Hospital Birthday

Two years ago Matilda was as sick as a dog on the morning of her birthday. I remember her dad (Marty) saying he wished we could rewrap her presents up and give them to her again as she barely seemed to be there. Two days later we knew she had HSV encephalitis and our world changed forever.

Once again we have celebrated Matilda’s birthday in hospital….same hospital but a different type of life-threatening encephalitis (medical update below). So how do you  make a joyous occasion out of all this muck? How do you give her and us happy memories of turing eleven? Well heres what we did….

 

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Face-time with the lovely Cinnamon who couldn’t be with us.

Our plan was to keep it short but happy.  The past two years have really taught us to ask for help from our lovely friends and community. Despite the fact that it meant a day off school and a more than a two-hour-each-way drive, two of Matilda’s BFF ( shout out to Sia and Grace!) and parents joined us for a party. Marty was with her at the hospital, so Reuben and I spent the night in Brisbane so that we could be there at the crack of dawn…well 7 a.m!

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BFF’s in da house …..well ward actually.

After a serious amount of present opening the girls went of to The Starlight room (activity centre for games, face painting, craft & general fun for hospital kids and their visitors) whilst we decorated and generally took over the lush rooftop garden.

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Decorating pillow cases…sign your name across my heart!

My wonderfully crafty friend Jane had helped me purchase all of the required fabric crayons for decorating pillow cases and had even gone the full nine-yards by making jersey beanies on to which the kids attached giant pom-poms they made.

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Byron Bay Beanie Babes & Bro!

Passers by commented on our healthy party food (Dah, we come from Byron Bay man!) but maybe they hadn’t seen the raspberry cake surrounded by chocolate eclairs!

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Yum! Matilda almost ate the wrapper!

I started to shed a tear when the hospital foundation volunteers arrived with a pressie for Matilda. Those compassionate & generous souls in green aprons/shirts have made so many dark days better during our long hospital stays.

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Could she get any more pressies?
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Picnic and more unwrapping!

Finally it was time to pack up our party. To leave our lovely Matilda to chill out and let her brain have some recovery time.

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One last goofy photo!

As a family we can only pour out our immense thanks and gratitude to everyone who has helped us over the past weeks and especially yesterday to make Matilda’s birthday an event that she will recall with fondness and happy memories.

Medical Update:

Well, even our good days can be murked up by yucky stuff. Matilda had 5 seizures yesterday, the last of which was a fair doozy. Anti NMDA encephalitis is a horrible disease and its scares me when I read some of the awful consequences on the website to support families.

Matilda is 3/4 of the way through her first set of treatment with Rituximab (an IV infusion) and also monthly steroids/immunoglobulin treatment. Her severe behavioural changes have dampened down,  although they still flare up suddenly. Her seizures appeared to have been controlled but seem to be on the increase again despite being on 5 different anti-seizure meds. We love the team at the hospital and their care but this is very frightening stuff. She may come home after her last infusion next week but it depends on a whole heaps of factors.

Matilda has started doing more and even venturing a little out of the hospital. This disease will be with her and us for a very long time. Throughout the rest of her life she will be at higher risk of neurological conditions and relapse. And thats if we are

Last night I bawled my eyes out and for the first time asked ‘Why my beautiful girl?’. It is a silly question. This is not a targeted attack but an unlucky coincidence. I was sad that my family were separated, because Matilda & Reuben have had to be braver than I would ever wish them to be and because I am terrified about our future. But as her lovely friend Grace wrote in her card…Matilda has a lot of GRIT and so help me if she can have it, so can I. XXX

GRIT ON YA’LL

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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!

 

 

 

When therapy can’t be done!

Therapy! Whats that?  Sometimes we’re scooping up every last crumb of  energy to just get through the day. Our last month or so has really shown me a lot about what to do when therapy goes to hell in a handbag – other titles may be ‘Riding on the seat of your pants!’ or ‘Anything Is Better Than Nothing.’ or ‘Dammit,  Lets Go For A Run!’

