A year and a half on…

Whoa its hard to believe that it has been five whole months since my last post! Just getting on with LIFE took everything thang we had and there was nothing spare to document and share our experiences. But I am ‘back in the saddle’ so to speak. I love the wonderful interaction I have with people regarding the blog, whether its right here in town as I apply sunblock to the kids at the local pool or from far, far away. I’m keen as mustard to start posting about a whole range of stuff we are going to try this year but first lets have a wee look back at where we have come from.

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June 2015 Matilda in intensive care and hardly responsive.
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Matilda circa 2016! Rockin pink hair ends!

A year ago I started to write a post that I never completed. It was to be called ‘Meanies everywhere.’ which was a phrase Matilda used one night when frustration overwhelmed her and reading it now I can feel the pain of those days. It went like this:

You know I planned this as a blog about treatment and rehab. But as time goes on learning words seems far less imperative to learning LIFE. Matilda rails against having to practice the skills she once knew and this week has tearfully explained that her friends don’t want to play with her at school. She says she asks them to play with her but they say they are playing with someone else and she can’t play too. This is so common at school where alliances form and change on a daily basis but for Matilda it says one thing. There are ‘meanies everywhere’. Mum and dad are forcing me to do all this horrible work and now my friends don’t want to play with me. As she scratches at my face, rips up her homework book, pulls at her own hair and says that she wishes she was dead, I keep insisting that we move forward, finish the work and hold her tight in a sweaty hug. I feel like a meanie. I also truly believe in my heart that if I don’t help her to recover the best I can, if I take the easy complacent route, that I will be a meanie too. As with her friends who need time away from her strange social skills and are not mean, I am not mean either but bloody hell I feel it!-

Reading that a year after I had written it wrenched at my heart but also made me realise just how far we have come. It must have been a bad day as her friends have been great! Yesterday Reuben started high school and Matilda started with a new teacher and class aide. Everything was a little topsy turvy with a couple of our standard glitches but pretty much all family members had a likeable, interesting day and there was no mention of ‘meanies’ lurking. The kids both exuded an overwhelming sense that despite the hot, sweaty  weather…..everything was COOL!

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2016 ended with a bang. Matilda won a Shining Star award at her dance performance and Reuben was ‘dux’ of Year 6 after a really weird year – proud parents!

The crazy thing is that this is not because of some ‘magic pill’ that has ‘fixed’ our lovely Matilda or that she doesn’t still struggle on daily basis with what she has lost and dealing with the consequences of her acquired brain injury. It is simply that we, as a family, now operate like a well orchestrated machine (most of the time). We work together to lessen the chances of blowout and when they do sneak up on us, we all act to neutralise any negative feelings as quickly as possible.

This high level of awareness or ‘being on call’ in your own home/life all the time can and does take it’s toll at times. The restrictions of what we can and can’t do in a day, where we can for holidays (Is there 24 hr emergency department near by? How long is the drive? Is there a quiet space for day sleeps? ) and feeling very timetabled (medication and meals at set times, has enough water been drunk, is there the right kind of food in the house and watching her 100% when swimming because of seizures etc) can really grind you down even though they are the very things that enable Matilda to function as well as she does, to be as MATILDA as she can be.

We have also learnt the power of accepting help from our wonderful friends, family and community. Just one example is a wonderful friend who enabled us to have less anxious nights by having a device fitted under Matilda’s mattress that sets off an alarm if she has a seizure.  Without it we would have spent half of our nights sleeping on her floor with one eye open. The respite that this has given us has been immeasurable! We may soon be able to move onto a similar device that she wears on her wrist that we are experimenting with at the moment. Such generosity and thoughtfulness has repeatedly stopped our ‘titanic’ from sinking.

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Mostly we’re working on not sinking but have the occaisional “flying” moment like Jack & Rose (Titanic 1997).

