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