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

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…

 

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.

Opto-much-tism

The kids and I have just finished reading a wonderful five book series called The Incorrigibles of Ashton Place by Maryrose Wood. We read engrossed morning and night, feeling saddened when the last page was turned, as with all great books. The lead character Penelope Lumley often questions whether her actions or views are ‘optomuchtic’ meaning overly optimistic or falsely so.

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A behavioural tempest rolled in last night!

Last night Matilda had her biggest meltdown since the horrible nights at rehab, when neurological agitation had her screaming and crying at night, unable to be comforted or knowing why she felt so terrible. As ‘the storm’ rolled over Marty, Reuben and I we had to bend and flex to her might rather than fight her. Both Reuben ( her 11 year old brother) and I have spoken to her and it appears she remembers little of what happened.

After she was asleep in bed, I wondered aloud to Marty if optimism had lest us down, could you be ‘opto-much-tic’.  Had we conned ourselves that all was well when in reality we have a daughter with a fairly major and recently acquired brain injury. Could all this positivism prevent us from settling into the reality of our ‘now’ and learning to adjust to what is ‘real’?  In the most blatant form I mean that I have avoided reading much about the behavioural issues associated with post-encephalitis thinking we may have dodged that bullet. It turns out that we haven’t.

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A new day dawned  – our local Watego’s beach.

Then today a new day dawned. Matilda had no recollection of what had happened and the water was clear and warm under my surfboard. The jury in my brain is out. I simply do not know what serves me better – optimism or a healthy dose of scepticism with a sprinkling of grief & reality.

One thing I strongly feel is that to hide the ‘dark side’ from my friends and family is to deny them a real chance to understand what we are experiencing. My neighbours compassion having listened to ‘the storm’ was greatly appreciated. They heard, they knew, they cared but not in a bad way.

 

‘Sharing is caring’ as the kids say.