You know, I could write an encyclopaedia length book on all the crappy stuff that happens within a 24 hour period in our lives at the moment but hey, what would be the point. So here is my overarching statement for today before I move on: Anti NMDA Encephalitis and its consequences totally suck! Its not very grown up or eloquent but sums up how I feel right now.
Everyday usually has a bright moment. A time when “sparkle” really shines though, a bit like when the sun happens to just be in the right place to fill Tilly’s room with mini rainbows from a hanging crystal in her window.
Two of my most ‘sparkle’ recent moments were the ‘family-loungeroom-disco’ on my birthday….stand aside John Travolta, and drawing hearts in the sand with Tilly & Bree ( her lovely NDIS funded her support worker).
The sand art idea was born out of trying to think outside the box about how to encourage Tilly to exercise more to regain her endurance, balance & core strength. Our first attempt was on a cloudy day and I think we all felt the slowing, cruisey, meditative vibe of letting ourselves play in the sand with no agenda. So here are some shots from that “sparkle” moment.
The fetching bum bag that Bree is carrying contains Matilda’s emergency meds. It goes everywhere with us now and what a memory task that is for an old bird like me!
So much of our lives is not the way we thought it would be. Often this is heartbreaking but occasionally it is absolutely remarkable & marvellous. I am constantly trying to learn to focus on the “sparkle” and think outside the box. Every now and again I succeed.
Holly macarolly! We have spent one thirdof this year in hospital since Matilda was diagnosed with Anti NMDA encephalitis and this was on the back of her previous long stay in hospital for HSV encephalitis and two years of rehab. Tilly hasn’t attended school since March! I cannot calculate how many lumbar punctures, EEGs, cannula insertions/IV treatments, medications or obs procedures Matilda has been through. Her dad and I have been like ships in the night taking it in shifts to be in the hospital and haven’t spent a whole night together for over four months. Her big brother has had to take on a whole new level of household chores but also independence and freedom.
Living in hospital for so long (and its our second time) I think has potentially changed me forever. I like being organised and running my own show but living in a large children’s hospital means that you are always at the whim of other people’s schedules and timetables. I have always been a light sleeper but find now that I can tolerate way more noise after sharing a room all night with an AIN (assistant in nursing) squirming around on a noisy chair (as they watch Tilly for seizures) and beeps, bells and buzzers going off continually. I have always hated being cold at night but now find myself sleeping and driving with the windows wide open as a reaction to constant air-conditioning in the hospital.
So here are some of my (the mum) tips on not just surviving but thriving (well so some degree) during long stays in hospital:
Food: Our hospital food is pretty damned good actually but we still bring lots of food from home. Really this is to cater for Matilda’s preferences (well ,hey what else do you have when your really sick!), health issues (Matilda put on a lot of weight due to drugs and inactivity so we wanted food that was high protein but low carbs/sugar) and fresh, crunchy veggies (hospitals can really kill broccoli).
Exercise: Even on bad days we try to get Matilda up and about, if only to walk around the ward but preferably to go outside and get some fresh air & sun. When she started having ‘drop seizures’ the staff were keen for her to be in a helmet and wheelchair. We developed a ‘hands or helmet’ policy. This meant so long as we had our hands on her so she wouldn’t fall, we didn’t need the chair….so more walking. I’ve done a stack of ‘Dunny Yoga’ (yoga in the ensuite bathroom) whilst she sleeps with my head out the door so I can see if she has a seizure. I try when I am at home to jump into the ocean, have a walk (man, I almost had a coronary walking up to the lighthouse!), go rollerskating or get to a yoga class. It’s hard to cast off the idea that this is a luxury but when you a stuck in a room most days it is imperative.
Accepting help: It is ridiculous and amazing how hard it can be to accept help from people. Why are we taught top try to stand alone? It is so stupid and doesn’t help anyone. Our community has been fantastic. We have been supported in a million ways – house cleaning, donations, drawings and songs, laundry folded, prepared food, shopping done, visits form friends and family, sitting with Matilda, shoulders to cry on, treats like books and massages, hours of FaceTime….the list is endless and every little thing has stopped us from going totally doolally and freaking out.
