, with such mixed emotions. Click here to continue reading

With Thanks to The Board Meeting

Small steps is all it takes and every one helps build the foundations for the future. We received a grant for Faith to receive three months intensive speech and feeding therapy. This therapy will not only help in her improvement in speech but will help us build skills in feeding (with the support of the feeding clinic in Adelaide) that will prepare her for the feeding program later in the year or early next year. 

I dare to dream that this time next year she will be eating and progressing even further with her eating and speech. I know she will as she just keeps improving. Our speech and feeding therapy afternoons are filled with afternoon tea (trying not to eat too much, though tempting), bubbles, learning to blow and suck, silly songs, learning to drink from a squeezy bottle and learning that food is a friend and not a foe. 

Thank you to The Board Meeting for assisting us in building the skills needed to progress to the next step in Faith learning to eat!

Building the groundwork to eat again!

As I write this blog post I want to be honest with you about the daily struggle and challenge it is having a child that is tube feed. 

But there is hope, there is always hope. 

At last we have started a program with Lively Eaters in Adelaide to build the foundations for our little lady to learn to eat. 

It isn't going to be easy. There will be many challenges and road blocks but it is start. It is hope. It is a beginning of a journey Faith is ready for. 

Hope that her days are not filled with vomit and being fed through a tube. But days that can be enjoyed with tastes and textures and experiencing the wonderful social experience of eating. 

I take eating for granted. It is so easy for me but for Faith, it isn't. She has an oral aversion and no longer understands or knows how to eat. There are many reasons this has happened and contributed to this but dwelling on them isn't going to fix the problem. My thoughts have lingered too long on what ifs, we now need to look at solutions and steps forward not back. Looking to the future. So with the great invention of Skype we have begun. Small steps is all it takes and it easier than I thought to just start.

After several years of tube feeds, bad habits and survivals habits emerged and a few simple structural changes has seen such a change in Faith already. Not just in food but in her. First, no more iPad, TV or play during tube feeds. Meal times, as they are now called, are at the dining table and we all sit together to have some food. Our little man is a perfect meal time pal for Faith with his exploration for food, let's get messy approach and love of food. He is always offering or stuffing it in her face. Faith allows him to do this but not us. 

Meal times now have a piggy timer, so Faith understands when meal times begin and when it ends. We sing grace before we start, start the pig timer ( fifteen minutes to start with) and all tube feeds are done out of sight so she can't see them and only sees food. She will have a sense by seeing food and becoming full instead of seeing her tube and becoming full. 

There has been tears, tantrums, sobbing, anger of frustration but overall Faith has had fun. She has even started touching some food. She knows coming to meal time there is no expectation at this stage on her to eat orally. 

Practice and being consistent are the key. 

Words can hurt, words can heal - The Huffington Post

The reason I write is in the hope that I can somehow help others and connect with people. So I am always happy when I can share my stories outside my blog.

Today, The Huffington Post is sharing my story on Words can hurt, words can heal, please feel free to share my story!

Thanks again for stopping by and feel free to comment, I'd love to hear from you!

Words hurt, they come back at me when I am tired, depressed, sleep deprived or struggling with a hard, long day. Those days that you feel it is impossible to continue but you do and wonder how on earth it was possible. The guilt I feel that I could have done something to prevent my daughter’s disabilities or my son’s minor health challenge (now fixed) haunt me. I would do anything to fix either challenges and I do. It is late at night the words sneakily return and disable reasoned thinking.  The ceiling becoming a notice board for my thoughts all pushing for my attention. “Could I have done more?” Then, I tell myself “don’t torture yourself” but I still do over and over again. Continue reading

Words can hurt, words can heal

Laying blame on mothers seems to be an “easy” out when their children are born with varying medical conditions or disabilities. I have had the questions and statements “you must have done this when you were pregnant” or even “there was a study saying if a mother took this medication or ate this food it would explain what your child is going through right now”.

I’ve had so many well-meaning and rash comments like these ones. But what those people don’t know is the hurt, tears and guilt caused. When I was pregnant I choose to go to extreme measures with taking the “correct” vitamins, eating the right foods and following medical advice. During my first pregnancy I drove my husband crazy with my obsessed eating of the “right” foods. Second time round I learned more ways to adapt while eating what I felt was right for me.

Words hurt, they come back at me when I am tired, depressed, sleep deprived or struggling with a hard, long day. Those days that you feel it is impossible to continue but you do and wonder how on earth it was possible. The guilt I feel that I could have done something to prevent my daughter’s disabilities or my son’s minor health challenge (now fixed) haunt me. I would do anything to fix either challenges and I do. It is late at night the words sneakily return and disable reasoned thinking.  The ceiling becoming a notice board for my thoughts all pushing for my attention. “Could I have done more?” Then, I tell myself “don’t torture yourself” but I still do over and over again.

