Living the Saturday

Living the Saturday

Easter Saturday. The day between. A day for the disciples of confusion, chaos, disorientation. 

I realised yesterday, as I attended a Good Friday service that I am presently, living the Saturday. The trauma of brain surgery, rehab, cancer is, in the main, past but I’m still in the confusion and the chaos. Our ministry is closed, volunteers scattered and I’m not sure how to make sense of the future. 

But I have an advantage. Unlike the first disciples, I know it changes, I know there is a hope and a future. I know there is a plan. And whether it’s tomorrow, next month, next year or next decade. There will be something coming out of this time. 

There is a song ‘This is amazing Grace,’ sung in many churches it has a line ‘who brings our chaos back into order?’ Describing a God that does this. That is what I’m holding onto right now. 

I am still reeling, calm after the storm but not sure what next.

I’m living the Saturday. And that’s ok. I’ll sit in it - grieve when I need and look for the way forward. 

If anyone would like to pray for me/us in this please do! 

The daunting journey ahead that is rehab

So here’s the thing

I like results quickly. In everything. I like baking, but not bread really because you have to wait. I like hobbies; jewellery making, scrapbooking, things where you see the results straight away. I have friends that do quilting, knitting, learn an instrument etc but it takes such a long time to see results. I’m not a good finisher. I get bored easily and I know I’m impatient.

So here I am at the biggest challenge of my life. We’re not even talking a quilt or a tapestry here. I’m meaning walking and talking. We’re at the starting line of the biggest mountain we’ve ever climbed. And I have to admit I’m scared. Scared on the one hand about whether she will regain her speech and her mobility, concerned on the other hand that I won’t make the cut.  This time, I can’t afford this time to stop the music practice. This one can’t stop, literally, her life depends on it. What if I don’t make the grade? In those moments as a mum that you pray for patience, this DEFINITELY WAS NOT what I had in mind! Immi is going to need patience, care, motivation and I’ve got to provide it. I’m really not sure I have it in me. There’s a nervousness in my gut. An Olympic athlete trains and wants to win that gold, but if they don’t win, what actually happens? What’s the worst that would occur? They wouldn’t take that medal home, they would miss out on some sponsorship and they may owe some money, but if we don’t win at this challenge my daughter is not going to walk or talk again.

I’m human, I’m not perfect. In the cold hard light of day I see my failures and weaknesses. I know my character flaws and maybe that’s why this next journey feels like Everest. I haven’t even run a 5K and I feel like I’m being asked to run an iron man. But this is where I cling hold of a higher power. There are three verses from the Bible which come to my mind.  The first is this:

This verse was written by a guy who had been through a whole lot of life and at the time was writing from a prison in Rome. He’d been shipwrecked, gone hungry, flogged, but he said that he could manage in all circumstances and even find joy in them. I like how this image highlights the word ALL. Ours are unusual circumstances, but we can gain the strength to go through this, however long it takes. We can keep going, through the strength God give us. It's also personal, he strengthens ME, not the chap down the hall, not the person at the end of the phone, not the physio giving instruction, but the ones at the rockface, the ones going through it. You know those people who stand and give out drinks during a marathon, a bit like that, but I reckon, more like someone who runs alongside you and gives you a drink whenever you need it.  Does He give a piggyback? No, we have to do the work but He is there to strengthen at every moment we need it. 

The next verse was written by the same chap. He had a problem, we don’t know what, he called it a 'thorn in his side', but it wasn’t going away and he felt like giving up.  But then he felt that God spoke to him these words:

I’m holding onto this, because it’s when I’m at the end of myself that I’m given some extra resources from somewhere unexplainable.  I feel pretty daunted by this huge rehab mountain ahead, but as I work out of my weakness and lack of knowledge, we will see change. 

And the third verse is this:

(no, that's not me!! 😄)

This verse has become more and more important to me over the years.  It's a truth that has been around for centuries and science is finally catching up!  This verse was written thousands of years ago and is found in a book called Nehemiah in the Old Testament. The Israelites were heading home and had just been reminded of the law they needed to hold to. It seemed huge, impossible to hold to, but they were told ‘Do not grieve, for the joy of the Lord is your strength.’ 

In recent years, scientists have realised that joy, and laughter cause us to release the hormone Dopamine (plus others) in our bodies that these hormones ready us.  They ready us for work, for concentration, for challenge. Educators realise now that pupils learn best when they are happy, relaxed and connected relationally to their teacher. God knew this waaaaay before. So when we sing and worship it does something in us, releases Dopamine (through joy) and Oxytocin (through connection) and makes us ready for the challenge ahead. Having joy really does bring strength to succeed, it’s not just a quaint phrase. I’m holding onto that! It maybe the only thing that will get me through this!

So am I concerned about the formidable mountain that lies ahead? YES.

Am I concerned that I'm not everything and  I don't have everything my daughter needs? YES.

But do I have resources to draw on? YES. The physios, OTs, SALTs will provide the plan and some of the physical help, but spiritually and emotionally those resources will come from beyond me.  I don't dig deep within me, truly, there's not much there.  If I want infinite resources, I need to dig elsewhere, outside humanity.  I'll dig deep in God. 