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When the going gets tough daily ‘action sessions’ take priority over therapy!

In retrospect we left the hospital thinking that ‘the only way was up’. That if we just put in the right amount and type of effort, that we would be able to make slow but steady gains. There is much truth in this assumption but what we hadn’t quite expected was for some things to go completely pear shaped! Our neurologist’s euphemism for this is that stuff ‘evolves’ after this type of Encephalitis.

Over the past months Matilda’s seizures (previous post link here) progressed from simple focal or absence (Petit Mal) to the full-blown shakey kind that most folk imagine and call ‘a fit’ (Tonic-Clonic/Grand Mal). Even her paediatrician admits these can be bloody scarey  when you have no experience of them. The week of the first big seizure resulted in extreme fatigue and confusion for all of us. Then the poor little taker got the ‘wipe you out cough/temperature’ bug that had been going through our community. There were 14 kids away in her class the first day she had off sick! This delightful week of attempts to get temperatures down whilst being freaked out that they would throw her into a seizure was followed by our worst week of behaviour to date. We all know that even when our kids are babies, that their rhythms all go out of whack after being sick. Well, our ‘recovery’ week was a doozey (think about your average tantrum and times that by 17 million…O.K thats an exaggeration but you get the idea!)

Therapy was off the agenda. Anything that even remotely whiffed of a structured task led to screaming, biting, running away and general mayhem. And look I have to admit that as a speechie, it feels heartbreaking to not be able to work out how to reinvent a task to an ‘acceptable’ format for her when the storms are raging. It makes me feel like a failure but this gives me great insight into how many of the parents I work with feel, when the demands my profession place on them are simple not ‘doable’ at that time, in their home.

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Even a messy house can be converted into a mini roller-skating rink!

Luckily brain science and recent research has given us lots of ideas and backed up a lot of what our instincts (especially Dad’s who doesn’t have professional blinkers) about what to do so that we still feel like we are nourishing and nurturing her repairing brain, even when planned rehab/therapy is off the agenda.

COMPASSIONIF IT IS TOUGH FOR YOU, IT WILL ALMOST CERTAINLY BE TOUGHER FOR THEM.

  • It is so easy for everything to spiral out of control. Too many words and angry responses fuel more difficult behaviours.
  • We talk about the ‘crankies’ in Matilda’s brain having a rant but it is not Matilda. At least for us separating who she is, from what is beyond her control seems to help.
  • Let it go! This is hard but not impossible. We can have been defending ourselves from a range of flying missiles or be heart-sore from having a favourite object broken but within minutes that tidal wave passes and we try to continue as though it hadn’t happened. No blame, no shame, no hashing over, no analysis of what cannot be explained!
  • Grab hold of the good times with gusto. Family runs on the beach, cuddles reading books in bed, hunting Pokemon or building a treehouse. We all have our different ways to connect and share love. Don’t get me wrong. I stress. I panic. I have sleepless nights. I cry. But I try, try, try to focus on the sweet times.

EXERCISEGET THAT HEART RACING. 

  • Its simple. Just get out and move. Jiggle, swing, swim, jump – anything at all.
  • There is a lot of really good research that shows how exercise helps brain function and neuro-plasticity.
  • Initially Matilda had no stamina but we are slowly building up weeny levels of endurance.

EAT & SLEEP WELLNO BRAIN WILL HEAL WITHOUT  REST AND HEAPDS OF IT.

  • Watch for tired signs and act on them. Retreat home, send kids packing, reduce talking or cognitive load, avoid multitasking (huh!) and so on.
  • We avoid carbohydrates and sugar. If Matilda had a breakfast of just a croissant with jam, we would see a total break down 1 1/2 hours later.
  • Lots of protein – this can be really tricky but we keep on trying.
  • Lots of Vitamin C rich fruits and lots of veggies…even if the range is minimal.
  • Anything with lots of  HIDDEN veggies. I grate carrots, courgettes and pumpkin into my spaghetti  sauce  – Jamie Oliver’s version link here. and mash in veggies to thicken stews.

