A Big Week - night 2

Well if yesterday was a long day, last night was the longest night.
We have been given a room in Ronald McDonald house (I'll write about that later in the week) and Immi was allowed to stay with us as long as she was back on the ward this morning for 8am.
Well, sleep evaded us. Especially Immi. And keeping the fear and the "what ifs" at bay was hard. We find ourselves watching Zootopia at 2.30am in a bundle. Immi struggles to get to sleep at the best of times and often needs a weighted blanket, this night was even more of a struggle. She wanted to be held really tight, which would have been fine if she hasn't been breathing right in my face! I'm not a night hugger! I need my space, but tonight I didn't care. I was in a really uncomfortable position, but I was holding my baby. Tomorrow held horrible hours in its hands and I would hold her all night if needed.
 In the dark the tears rolled and for the first time in my life I guess I felt a bit of the impending doom that Jesus felt in Gethsemene. Knowing what was to come and asking if there was any way of avoiding it. No wonder he couldn't sleep! It was a scary place. But with it came a recognition....after three days there was new life. It was horrible, the worst thing imaginable but the best came out of it. Renewal. Restoration. New beginnings. There is a verse in psalm 30 that says "tears flow in the night, but joy comes in the morning."  This is my prayer over the next week or so. That thought this crap that Immi is going to go through that joy would break through, that a new freedom and new life would come.

A Big Week - day 2

It has felt like a loooonnnnggg day!

We got up, packed up and came into Birmingham. We had a couple of hours to kill and Immi still had some Christmas (yes, Christmas!) vouchers to spend so we had a trip to The Bull Ring and to Claire's accessories. Immi gets overwhelmed in big shopping centres at the best of times, I think it is something to do with the noise and lights and today was no exception.  It took us 45 mins to get past the first shop, firstly because as she entered it (The Entertainer) she went into a seizure and we had to go and change. When we finally got back in there she spent another half an hour wandering aimlessly around the entertainer, not really looking at anything, but not willing to move on either.
Eventually we were able to move on and in Claire's she bought some headbands as she will want something to cover her head.

Then we moved onto the hospital.  When we arrived at the ward at 2pm as requested we were asked to sit near the ward door as they were discharging some other patients.  Immi was called for a blood test to show she has no infection before op. We went down to outpatients for this, only to find the things had already been sent to the ward, so we went back up! Immi eventually allowed her blood to be drawn although she wasn't keen until I explained we weren't doing the op today.  I think she thought it was the start of the procedure. All done we continued to wait. Then Immi was called for another blood test - to determine blood type this time. Not sure why they had to do two different tests - GMC policy apparently. (Any medics out there feel free to enlighten me as to why patients have to go through two separate procedures! Seems unnecessary!) Then the wait again!

Then the big cheese walked in.  The man whose hands will be responsible for our daughter's fate in a way none other will ever do - I do hope he carries that responsibility heavily!  It was a bit of a stunning meeting.  They have decided to place 16 electrodes into Immis brain.  13 on the left into the central and frontal lobes and 3 in the right frontal lobe. She will spend about 5 hours under general anaesthetic. Firstly they will do another MRI, then place the frame, then a CT scan and match the two up.  Then they place the electrodes and then another scan to check placement, and finally she will be woken.  They will then monitor her seizures at full meds and drop them out as and when they need to.  If they find a specific place they feel they are eminating from then they can heat up the electrode and temporarily kill of some cells around that area and see if it slows seizure activity.  This will give them an idea of what they can do as a permanent fix.
Finally after 7 days they will do another short op to remove the electrodes, then she will stay for another day or do before returning home.  He said he will keep us an extra day as we live so far away.
Then of course we had to sign off. We were told that there is a risk of clots, small or big, a small risk of meningitis as they are going into the brain and a small risk of life......blooming heck. I really hope this is worth it. Immi is about to go through a seriously horrible week that has the potential to bring about an amazingly good change but also has a small chance of bringing about no change or making things worse.  If you are a praying person please pray this brings about an amazingly good change!