Making: Every member of our family makes stuff. Matilda makes things for her fairy house. Reuben builds Gundams and planes. Marty joins in the plane building, general fixing and carves spoons. I crochet, knit and dabble in spoon carving too. All this making helps us to move our brains away from focusing on fear and towards creativity and positivity. It is mindfulness in action.I am convinced that for us focusing on making stuff has been crucial to keeping us going.
Don’t wait to be told stuff: I love our hospital and the staff but I can’t tell the number of times we have had to chase things up, find out when procedures were going to be done, what was happening with medication, has an AIN been booked or the letter we needed get written. They are big places, the teams change frequently, people go on leave, have babies, change jobs and sometimes things get missed. As a friend with a child who has a disability told me – you are not on this journey to make friends. Being respectful & understanding of the systems limitations is important but ask for what you want, ask when you don’t understand – never presume that they have your kid covered. Thats our job! As parents/carers are the only people who can really create ‘continuity of care’ for our loved ones. So don’t be shy.
It is strange because for all that living in hospital is a nightmare and at times just a drag, it is often when we are at home that anxiety and fear hit us. It is then that we toss and turn and become overwhelmed by too many thoughts flooding our minds as we try to imagine how the future will be (or maybe thats just our Koalas making too much noise).
Bringing Matilda home soon does not mean ‘going back to normal’. It is more akin to hitting a total ‘reset’ button. Although the cast and crew of our play are all the same, the script has been totally rewritten. Today I am having an OPTOMUCHTIC (too much optimism) day and feel like we have all been given the opportunity to be better versions of our selves as individuals and as a family and that dealing with this crappy situation is going to help us to listen and understand each other more, rather than the trench warfare that adolescent years can often being with family members firmly fixed in immovable positions. But you know if you had asked me on Friday after speaking with the consultant psychologist I probably just would have bawled my eyes out and admitted that I can’t imagine what the future will be like.
So for now we have to just hope that our plan to come home in a week will come off. We have had a few ‘drop seizures’ today and we just need for them to stay at a reasonable level! Then we will have the fun process of looking for support workers to help us and dealing with the NDIS. What fun!
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….
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!
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.
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.
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!
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.
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.
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.
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
It’s gently raining outside and more than anything I don’t want to think about hospitals or what has happened to us over the past few months. A deep well of hot anxiety and fear starts to rise as I write this and prepare to return to Matilda in hospital today. But so many of our friends near and far would like to know what is happening, so here goes…may my tea be strong & hot enough to get me through.
Despite all that Matilda had lost and had to bravely face since she has HSV encephalitis in June 2015, we had started to muddle our way through.
Matilda still only attended school for three hours a day but her teacher, aide and I felt we were getting on top of a good program. We had applied for funding for some assertive technology to help compensate for her poor literacy skills but we were happy that progress, even though very slow was still happening.
Then in March this year (2017) she started to have more seizures and different kinds. We wondered if it was just that it was the end for the first term and all the kids were a bit stuffed. The paediatrician & neurologist increased her medication and decided that we would continue with our plan to go on a road trip to see family down south….all in very short hops and well orchestrated to help Matilda cope. Marty and I have always wanted to fill our kids lives with as many positive experiences as we can to balance out some of the really tough times they have been through recently.
But it all went a little pear shaped (too many seizures) and we found ourselves in a bit of a mad dash to get her back north so that she could be admitted to the big children’s hospital in Brisbane where the team new her well. At this point we thought the major crisis was dealing with her uncontrolled seizures. Her EEG showed almost constant seizure activity and they increased the number and dose of most of her medications. Matilda’s thinking, language and levels of activity had dramatically reduced and they also gave her steroids to try to reduce any inflammation in her brain and perk her up. She also had an MRI to make sure that her scar hadn’t altered within her brain and a lumber puncture to test for antibodies for other types of auto-immune encephalitis, which at the time they thought was unlikely.
