A lot has happened…

It’s been about a year since I’ve written anything.  A lot has happened in that time.  Livvy, our seven year old daughter, has developed epilepsy to add to her health needs and disability.  I really had never considered the difficulties of epilepsy before.  It’s horrendous: your brain is regularly malfunctioning in ways that can damage the rest of your body like a first generation smart phone that can’t cope with the internet anymore and keeps switching off and on.  Eventually you might be able to make a quick call, but it’s a gamble. And the medication to get things ‘under control’? Well, let’s just say that things are much further behind in this field than I’d realised.  You see the medication used to treat epilepsy, as well as most other ‘brain related’ issues, is like opening a car bonnet and pouring oil everywhere just hoping that some of it will get into the right place, and not do too much damage to the other parts.  It’s inexact to say that least.  So we spend months balancing three or four very strong drugs in Livvy’s little body, to minimise seizures, only to find that they need adjusting again.  And for many children with epilepsy the seizures can make them sick, or is that the medication? Hard to tell.

Certainly for us we’ve moved again into uncharted territory.  Aged one we grieved our little girl’s muscular weakness and delay, realising that life would be tough for her.  Aged two or so we realised that this was a full blown disability and that she’d probably not ever have a ‘normal’ life.  Her lack of speech and gradual weakness has been tough.  Again, you grieve the loss.  But the last year has moved things to a new level.  The regular questions we ask now are things like: are these seizures her bodies way of shutting down? Is she losing weight so much that it’s dangerous? Are these seizures life threatening? Will she experience another birthday? How long have we got?

As you can imagine, these are tough questions.  And you can’t live in perpetual mourning.  We can’t, she can’t, and her wonderful little sister (now two) can’t  (She deserves a whole blog of her own!). So, right now we take her to school in the morning and she’s sick all afternoon.  Because she loves school.  Right now her weak debilitated state is the new normal and days that would have been devastating two years ago are average now.  But at what stage when people ask do we tell them how bad things really are? We’re surviving, but it’s hard to tell how long she will.  But we just don’t know.

It’s been a while and, as you can tell, I’m feeling quite emotional so let me finish this outburst with some of the ways we’re coping, in case it helps anyone:

Firstly, we’re grateful for each moment we have with her.  At least that’s what we strive for.  Our faith tells us that she is a gift from a creator, so we say thank you.  I think this keeps us from bitterness.  Obviously, we also get angry at times.  Who wouldn’t?

Secondly, we trust God that everything, even our child’s life, is in his hands.  We trust that he is good.  We don’t fight to make life we want it any more.  It’s too tiring.  But like our youngest daughter trusts that tea will be there at 5pm, we trust for what we need for today.   Patience, a smile, enough towels to catch the sick and sleep, for example.

Finally, celebrate what you do have. Last week we had celebrated Livvy’s seventh birthday.  We had a day out, a family visit day, a family friends visit day, her birthday and her party.  We were amazed by the other  little girls who see Liv as their friend, even though she has almost nothing to offer them.

Kids are amazing.  Especially Liv.  She’s really amazing.

 

 

Just say something…

Have you ever been in this situation? A friend or acquaintance is going through something tough.  You want to be kind so you try to think about what you might say.  It’s hard, there’s not much you can say really.  The situation sucks.  So when you see them you basically avoid any kind of meaningful conversation and try to be upbeat, probably talking a bit more than normal, as it to fill the void of difficulty.  Or, if it’s really difficult, you avoid them altogether.  Perhaps you convince yourself that you can’t really help and they’ve probably got lots of other people to help them, so they’ll be fine.

Recently, I’ve experienced both sides of this. When things were looking pretty bleak with Olivia I started to feel quite isolated.  People were quite clearly uncomfortable around me, which made me feel that I needed to pretend at times.  Pretending is quite tiring though, so sometimes I would just withdraw altogether.  Your friendship circle can easily start to shrink and, on top of your grief, you start to feel lonely.  What did I want?  I can see that when things were bad I probably wasn’t much fun to be around.  That’s the thing: people who need love the most usually present as pretty unlovable.  No wonder people avoided me a bit.  Being close to someone else’s pain isn’t nice, as you can start to feel it yourself.  But I think at difficult times you just need a few people who are strong enough to get close to your pain and be ok with this.  No answers needed. No solutions required.  Just be there. I was lucky enough to have a few of these friends.

