Hope? The Diaries of…

It has been so hard to hold on to hope these last few weeks. The Hope Diaries have paused. There has been much feeling of hope-less. It has been 85 days since Melbourne began Stage 4 restrictions and 225 days since my daughter has been to school. These numbers weigh heavily…if I let them.

Holding on to hope is not a passive activity, or so it seems. It feels as though I have not paid attention, so hope has withered like an unloved plant. Some hope injection is needed. Away from numbers. Away from politics and the growing anger of division between opinions. Back to nature.

Our mother earth has had time to breathe and rest. People have been working on their gardens and walking, admiring. It is beautiful to see. Flowers are popping up and changing every day. With slowing down and time and fresh air the earth is singing the most beautiful spring song. Here is hope. An immersion in nature can revitalise the drudgery. So this is where I shall refocus.

With that focus I see. Hope is in the lime green of new leaves growing toward warmer days. Hope is in the face of a flower reaching to the sun. Nature is smiling. I shall pause and smile back.

And, now, there is more reason to hope. Melbourne has an easing of restrictions There is light and joy sweeping across our city. Kmart is open! It will be a new version of normal that we step in to. My hope now, is that the appreciation of the littler joys in life remains. That the spring colours are noticed. That we can embrace the delight of family and friends missed. That pausing over hot coffee and conversation is savoured.

Let us hope the sacrifices have been worthwhile. I like to think we have achieved more than sit tight in a pandemic. Pace has slowed back to the time of my grandparents. Vegies are growing in back yards. Many have become sour dough experts. Waist lines on pants are covoid-snug with home baked goodies. Families are walking and riding bikes. Crafters are rejoicing new friends. Short courses online have nurtured our minds. And we have sat. Still. This new normal might just keep some of these slower paced delights. Let’s hope.

A day of Celebration

It is World CP Day. We chatted about it today and watched a short animation with Missy’s class. “Ian”. I was already feeling fragile. The character’s pain and derision; friendship and acceptance. I may have leaked a little around my eye balls.

I asked her opinion. Her words….”Love my CP. Not you be sorry.” I couldn’t even say the words to her teacher…wrote it down…held it up to the screen…cried. Tears of pride and love and loss and grief. All rolled into a mammas heart. But there is no “in spite of” or “afflicted with” or “confined to” here. This path is not easy for her or for us who love her. I would take her pain if I could. But she has a strong sense of self…she loves and is loved …she has community and friends…she has ideas and care and compassion. She is fierce…which meant she was a pain in my tush today but which is how she manages the hard stuff.

So we celebrate. Because Cerebral Palsy has brought amazing people and wisdom and friends and community…and her. She is proud of having CP . And we are immensely proud of her. Happy World CP Day. We are a richer and bless-ed world for our diversity. This kid we are raising ( well…she might be doing some of the raising!)…the kid in whom the untrained eye sees deficits has dis-ability….and dat-ability…and is all sorts of ace.

Episode 6

It’s school holidays! Well it has been for a week now. Missy has a sensible teacher who clearly says the work she sets is a guide and to help your child do what you can both manage. Yet I feel lighter to be free from the  (self-imposed I guess) pressure to do it all. The last few weeks of term have been challenging. We both have limped to the finish line of another term of remote learning. So here we are. Still in lock-down but enjoying a different version of being at home.

Last Monday we planted seeds. Isn’t that the epitome of hope? Especially since some of the seeds were well past best before. We planted them anyway. Hope is like that. Missy had fun poking holes in the soil and covering over to seeds. She will enjoy watching their progress and celebrating sprouting and growth. As will I. It was Spring Equinox on Tuesday. The day when both light and dark are equal, as we head to longer days of sunshine. So it was the perfect week to put a little morsels of Hope the in soil.

It’s such a pretty time of year. It could also be a nice parallel for life. A time of cleaning out the old to plant new seeds. Renewal in thoughts and spirit and goals. I’m in the mood to sort and chuck stuff out (anyone who knows me really well just fell off their chair!). It’s a rare feeling. Something bigger and better is on the horizon and I need to have a space…mainly in my head. The clutter fills my head as much as it grows in unbalanced piles. I feel strong and confident enough to be rid of things “I may need one day” but haven’t in the two years since we moved to this house. Spring cleaning is happening in preparation and hope for loveliness around the corner. Let’s hope the more relaxed time table of holidays allows me to get it done!

Episode 5 – The Hope Diaries

“Breathe out.” The support worker is here. A breath of fresh air after some cancelled shifts and a future-options-expo-of-frustration. Her support worker is here. Brightly singing the morning song. Our support worker is here, reminding us good will always shine through the dark clouds. I can be up here writing because the support worker is here.