A Big Week - Day 1

A big week Day 1

We arrived in Birmingham late last night. Second seizure of the day was a Taunton Deane services....pleased to report that their disabled loos were clean, and they have showers!  We got 10 minutes away from Birmingham in reasonable time and then the motor way was closed both ways due to a car fire and so we got stuck for over an hour! But hey ho, we got here eventually! We stayed last night and tonight in a lovely little Airbnb place, a little annex to the house (with wifi and Sky TV so Immi is happy!). It is lovely and the host is the head of patient experience at Birmingham Children's hospital where we will be, so she has asked if we can give her feedback! Mystery hospital stays...a whole new concept!! Lol!

This morning we went to a local French coffee shop - it really did feel like France inside complete with the music (which Immi loved) and fruit tarts. It was a lovely start.

And then off to Cadbury world.  As we arrived all the characters were outside with a couple of smart looking people, having a photo shoot. The parrot looked pretty perturbed when Immi bounce up and asked for a photo! They definitely weren't there for the kids! We found out later that one of them (the smart ones, not the dressed up ones!) is the present president of Cadbury, so it must have been a photo shoot for something important!

We had a fun time going around Cadbury world and Immi did well, until about lunchtime when she had a seizure and fall and had to be changed.  After that she was complaining of a pain in her hip so things got a lot slower, she nearly fell asleep when we sat on a bench and as we had done the tour and 3D experience we thought we should call it a day there. 
Yesterday I had made the realisation that all of her nightwear is the sort that goes over the head and so I had scoured the Internet for button up pjs.  Immis is of that age where she is too big for many shops kidswear but not big enough for ladies wear (and her tastes in clothes aren't in that place at all!)    I managed to find a couple of button up short pyjamas in M&S and had ordered them so we swung by to pick them up and then came back to our Airbnb pad. 

It has been a lovely day....not trying to ignore the events of the next few days at all!!!

Well, that didn't go according to plan! ***Warning...this post contains spiritual content (and a bit of science)!***

It's windy today here in Cornwall - very windy.  Murray went off to St Austell to preach and I sat listening to the wind, debating whether I should wake take Imogen to church this morning despite a late night seizure.  Why go to church at all? 
I had already watched some great teaching from LIFE church  http://www.lifechurchhome.com/ on my ipad as I drank my coffee in bed, so why bother? I decided to 'bother' as it is in relationship we grow.  
Anyone who knows a bit of brain science (sorry - science is my other great passion!) knows that our limbic system is the part that deals with our emotions and we can only experience joy when we get those oxytocins going, and that happens when we are in relationship with others.  So, spiritual aspects aside,  meeting with a group of people who share the same worldview is great for mental health! 
Apart from that, when God's people worship something amazing happens; perspective on life changes and God breaks in.  There is a part in the Bible that talks about us being raised up on wings like eagles.  It is talking about strengthening, but I believe it is also talking about perspective...being able to see the big picture.  Something changes in our thinking when this happens. 

Anyway, I start getting Immi out of bed (always a challenge in itself), she had a seizure late last night, so I decide she needs to shower this morning.  All goes well despite being at her stop/start pace.  We get in the car (a little late by now) and start to drive to church 5 minutes away.  Half way there she goes into a dramatic seizure, so I put my hazards on, pull over and hold her.  She is wet now, so we drive home - feeling a little dispondent as I had made the effort to battle with the shower speed, get meds in her, get her splint on etc etc.  We get back and thankful the same parking space was still available.  She was still fitting a little so I ran to unlock the door and went back to the car to support her to the door.  As I open the door and lean over to undo her seat belt and almighty gust came along and knocked the car door straight into my fore head....OUCH!  It was that kind of pain that draws tears despite yourself.  I held my head for a moment with Immi saying "Mummy, are..." FIT "you..." FIT "ok?" FIT.  What a pair.  I gathered myself and got her to the house and the bathroom, where the tears flowed for both of us.

And if I wasn't a believer, that is where this post would stop.  But I am thankful that I have a place to go with the crap, so in that moment Immi and I did church.  I messaged a couple of friends to ask them to pray and then we did life with God in the way King David did life with God.  It wasn't pretty, it wasn't quiet.  We ranted and raved.  We told him how  it really is and how we don't want it.  King David was described as a 'man after God's own heart'.  He did things wrong, and wrong was done to him.  His life was full of ups and downs, But he was real with God.  If you read the Psalms, they are full of David being real with God. And believe me - we both got real!  When you are standing, letting it all out to God with your 13 year old telling him how she feels in no uncertain terms - that's real.

