Monday, 20 April 2015

Having a disability IS NOT wrong

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. 

Monday, 30 March 2015

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!

Monday, 23 March 2015

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

Tuesday, 17 March 2015

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.

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