Newborns

 

It’s 7.30am, it’s not been a good night.  A mixture of babies on the ward, loud talkers, fireworks until the early hours and nightmares.  I have to admit to fighting fear.  Immi’s eyes are well over to the left and she hasn’t spoken yet.  Everyone says it’s early days and it got me to thinking about being born.  In many ways there are similarities; her brain is having to learn to work in a completely new way.  Just as a baby doesn’t develop over night, but takes weeks to form, grow and develop, her brain and body is having to do the same.  And just as new parents don’t have any idea what they are doing and are full of trepidation mixed with a bit of fear and excitement I sit here fretting over her new behaviours and desperate to see improvement and development.

It’s similar in the spirit realm too.  Jesus said that just like when we are born physically as babies, we need to be born again spiritually.  When we make a decision to follow Jesus it’s a new start.  We often know nothing.  The three basic needs of all babies are to know they are loved, to know they are safe and to know they will have their needs met.  It is the same for us now and the same for when we start a new life with God.  He wants us know we are safe in him, we are loved by him and we will have our needs met by him.

I’m concentrating on these now.  Sat here, we have all we need in this moment, we are in the safest and most specialised place right now. We are having our needs met, by hospital staff and by many of you who will read this blog. And we are loved, by God, but also evidenced by the many many messages of support we are being send.

So as I sit watching the monitor I’m holding onto all of these and to the fact that like when she was a baby my job is to keep her safe, to love her and enable her needs to be met. Then I can just watch her develop in her time.

The Night Before

 Apologies this is out of order, but this was written in bed the night before the op. 

The evening before

 

It’s 12.40am.  Immi is lying beside me, listening to Philippa Hanna songs after our midnight feast of toast and jam before she goes ‘nil by mouth’ until the op.

 It’s been a precious evening, full of hugs and conversation.  We’ve dealt with fear head on and made plans for the future (watch out Naomi, its Maths GCSE next!) 

It’s been a long night and not one I would wish on anyone, but when the fight it bigger you find inner depths you never knew you had.  We’ve sung songs this evening, songs about about fighting, songs about overcoming, songs about getting up again (yes they ranges from Bethel, to Philippa Hanna to Trolls!) and I think she’s as ready as she could ever be for this fight of (and for) her life.  Here’s to seizure freedom.

It’s also felt like a stormy evening, as parents we’ve felt buffeted around; the op, a broken lock and room change, plus a myriad of other small things meant that we felt tossed around by the waves.  I’ve reflected before that id the disciples had truly understood who Jesus was and why he had come, then they wouldn’t have needed to wake him, they would have had peace that nothing was going to happen as his purpose had to be fulfilled (isn’t hindsight great?!) But this evening, I was challenged to go further and deeper.  I felt I was asked the question, “What is they had understood peace?  What if they had understood that they could lie down and sleep in the boat with him?”  The challenge continued; “You can rest in me.  You can rest through this. You are safe in this.  She is safe.”

So now I lie down in the proverbial boat with Jesus (it looks more like a camp bed in a hospital ward this time!) He may be asleep, he may be unfurling the sail, or he may be navigating.  It doesn’t matter.  He is there.  That is enough.

Hemispherotomy inpatient update #1

 It is Mon 2nd November and I’m sat by an empty bed as Immi is in the MRI machine. She has to have a general anaesthetic for an MRI as the dystonia in her right arm prevents her from staying still enough. 

We arrived yesterday (with Boris announcing lockdown as we travelled up the night before!) wondering whether they would stop surgeries again and send us back home again! 

We arrived to the admissions ward at 7am yesterday. It was Sunday so it’s is a bit quieter usually anyway, but this time we didn’t see any other patients at all. They allowed all three of us in and swabbed us all for covid. After a five hour wait and negative results all round, we were allowed up onto the neuro ward. At this point Immi and I had to say goodbye to Murray. Thankfully though Ronald McDonald House had one room left that they allowed us to have so he unloaded the rest of our stuff to there.  The rest of the day was very uneventfully passed watching DVDs and settling onto the ward. 

After an AWFUL night’s sleep, (obs, doctors, being opposite the nurses station and lots of other noises kept us awake most of the night. Immi wasn’t allowed to eat after 2am so wanted a midnight feast! I was struggling with a headache and had forgotten how loud this ward is!) we got up early and we’re ready to be taken down to the MRI machine for 9am. Which brings us up to date! 

Thank you for following our story. I will write a blog every few days on here, but for more immediate updates we have a Facebook group. Please message me if you would like an invite to that.

Finally thank you so much to everyone who is supporting us both practically, financially, emotionally and spiritually. We are so thankful for all of you. Xx

Op news - How do I feel?

So the call came. The call we had been waiting for but hadn’t expected. Especially not today. Today, Boris was announcing more Covid controls not less. Today the R value is increasing not lowering. So we weren’t expecting the call today. My brain stopped working, my neocortex couldn’t work for the day and my limbic system took charge - I was somewhere between fight and freeze I think, but unable to make decisions.

'How do you feel?' I was asked. Or 'you must be please,' or excited, was offered. I knew I didn’t feel either excited or pleased. All I felt was scared. Petrified. This is not a normal op. This is not a run of the mill operation.