So often we have an image of Christianity of being prim and proper and looking neat.  NO, NO, NO!  That is not life with God. That is not relationship with a heavenly father.  That is NOT being a Christian - that is going to church.  There is a huge difference.  

He doesn't want us all sorted and perfect....we never get there anyway!  He just wants our hearts; the pained parts and the joyful parts, he wants to comfort and to celebrate.  And above all - which I needed today - He gives a hope and a security that it won't always be this way.

So... my head still hurts. I didn't make it to church to be with others. But I could be sitting in a mess of tears and hopelessness right now.  Instead, I choose Jesus, I choose hope, I choose joy.

Pulling back the curtain...

Today was not typical, but not totally abnormal for us either. We went to see a potential SN school for Immi this morning. When we reached the class she would be part of she stuck a painting shirt on and got stuck in there. It was beautiful to see. 
Following the visit Immi and I headed half an hour North to the hospital for an EEG. Her last experience of an EEG was the video telemetry at Birmingham which she doesnt remember with particularly fond memories. However I prepared her well, or so I thought! I wasnt quite ready for her reaction. 
When we reached the room she sat down in the chair but suddenly a penny must have dropped because she leapt out of the chair with het hands o er her head screaming "never! You are never doing that again" and dropped to the floor crying. What followed was a mixture of tears and good cop/bad cop parenting from me while the technician and doctor looked on. The tears flowed, with us sat on the floor and Immi lamenting that no one understood what it was like to be her, and that there was no way anyone would ever be able to fix her "nightmares" (what she calls her seizures). No negotiation would convince her otherwise, so I switched to bad cop mode and told her that if she wasn't back in the chair by the time I counted to 3 then there would be no pancakes this evening, no ipad all week and no pizza and film night ritual on Saturday (woe betide anyone who messes with Sat night video and pizza!). I was apparently "evil" and "the worst parent in the world" at this point. To which I told her "I know darling." All the while actually feeling such a mix of emotions; humiliated that I had to deal with it so publically, frustrated with Immi, compassion - I wouldnt want to go through the crap she has to go through either, deep sadness at the despair she feels about her lack of healing and feeling that too and cracks under the determined "tough love" exterior that I was showing. 
At "2" she said "if you put the fingers down Ill get up". We follow a scheme called 1,2,3 magic from the States where I count on my fingers without saying anything so she knows consitently how long she has and what will happen next. 
I stopped, she got up, I breathed a sigh of relief, she put her hood up! It was her last ditch attempt at defiance, but she gave up quickly when I started to count again. She did however scowl the whole hour...quite a feat!
The rest of the session was readonably uneventful apart from them being able to see constant jolts on the screen that were either undetectable or just very slight when watching Immi.
When we got home Immi went straight up for a shower. I obviously have to stay close at this time. And today I was very glad I did. No sooner had we put the shampoo on than there was an almightly crash and immi lay in the bottom of the shower tray, seizing. I am very thankful the glass didnt break and that it wasnt a hugely long seizure.  To be honest I wasnt sure what to do and in the end decided it was the best place to stay. I turned the water off and covered her with a towel and eventually she came round and we finished the shower. As she finished up she said "You dont deserve a girl like me" I replied "I know, I.am so lucky!" "No, I didnt mean it like that."  she said. "I know". I reply.
She is clean and cozy and looking forward to pancakes now.
Are there lessons to learn from today? Well one is that consistency pays off. If we hadnt been consistent over the years, following through with doing whag we say then there is no way we would have got that EEG done this afternoon. 
A friend wrote and said that is sounded like I need a good nigts sleep. Yes, that is probably true, but days like this are pretty commonplace for us now, so no more than normal. I dont normally post a lot of what goes on on social media etc. But sometimes I think it is good to part the curtains and let people see a glimpse of "normal" life.  
So if you know someone who is parenting a child with a special need of any kind, please remember; the snap shot you see is the day in, day out, suck it up buttercup, batton down the hatches, set sail and don't give up life, they have to lead every day. Somedays are tough but good, somedays are tough and bad but every special needs parent knows that their child is worth it.

Musings from the hospital...