So here’s a snap short of our  ‘HAPPY BRAIN – HAPPY HOME MANTRA’

  • water  – a least 1 1/2 litres over the day – little bits all day.
  • protein – at every meal and snack times (argh that can be a killer to work out).
  • exercise – a daily dose and even better if it challenges balance or dual tasking.
  • sleep – regular, good quality, lots of it and not when overtired or at wits end.
  • seizure monitors – oh that peace of mind for parents!
  • get outta here – have breaks away from home/change of scene.
  • socialising – trying to sustain everyone’s friendships…even if only tiny doses.
  • fun – replacing memories of hospital and loses with good times.
  • therapy – keep going back there, teaching to mastery, reteach when forgotten.
  • technology – looking at software/apps that may help with memory/literacy/typing
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Powerpoint for talking with Matilda’s class about her Encephalitis and seizures. Its a little emotionally exhausting for both of us but SO WORTH IT!

And my final mantra item is HONESTY. We try to call a spade a spade – with Matilda, with each other and the world. We talk openly with her about having ‘a big scar’ on her brain and don’t make promises like ‘everything is gonna come back if you work hard’ that may not be true. I tell my friends when I feeling ground down or like I want to run away from home. Reuben tells us when he has had a gut full too. If all else fails there is always yoga, kite boarding or singing the songs from Matilda the Musical at top volume in the car!

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“Never again, will I doubt it when my mummy says I’m a miracle” – Revolting Children

So bring on 2017. I’m really looking forward to sharing whatever mischief we get up to!

 

 

 

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Not the PG version

The other day I walked into our local cafe and the lovely lassie behind the counter asked how I was. I said “O.K” She replied “Really?” with a quizzical look. Then I gushed, about Matilda have been in the hospital emergency department on the weekend after her first seizure since leaving hosiptal and so on. As I walked away I wanted to kick myself. My mind kept saying  – “She wasn’t really asking how you were. It’s just you know, manners. And now you’ve really brought her down!”

A few days later as I lit our fire I found an article that I hadn’t read in the newspaper about a family facing their worst fear everyday, as their daughter has Batten Disease  (link here)  Her mother explained that her TED talk was a….

“PG version of life” with a dying child. It didn’t include their bleakest and darkest moments, such as the times when she arrives at school pick-up fresh from talking to her daughter’s doctors about her end-of-life plan, or the never-ending rounds of doctors, specialists and therapists.

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Life is not all sugar coated – although Matilda was after the donut game at her birthday!

Something about this really resonated with me and my concern that I had been too publicly honest about how I was feeling. How are people to know what is really happening for carers or anyone for that matter, if we don’t let a little bit more of the truth out.

I don’t want to live in a PG version of life, I don’t want my nearest and dearest to have a disney-fied idea of what is happening in our home. I know that being open has its down sides – I do not want Matilda to misinterpret honesty for being ‘publicly shamed’ if we are for example talking about dealing with meltdowns  and sometimes talking over things can bring you down rather then let you take a step into the next part of your day, your life.

It is a balancing act but I think for me, I have decided not to beat myself up if I tell people honestly how I feel, what is going on. As the kids have said since pre-school “Sharing is caring” and honesty enables understanding that can lead to compassion. So if I ask “How are you doing today?” remember I really want to know and not just the PG version.

Grief, birthdays & the anniversary!

At the end of May Matilda will celebrate her 10th birthday. I am trying to focus my mind on how we can make this a really special birthday for her, within the perimeters of her fatigue and currents likes/dislikes. But you know, for all we are celebrating her wonderful birth, it is also the anniversary of the worst times of my life, the darkest days. On the morning of Matilda’s 9th birthday or maybe the evening before, I can’t recall now,  we decided to call it and cancel her slumber party. As we gave her our presents on that Saturday morning, I remember Marty saying he wished we could re-wrap them and give them to her again as she didn’t seem to really notice them and couldn’t enjoy them as she was feeling poorly. Over the next 48 hours the HSV encephalitis was attacking our daughter’s brain without us knowing and then we all fell down the ‘rabbit-hole’. When we returned from hospital the bags of party supplies were just as they had been and I had no idea what to do with them – mostly they are still in my wardrobe untouched. It is such a strange swirly place to be in – to celebrate and grieve in the same moment. Confusing like biting into food and it not tasting the way you thought it would, you know an apple tasting like a beetroot. I knew that I would start to feel funny as the anniversary of taking her to hospital drew near but the nauseous, weird floating, out-of-body feelings are coming on in waves, that are faster and closer together than I expected. Like being in rough surf, I fear that I will fail to find a clear breath, that I will drown.