WATER DRINK LOTS OF IT.

  • This requires constantly carrying drink bottle and checking her intake. If we don’t check, we find she has only drunk about 500ml in a day from lots of sips but not big gulps!
  • An adult friend with a grain injury commented that his symptoms are much worse if he doesn’t drink enough.

STAY SOCIAL FEELING LOVED AND CONNECTED HELPS KIDS MAINTAIN RESILIENCE.

  • We have ask our friends for short play dates, early dinners and quick little adventures. It takes a bit of courage to stand out as being different in this way (most of her friends play longer, harder & faster) but if we pushed Matilda to stay up later or play longer, she would be unable to cope. Th consequences would knock-on like a falling line of dominos.
  • Play and laughter with friends overrides so many of the other yucky things and not just for her!

RELAXATION AND MINDFULNESS – LOTS OF RESEARCH BUT REALLY HARD TO DO!

  • Much as I would love to say we do relaxation, yoga or mindfulness with the kids, the truth is our attempts are sporadic and often a failure.
  • Matilda will do some kids yoga videos alone.
  • Our best attempts at deep breathing coincided with hips lifts against a wall….breath out on the way up and breath in on the way down…slowly.
  • The research in this area is strong. It really does help but for us at least it tricky to get happening in any sustainable way, despite some grate books and CDs 9Such as Sitting Still Like A Frog – link here)
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Relaxation and mindfulness for kids and adults!

So much to do that helps when all the ‘other stuff’ just can’t get done. My only other HOT TIP is that the parents should do the same. For me yoga is almost nothing about what my body looks like and soooooo much about what my head feels like. In hospital Matilda once said  ‘Yoga means a good day!’. She nailed it. I just have to creep out of bed in the dark to do it!

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.

“Are we there yet?”

1044 Km in one day – now that’s a road trip. Last April Marty, Reuben and Matilda managed to drive from Canberra to Byron Bay in one day. We were going to cover a similar distance in order to arrive at our Christmas holiday destination but this time everything was different. Matilda’s ability to cope with change and fatigue has significantly altered this year. We marshalled our best planning skills and decided to tackle the journey over several days. Within half an hour of leaving our house we heard our first “Are we there yet?” – there were many, many more to come. This is what we learnt about long distance car travel and camping after HSV encephalitis.

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All prepared for our long, long road trip!
  • Take heaps more time. Matilda can cope quite well with about two hours in the van if everything is well planned. We can even stretch it out to two and half hours but by the time you are heading to three hours no amount of DVD’s or playing ‘Spotto’ (spotting yellow vehicles) will halt ‘meltdown mode’.
  • Sensory issues. Our van is well past its prime but we do have a camping fridge. Being able to provide cold drinks and keep the sun off her with curtains helped. Right at the end of our journey we had to bump over a dirt road. Matilda complained about the noise and I was really grateful for good quality over-ear headphones that could reduce it as she listened to music. She prefers adult ones, complaining that children’s sizes are too tight.
  • Food. We needed to plan well so that we had good quality food to eat and the fridge really helped. Chicken and grated carrot sandwiches. Chopped up pineapple and rockmelon. In the old days we would have consumed a fare quantity of chips and jelly snakes. Not only doesn’t she like them anymore (finding snack foods is tricky) but too much carbs and sugar just lead to a nightmare….they seem to hasten the ‘meltdown mode’.
  • ‘I need a wee.’ We could ignore this a little but we did have to stop far more often than we would have done in the previous years (and that was just me!)
  • Avoid the ‘Disaster Combo’. On the way back we missed the spot we had planned to take a break. We pushed on past our usual two and a half hour limit as it was raining and we were trying to find a sheltered road stop. Matilda needed a WEE and was BORED and was HUNGRY. Kaboom! We had pushed her a little too far and she became absolutely distraught. We all ended up in tears or close too it. We learnt the hard way that we should have backtracked as soon as we realised our stop was missed.
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A room with a view…before our neighbours arrived.

