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!