Things have been getting a little better for us as a family, which has given me a chance to experience this phenomena from the other side of the fence.  I choose to visit a family suffering very recent bereavement, uninvited.  I hugged and listened and thought I was doing ok at just ‘being there’ when I put my foot in my mouth.  It was just a miscommunication but something I said, a mis-read, gave the impression that I really didn’t want to hear their story.  I later realised what had happened and apologised.  I felt pretty bad but I’m still convinced that my ‘clanger’ was better than not being there.  Saying something was better than saying nothing. Love covers over a multitude of sins.  I don’t think there is a ‘right thing’ to say in the face of grief and pain.  It’s just being there that counts and that usually demands saying something, however awkward.

My other experience was with another family I really didn’t know well at all.  I bumped into them, out shopping, and had a quick bit of chit chat.  I had both of my girls with me, so was somewhat distracted, but quickly realised by their responses that they were not ok.  Had I heard some bad news about a loss for them? I really couldn’t remember.  Walking out I put the girls in the car.  I was suddenly really convicted about not wanting to be another person avoiding their pain.  As a Christian I might refer to this as a ‘God moment’.  I crossed the car park and started the most awkward conversation ever. ‘Hi..err.. I really wanted to speak to you guys again.  I… umm.. I can see you’re not ok, but I don’t really know how things are for you at the moment.  Can I ask?’.  Tears, silence, smiles, more awkwardness and number swapping.  More importantly, connection.

Again though, I’m pretty sure that reaching out to them was well worth a bit of awkwardness and embarrassment for me.  Did I do it perfectly? Absolutely not.  But I said something.  I hope I communicated care and love and brought a bit of a relief to that sense of isolation they were probably feeling.

So what am I babbling on about? What am I getting at?  If you want to be a friend to someone who’s struggling just be willing to step into their pain and resist the urge to run away.  Sit with it for a moment. Hug, listen, walk, whatever.  Probably you’ll have to say something and probably you’ll get it a bit wrong.  That’s ok.  Just say something.

 

 

Answering ‘How are you?’

In the past couple of weeks I’ve been asked by many friends, at work, church, and by text ‘How are you?’ or ‘How is Livvy?’.  Most of those times I’ve not really given a proper answer, as it’s been too hard in the staff room, or in a quick sentence, to sum up what’s going on. So… for those of you who’ve asked and deserve better, here’s a proper answer:

The last two months have been unbelievably difficult.  Livvy has gone from being a young girl who loves school, loves to drive her electric wheelchair and read books (not at the same time) with a smile that lit up the room.  Now, things are very different.  She had a rapid onset of epilepsy, which has meant that we’ve been struggling to find medicines that work to keep things under control.  Watching your own child have a fit, especially the painful ones she’s had, is horrible.  However, this is mostly under control right now, though that could change at any moment.  The hardest time began just over two weeks ago when we were rushed into hospital again.  Livvy was given a massive load of anti epileptics, because her fitting wouldn’t stop.  It took her nearly five days to come round, but since then she’s been every different.

For one, she’s developed a ‘movement disorder’ which means that she’s almost constantly shaking.  She hates this and finds it distressing.  She’s also had urinary retention and lots of sickness, which means that we now have a catheter and nasal feeding tube to help her wee and eat.  Perhaps the hardest thing is the change in her, her sadness or flatness and that, much of the time, she seems so different to the Livvy we know.  It seems likely that this condition is now something we have to manage and live with, although there’s always a possibility that these things are temporary.  It’s hard to hope too much though.  We’re also being warned that things may be generally getting worse, which is obviously very hard to hear, and no-one really knows.

Managing her younger adopted sister and her needs has been tricky too.  It’s hard to explain how torn you feel as a parent, trying to meet needs of two children you love and feel like you’re not managing.  You feel stretched thin.  You feel inadequate. You ache. However, Han has done an amazing job in giving them a mummy’s love, with support from her parents, and the little un is doing ok.  She makes us laugh a lot and is an amazing gift to us.  (Wearing Livvy’s sick bowl as a hat, jumping on the bed and eating a three course breakfast are just some of her recent escapades).

To answer your question, both Han and myself feel pretty steam rollered.  There are times when you feel grateful for the time you have with your child, for small things, for the NHS and for amazing friends but other times when the emotional pain hits you like physical pain, intense and stabbing.  You wrestle with a sense of hopelessness, at times drawing on survival instinct and other times feeling symptoms of depression.  There can be an intense loneliness that comes from situations like this, which can feel hard to overcome at times.  And some days we cry.  A lot. But we know all of this is normal.  We know that it’s ok not to be ok.