Hemispherotomy: A hemispherotomy is an operation that disconnects the cerebral hemisphere - one half of the brain - from the other without removing it.

There will be deficits, visual, cognitive and motor. We are making a swap. She will lose some eyesight on the right hand side of both eyes she can lose up to half, she will be partially blind. Her hand will go from dystonic with no control, to spastic still with no control. Speech and cognition remain to be seen - they can't say at this point- and she will need to learn to walk again. There will be months, possibly years, of physio and rehab which I admit I am fearful of as she’s not the most motivated at the best of times. I’m not sure what I will use as a reward, to bribe her to work hard at it. I’m fearful she will just give up if it’s hard work.

These deficits will happen whether the op works or not. They are hoping the op will lower or stop seizures but they give percentage approximations not known quantities. This is scary. I want to not do it. No mother wants to put their child through this. I want to stay in the known....Until I see her suffering in the known.  The daily seizures the days of prolonged sleep which curtail her life. The daily incontinence and her feelings post-seizure where she laments at being wet and feeling awful. The fear she has of going to sleep because she knows she is going to seize at some point. When I consider the known I want different for her. And this is the only door offered that could bring change.

It feels like a nightmare I wish I could wake from and suddenly find my daughter is able bodied, happy and fully cognitive with a raft of GCSEs awarded to her for her bright future. But it’s not a dream. We have to go through this. We have to make this gut wrenching decision. I want to feel blessed that we have this option. But right now I feel more like: damned if we do, damned if we don’t. I know this comes from a place of fear and I don’t want to give into fear. I want to make the right decision with her and for her.  

To be honest it feels like there is little choice.  We have prayed for years, we have tried many drugs and combinations of, we have tried the ketogenic diet under the dietician.  The national team are telling us this is their recommendation and there is no other direction.  I just wish we didn't have to face it.  If you are a praying person, we value prayer for resilience over this time before hand as the option to pull out is there! And also during, as only one parent is allowed in the hospital with her which is going to be tough. And of course, for this op to be a success. 

The date we have been given for admission is the beginning of November. and I will aim to keep you updated on Immi's journey as time goes on. 

Results Day

I knew this day would come. The day the rest of her cohort pick up GCSE results but we get nothing. It stings and I need to grieve a while today.

I knew a few years ago that she wouldn’t manage GCSEs and I knew last year for sure that she wouldn’t be doing any, but today still smarts a little. There will be no celebration, no excitement about the next step. No sense of achievement in this way. I need to allow these emotions of sadness and grief to surface, just for a while, to acknowledge them, to reach a place of acceptance (yet) again. This is not the life I would have chosen for her. No one wants to have a child with special needs. Yes, we make the best of it, we put a positive face on, we choose to pull out the positives, see the aspects of life she is making progress in and acknowledge those. But truthfully, deep down, I would give anything for her to be able to grapple with Maths problems and write an essay, to feel a sense of grappling with learning and the sense of achievement exam results bring. Today highlights once again, the differences, the losses, the gap between Immi and her peers. It’s a day that points at what she cannot do, like a bit neon highlighter marking her life. A day that I fight off a sense of failure. I know it is not my fault or anyone’s fault, it is just how life works - life is unfair- but it sucks. Every parent wants the best for their child, wants them to have all the opportunities in the world and today highlights doors that are closed. Thankfully, I think she is blissfully unaware, she moved from Mainstream to specialist provision three years ago and today I am so thankful for that. She is not compared today against a cohort of academic achievers, she feels she has found her tribe. A wonderful bunch of pupils who find joy in many things. But I feel for those that are. That have tried within this strange year, but despite their best efforts results day will deliver little to celebrate.

So today, for a moment I allow myself to grief. To be saddened by the ‘what could have beens’ and to acknowledge the differences. I dig deep to congratulate the ones who have achieved, knowing that for Immi these same accolades won’t ever come.

And then, I will dry my eyes, straighten my crown and go and make breakfast!

Finding Joy...

A friend posted this picture today.  I had seen it before, I think I may have even posted it before with a different visual, but this day it hit me afresh.  
You see, it had followed a post that reminded me that 'on this day' 7 years ago, we sold our house in Kyrgyzstan.  It was the end of  what we had thought was our life's calling.  The end of our dreams and hopes and the closing of a chapter which was so painful to close.
  
Any transition is hard, unplanned transition is even harder.  During this time, there are many going through unplanned transition.  Some small ones - having to teach our own children (!), others bigger - loss of jobs and finances and others still,  the biggest that can be faced - watching loved ones go from death to life. Loss and grief are hard at any level.  Some we can navigate, compartmentalise and work our way through, others blind side us when we least expect it.  We get over the initial shock, work through the grief cycle and think we are through the other side, creating a new normal, and suddenly a smell, a sight, a sound takes us back to a moment we thought we had moved through.  