As I write, I await my son’s final minor surgery and words of “you should have done more” are stuck on repeat in my mind. I can even visualise the person who said it. It’s not worth the fight, I walk away least I say something I will regret. But then, I think of those people whose words bounce in my mind attempting to destroy my peace and I realise most of them would not have seen their child held done to perform medical procedures numerous times or seen the look of fear and questioning of “mummy don’t do this I trusted you” while the gas mask forces them to sleep for surgery. It never becomes easier. Or the missed moments of normalcy.

It is those challenging times my heart reaches out to love my children even more desperately trying to forget the words of hurt and striving forward. I know it is hard for outsiders to understand, comprehend the challenges we face but laying blame or sharing new ideas of research adds to the burden. I know I’ve done all I can as a mother but the words that fall off your tongue do affect and do hurt. People often look for a cause of a problem. They fail to see that sometimes it is just the way it is or just bad luck.

Words can hurt

Words can heal

What did yours do today?

Saying Thank you

Thank you Lismore City Lions Club

Saying Thank You!

It is not often we have the opportunity to say 'thanks' for helping. Recently The Northern Star ran a story about our delightful little lady and her journey in becoming mobile.

We are pleased to announce that little miss has her power wheel chair and loves it. She is learning to drive the power chair but particularly loves going around and around hooray!

The moment I watched her take control of her chair and explore was just amazing. For the first time in her life she went where she wanted. She explored, crashed, felt the leaves on the trees and delighted in her world.

Thank you to Lismore City Lions Club for helping our darling daughter reach for the stars!


Here is the story if you would like to read it Confidence Boost for Eleanor

No Negativity Journal in Womankind Magazine

I am feeling very honored to have my No Negativity Journal printed in this month's edition of Womankind magazine. My first story to be printed on paper!

You can buy the magazine from here http://www.womankindmag.com/

Day three: Negative thoughts are attacking my head. I'm putting up a mental red stop sign saying: "Stop, you are not allowed here". Check more out 

Now on Facebook!

Find me on Facebook

I have been debating with myself whether or not to have a Facebook page and I decided I would. So if you would like to keep up to date with what is happening with Faith and articles I have published I'd love to meet you on Facebook.

Hope to see you there!

Becky

Fundraising for a Car Modification - Can you help?

Faith going for a walk in the park in Armidale
happy days!

I have been a bit quiet on my blog as late as I am currently studying but I will return in a few short months.


Our big quest at the moment is raising funds to modify our car so that I can take Faith out and about. Wonderfully Faith has her power wheel chair and it is wonderful, but it is too heavy for me to lift in and out of the car (it is 60kgs plus). It is crucial for her back to be supported to slow the progression of her scoliosis so we are desperately raising funds so we can modify our car.


The cost of the modification is $6,880 and we currently have no funds for it. Since we have just raised so much money for her wheel chair there isn't many options left. We feel very blessed to have been able to purchase her power wheel chair.


If you have any ideas or know of any groups or organisations that might be able to assist I would greatly appreciate your comment or please feel free to email me.



It's hard asking for help but if you would like too below is our details.


Bank: The Greater Building Society
Account name: RJ Holland (Trustee)
BSB: 637 000
Account number: 720 378 256

You can contact me:
beckyjoyholland (at) gmail (dot) com

On Holidays - Exploring - Part 1

Faith loves to explore and we all love to take long walks,
 especially when it is wheel chair friendly!

It is time for a change of pace and scenery and so we take to the road at long last. A road trip!


We have been blessed to be gifted some time away.

Outside Coffs Harbour

Blessed to have such a view - Coffs Harbour

How My Daughter Taught Me That Every Moment Is A Gift - The Huffington Post

How My Daughter Taught Me That Every Moment Is A Gift. 

I never thought I would have the chance to see what it is like to see a child grow healthy and strong without medical intervention. It is a beautiful experience. It is so easy to compare milestones when your child doesn't reach them. So for now, and this moment of beauty, I have chosen to make my own.

Drop by The Huffington Post to read more.

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

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.

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.

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.

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. 

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

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. 

All things hats!

It is not uncommon to find us with hats and sunglasses on at six o'clock in the morning. It will be dark and we have the lights on but Faith will say 'mama hat' or point to the hats. 

Faith's fascination with hats begun a few years ago when we were on a picnic with family. We were reading a book about Play School and looking at a picture of a blue hat with a yellow flower on it and then there was 'hat'. Hat is still the favorite object and word.

Faith loves hats. If you want to make her smile, wear a hat. Today when she went for a walk with her grandparents and they watched tennis, she apparently became quite offended when the boy playing took off his hat.

The most serious argument at our house is 'mama hat' 'da hat'. The answer isn't always yes and there are tears. Faith's big blue eyes well up and out come these huge tears that she carefully wipes away.

All things hats make Faith happy and at times help her make new friends.

I must admit I am the one to blame as when I was young I had a big collection of various shapes, colours and styles of hats.