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Matilda asked her neurologist if she could see her brain, so here she is looking at her MRI

I had a prelude to this as we were walked around our new hospital complex. At the new wards, our guide said that he was going to show us the nurses alarm systems. I kinda didn’t think about what that meant. Then he hit the little green person – the ‘nurse I need a wee.’ type one, and then the next one – ‘I’m a nurse and I need some assistance in here now.’ and finally the loud tinkling one – ‘RUN NOW, ALL AVAILABLE STAFF, HELP ME SAVE THIS PERSON, WE WILL ALLOCATE YOUR ROLES AS YOU GET HERE!’ My knees went from under me. I will never forget that night with Matilda, as one nurse turned to the other whilst Matilda seizured and said ‘call it’. Luckily for me the head of our mental health team gently  moved with me to another space and chatted to me about Reuben and family. The surf flattened out and I could breath again.

Grief is such an odd individualised thing. I know that Marty, Reuben, Matilda and I will all experience this anniversary in vastly different ways. It’s like an Escher drawing. If you look at our current situation from one angle it appears like one thing and yet from a different angle it is something totally different. Grief and celebration fuddling along together.

Matilda wanted to cartwheel near the top of a cliff yesterday without any apparent understanding of what could happen if she stumbled. Fury ensued as we tried to explain that caution was required in that location. I couldn’t help but think to myself, ‘And there it is, this encephalitis-alter ego, when so often now, sometimes for hours at a time, everything can feel normal.’

We have so much to celebrate in terms of her recovery, her ongoing slow but steady progress, the close-knit love within our family and wider kin, the warmth and compassion of our friends and wider community, the lessens about life and love that this event has shown us (shame it took being slammed against a wall to learn the lessons!). Matilda and Reuben are extraordinary kids but then again I am biased.

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Saying Goodbye in grief.

I was watching an episode of Offspring on DVD the other night, where Nina says goodbye to the ‘ghost’ of her deceased husband. She wants him to stay with her but needs to be able to really live her life. She needs to say goodbye. Bizarrely, I feel slightly the same about some of the most awful moments we went through in the hospital. I almost don’t want to let their memory go because they remind me of just how special, wonderful and brave Matilda, Reuben and Marty have been. Without those clear memories, maybe I will forget that the wonderful version of herself that she is today, has been really fought for, enduring so much to get to where she is now.

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Sewing a pillow-case with the lovely Joanne last weekend.

So there we are, grief and joy together. Birthdays and anniversaries. Being bowled over by feelings and knowing that many friends are coping with their own stuff, worse stuff. Its such a muddle to be a human sometimes 🙂

The hard times and the good.

We have had a pretty ghastly week. As Matilda has adjusted to a new classroom, timetable and teacher (all wonderful), she has become increasingly agitated at home. This seems directly proportional to how fatigued or overwhelmed she is. In practical terms this means rages, slammed doors, risk-taking behaviours that lead to accidents, disturbed sleep and eating patterns and global distress within the family. When weighed down by having to strategise every minute of your day to avoid ‘making things worse’, fatigue and the crankies settle in quickly for the rest of us. These times of fear and distress can seem a million miles away from her or our public persona. I take my hat off to all home educators and carers of any kind.  Navigating our path through the hard times and the good has only just begun. Missteps happen often despite the best planning and lessons seem to be raining down on us like a waterfall.

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Roller coaster of hard times and good.

Despite having a research-loving brain I have only recently started accumulating more information about Encephalitis. In my travels around the web I came across a public update by a doctor about his wife’s Encephalitis (click here to watch). Very similar to Matilda’s.  The hairs on my arms stood up and my tummy churned, as my heart filled with empathy for him. The frustrations and difficulties that he was living with were so similar to our own but in an adult version. There is a silent, hidden pervasiveness to this type of brain injury – it has such a huge impact on the individual but the poor insight, memory issues, temperament changes stay hidden as though they are through the cupboard in Narnia.

People talk about respite but this is simply not a possibility for most people. I feel like I need to learn how to have ‘respite’ in my head. After the ‘hard times’ the feeling of tension lingers like a stale odour that is hard to shake. My mission statement is to try to learn how to be mindful. Be on alert when needed and let it go as soon as possible. So easy to say….