Seven years on and I thought I was through it!  I was surprised by the wave of emotion that swept over me this morning.  The friends I miss, the sounds of the bazaar, the light dappled through the leaves of the walnut tree in the garden.  Hope is rising again, things are moving forward, life has purpose.  The illness that brought us back  is still present - a constant reminder and burden to carry on a daily basis, but the raw pain is gone.  Instead I remember with gratitude the time we had in Central Asia, the people we met and worked with, the friendships that still remain, the lives that were changed.  Would I work overseas again?  In a heartbeat.  But part of the moving forward, part of the letting go of the past and grabbing hold of the future is grabbing the future that is here and now.  So I will grab that, and find joy in this future, dig for it if I have to.  
Letting go of the past is a choice, sometimes its a hard choice, and sometimes it takes years to make that choice.  And for those of you that are only just experiencing loss during this time; don't hurry through that journey, there is learning to be done there, in the rawness, in the emotion and in the grief.  But when the time is right, make that choice, let go and grab the future.  

Raging or reason?

Well, its been a while since I wrote anything and life has been a blur.  Although we did see a some lessening of seizures over the time of prayer and fasting last June, sadly, they increased with vengeance and are now at an average of 3 Tonic Clonics a day.  

And we are, of course, in lock-down at the moment.  So, what does that mean for us?  Well, firstly, it means that the hemispherotomy operation that was due to take place in March or April has been postponed. We don't know now, when that is likely to happen.  As I write, there are still hundreds of deaths a day in the UK and Birmingham (where the operation was to take place) is the worst affected area outside London. Disappointment is a tough emotion.  Especially for someone with Autism that has a fixed mindset.  
Immi has actually coped admirably, but I can see a pervading sadness over her.  She is finding it harder and harder to get up each day.  In part, this is because, presently, the majority of her seizures are occurring at night and so she is exhausted.  Partly, because she has always been and night owl and she is defaulting back to her natural body clock I think which would be as a late sleeper and late riser (like her Dad!) and partly, because she is struggling to find things to look forward to and to motivate her to get up.  Don't get me wrong, school as sending home great work, and we have taken to doing one bit of 'brain work' maths, reading or writing a day (which is a huge effort) and one bit of 'fun work' baking, PE, art etc.  But this is just not doing it for her.  I created a chart that she could use to earn virtual pounds.  She got more money the earlier (after 7am!) that she rose, £1.50 if she got up between 7 and 8, £1.00 if between 8 and 8.30am and 50p if it was between 8.30 and 9.30.  nothing after that!!  And then she could earn for different things, getting dressed, cleaning teeth (that was a high earner as she hates it!) and jobs like laying the table, as well as her school work.  She was motivated for a few days as she worked towards enough to rent 'Trolls World Tour' (What joy!)  But now, that is done and she is struggling to find motivation and joy.  

Getting up in our house has become a tension point (Yesterday I was called the 'Worst beast in the world!') but I do not want to leave her to wallow all day.  

I don't have a magic wand for her, I can't take the seizures away.  So I will continue to do what I can...

So what can I do?

1. Look after my own mental health.  I cannot bolster her and continue to bring joy to her if I cannot find it myself.  In a plane, during the safety talk, they always tell you to put your oxygen mask on before helping anyone else.  I feel this time is a bit like that.  If I am low, I cannot help her.  So I need to make sure I do things that will feed my soul in order to feed hers.  Be kind to yourself, do some art, listen to some music, read some of that novel, have a glass of wine (just don't start to rely on it!! 😉), call a friend, eat some chocolate, have a bath - whatever it is for you that feeds your soul. 

2. Practice an attitude of gratitude and thankfulness.   It's easy to see the darkness, to focus on the difficulties and the hard things.  Maybe its my personality, maybe its my Britishness (!) but I find it much easier to be a pessimist and to see the glass half empty.  I need to consciously force myself to change my thought patterns.  In the Bible, Paul describes this as 'being transformed by the renewing of your mind' (Rom 12:2).  It is a real tangible practice and gets easier the more you do it.  Many use a journal and start by writing down one thing each day that they are thankful for.  It can be hard at first, but as you practise it becomes easier over time and then you are able to recognise and catch yourself when you are defaulting back into the negative spiral.  Katherine Hill (Care for the Family Director) says that as parents we are 'responsible for the atmosphere' in our families. We cannot create a positive atmosphere if we are in a negative thought pattern. 

3. Create opportunities for creativity.  Immi may not chose to take part, but on the other hand, she may!  So, I will continue creating creative opportunites. We, at Breathe Communities, believe that creativity is really important.  It is something of God that is reflected in us, but more than that it releases something in us that doesn't have to go through the 'higher order, reasoning' parts of our brain.  When we create, or appreciate another's creativity, it touches us in our limbic system, it gets straight to our emotions and produces loads of 'happy hormones' (oxytocin and dopamine) in us.  This helps start to bring us to a positive place and force that spiral of thinking in an upward trajectory instead of downwards.

4. Work out the priorities.  So, I'm faced with a teen, with special needs, that will not get up, will not do anything.  It is highly frustrating.  I could completely lose it (I have tried this tactic - it tends to make things worse) or I can work out the priorities.  For me, right now, the priorities are 'keep her alive!' Seriously, I need to get medication in her at a set time.  I need her to drink enough, and eat enough.  I need to be able to keep her safe seizures wise.  I need her to be clean and I need her to not plummet psychologically.  If those things are dealt with she is much more likely to engage in anything else I offer her anyway, so these have to be my priority.  If these are done, I'm going to count it as a good day and academic work is a bonus!