Next time it's raining and overcast spare a thought for those of us wearing hats and sunglasses inside. Enjoy you day!

Confession: I never realised I'd cry

In the last few days we went to a fundraising event that raised money for local children with disabilities. I had found out about this charity from a friend. We had never been to a general fundraising event that had the possibility of assisting us. It was a new experience. We were running late and arrived towards the end. The four of us were heading towards where we thought the event was and then we heard talking through a microphone. Instantly we stopped. What we heard was something like this, "We thank you for coming today and raising money for these kids. When you don't have the ability to move around on your own or be independent a wheel chair can make a difference, or when you need money for therapy, these are the things that matter to these kids and we thank you". My heart skipped a beat as the crowd was silent. To see so many people come together to help local kids in need. To give their time, support from their business and pay an entrance fee to be part of the event. All to help kids they don't know. It is truly inspiring and encouraging. 

We wandered in and it was one of those moments where there is complete acceptance and kindness. The organiser of the event welcomed us with words of encouragement and thankfulness for us attending. When it was us that were thankful for even considering helping us in raising money for Faith's wheel chair. When you have a child that is unwell a lot and you receive many questions sometimes challenging ones from strangers it can be confronting, but here, it wasn't. There was care and genuine concern. The words were ones like "what is this little one's special need" or "doesn't she look good for what she has been through" or "doesn't she have lots to say" when they can see she struggles with speech. There is so much good in people, in strangers that become instantly friends. I met some dear people that day and even though I might not remember all their names I will never forget the kind words and encouragement. It is those moments tears sneak up on you with such gratitude and love. Sometimes that is all you need to press on.

If you want to check out the event here is the web address The Board Meeting

Choosing battles

What battles to fight? That is the question I am always asking myself? When to stand up and when to just let something go? Isn't that something we all struggle with. When some unjust deed is done to us or we see someone treated unfairly or perhaps someone is struggling and we do nothing. Do we stand up or do we place it in our too hard basket by not wanting to become involved or cause conflict. I dislike conflict and I want to be liked. I am learning to be liked does not always achieve what is needed.

Not long ago, a man is in a power wheel chair going along the footpath and you see him struggling with a branch fallen from a tree. He cannot go around the fallen branch and so he struggles. It is a busy road and not one car takes a moment to stop and ask if he needed help. Maybe he was fine and wanted to fix it himself but just maybe he needed a stranger to stop and ask the simple question of whether he needed help. Are we ignoring our community too much because of fear and conflict.

Today, we enrolled Faith in swimming lessons. We were invited to a private class by another mum and eventually the teacher was open to the idea. It would give Faith the opportunity to socialize, watch how other kids learn and be in a group with two other little girls. All important concepts to learn. 

Eagerly Faith points to her floral pink swimmers asking if it is time yet. The indoor pool area is humid and on entering I feel the need to swim to relieve the heat. Faith points at the pool and starts asking to go in. The water is cool and refreshing. There are parents sitting by the waters edge with their little ones splashing around. Faith was so eager to enter the water but now she is overtaken with shyness of her surroundings and new people. The class is made up of Faith and two little girls it is full of fun - singing, learning and loads of splashing. Faith mainly observes the lights, the balls, the boards and the kids. She takes an interest in one of the little girls hair clips. She points at them and smiles. Afterwards as we float around relaxing before we force ourselves out of the water I peer at Faith and her blue eyes are bright, alert and happy. What a good note to end on. We head out of the water.

On leaving we are discussing the next class with the office staff and we find out that Faith is only able to attend this terms lessons as it is a "private class" and the class it capped at two. It is a council run facility to benefit the community. I explain that the other two mums are happy to have her and the teacher seems happy. But no that is not how they work. Two ladies stand on the other side of desk friendly but not resolving anything. Other classes have four in them but because it is listed as a private class there seems to be no avenue around it. I am torn. I try and resolve the issues but they don't seem interested or is it unable? I explain that we are not looking for extra assistance but just for Faith to be in the class. We are paying customers and still they don't seem interested. Yes, I could just take Faith to the pool but it is the group session that is beneficial and being part of a group. Seeing other kids and how they do things. She just wants to be included and do something normal. Having one on one classes have their use but this is to help her learn in other ways too. I explain this. At first, I was angry but then the disappointment that yet again it isn't easy and everything feels like a battle. 

But what if I didn't do anything all the time? I would just be a doormat and I wouldn't be happy. But it is also important to pick the battles and choose them for the right reasons. Peace is the best choice sometimes. I know I have to be completely happy with my decision as if I am not I will have that horrible feeling in the pit of stomach telling me I did the wrong thing or was it something I ate? 

So I took a step back and thought about why I wanted Faith to have these swimming lessons and what she would achieve in them. I just have to choose a reasoned and calm approach. I might not always get my way but I do my best for Faith and hope others can see that too. It can be challenging choosing your battles.