Right now I'm sat in a hotel room metres from Birmingham Children's hospital.  I was sat in this same room last year for Immi's video telemetry.  This year we are a bit further down the brain surgery  pathway; today she had a joint OT/physio/S&L assessment where they put her through her paces and tomorrow she has a MEG scan to place her language acquisition and processing areas in her brain - important so they know whether they can operate without her losing her language.

She did really well and answered everything the speech and language therapist asked (with a bit of help from her Ritalin and bribery of a Christmas present from the hospital dept!)  The therapist wisely decided Immi had had enough and so we will go back tomorrow after the scan if able.  She wouldn't have got much more out of her anyway as 5 minutes later as we walked the couple of hundred metres to the hotel, she had a seizure.  It is quite interesting how much more help you get offered when having a seizure right outside a hospital compared to anywhere else!!

While sat here this evening I have been flicking through Facebook (as you do!) and clicked to see 'my album of Life' (see pic below). I nearly shared it, but something stopped me. As I sat and mulled over what it was that had stopped me I realised a few things:

1. Firstly I realised that Jed was missing from the photos. Now, Jed is a big part of our lives. We love him dearly. He is an amazing son and we are very proud of him. But he does have things to deal with that many of his peers don't. He has to deal with the fact that life pretty much revolves around his sister. That she demands attention. That his whole world was turned upside down when she was diagnosed; he moved home, country, friendships, school, language. He has learned to be very independent very quickly (probably too quickly) and is pretty mature for his age.  We try to spend quality time with him, but after the daily routine of life with Imogen plus work, there isn't a whole lot left as these photos testify to.  Family activities are few and far between now. I know once teenage years are hit it is often hard to get the family together anyway, but I always thought we would be going walking or riding together by now, but those kind of activities just cannot happen. So we either split up or they just done happen. Family time now is mainly film night on Saturday evening which, thanks to autism, has become something very hard to shift.  So. Just for the record I LOVE YOU JED! Xx

2. Secondly, I realise life has not turned out how I wanted or expected. I thought we would be in Kyrgyzstan long term. I thought we would be having family adventures together. I thought we would be active. I never expected the majority of my 'life album' to be photos taken at home. Anyone who knows me will testify to the fact that I am really not a home bird...more a migratory one. But I have kind of had my wings clipped! I feel a bit like an Arctic Tern living the life of a quail! I'm still not quite sure how to act. One of the things I realise is that living this life I feel much more isolated. It is much more of a struggle to reach out to people. My life is smaller.  Getting out at the weekend when you live with someone whose sole aim in life is to have consistent pyjama days is hard work! And when we are out my life is full of snatched conversation and chasing after Immi; constantly on high alert for danger or seizure. Either that, or hosting deep, UN-like negotiations about how long we have to stay out before she can have her iPad back! I'm sure I look either like a meercat on steroids or an overworked exhausted donkey when we are out, so mainly we don't go out. If we do it is planned like an army manoeuvre or I am alone!  So if you are in the Penzance area please do drop in!

3. Finally, I choose to be thankful. I am thankful for family, for friends, for a great team I work with at school, for a home, for great (and supportive) schooling for bother kids, for the NHS (though I sooo wish it was better funded) we have had, and continue to have the most amazing treatment and care - the NHS is truly amazing.  For Immi - she has taught me so much. I fear for her future. For what happens later when she has left school, and then when we are old, but also when I see the atrocities overseas at the moment I realise that if our country's infrastructure fell it would have an immediate and huge impact on her life. I'm thankful for her open and loving spirit. Her ability to make people smile with a word. She is so generous with her words and wherever we go, we normally leave someone smiling - although I admit there are the other times too! I'm thankful for Murray- the ultimate tag team. They say that families who have children with special needs have the highest divorce rate. I'm not surprised; the strain put on the family and emotional and physical energy needed to look after what is in effect a toddler FOREVER is huge. I have the utmost respect and awe for single parents, I don't know how they do it. But I am very thankful for our tag team. When one of us is about to lose the plot the other one can step up and it is so necessary. And I am thankful for God.  It is God that has taught me that our worth is not based on what we do but on who we are. In the world's economy, unless you have academic ability or monetary value you have little worth (the recent debates on screening out unborn babies with Downs Syndrome pay testimony to this), but I believe the Kingdom of God has a different value system where we are valued and have worth because we are made in the image of God.  Yes, it is sometimes a broken image because we live in a broken world, but our worth is not in what we do or produce, but in who we are. The world at the moment offers little hope in the face of brokenness, the kingdom of God offers hope and future. Jesus offers beauty for ashes, gladness for despair and freedom for captives....that's the kind of future I'm after! 