Watching an amazing Ted talk by BJ Miller (American palliative care and oncology doc) (click here to watch) I felt renewed inspiration to practice this hard task. He describes being in hospital after being badly burnt and losing three limbs. A nurse smuggled in a  snowball from the soft new snow falling in the outdoors that he could not go forth into.

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Reaching and holding ‘the good’.

The snow, the compassion of the nurse, being part of the world made him choose life. My husband is a far more bounce-back character. His resilience is way higher then mine. I struggle with the struggle.

Matilda often struggles with the frustration of clawing back the skills she has lost. The frustration of her lack of freedom and not understanding what the world or her body is telling her. She practices and is brave. And then she practices some more.

My ‘practice’ is to find that snowball every single day no matter how crappy it has been. There is always a hand held, the soft sound of her breath, the tenderness from Reuben and Marty as we hold each other tight in the storm. There is going to be no ‘man overboard’ in this family. We are each other’s life raft.

And when I can’t find my ‘snowball’ I have to learn to walk out of the room, kick something soft, breath deep breaths and keep going. Surprisingly a friend having a cry down the phone with me made me feel so much better. At first I just couldn’t understand why. And then it struck me, I didn’t feel alone in that ‘hard time’ moment. The range of colours was exposed and she held on tight with me. A blessing that night.

I wonder at my motivation in writing this. I feel disloyal to my brave Matilda but more than anything I want to be ‘simpatico’ with other families going through the same thing, like the doctor and his wife. After the acute period dies down little is said about how hard this can be and it is such a long, long adventure.

Snowballs and honesty. Really people!  Well thats all Ive got so far…

 

Talking to your child’s class-Advocacy

On Friday I had the lovely opportunity to speak with Matilda’s brand new Year 4 class.  I already knew a lot of the kids but there were some sparkly new faces. Experience has shown me that knowledge nurtures compassion. I can’t tell you how many times I have overheard children talking about ‘the naughty one’ in their class, when I know that child has a some kind of special need but the confidential nature of my work prevents me from saying anything. It breaks my heart. I want to stick up  for the child and explain why they are a little different and why it is OK. So I know that kids and adults alike, fill in the gaps when they don’t have a clear idea of why someone is different AND that the ‘explanation’ they form may not be accurate. I didn’t want this to befall Matilda. I have attached the video despite my accent sounding all over the place! Please ‘like’ it so that we can help other parents to locate it if they need some support in this advocacy area!  

To see the video click on any of the red or italics text above or HERE.

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Using a powerpoint to keep the kids engaged.

I know that many people are terrified of public speaking and you can times that by  about a thousand  when its a bunch of wriggling kids eating their morning fruit (crunching noises in the background of our video!). But you know,  it is worth all the butterflies.

I have heard many inclusion teachers talking about waiting for ‘teaching moments’ when another child says something that is a bit wonky about a child with a (dis)ability in their class. The problem with this ‘wait and see’ approach is that many of those conversations, assumptions or worse case teasing/bullying moments happen away from an adults earshot. Also saying ‘Don’t say or do that’ is not the same as providing ‘the story’ about your child. It is ‘the story’ not the label or diagnosis that will enable kids to generate their own natural compassion through understanding.

Here are some really uncool ways I have heard kids and adults misinterpret what is happening for a child with special needs:

  • Headphone for sensory reduction – “How come they get to bring stuff in and we don’t.”
  • Quiet corner use – “Baby” “Teacher’s pet”
  • Stuttering – “Her talking’s so gay.”
  • Sniffing and getting into other people’s personal spaces (With Tourette’s Syndrome)- “He’s always naughty.”
  • Loud volume/Impulse control (Not deaf or hearing impaired) – “He can’t hear.”
  • I have overheard adults commenting of other people’s parenting skills when a meltdown happens in public.

I am not making these up and they are the tip of the iceberg. As Matilda is the picture of physical health outwardly and is good at brief social chats, many people find the idea that she has on ongoing significant difficulty (acquired brain injury) really hard to get their heads around.