5. Create choices.  Along with the above, as with most teens, if I tell her to do something, the opposite is going to happen.  I now try to present everything as a choice.  Its generally a choice of would you like A or B? or Which would you like to do first: A or B? Or, if possibly, like the earning chart I mentioned above, a wider choice, like a menu to choose from.   This tends to take some of the battling away.

6. Pray - When all else fails - pray.  I do pray regularly, but on those days where it is all going horribly wrong - PRAY.  Am I doing it for her? Am I doing it for me?  Am I doing it so I don't say or do something I later regret?  I don't really know.  But what I do know, is that it changes things.  it changes the atmosphere.  In me. In her. In our home.  Sometimes the biggest battle is in getting to this point.  I'm so angry, so raging, that I don't WANT to pray for her.  Its very hard to pray for someone you are angry with.  But if I can get past that.  I calms me, it calms everything. 

7. Be kind, be patient, be loving. These are some of what the Bible calls the 'Fruit of the Spirit', but if you are a follower of Jesus or not, we all need these and all need to utilise these! They sound so simple, but sometimes, they are oh so hard!  When she has completely riled me, they are hard to dig for.  But, as the parent, we do need to dig for them. Dig deep! I know that a change is much more likely to come in attitude if I demonstrate and use these things.  If I rant and rave the heels just dig in deeper,  but if I relate and show understanding saying things like "Wow, it looks like you have had a really hard night, I can see you are really struggling this morning" Even in the middle of her storm, it cuts through in a way that anger never can.  Meet anger with love and I am much more likely to win the battle.

8. Praise.  Find those moments to praise all the family members.  Look for the good.  The tiny helps that someone might do.  If someone throws a wrapper in the bin - big them up, go over the top.  They are much more likely to do it again.  A bit like practising gratitude, this is not something I am good at.  I have to make a conscious effort.  I have worked with other nationalities that are soooo much better at this, it just seems to come effortlessly.  But we need to learn to be generous with our praise. It doesn't cost us anything, but can change everything. 

So, as you read these, please don't read them thinking, wow, she sounds like she's got it sussed.  What's probably worse is that I know what I should do and still often don't do it.  So, please take this with me and lets try together! 

K x

(PS and let me know if you have some successes!)

Immi's army prayer challenge starts today.

Today we start the week of prayer and fasting for Immi. I have attached the seizure diary for this month and would ask you to pray for a significant diminishing of seizure activity which would lead to the scans being clear when she has the pre-op MRI in the Autumn.

If you are joining us please do drop me a line to let me know - it’s such an encouragement to know others are praying and fasting for her.

If you are in the Penzance area and would like to join us next Sat (6th July) for prayer, worship and breaking fast then please get in touch we would love to see you.

Lots of people have asked how they should fast. It’s entirely between you and God, how you fast, some are fasting certain meals, or certain types of food, or a whole fast on certain days. This is about a heart conviction, not something prescribed to you, so please pray and do what is laid on your heart. (I wrote some more on this in my last post ‘The Challenge’ www.purposepassionreason.blogspot.com so do have a look there).

I will keep you posted through the week. And thank you from the bottom of our hearts.

Shout out to the siblings...

This post is dedicated solely to my son and to all the siblings that grow up with brothers and sisters who have special needs.   I’m not going to name him (as he is 16 and that would embarrass him) but I want to give a huge great shout out to him. 

Immi’s brother has seen her go from a normal little sister that he spent time with a played with and got into adventures with when they were little to a sister that he (unconsciously I think) started to protect. He has picked her out of pools when she has seized, he has caught her when falling, he has called on us when she was seizing, he consistently takes the dog out, feeds him, walks him, does the poop thing, empties the dishwasher,  vacuums and manages his homework without nagging (although he is very glad he never has to do French again now!) He has held a part time job since he was 14, today was the first time he has ever asked for a lift to school (it was lashing and he had 2 GCSEs) and has always got himself there, he has found his own spiritual home at Discovery Church and gets up and goes without us nagging, he holds his tongue and his fists when Immi lashes out at him and he (in the main) has compassion upon her.  

I think he often feels unseen. He doesn’t say it, but he quietly gets on with things. When we try to give attention there is always another voice, another demand and he just knuckles down and gets on. He finishes GCSEs next Friday and therefore his secondary school (sixth form college in Sept). And I just want to say here, publically. 

I am so proud of him. I don’t care what results day holds, because sensitivity, compassion, care, responsibility aren’t things that can be taught and graded.  Selflessness can’t be learned it is something that we are. And I admire these things in him.   I can’t say it’s down to amazing parenting, we have done what we all do, we have tried our best but we have failed in many ways and I wish many things had been different but I am thankful.

In Daniel 6, Daniel is described as having an excellent spirit. This Hebrew word can also be translated as extraordinary or surpassing. And this is my prayer for him; that he will continue to obtain and retain the excellent spirit he has now. 