You know the news isn’t good when two neurologists arrive at the bedside at 7 pm as you are reading your daughter to sleep and want to change her medication and ‘have a chat’. They had found then antibodies in Matilda’s spinal fluid for Anti-NMDA receptor encephalitis. The easiest way for me to think of this is a bit like severe Tonsilitis, when the body fights itself so hard that it makes itself sicker. They started Matilda on first line immunotherapy and more steroids. Thats when the rages started and they wondered if it was a reaction to the steroids or ‘road-rage’ as the nurses call it.
What we didn’t really understand was the psychological changes that the ‘antibodies’ can bring about – screaming, aggression, violent outbursts, psychosis, paranoia and obsessive thinking. We tried to bring Matilda home last weekend and found these rages meant that she was very unsafe. Anything and everything could be a missile and she seemed incredibly fast and strong. Our neighbours and friends stood by us but our small army was not enough. As it was no longer safe to travel in the car with Matilda, her neurologist in Brisbane arranged an across state border home to hospital ambulance trip. It was only when the ambos arrived and they explained that they had never heard of such a thing that we started to realise just how concerned her team was.
Even Matilda’s paediatrician had never heard of not having to go through a local hospital to be transferred. Matilda raged at retuning to hospital and in the end had to be sedated for the 2 hours journey. When we arrived back at LCCH in Brisbane it became apparent how concerned they were. We have a ‘assistant in nursing’ in our room with us 24/7. The room was cleared of all possible projectiles. Over the next few days the heads of neurology, psychiatry and rhuematology all conferred over her case. She is about to start infusions (Rituximab) to wipe out her B cells and has been stabilised a great deal by careful psychiatric medication. She has been obsessed with an American Girl doll and the staff have been lovely, helping us to hunt all over the hospital in case she is hiding there! Yesterday she had a small seizure as they had reduced some of her anti epileptic drugs to see if they were impacting on her mood.
And here I run out of words. It will soon be Matilda’s 11th birthday and the anniversary of her contracting HSV encephalitis. I cannot explain how distressing it is that she will most likely be in hospital for this birthday and that we all feel like we have gone back in time by two years. Really it is worse this time. Neither Marty nor I can work as we need to change over in the hospital every few days as it is so physically and emotionally tiring. We do not know how long we will be in hospital for this time but after our last ‘not so brilliant’ attempt at coming home, I suspect we won’t be coming home any time soon.
We are blessed with people near and far who have generously supported us. In an era where so many people just seem to be out for themselves, it makes such a huge difference to have people around you acting out of compassion and nurturing. Even with all those hands and minds holding us up, it feels like a lonely and distressing bubble to be in. The ‘world’ continues unnoticed, as our lives are focused on the very small microcosm of a hospital room and home. Even when we have a day at home we are preparing, food, clothes and games for our return. I want to believe that everything will turn out OK in the end. I want to believe that they will kick the antibodies up the arse. I want to beleive that one day our lives will resemble ‘normal’ at least a bit. But I also know that if I let my feelings out for second, I feel like I am being repeatedly dumped by a wave and it is getting harder and harder to get to the surface to fill my lungs with air……………
We will try our hardest to keep you all posted . Big hugs y’all.
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.
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!
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.
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
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!
So bring on 2017. I’m really looking forward to sharing whatever mischief we get up to!
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!’
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.
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.
COMPASSION – IF 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.
EXERCISE – GET 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 WELL – NO 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)
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!
Seizures make me cry. Since early May Matilda has developed seizures. In the scheme of things ‘seizure-ish’, Matilda’s would currently be considered very mild. Many families are dealing with way more than we are . But despite my best efforts to convince myself otherwise, seizures change everything – subtle shifts through to absolute fault lines.
Seizures mean that the small amount of freedom Matilda had won back over the past year has been eroded. We hang closer to her as she is less stable on her feet and ‘shadow’ her when she is with her friends in case she has a seizure.