Top Tips for Talking to School – Kids or Teachers

  • What is you intention? Ask yourself what is it that you are trying to get across. I had a few ideas.
    • Matilda is still bright despite what she has lost.
    • Matilda is incredibly brave and a really hard worker.
    • Matilda finds physical things much easier than thinking/talking/listening.
    • Matilda still does heaps of fun things but does get very tired.
  • Use pictures/powerpoint. Kids love something to look at and the visual learners will soak up the pictures more than the words.
  • Keep it short. My talk was 5 minutes in practice but was a way longer in reality and then you need time for kids to ask questions.
  • Practice. After I selected the powerpoint slides and wrote a bullet point script, I actually praticed with my own family and a bunch of kids from our street. Their approval was important to me.
  • Tears. If it is really new and you think you may burst into tears, have a back up person who can just read from your notes. I think its completely fine for people to see the ‘truth’ about how our lives can make us feel – not just always the ‘brave together face.’
  • Tell the story. Most people have no idea what serious hospitalisation or disability is like. Don’t be afraid to tell the story. The good stuff and the bad stuff. Kids are brimming with natural empathy and compassion but they need to know what happened/is happening for these to be ‘activated’.
  • Questions. It doesn’t matter if the kids ask you questions or not. They will soak up the information anyhoo.

Some people have said to me that they don’t want their child labelled or stigmatised and that ‘going public’ will make that happen. My feeling is that we should give kids more credit and have faith in them.  They know exactly who can read what books in their class and who is the strongest or weakest at sport. There is no fooling kids so we may as well keep them informed. The kids who tend towards teasing/bullying will probably go there anyway, and there may be a slight chance that understanding why someone is different my help them to reign in their urges to say the wrong thing. So…..

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Give it a go. The kids will help you along!

Learning words – verbs (actions)

Initially Matilda had almost no words and communicated with a dynamic range of gestures, signs, vocalisations and the odd almost fully correct question. Some of our very first speech therapy sessions targeted ACTION WORDS (verbs). I targeted these as it’s pretty hard to get your message across without them. They act as the ‘boss’ mapping out what else can happen in the rest of the sentence. So here’s a few ideas from the things we tried.

Getting everyone involved

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Dad laminating a gazillion verb cards.

One of the first things that I did when we got home was purchase a laminator. I cannot stress how much I love these machines! Cards can be made for Go Fish, Memory Pairs, hide and seek games….don’t get me excited the list is endless.

Making your own resources not only saves a great deal of money but allows you make resources that suit your life, home, culture etc.

Think about a ladder

As I wrote in a previous post I am a keen advocate of showing kids where they need to go when they are learning new words. I am the GPS that will help them navigate how  to learn or relearn their language system.

With kids like Matilda there is no way that you can expect them to ‘say’ a word before they really become familiar with it first. So at the bottom of the ladder is ‘getting to know the word’, way through to the top of the ladder that is ‘using that word in spontaneous conversation’.

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One step at a time!

Our ladder went something roughly like this for Matilda:

  • Listen to the words and watch matching gestures.
  • Try the gestures.
  • Use gestures and a rough approximation of the word.
  • Use gestures and the word.
  • Start using the word in daily life and in short phrases in games.
  • Start using the word in longer sentences in games.
  • The word starts appearing in everyday chatting.
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Matilda is often joined by a friend and my job is to keep it all on track!

With most new groups of words, Matilda starts her practice in structured games with me – set rules and a set answer being targeted. I always take the first few turns so that she knows what is expected of her. Once she knows the words a little bit we often ask friends or neighbours to play with us. Then we try to incorporate the words into everyday activities. Throughout all of these steps the whole family has been SAYING the target words heaps so that Matilda really gets familiar with them.

Game One – Fishing

My personal feeling is that there is almost nothing in the speech therapy world that can’t be adapted to fishing. A cheap magnetic fishing rod, some picture cards and a few paper clips or staples and you are away.

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Pre School Action Words by Marilyn Twomey

I love these Pre School Action Words cards because they have very simple backgrounds but they are pretty expensive. You can make your own cards for common actions by cutting up magazines, searching Google Images or taking photos of family members doing an action.

To play ‘fishing’ you just take turns to FISH after placing the cards face down in a basket or on the floor.  I like saying the words with -ing as it helps with later grammar. I always add a gesture, so with ‘jumping’ I make my fingers jump on the palm of my other hand to the two beats of the word -> jump + ing. Kids often learn the gestures first.