....And if you read this my son, I’m sorry for embarrassing you (but only a tiny bit!) xx

Even if.... The Challenge

This story starts about a week ago.  For those of you who follow this blog, you will know that our daughter received a diagnosis for all the seizures, hemiplegia and cognitive delay she has had which began when she was 4 years old.  This is not a hopeful diagnosis; Rasmussen’s Encephalitis is a progressive, degenerative disease which affects 1.7 in every 10 million, so it's pretty rare!  The doctors are unanimous in saying they need to do a left hemispherotomy in order to stop the slow spread of degeneration through the brain.

I was knocked for six.  I pretty much had all the hope and faith knocked out of me, but I had a little phrase going around my head, that said ‘Even if…, even if….’ I kind of ignored it as I knew where it came from and I wasn’t really ready to engage.  

This little phrase being whispered into my soul is a phrase uttered by 3 friends long ago.  These three friends were living in exile, their country had been taken over by a foreign power and this foreign power was trying to exert its power and authority over God’s people.  The three friends; Shadrach, Meshach and Abed-nego refused to bow to this authority and when a gold statue was set up and everyone was told to bow down and worship it when the music played, they refused.  There was  lovely incentive to do this, and Nebuchadnezzar was obviously a stick kind of guy rather than a carrot chap as there was ‘furnace of blazing fire’ immediately waiting for anyone who refused to ‘fall down and worship’.  Worship of gods is often done prostrate and so a call to fall down is not unusual but how easy to spot those not taking part eh? You show whether you are in or out with your body, so if you refuse to fall down then you are taking a stand. We are told that all the peoples of every language worshipped – fear is powerful here. But Shadrach, Meshach and Abed-nego did not.

So, inevitably, Shadrach, Meschach and Abed-nego are seen refusing to bow, are reported to the king and hauled in front of him.  He again tried to exert his authority with threat.  He ‘graciously’ gives them another chance to bow down and worship reminds them of the furnace and just as Eve was asked a question in the garden at the beginning of time ‘Did God really say….’ The king asks a question ‘What god is there who can rescue you out of my hands?’  I’m not sure Nebuchadnezzar was really expecting an answer, I think he was expecting this to be a rhetorical question, but the three friends acknowledge the question and tell him its irrelevant,  They go on to tell him that the God of Israel is able to rescue, but that EVEN IF He does not, that they would still be faithful and worship him, not Nebuchadnezzar and his gods.

At this point Nebuchadnezzar lost his ‘nice guy’ image – I’m not sure he ever had one, but the Bible tells us his facial expression changed and that he was filled with fury, I guess he wasn’t used to having people refuse him! He heated the furnace to seven times hotter and had Shadrach, Meschach and Abed-nego tied up.  When they were thrown in the fire was so hot it killed the men who had carried them.  But as they looked suddenly Nebuchadnezzar got a reply to his earlier question.  He saw four men walking about and exclaimed that the fourth one looked like a son of God or the Gods.  The word he uses is a plural word elohim literally meaning ‘a heathen god’ which for him at this point meant the God of Israel.  Suddenly Nebuchadnezzar changes his tune and he calls out the three calling them ‘servants of the most high God’.  He sees that the fire had no effect on them, no singing, no scorching, not even the smell and he recognises the power in the God of Israel, responding in the only way he knows how  - by decreeing safety for all who worship him and death and destruction for anyone speaking against Him and then he sums it all up by saying ‘for there is no other god who is able to save this way.’  

This is the story that had been nudging its way into my brain and I had been doing quite a good job of ignoring it until I picked up a group of friends in a minibus and drove to Leeds to attend a conference ‘Cherish 2019’ with 8000 others.  On the way I was driving and unbeknown to me my friend in the back sent me a message the first part read ‘There’s another in the fire standing next to you, should you ever need reminding, that’s where he’ll be.’

I didn’t get the message until we had arrived at the conference.  I briefly glanced at the message and thought ‘aww that’s lovely’ but to be honest (sorry Rachel! X) I didn’t really take in the message or the significance at that point. Soon the music started and one of the first songs was a song called ‘Another in the fire’ by Hillsong the lyrics are:

There's a grace when the heart is under fire
Another way when the walls are closing in
And when I look at the space between
Where I used to be and this reckoning
I know I will never be alone

There was another in the fire
Standing next to me
There was another in the waters
Holding back the seas
And should I ever need reminding
Of how I've been set free
There is a cross that bears the burden
Where another died for me
There is another in the fire

By now I was starting to feel like this little ‘even if’ was gaining ground.  Then Priscilla Shirer, one of the speakers, talked about our God being the one who meets us in the fire.  All, of this was pushing into my psyche, God is powerful and even if….we will still face the furnace not giving into fear.

However, I had filled out a prayer card asking for prayer for Immi, for wisdom, discernment and for help to know how to keep ministering and working over this period ahead of us, but I had not asked for healing.  I just don’t think I had the faith at that point to expect it.  I have lived for quite a long period as the father in Mark 9 14-29, in fear of seizures, falls.  Three years ago Immi was thrown by a seizure 10 feet off a harbour wall into a foot of water – she was miraculously protected and only had a little scratch on her hand – but like the father in the story I have been saying to Jesus ‘I do believe, help me overcome my unbelief’ Mark 9:24.  One of the things I have been asking him for is a first-hand account of someone who has been medically, physically healed.  In my lack of faith a testimony of a subjective pain based illness wasn’t enough for me (I don’t think the pain is subjective but I needed it to be something measurable, definable, scientifically objective – I know, just call me Thomas!)  God wasn’t finished at this conference.