Turning 12.....

Immi turns 12 tomorrow. Yesterday she spend the whole afternoon playing with a 3 year old on her level. Not lowering herself to her level you understand, she just is at that level. Today she drove me mad in Sainsbury's running off.  Not sticking with me. Not listening. Not following instructions....toddler behaviour, even down to the tantrum when she couldn't have her way. 

But tomorrow she turns 12. 

If truth be told, there is joy in her turning 12. I love my daughter and the beautiful young woman that she is turning into, but there are other emotions running high in me too. 

Grieving: grieving for the growing up that she may never do.  To look from outside, at the age of 12 I guess I was expecting girly shopping trips just before Christmas, the odd ice skating trip, films as a family... But so many of these things will never happen.  Trips into shopping centres are meticulously planned and very short and sharp.  Ice skating, epilepsy and hemiplegia don't really mix, so that one is out.....when she was smaller we did manage it once with the little sit and push alongs they had,but she is a bit big for that now! And films as a family are getting more rare as Jed's tastes grow up but Immi's stay at very much cartoon, slapstick stage. In fact as our children grow the expectation is for life to get easier, but in reality for those with children with special needs often the opposite is true. No longer do the children get away with "odd" behaviour by being cute, they aren't anymore. The gap between siblings grows as do interests, but there is still a residue of sibling rivalry; the "it's not fair" brigade. Throw a little bit of puberty hormones in the mix, along with still have to pack a changing bag, deal with behaviour expected in a two year old and it is easy to wonder if the toddler years will ever end.  And maybe they won't.  Which leads me into my second emotion; fear. 

Fear, as I've just mentioned that the toddler years will never end. That perpetual feeling as a parent of constantly being on high alert for breakages to either self or property, of behaviour that needs correcting, of ensuring we have everything we need.  As a parent of a toddler I knew (or I thought I did) that this point in time was hard, but I needed to keep on top, be determined and consistent, especially in instilling manners and politeness. I knew it was only for a couple of years and then they grow and we are into the next stage. And with one child this was true, but with the other, I am still there, daily trying to instil that politeness, reminding to look both ways before crossing the road, to not pick your nose, to sit like a "grown up girl", to share and play nicely because he/she is "much smaller than you" etc etc. I'm tired. Parenting a toddler is tiring, ask any parent and after 10 years of it I'm tired. I want her to be 12. I want her together dressed herself, to brush her hair and choose clothes to wear, to clean her teeth (I don't even mind reminding her I'm not expecting miracles, just to not have to fight over it every single day), to know who her friends are, to be able to lay the table when asked, to walk the 100metres to school with her friends instead of her parent. And those are the present things I grieve, let alone the future.....

But they are fears based on my own well being, my fears for her are bigger and far reaching.  I fear for her vulnerability, that somewhere along the line there won't be a parent or TA watching out for her and someone will take advantage of her innocent, naivety.  My strange, beautiful and poignant something year old in a 12 year old body. The mismatch between internal and external is scary because it has so many expectations that go along with the external. We make so many judgements and assumptions the minute we lay eyes on someone. We all do it, it is how our culture works, and most of the time we need them to read the subtle social cues we all use. But Immi smashes through all those cultural assumptions. She cannot help it, her body tells the world, "I'm 12, I'm beautiful, I'm happy, I'm nearly a teenager". Her life declares, "I'm 12, but I cannot see your point of view. I cannot keep up. I need your protection. I need your help, but sometimes equally I don't want your help because despite my body letting me down with seizures and hemiplegia I am one strong willed independent miss!"

So in just a few hours I will celebrate with my daughter all that it means for her to become 12. With her two friends, that the TA helped chose, coming to her movie party, we will rejoice and celebrate all that is Immi. For despite my fears and worries, I believe there is a reason and a value to her life that is far greater than the sum of her parts. For she is teaching me that what we do does not give us worth, it is that we are.