Game Two – Charades

We often played ‘guess the action’. All the Charade action cards would be put into a bag and pulled out one at a time.

Matilda played this before she could say the words. If she could show us by drawing or her own gesture that she knew the action, then deal done!

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Game Three – Memory Pairs

At about this stage we started playing memory pairs. Initially I would limit the number of pairs to about 4 to 6 so that she didn’t get tired. I also place them face down in a grid of lines rather than all over the place so she can more easily find them. As always I started first, turned over my cards and said both words, repeating them several times. And then she follows.

We usually play that you only have one turn even if you win a pair. This is so that I can make sure I am modelling the words enough. We have used lots of the action word resources form Black Sheep Press which have super  pictures.

Game Four – Go Fish! and Snap

Maybe it’s the ‘fishy’ connection but where would I be without these games.

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Using a barrier between Go Fish! players.

The barrier ensures that the kids can concentrate on talking and listening rather than holding the cards.

I use an odd number or pairs usually about 11 or 13. Each child is dealt 6 cards. Any pairs have to be identified and named. Then I start with ‘Do you have……sliding?’. As Matilda developed longer phrases we would add  extra grammar words ‘Do you have…. He/She is sliding?’ Before Matilda could say the words she relied on gestures and drawing, then the word and now the whole question. Some Old Maid cards can be good for this game.

I have a whole drawer of Usbourne Snap cards and depending on what you are working on these are great for Go Fish! (half the deck) or Snap. When we play snap each player has to say what the action is as they place there cards down.

Game Five – Books

Finally we talk about the ‘actions’ in books. I love the book conversation to follow a ‘MY TURN THEN YOUR TURN’ pattern. We don’t read the words and it is more like a book chat.  I say a sentence for one page and she does the next. Any book where a character is clearly doing something can be used.

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‘She is yawning’  – from Alison Lester’s Alice and Aldo.

Well that’s action words in a nutshell.

Looking after yourself!

I don’t know about you guys but I am a great one for  offering advise to others that I am not so good at following myself! So in the interests of following this slightly hypocritical tangent, I implore all carers of people who have had HSV Encephalitis to LOOK AFTER YOURSELF!

I can’t tell you how many times I’ve  heard the airplane analogy over the past five months  – you know that you have to put the oxygen mask onto yourself and then onto your child. Professionals and friends say this to encourage me to make sure that I stay healthy mentally and physically so that I can be fully capable for Matilda and my family. But often it just makes me want to scream WHEN? HOW?

My husband and I have had quite different experiences of our journey simply through different family roles and personal perspectives. He is a ‘cup half full’ type of guy and has spent much of the time at work. I tend towards a little more scepticism, have professional back catalogue of knowledge (which increases my fears) and have been the one attending most of the medical/funding appointments. So even we may differ on how to support yourself….ourselves. I’d like to share some of the things I have tried.

Good fuel

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If you can’t eat healthily try to drink healthily!

In the dark days on the wards it was almost impossible to eat well despite our lovely friends bringing us home cooked meals. For a while we boosted ourselves with veggie and fruit juices with ginger and lemon. There are a lot of bugs in hospitals and trying to keep yourself healthy on little sleep, high stress and a poor diet can be tricky.

Make technology work for you

One of the young nurses in intensive care suggested that I start a Facebook page to help our family and community keep in touch, after I moaned at not being able to deal with phone calls or so many texts. It was a brilliant idea. One post, all done. I kept my words for Matilda.

Bend and stretch reach for the stars…

Exercise and fresh air are pretty crucial for me – they keep me on a mentally even keel but can be tricky to prioritise in a crisis.

Initially I walked around the hospital roof garden and after a few weeks I would leave the bed side for a quick power walk to a local cafe to grab a take out expresso. The round trip took less than 15 minutes but got me out of the air conditioned hospital. As Matilda became a little more capable I was able to leave her with close friends and family for an hour and swim at a local pool. Every time I returned, I felt more capable that the saggy self who had slunk out.

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The pool I could use at a private school close to the hospital.