On the last day two ladies came forward, one was holding a massive bunch of cards, prayer requests and she had brought with her Jo Dunbar, an amazing lady who over the last year had faced terminal cancer.  She told her story and as I listened I could literally feel the faith rise in me.  The told of how she had been given a diagnosis of stage 4 cancer and all her consultants had said they were 99% sure that no treatment would be successful. She said that in the appointment room she had decided that she wasn’t going to let them speak death over her.  She started treatment and had a couple of rounds of chemo and the doctors were amazed as they could see it shrinking.  There was more to the story and I apologise if I have told it badly but the last part I can remember is that her oncologist phoned her in amazement telling her that she was looking at her scans and could see nothing. By this point I was in bits and as an aside, if Jo ever reads this post I want to thank you so much for sharing your story of faith and rescue. 

And this is where my challenge came.  If Shadrach, Meshach and Abed-nego can have faith to face the furnace and not give into fear, if God can rescue them from an impossible situation, if this lady, whose name I can’t even remember (so sorry!) can have faith for healing then so can I.

So, here is my challenge – I believe it is a challenge to me, but if you have the heart for this, if you are a pray-er, if you are a man or woman of faith and feel you can take on this challenge too, please pray with us:

I know he will meet us in the fire even if we have to go through it, but for Immi two days before the operation (which will be in the Autumn) she will have another MRI.  I want this MRI to be clear.  I want us to be able to say to her consultant before the MRI ‘there has been a significant drop in seizure activity’. And I want him to come back to us saying ‘We have done the MRI and the deterioration shown in the past MRIs has been reversed and we cannot see any evidence of Rasmussen’s Encephalitis any more.’

I know this is a biggy and I know, like the furnace, like the cancer, it is humanly incomprehensible but he saved them from being burned up, he healed the cancer, so I don't see why He can't do the same for Immi.   And like Shadrach, Meshach and Abed-nego will you say with us ‘I know our God walks through the fire with us, I know our God can rescue Immi from this illness and he will, but even if He does not we will not give into fear and despair for we know who holds the future.’

K x

Reeling...

Wasn’t quite prepared for what just happened. I wasn’t really expecting them to say what they just said....we just received a new label, a very much unwanted one.

So after the discussion at National meeting the neurology team sat down together to tell us the results today. They unanimously agree that she has Rasmussen’s Encephalitis  https://www.ninds.nih.gov/Disorders/All-Disorders/Rasmussens-Encephalitis-Information-Page

And advised a left hemispherotomy.

Whoa. Punch to the gut. Fight back the tears. Come on Karen, get a grip. Listen now. Take it all in. You need to hear this. You need this information....

Therein followed quite a long appointment where they went through everything.

So the headlines:
-RE is a progressive, degenerative disease and has no cure. They showed us her mris from 2009, 2014 and 2018 and you can see the progression. It is slow but clear and mirrors the very slow but steady progression of seizures.
- It has 3 aspects: uncontrolled Epilepsy, hemiplegia and cognitive loss. Which fits Immis history exactly.
- The biopsy confirmed their thoughts.
- Her SEEG showed some activity on the right as well as left so the odds of complete seizure control are slightly lower than most but as the disease is progressive there are better chances now than later.

The op:
Completely detaching the left hemisphere.
Impact:
Loss of movement on right. To Immi this won’t make any difference to her arm as she has bone, but she will be in a wheel chair initially. The surgeon believes she will walk again though.
Eyes; she will lose right peripheral vision for good.
Speech: from past MEG scan results they believe her speech centre to be bilateral (both sides) so she should retain speech.

She would be in hospital for a month and then rehab centre if needed. And LOTS of physio.

Hopefully after a year she would be able to wean off meds which may help her cognitively and behaviourally as it has never been clear what of her behaviour is her and what is meds. It could improve her cognition, though this would be a side advantage rather than the aim.

The team were unanimous about the way forward with the UK expert in RE apparently telling the team to ‘stop faffing’. They were clear and compassionate and it was pretty definitive. Immi asked some questions about memories - she doesn’t want to lose some memories and she is presently holding things up trying to work out what it would be like to lose peripheral vision.

Obviously this is a massive decision to make, and one quite frankly I didn’t think we were going to face as I thought deep down they were going to say it was too generalised and maybe offer VNS. The fact the progression is so slow makes it hard as we have to weigh up quality of life along side progression and future implications. We need real wisdom.

So I guess that is what I would ask for from any of you reading this. If you have a faith, please pray for wisdom for us and Immi in this. We need to make the right decision for her which will have life long implications either way.