The people we have around us are amazing. This expo last week was an example of people (to be fair, only some) offering a crumb to those with disabilities. At least that’s how Missy and I felt. They talked the talk but it felt as though we should be grateful for all they offered. That the way they “serve” those with disabilities allows them the old pat on the back despite the one size fits most approach. It is similar to the attitude we often see out in the community. “Oh you are so good to be out with her”, has been heard way too many times. It leaves a condescending bad taste in ones mouth! But this support worker, and all the support workers Missy has in her team, flip that.

They say that working with Miss K is learning experience and a joy. Because our girl gives she doesn’t just take. She inspires. She teaches. She heals. She is fun. She reminds us to chill and laugh. She’s skilled at perspective building. But not as inspiration porn. No. Those who appreciate attributes see her as a valuable human. She has so much to offer. Her future post school plans need to, and will, reflect that. It will be more work to develop a week based on her interests and skills and not someone elses perception of what she can do. But it will be worth the effort.

Last week, after the expo and in response to her sadness, I helped her to start mind mapping. She had a diagram of circles for strength and one for interests. Her face transformed when given the opportunity to lead the way. As she should. Because hope is amplified when steered by our own heart. And we are grateful that most people around us reflect that.

Episode 4

My spring window view. Leaf buds tightly wound waiting for the warmth to stretch and see the sun. Magnolia pink. Its very own shade. Birds protecting their space with a squawk and a swoop. Not even magpies but the introduced mynas. The smells will come soon. For now it is too cold. But temperatures are rising and awakening the soil. Bright daffodil heads bop their dance of hope. There it is – hope.

Hope is the bright yellow flower that emerges when the air is still cold and the ground wet. But it knows the warmth is coming. Despite not yet feeling it, the bulb, unseeing and unseen below the soils surface, trusts that the season of renewal and growth is just around the corner. Can I trust that positive change is coming? Yes. I think I can. Our world is struggling right now but that won’t be forever.

Facebook memories told me last week, that a year ago I woke in Perth for a conference. Five years ago Missy was waiting for the physiotherapist to come and help her with her breathing. Seven years took me back to the day of her leg surgery and double purple casts. One date through a couple of years of our history with such different experiences. We are used to riding the roller coaster more than many, so maybe we can be the ones to help others hold on through this downhill section when stomachs are left behind. We can be the beacons because we know how to light the torch…or at least are well versed in holding a sick bag! The daffodils of Covid-19. Bobbing, yellow, smiling faces saying this too shall pass.

Episode 3

Hope is a dish best served warm. It builds upon itself. Foundations of hopeful people shining encouraging light to others to add their own bricks and timber. It is as contagious as this virus. But so is fear.

It is a challenge to step away from the fear. What sounds easy is not. We tell ourselves, and each other, “Don’t worry”, “We’ll be alright”. I’ve been sitting in the muck and grime that is overflowing from stress, anxiety and the continual addition to our daily routine in the last few days. It’s hard not to. It’s not a comfortable place. Friends and family have been passing ropes. But I have to choose to hold on.

That is hope. Choosing to see and make the most of possibilities around us. It is a choice. A daily choice. Maybe a minute to minute choice on some days.  I am trying to implement little moments in my routine that help me to be mindful of the beauty and joy that are always around. When I don’t see it, it’s not because it isn’t there. It’s due to my eyes being too blinded by all the other stuff. So I try to stay in the moment and not stray too far forward. A hard task for someone who’s anxiety would usually play out every possible outcome like a movie on loop. So.

I will be mindful.

I will walk and see.

I will write and say.

I will look for joy.

I will be grateful.

I will search for the good so I may build on hope for me and my family and shine a beacon for others.

Hope is catchy.

Breathe it in.

Episode 2

It is a Wednesday and I am  crying again. So many tears over the last few days. I am sad and overwhelmed. A lovely little girl grew her wings and a gorgeous cousin had a birthday-versary. I felt the sadness of these but the sad is even deeper and longer. I am full.

I would like to say I’m full  of hope. The idea of the Hope Diaries  hangs around me still but it is more of a tick on the to-do list that I haven’t to-done. I am full of overwhelm. The PPE staring gloriously blue at my red front door was the last straw. It has brought clinical to our home. Our girl has become that someone who needs gowned masked Bandits to flit in and out rather than people to support her. At least that’s how it feels. 

All the balls to juggle barely staying in the air.  Update by 7:30 back exercises for me. Helper at 7:30am medications measured. Do some writing. Get the girl’s day organised. Walk the dog. Washing on. Help some more. Have a shower. Grab breakfast at 9:25 before the worker goes so I can sit and continue to school day with K. Find their school work on the blog. WebEx meeting from 10. Sending photos and emails of school work. I make phone calls or pee in between. The school day ends at 3, a time which gets earlier every day. Then my own students from 4. Dinner chucked together and eaten. More students. Kid to bed.  Then the cleaning. Door knobs, equipment, light switches. Clean the face shields.. Wash the day’s masks. Clean benches and tables. Put the washing out. Clean syringes. Screaming for a cup of tea. Falling asleep upright on a chair. Some email or other bits and pieces and bed, too often, at 12:30 or 1am. Then in only a few hours  it begins again.