Once in rehab I started doing yoga from Yoga With Adriene on-line. Matilda hated me doing it beside her bed so I ended up doing this is the en-suite. Led to some pretty funny looks when the nurses changed over in the morning.

We all have to find what feels good and try to squeeze a little of it into the day. I have become the queen of the 10 minute exercise session. I rarely say ‘I don’t have time’ anymore because I know that even a little wincy bit helps me have a better day.

Unpack the bag – finding the right people to talk about it with

When the social worker first booked to see me at the hospital I was like’I don’t have time for this!’ but also a little ‘I don’t wanna talk about this again as I am sick of bursting into tears.’ but she was right and I was wrong. I did need somebody who wasn’t so close to the situation to express all my messy feelings to. I didn’t want to load up my family and friends with more that they were already dealing with but needed to let out some of my own fears and anger somehow. I am determined to try to find the right people to talk with as this long process unfolds.

Make something

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Wonky blanket from a wonky time.

I love crocheting and do it as a meditation. In the hospital we asked all of our friends to send us balls of wool for a blanket for Matilda. I could crochet in the dark whilst she was sleeping and when I was too exhausted to read. It is both wonderful and the worst piece of crocheting I have done in years…all wonky in the middle. But the process of making can sometimes really sooth.

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Recent attempts at hand building with clay at a local workshop.

Love & fun – partners and siblings

We are family! I was away from Reuben and Marty for months. We were all like ships that past in the night when we are normally more like a stack of cushions all bunched down one end of the couch! On the days when I was with Reuben we would stay extra long chatting in bed in the morning and lie together on the couch to watch T.V. We treated ourselves to more sushi than we could afford (his favourite) and Skyped the hospital when we could. My husband and I have managed one date night together in 5 months!  I can clearly remember our first meal back together again as a family and the first time we all slept under one roof. Every person and family will be different but simple gestures to show your love for each other become even more important when circumstances are pulling you apart. I think we all had to learn to bend and sway a little more or as Martina Navratilova loves to says ‘don’t sweat the small stuff’.

Guilt – The dark side

I have guilt about most aspects of my parenting skills as many people do. Taking time out for all the things that I have mentioned adds to my feeling of guilt that I am putting too much energy into myself and not into my family.

But here’s the thing, I also have a researcher’s mind. Over the last few weeks I dropped the bundle. My eating went pear shaped, I did hardly any exercise, I started avoiding social interaction and was spending heaps of time in meetings for funding etc. No surprise I ended up feeling lousy, covered in a stress rash and less able to make decisions/juggle everyone’s needs. Evidence showed me (and most of my friends) that not looking after myself was not such a good idea.

To use a Star Wars analogy guilt over looking after yourself is the dark side. Be  a Jedi for you and yours. Listen to the force, follow the force! It will show you what you need to be mentally and physically ‘match-fit’.

So maybe do something nice for yourself, get some fresh air, cuddle someone you love, have a nanna nap, eat well, get sweaty doing some exercise, talk to someone or make something wonky.

Take care ya’ll.

Talking about Encephalitis to teachers & classmates

During the last week that Matilda was in out-patient’s rehab I spoke to all of the teachers at her school and her classmates. It’s a large school of over 600 pupils, so the we started with those who would have the most contact with her.

Many parents shy away from ‘going public’ about their children’s difficulties/diagnosis  and I completely understand the fear that this may work against their child, increase teasing or stereotyping from labels.

After many years of weighing the pros and cons as a speech pathologist with client’s parents and discussions with local friends, I was very keen that Matilda’s peers knew what had happened to her to some degree. I believe that knowledge leads to compassion and that ignorance can lead to…well filling in the gaps. People often come up with very odd explanations for why a person is slightly different. I hoped that a little bit of understanding would prevent any misunderstandings and foster acceptance of her new self.

My talk with both the staff and her classmates was fairly similar – some easy medical information and strategies for communication.

This was part of it….

“Matilda would like you to know that she is not silly even though she can’t always tell you what she is thinking and is working extremely hard to rebuild what the virus took away.