Thank you for journeying with us in this.
K x

Recovery Day 10

I haven’t posted for a few days, mainly because I have been in bed, ill, for the whole time. This is the first day I have actually been able to sit up in bed, let alone get up. I’ve also stayed away from immi as I have had a temperature and blinding migraine and pressure in my head/neck, so whatever I had I obviously didn’t want to pass on to her.
Murray has been an absolute rock, looking after us both and keeping everything going. The nurse came to check Immis wound yesterday, apparently it has opened a little at the top which we need to monitor closely and take her to the walk in if it gets worse. She is still very tired and in pain, the neurologist said he doesn’t want her back at school before Christmas, although with her school right next door, we may allow her in for an hour at a time. We won’t do this while the wound is still open though.
If you are a pray-er, please do pray for protection from infection in the wound. I am very aware that’s I am obviously full of germs at the moment and am concerned for her in it all. Also please pray I get better quickly, I don’t remember ever feeling this bad and I have never stayed in bed for 3 days - but I I just haven’t been able to move - has been horrible, but I need to get well!
Finally please pray for Murray’s dad, Andy, who is in hospital in Glasgow after a massive heart attack on Tuesday, they have kept him in and hope to do a valve op, but we don’t know when that will be.
It feels very full on atm, and I feel very easily overwhelmed.
Thank you all for your love and support and if you have messaged or texted over the last few days I’m sorry I haven’t replied, I’ve been totally out of it.
K xxx

Recovery Day 7

So we are home, but oh my word I cannot believe how exhausted, emotional and yuck I feel today! Immi is doing well, she is sat watching DVDs, still a bit swollen but not much pain and no seizures so far today so that’s all good news. I on the other hand feel a bit like a computer that has crashed! There is a bit of a standing joke in my family (and at work) that I leave all the tabs open on my computer and my brain tends to work similarly. I think I may have frozen!! I am struggling to get my brain to function at all and am not sure if it’s just an emotional crash down, a reaction to the rubbish food I’ve eaten over the last couple of weeks, or if I’m fighting a cold. Either way, feeing pretty rubbish and just concentrating on looking after Immi, feeding the family and getting washing done!

In this place though, I don’t want to have a big pity party but rather, shout out to all the parents who are caring for children and loved ones over months in hospital.  How they keep going and keep giving is astounding and so admirable. So to Anne travelling from Tewkesbury to BCH each week at the moment and to Chris who basically lived at BCH for a couple of years. My love and greatest admiration to you.
With loads of love,

K xx

Recovery Day 6

After spending the night at Ronald McDonald House with Immi - just one seizure at 6.15 this morning,  we popped back into the ward to be discharged.
Immi still has a way to go; still swollen and needs wound care, and her right foot is dropping more than before, but we can go home.
They very sensibly put in absorbable stitches so we would have to journey back up but we have to keep it dry or they might disolve too soon.
We are so proud of how she has managed, now the biggest challenge is to keep her safe while she heals- she isn’t great at limiting herself- and is a bit clumsy at the best of times!- and a fall (from a seizure or otherwise) could do a lot of damage at this point.
We value your thoughts and prayers as we take her home. Xxx

Oh nearly forgot, a lot of people have asked about the results of the biopsy. We asked how long it would be and they said it will be quite a few weeks. 3-4weeks for histology and then it will go to national discussion team and only after that when they have a direction will they get in touch with us. Xxx

Been in and out, just about to leave and she has conked out!!

Recovery Day 5

Last night and this morning have seen an increase in seizure activity so we are back to how it was before (though nothing more), not quite as swollen as she has been, though a little more pain,  but the good news today is that we have been released to all stay at Ronald McDonald house tonight with a view to driving back to Pz tomorrow.

Recovery Day 4

Hi all,
Things are still going well, but slow. Yesterday Jess came to see Immi (and us!) It was a really precious time and was so lovely, there was fun in our little area with the wii in full use and Enoch a volunteer running the games with Immi and her pal in the next bed!
I think she may have overdone it a bit and was wiped out in the evening!

Today, when I arrived this morning she was still sound asleep, but had taken her dressing off. (Gory photo warning below!) She took a while to wake up (which isn’t at all unusual) and was pretty grumpy til I had managed to get some food in her and get her washed and into some clean pjs.
She desparately wants her hair washing but we can’t wash her hair for 7-10 days as her stitches are dissolvable, so I’ve (very carefully) brushed her hair out and loosely plaited it. She is happily sat now watching her iPad.

She will be reviewed tomorrow and we will know more then.

Recovery Day 3

It’s the weekend at the hospital which means the hustle and bustle dies down but it is more boring! Immis swellingseems to be changing through the day, much worse after lying down all night but then kind of moves down her face over the course of the day as she sits up! She’s amazingly not in too much pain, but is struggling to leave her eye alone, rubbing it quite hard (which makes my toes curl!!)
Mr Walsh came round yesterday afternoon and Immi quizzed him about which muscles he had cut etc (they cut through the Temporalis muscle at the top of the jaw if anyone is interested! It’s the one you feel if you put your fingers in your temple and clench your teeth.) He said he wants us to stay in over the weekend and he will reassess on Monday.
Yesterday we some wonderful friends drive all the way up from Truro to see us and today Immis ‘birthday twin’, Jess, is coming from Derby. We haven’t seen her since we were here last year so we are looking forward to seeing her.
Everything is going as well as can be expected and we are thankful to the whole team around her and us - and that includes all of you!
With love, K xx