Our Christmas involved camping at a family farm with about 30 of our relatives.  There was hardly any electricity so no screens or phone charging, no internet/phone signal and no indoor plumbing available to guests!  Yep, it was pretty rustic but absolutely wonderful. With folks of all ages from under a year to over sixty it wasn’t a Christmas that you could describe as ‘unexciting’ or ‘quiet’ (most of the time).

Matilda coped really well, trudging down to the pit toilet, dodging flies and ferocious ants, and bathing (a swim) in the dam.  Temperatures were hot one minute and chilly the next. Marty and I had planned to bail the minute she showed us that she couldn’t cope but with a little help, she was an absolute Trojan.

  • Sleep. The importance of sleep can just not be over stated. We tried as hard as we could to keep her sleep cycles quite close to the way they are at home. Frankly she was stuffed most of the time and generally went to bed before all of her younger cousins. She continued to have ‘quiet, non-talking time’ in the middle of the day (no matter what everyone else was up to).
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I think I really need to sleep….NOW!
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Is it morning?
  • Linking to home/normality. Matilda had a C.D player and she listened to story C.D’s a lot of the time when she wanted ‘out’ from the noise, at sleep times and to create an ‘sound environment’ that linked her to home. Favourites are by Roald Dahl-all of them,  Enid Blyton-The Faraway Tree and Louisa May Alcott-Little Women. We use a C.D player instead of an MP3/Ipod because at that time she couldn’t read  much and  C.D’s were easier to navigate which meant indepenendence.
  • Support. Our fellow campers (Marty’s family) all knew what was going on for Matilda and were wonderfully supportive. Even Santa helped out by arriving earlier than usual on Christmas Eve. Based on her cartwheeling and ‘yoga-tree-pose’ jumping off the dam jetty (with life-jacket on!), it may have been confusing for some as to what her actual difficulties are. One person commented that it was only when she spent some time alone with Matilda that she realised how she had changed.

So really why not just stay at home. We did have meltdowns and a few bungles. It really did require more thoughtful planning and making strategic decisions, than any travels in recent years. Well you know, I tend towards being an over-protective mum, which has become a great deal stronger after our Encephalitis experience but I WOULD DO IT ALL AGAIN TOMORROW. 

You can only really fly when you get out of your cage. Matilda and maybe all of our family came back more resilient. We came back with a little bit more elasticity in our whole system. Like a good sourdough, we have risen to the occasion! We were a little flattened and lacking in airiness, and now we have a bit more bounce.

We did not celebrate New Years Eve in 2015 as it did not feel celebration worthy but I’m pretty certain that we are gonna party big time by the end of 2016!

Looking forward to a great year ya’ll

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.

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.

Welcome

Nicole (2 of 2)

Hi I am Nicole. Amongst other things I am a speech pathologist and mother of Reuben and Matilda who contracted HSV Encephalitis in late May 2015 on the weekend of her 9th birthday.

Matilda is happy, compassionate and creative. As a result of this life-threatening virus Matilda lost most of her language, literacy and numeracy skills and now has memory, attention, organization and mild physical difficulties.

The purpose of this blog is to share our bespoke approach to rehabilitation – therapy, education, rest and play.

We live in a small beachside town in Australia within a tight-knit community. Matilda is well supported by our local community health services (occupational therapy, speech pathology & physiotherapy) and by her primary school but there are no local specialist rehabilitation services for children. Although I am a speech pathologist, which does help with our rehab planning, I am no expert in the type of language, literacy and communication issues that Matilda now has.

Survival expert Bear Gyrlls commented “Survival can be summed up in three words – never give up. That’s the heart of it really. Just keep trying.” And that is what we intend to do. So I hope that you will join us for the ride.