Seizures mean that we have to fill our little girl with medication, that has three pages of side effects I wouldn’t wish on my worst enemy. Most of the time we don’t know what is impacting on things like her speech – is it the seizures, the medication, fatigue? And you know what, neither do the doctors.
Seizures mean that at times she is so tired she can hardly function and our plans for slightly longer times at school may hit rocky ground (or at least how she is at home afterwards). Pushing dinner times out a little later or socialising with friends in the evening is becoming harder not easier (on the bad days).
Seizures mean that normal 10 year old girl activities need to be strategically managed – sleep overs, play dates and parties. Shorter, with mum doing the emergency medication talk or hovering in the background, leaving before all the others, only with one friend – never quite free.
Seizures mean lots more doctors appointments and not necessarily more solutions. We try to arrange ways that Matilda doesn’t hear the chat or discussion over outcomes/side effects/recent deterioration but there are times that this is hard to avoid.
Seizures mean that Matilda has mentioned hating her body or being broken more often. She is tough and this only happens when she is at her absolute low-battery setting but on top of normal early-puberty issues, it strangles my heart.
Seizures mean that her 12 year old brother Reuben knows all about what to do in an emergency situation and that we have a sign on the fridge for what to say when you call for an ambulance.
Seizures mean that we check how far it is to the nearest hospital and if they have a 24 emergency department before we go away. Our car recovery policy will get upgraded too in the event of a breakdown!
Seizures mean more talks with the teachers at her school and kids in her class. They have all proven that the more they know, the more supportive that can be.
Seizures mean that I have no way to forget the horrible night when she was first ill and a seizure almost took her. I think often, almost daily of the doctor at her head, keeping her airways open, telling me to keep talking to her, that she could hear me, as she shook on the bed. My tendency to overprotect her has gone through the roof and I am constantly fighting my inner urge to check on her, hold her hand, not let her go too far…….
BUT seizures mean we are still here. We are still in the game and prepared to do what ever it takes. This may be a temporary reality or for the rest of our lives. There are chances that it could become significantly worse or possibly better. Either way as a family and as a community we will roll with it, breath into it. Sadness and despair tap on my door. My yoga teacher read a beautiful quote from the poet/writer David Whyte from Consolations (link here)
Despair turns to depression and abstraction when we try to make it stay beyond its appointed season and start to shape our identity around its frozen disappointments. But despair can only stay beyond its appointed time through the forced artificiality of created distance, by abstracting ourselves from bodily feeling, by trapping ourselves in the disappointed mind, by convincing ourselves that the seasons have stopped and can never turn again, and perhaps, most simply and importantly, by refusing to let the body breathe by its self, fully and deeply. Despair is kept alive by freezing our sense of time and the rhythms of time; when we no longer feel imprisoned by time, and when the season is allowed to turn, despair cannot survive.
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.
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.
Ok so Matilda and I have now been doing rehab together for months and months. Many a day the ‘crankies’ invade my programming and little gets done. But we have all learnt to see the flash points as Matilda’s brain talking not her. Spelling is proving to be very stuck and we have seen very little improvement, so we on gonna give that a whole lot more love. Today Matilda asked if we could incorporate her speech therapy into being a detective, as she and a buddy have been playing spys/detectives a lot lately. What ho! Give me 5 minutes my lovely and lets go….
The Word Bank had been robbed! All the ‘u’ and ‘a’ words had been stolen. Our only clue was that the culprit had walked through spilt green paint as they left the scene of the crime.
There were several different routes…which to follow?
Bag the evidence and move on.
But where is the thief. The last trail of green footprints goes cold…
DC Speech-Pathologist-Mummy-Rehab reads him his ‘WRITES’ ( lame joke).
A word sort based on work from Words Their Way (link here). Phew lucky we had a detective in the house!
Just as an added bit of authenticity, these attempts to make learning fun don’t always go according to plan. We still had a little meltdown when the game became serious and the words had to be sorted and the sounds practiced being said. But by that stage our detective was a little hungry and tired…..
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.
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.
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.
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 🙂