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!)