If you are a friend, teacher or someone helping her in the playground, please be patient. She is great at drawing what she wants or giving you a clue, like making a circle out of a piece of wool to tell us she wanted an apple sliced. Asking her questions that she can answer with a yes or no is great. Is it at home? Is it at school? ”

Last night I came across a great resource for explaining Encephalitis to children between 3-9 years, Gilley the Giraffe Who Changed. It’s a fabulous little book published by The Encephalitis Society that can be purchased as a book, viewed on screen as a PDF or animation and has associated games. I know that I will need to have a chat with her new class next year and will definitely use the animation on their digital white boards.

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Although Matilda did not attend either talk, her friend Sia who had visited her often in hospital, was on hand to answer questions. Hands flew up all over the class and I had to smile when one child asked her “The Friend’s Lego you played with Matilda, was it a present or did she bring it from home?”

Great to know they really soaked up the take home message!

Play – the early days

When you and your family are side-swiped by something like HSV Encephalitis, it is REALLY hard to find pleasure in anything. It is so hard to breath, eat, shower and sleep, so the idea of laughing or pleasure seems, well absurd!

But here is the thing. You need it. I needed it. Matilda needed it too. Reuben needed it in buckets. Laugh, smirk, enjoy. Mix your grief and fear up with a little play and laughter or comfort, if it happens to find it’s way to you.

Here are some of the ways we did it!

Hipster barista consultant

One of the consultants (head honcho doctors) in intensive care had a beard, moustache and clothes that were groovier than I would normally expect in that setting. I am a massive fan of a double espresso and the minute I clapped eyes on him I wanted to pretend to order a coffee.

These were desperately sad days, full of uncertainty and bucket loads of fear. Each time the urge to order came over me, I had to stifle a giggle. I had a cough and needed to gown up and wear a mask. You can see where this is going…I too had to become a hipster-barista too!

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Therapy dogs

I can clearly recall the first time the therapy dogs came to our room on the wards. Matilda had been extremely agitated and distressed all morning and was now asleep. We were both exhausted. A gentle knock on the door and there was our therapy pooch. I was about to ask them to return another time as ‘the patient’ was sleeping but then checked if it was ok for me to have a cuddle. I sat on the floor and wept into his soft furry neck.

Dr Cecil Hellman describes how a Navaho friend explained that her grandfather, a traditional healer, told her that when you are exhausted from healing others you should ‘…stroke a horse or a newborn baby. Both of them are so full of energy. You will feel much better if you touch them, straight-away.’ (Suburban Shaman p166). We didn’t have a horse on the wards but lots of lovely dogs.

Matilda and I absolutely loved visits from the dogs and their owners. I loved that these compassionate people saw in their pets a special gentleness and innately knew that people like us needed a bit of a furry cuddle.IMG_0172

Visits from friends and family

Matilda was easily agitated and sleeping a great deal. Initially it was hard to imagine her being with friends. Every time I mentioned it she said no. Then her cousin who is about the same age came for a visit. They don’t know each other well but Grace was a gem. She quietly played with Matilda or just lay with her on the bed watching TV. When Matilda slept, Grace read her book. Soft, gentle and easy.

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This made me brave enough to feel a visit from a close school friend would be OK. I was so worried that it would highlight for Matilda the extent of all that she had lost. Our wonderful friend Kate suggested that she bring her daughter Sia up during a school day. This was some offer as its a pretty long drive (up to three hours in bad traffic!) and Sia missed some school. They would stay all day – play simple games, walk to the hospital garden for a picnic, do therapy sessions together and then sit quietly as Matilda slept. Sia was a great help in enabling Matilda to have baths without tears and help us all envisage a happy social future for Matilda.

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Volunteers

Lady Cilento Children’s Hospital had a range of volunteer services to support the children and parents. These angels in ‘green vests’ would show up in the evening, just when I was losing the plot and help us through the last few hours before bedtime. I would explain about Matilda’s language issues and one volunteer would generally be on ‘her team’. They played games, did craft or just blew bubbles.

Having other people in her life really took the pressure out of us being together 24/7 for so many months. It is invaluable to let other people help you. These play sessions let Matilda stretch her wings, not just talking to Mum, Dad or therapists. The time to just sit and not be fully ‘on call’ was wonderful after long days and often very sleepless nights.

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So if a little fun or pleasure finds a wee crack….invite it in, one tiny little sparkle at a time.