I bawled at the front door when a support worker said it’s not my job to do it all. I do not have to know all of the answers to all of the workers questions. We are all so fed up and I’m carrying that. I need to put that down. It’s too heavy and not mine to carry.

Hope may live on…once my load lightens

Episode 1

This is a time of great challenge. Way to state the obvious, right! “How are you going with it all?” We keep asking each other even though we are trudging through a year that has given fire and flood, disease and dis-ease, storm and blighted water. This unique time is the future topic of history classes in which wondrous faces will ask…”Really? Toilet paper? You mean they could have stock piled chocolate and they chose toilet paper?” Yes friends we will be judged…by those actually listening anyway. I still picture future year 9 history students showing only a modicum of interest. I digress. How ever we currently judge powers that be trying to steer this sinking ship and whatever individuals are or aren’t doing in order to either help or hinder recovery from this virus, it’s a unique and intense time for everybody. It won’t just be history books reflecting. What will we all think of our own version of 2020 when have the chance to look back?
While I would often think of challenges as an opportunity to see just how full that glass is, I think we’d be hard pressed, any of us, to see this event as cause for a party. And if it was it would be via Zoom with a lot of “you’re on mute Nanna!” and the awkward, over the top of each other “No, you go”. You’d really be working hard to find a positive slant on this as an overall picture. But I think what we might be able to do, and what I am hoping to do for myself, is to find some tiny little aspect that I want to hang on to. Something that I’ve had to do because of this virus or because of lockdown. An opportunity for incremental change. Maybe it’s time to get rid of old patterns and habits that no longer work for me on a personal level. A time to cement that walking around the block habit and really enjoy making the effort. An opportunity to sit tight and look after myself. Maybe I can learn that I cant/don’t have to do everything/all the things. I can enjoy a bit of quiet time away from frantic mum’s taxi. Whatever tiny (or big) thing it is, I feel like if we all find one aspect, even something quite small, that we can each take on board as a means of growth through this pandemic hope will multiply. All of us are such important pieces of this puzzle that is the world. How amazing will it be to see every little thing we can manage flourish? You’ll do your little thing and I’ll do my little thing and someone else will do theirs and those pieces will expand into each other and it will be big. If we all can do our tiny little things, that we can manage, at the moment…change will be big.
In a meditation last week I felt the message that I should be writing about hope. I wondered how. I am barely managing to write at all. I feel this is an important historical time to note. But even with the idea that recording our thoughts and feelings and actions and the sorts of changes that we are continuing to make is paramount…I struggle to write. I battle to find the time and headspace to sit and write anything. So the message I should write of hope, while seemingly lovely, well… Maybe this is my first day.
I can picture all of us doing our tiny little things to become big. And big change means we have a way out of this. We have a way to the sunny skies and healthy, happy lives free of restrictions. Taking with us changes so that our lives on the other side of this pandemic are that bit richer for having to sit in this time of enormous challenge. That is Hope. You are hope. Episode 1, The Hope Diaries

IDfPwD

Today is International Day for People with Disability. So what is hoped for this day? As a person without disability I am not best qualified to comment. As a parent, I can say what I hope it means for my daughter.

I hope today was an average day during which my daughter lived her best life. As we hope for all of our children. For an important word in the very title of the day is people. People first.

Disability is a big part of my family’s language and our world. But mainly in the context of filling in the forms and doing the advocating so our kid can have the support and equipment to level the playing field. For this kid may do things differently but she has extraordinary abilities. The lessons she teaches, the people she brings to us and the experiences we have shared would not have been possible if she were differently differently abled (if you know what I mean).

In a world where many people still see a disability as a deficit we are privileged to see the truth. To quote the young one herself…”I better different because I cerebral palsy”. Because of. Not in spite of.

So here’s cheers to an ordinary day on which folks think not of “special” treatment but the support to have the same treatment and opportunities. Thank you kiddo for showing us the way.

An Ordinary Life

On World CP Day (it was over a week ago…oops) I pondered what Cerebral Palsy means for our girl, and for us.

This morning when it was hard for her to get her wiggly body to cooperate to get out of bed …that’s living with CP.

Her face lighting up to see her brother home from work…that’s living with CP.
Tasting the chocolatey froth on a cappuccino…that’s living with CP.

Complaining about too much watching of TV while mum is unwell and camped on the couch…that’s living with CP.

Having lunch time medications down her PEG tube…that’s living with CP.

Laughing at her puppy playing ball…that’s living with CP.

Sitting outside in the sunshine telling her mum about the important points to include on her individualised plan for school…that’s living with CP.

Being tired by the end of the day and falling asleep during dinner…that’s living with CP.

Smiling with her Adda over a cheeky taste of his drink…that’s living with CP.

Laughing…loving…living with CP.
World Cerebral Palsy Day was ordinary and extraordinary. That’s living with CP.