Will Livvy continue like this? Will things get worse? How long will we have with her? Can Han return to work? How does life work with these new demands? What does it mean for he future? Why does God allow this kind of suffering? These are just some of the questions that hit us regularly and none of them have clear answers.  Yet the fact that my own cry of ‘why have you forsaken me?’ echoes the words of the Bible’s central character, Jesus, is comforting.  The fact that nearly half of the Old Testament Psalms ask very similar questions to mine, brings a strange sort of relief. Narratives like’ Job’ keep me holding on to gratitude for what we do have, and helps me resist the ‘my rights’ attitude of western culture. As John Kabat Zin famously says ‘we only have moments to live’.  All of us. That isn’t to say that some days we don’t feel incredibly angry.

How are we? I think we’re doing well considering. I think wife’s amazing and I think my daughters are beautiful.  So…that may be a longer answer to the question than you wanted but it’s a real one.  You’re all too lovely to be given a trite answer to a well meaning question.

The heroes in our story (part 1)

2015 was a pretty challenging year for our family, on many levels.  But looking back, on this year and each year since Livvy was born has made me incredibly grateful for some of the amazing people in our lives.  I honestly don’t think we would have made it if it wasn’t for some of the loving sacrifice of our family and friends. What do I mean?  I mean that our battles with trauma, depression, insomnia, isolation, hopelessness and challenges to our marriage, to name but a few, would have beaten us if it wasn’t for some of you.  I think it’s time you got a mention.

At three weeks old Olivia seemed to be doing ok.  We’d been back into hospital several times because she wasn’t gaining weight, but things were back on track and we were doing fine.  However, one evening Hannah got really ill.  My wife has a pretty high pain threshold: Olivia was born at home and Hannah had no pain control.  Impressive.  This evening, only weeks later, she was in agony and could barely talk to me: I knew something was really wrong.  When it got to the point that she couldn’t feed Olivia or stand up I rang an ambulance.  A wonderful friend of ours agreed to come in with us, late at night, and make sure things were ok.  At the hospital they were pretty concerned.  Hannah’s temperature was off the charts and she was barely conscious.  Tests started and I knew that I had to take our baby home and care for her; I had to trust the doctors.  I told our friend we would be ok.

Having been shown how to bottle feed I took Livvy home.  I was so scared, having full responsibility for this tiny baby.  I checked my rear view mirror about fifty times on the short journey back to our house.  But then something weird happened.  What I had presumed to be a fatherly paranoia, an overprotective instinct that had kicked in, turned out to be intuition.  She started to cough and splutter in the car.  I stopped, pulled over and checked she was ok.  A bit red, but breathing ok, I just needed to get home, surely I was just over reacting to having to look after my vulnerable little girl.  Taking her into the house I pretty quickly realised that things weren’t ok.  Olivia was no longer breathing well and her eyes were starting to pop out of her head.  My adrenaline, already through the roof, created a feeling like there was a pulse in my brain.

.  These guys were phenomenal: before I knew it we were on our way, Olivia being giving oxygen, heart rate measured.  Everything was a blur, I was shaking, but we were in good hands.  I kept asking the paramedic, ‘Is she going to live? Is she ok?’ but, drawing on his training and experience, he simply gave me the facts and supported my little girl, giving me no false hope.

The first doctor we met at A and E looked me in the eyes with huge compassion and humanity.  I think he may even have taken my hands and hugged me.  This consultant explained that she was breathing, was alive, but so far they couldn’t be sure what had happened and what the consequences could be.  Before I knew it Olivia was hooked up to machines, being warmed in an incubator and I was told that there were, as yet, no signs of brain damage.  When a nurse realised the irony that Hannah was also in the LGI she went and found her and broke the hellish news to her: her daughter was also critically ill in hospital.  Hannah was conscious enough to feel the shock of this and was wheeled to see us, where we wept.

Looking back to those weeks in Hospital I can remember another set of heroes: our church.  Myself and Hannah have been part of a church in Leeds since before we were married and had some amazing friends there.  We didn’t yet know the incredible depth of support that this body of people would become to us.  On ‘coming round’ the next morning, in a bed next to Olivia, one of my best friends, a leader in our church, sat on my bed and held me as I broke down.  Again, he offered no false hope, but listened, cried and prayed with me.  Chris used to work in sales and apparently he’d managed to talk his way in some how.  Later on another church leader came in and comforted me, giving me a sense of hope in a situation that seemed very bleak: I could lose both my wife and daughter.  Throughout that first week so many people from church managed to sneak in: one friend who got someone to babysit while he took me out for a steak, a family we barely knew who brought me wheat free food that I could eat, and others who were medical professionals themselves came to offer everything they could.  Of course, our families had all driven up and were amazing.

Within two weeks both Han and Livvy were stable and on their way to recovery.  Both of their conditions were a medical mystery.  I believe that Hannah’s consultant even wrote a paper about her condition as she’d never heard of it before.  Of course we now know that Olivia’s body couldn’t bring up the milk she was choking on because of her global muscle weakness, still a mystery to this day.  Those weeks in hospital were tough but nothing compared to six months later when we started to realise that Olivia was disabled.  This was when we really needed support.  But more on that next time.

 

A lesson in living from Livvy

One of the biggest surprises of having a child with a disability has been her impact on my sense of identity and the way I view the world generally.  Living with Livvy has affected how I do life and how I view others.  Without ever realising it, until Livvy I was very ‘works centric’: I was very driven and task orientated and, without meaning too, I think I valued people by what they could do.  I found my own sense of security and identity in what I could do (playing music, sports, qualifications etc) and probably judged people by what they could do.  And then came Liv.

Having someone come into your life who you love more than yourself and then almost lose them, and then realise the extent of their disability challenged all of that.  I value Liv for who she is.  By normal standards she can hardly do anything, yet I love who she is as much as if she were an olympic gymnast, world class violinist and child genuis all rolled into one.  I guess all parents feel like that.  It’s just emphasised with Liv.  Her smile, her attempts to talk, her rolls of the eyes when we embarrass her, her hilarious belly laugh and her love of all things ‘Frozen’ light up my life without her doing anything.  Ok, ‘Frozen’s’ a bit annoying, but I love the other stuff.

Strangely enough, having been brought up with a Christian worldview, I’d also never noticed this emphasis in my faith.  Recently, I’ve seen with fresh eyes the biblical emphasis that puts identity way above ability, people above achievement and love before ‘works’.  Obvious really.  I’d just got it upside down without meaning to.  Now I’ve spotted this flaw you’d think it’d be easy to correct…but it isn’t.  I find myself feeling superior to people who I think know less than me, inwardly gloating that I’ve worked so hard to get the job I have or talking to a colleague, or even my wife, as if they’re just someone to help me get stuff done.  Yuk.

But then I spend time with Liv, Han and Tilly and we have to slow down.  We enjoy really simple things, potter along at a snails pace, literally smell the roses and I remember what’s important in life.  More money’s always helpful, and it can feel good when you really accomplish things, but none of that is as important as the people you love, learning to actually spend time with them and stopping to enjoy the gift of life you have.  In a really weird way, despite all the challenges, it’s taken Livvy and her disability to teach me what’s important.  Would I change her disabilities if I could? Absolutely.  But I definitely wouldn’t change her. And I wouldn’t change what we’ve learnt and I hope not to forget it.  Someone please remind me if I do.

Challenge no.1: Sleep.

It may surprise you but for the many parents, families and carers of disabled children I’ve met over the years the single biggest challenge is sleep.  Or, more accurately, the struggle to get enough…in fact anywhere near enough.  Weirdly, until recently I’d never seen anything at all written about this major challenge of disability.  For us, with our daughter Olivia, the normal parental experience of broken sleep during the first six months of a child’s life has simply flowed into a five year experience and looks set to continue like this for the foreseeable future.  Why? We’re not always sure. Usually Livvy will wake a couple of times in the night because of one of the following: reflux is burning her on the inside of her esophagus; she’s been or feels sick; she has muscle cramps of some kind; she has trapped wind which she can’t deal with; she is sore from lying in the same position or, perhaps, the normal childhood stuff like nightmares or boredom.  The real difficulty is that trying to work out what’s wrong is a kind of advanced detective game which our brains aren’t ready for at three in the morning.  My wife, Hannah, has a much more instinctive understanding than me, knowing Livvy so well, but even she often struggles to comprehend when poor Liv can’t tell us.

Sometimes her cries of pain, frustration or, perhaps childhood tantrums, can seem to escalate the situation and can quickly lead to absolute exasperation for us and well… let’s just say there’s a lot of apologizing in the morning from everyone.  In the day time we can usually have a laugh about it with Liv and we all make pacts to try and do better (me and Liv like to ‘shake on it’).  But, when darkness comes staying calm and patient is a different thing altogether.  Of course, not getting enough sleep over time has a big impact.  There’s nothing like sleep deprivation to make a small irritation seem massive, a slight misunderstanding seem like the end of the world or turn even the most upbeat person in on themselves.  Unfortunately, in the world of disability this is one factor that often breaks up marriages, as the statistics tell us.  Not sleeping properly can affect nearly everything, from work to family life, from your own health to your relationships: pushing away the people you need most (your ‘support network’) if you’re not careful.  For me, if we’re really struggling I’m just not very nice to be around.

A doctor friend of mine, several years ago, was explaining to me that there was very little  evidence that sleep actually matters that much, that we can easily ‘bank it’ and really it shouldn’t affect our immune systems that much, blah blah, blah etc etc etc.  Whilst I struggled with a gradually tightening fist and desire to swing it, I calmly, at least on the outside, suggested that perhaps things like stress and mental health where tied quite closely to sleep deprivation and, whilst there may not be absolute data out there at the moment, most people would agree that sleep is pretty important.  We agreed to disagree.

So there’s the first major challenge for most people with a disability and one that’s rarely discussed.  But, I said I’d keep these posts short so clearly this is going to take more than one go.  However, it’s not all doom and gloom: there may be some solutions, even some ‘upsides’, he says very, very tentatively, and certainly there may be something you can do to help.  Watch this space.

Living with disability: our story so far

Living with disability, whether it’s yourself, your partner, a child or someone else close to you, is pretty hard to describe.  It’s not that it’s always really bad, but it is nearly always really different.  Different to other people’s lives..  Different to what you expected.  Probably different to what you really want, if you’re honest… except that you can’t regret who your child is, in our case, and how your life’s turned out… that’s a slippery slope.  So you try to enjoy them and live with the tension that things aren’t all that you want.  It’s complicated!  That’s why poems like ‘Welcome to Holland’ [http://www.our-kids.org/archives/Holland.html], Nia Wyn’s ‘Blue Sky July’ or Andrew and Rachel Wilson’s orange/chocolate orange analogy [https://www.thegoodbook.co.uk/the-life-you-never-expected] are so helpful  in giving others a sense of what it’s like.  At times it can be heart-wrenchingly painful, at times indescribably hillarious and joyful but it’s nearly always different.

I find that lovely, well meaning people often look in at our lives like we’re aliens.  I can see why; we’re not a normal family.  Our eldest daughter’s disability means that we have to do life  differently.  The needs of our youngest daughter, recently adopted, provokes us to think about family life quite carefully.  The planning involved in a simple trip out, usually masterminded by my incredibly talented wife, for example, would test the ability of a professional events management team or a military general.  We have the biggest car on the market, a roof box, four specialist seats, buggies or wheel chairs to cover every eventuality, a small case full of various medicines, food has to be planned to make sure that Livvy can eat it, and then there’s planning accessibility.  Can we actually get down to that beach? Can we fit our specialist seats in the cafe?  What will we do if she has an ‘episode’? ‘Where and when can she sleep?’ These are just a few of the questions we have to carefully consider.  It can be pretty tiring.

And yet, the fact that we have to live life at a slower pace has been a huge blessing to us.  Personally, being naturally the most impatient person on the planet, it’s taken some getting used to.  But I love that we get to stop and smell the roses, enjoy the simple things and connect with all sorts of people we wouldn’t otherwise meet.  Livvy’s taught us that people are always the most valuable: more important than money, possessions, achievements, even education.  We never could have learnt that without her.  Maybe we’d have agreed theoretically, but she’s made us actually start to live it.  A different thing entirely. And this is just one example. We’ve learnt so much through our girls and we plan to keep on learning.

Anyway, let’s keep this one short and sweet.  Our sleep deprivation, the major challenge for most people with disability in their lives, means that most of my writing and thinking is pretty brief.  So, whether you are interested in supporting those with a disability, have one yourself or are a ‘carer’ these blogs are for you.  I plan to write about some of the things we’ve learnt, some of the challenges we face and hopefully encourage you to keep going.  You can get an inside look at the alien family, enjoy the scenery of Holland and get some slimey, orange pips down your front.  Or not.  It’s up to you… but if you want to help connect with those with a disability trying to understand their lives is a good place to start.  Speak soon.