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.

Happy Mother's Day....What might have been.

It is Sunday morning. It is Mother's Day. My husband and son have already left for church and we need to get ready and leave. Everything is going well, then suddenly, like a switch being flipped, everything changes. The peace of the morning shatters and the illusion of the perfect family vanishes.   
It is teeth cleaning time! No more "I love you Mummy! Are you enjoying your special day Mummy?" 
Suddenly she becomes the master of avoidance. Time is ticking away and I see myself missing a third week of church in a row. I feel the pressure, not because I think God would mind (I'm certain he is cheering me on in this), but that I am one of the leaders and I feel the pressure that others will wonder if I have left or if I'm avoiding the place!
The more I try to cajole, bribe, give choices (teeth or shoes first?), yell or beg, the more the heals go in, and we get to a point where she is sat on the floor refusing to move. 
This is like most days, and most days I am ok with it. 
But today isn't most days. Today is Mothers Day. Today is the day we are celebrated and the mothers of us look at our children and give thanks. 
Suddenly it hits me. 
It wasn't supposed to be like this. 
Call me naive, but I thought by 11years old both of my children would be dressing themselves, getting me breakfast on Mother's Day, we would go for a walk together, swim or play a board game together, enjoying each other's company. But we don't. We can't. We don't manage things together - it is a good day if she eats at the same time as the rest of us!

And I go downstairs, call my husband and explain we may not make it, and cry. Cry out what might have been, the friendships she might have had, the country we might still be in, the life we might have been leading.
But then it hits me....what might have been.  When her stroke hit, it could have killed her. The area that the damage is in is a very dense area and the doctors likened it to a bomb going off in a city rather than the countryside; the devastation is much greater. She may not be with us. 
I may not have the exasperating mimes and clue giving that she puts us through to give us an answer when we ask a simple question. We may not have the laughing like a drain at some comment in a film. We may not have the refusal to buy a Mother's Day card because she already made the best one I could possibly get! We may not have the off key rendition of "Let it go" or the hug that threatens to knock you off your feet. 
I am so blessed. How dare I look at my life and think "what if..." We have so much in this world and in this country. We only have to look at the news without our desensitised eyes to realise how blessed we are. Earthquake, hurricane, ethnic cleansing, bombings, beheadings, Ebola, war, displaced people, so much sadness. 
So, if I'm late...I'm late. Sorry church, sorry school, sorry world, but sometimes I just have to go at Immi pace and remember my blessings.

Overcomer

Ten days seizure free!!! Yaay!
Just wanted to share!
We started on a new drug a few months ago, and it seems like there has finally been a change.  Seizure numbers dropped dramatically and then, he last one was 10 days ago.  Fantastic news? It sure is.  With it however come other changes.  Imogen is a unique mix (as we all are I guess) but when something changes there is always a knock on effect. This time her behaviour has been affected and she swings widely from moodiness to crazy bouncing off the walls hyperactivity with the swiftness of a mouse trying to dodge the capture of an owl meaning she is still awke well into the night and then awake again bright as a button at 7am! We also discovered years ago that when she had more seizures her dystonic, tight arm would loosen off.  So, it is no surprise that her arm has tightened up again.  She is amazing at coping with this though; she never ceases to amaze me when I find her folding, cutting, sticking etc using her chin, elbow, foot or anything else available.  Things that I know I would get unbelievably frustrated with and probably throw across the room she takes in her stride and beavers away at. Yes it takes an inordinate amount of time and she doesn't run on any time that relates to GMT but do you know what?
I've decided I DONT CARE!! I have made a decision that I should have made along time ago, to harness and encourage her in her creativity.  When I find her making a fairy house at 11pm in her bedroom with paper, scissors, Sellotape and cardboard everywhere.  When I find her feet covered in red paint in the morning because she has woken in the night and painted the aforesaid fairy house. I will celebrate.  I will be glad that she is an overcomer.
Sir Ken Robinson http://www.ted.com/talks/ken_robinson_says_schools_kill_creativity?language=en  talks about our (school) curriculum killing creativity.  That we have created an academic inflation where the core subjects are the only currency. He is a true advocate for the importance of creativity and the arts.  And I've decided I think he is right.  Don't get me wrong, I have no problem with academics (I'm finishing my masters at the moment), but when that is the only 'valued' box we give children to fit into, and they don't fit, this is a problem.
When I look at Immi with her weak side, her lack of organisational skills, her poor reading ability, her lack of attention to certain things, her sensory needs, her non existent awareness of time, I know she will never fit into that box.  And if I try to fit her in, and if I don't protect her from a society that would say 'if you don't fit you are no good', I am not being a good parent.  So, I will take notice of the things she enjoys, the things she feels she is good at and I will celebrate them, I will allow her space and time for them, i will encourage her I them.  I will hold back the urge to hurry her, to contain her mess, to mold her into something that fits the box and destroys her in the mean time.  If she can overcome lack of mobility, lack of academic prowess, lack of organisational ability and be something amazing, something beautiful, creative and inspiring, then I can overcome what the world has moulded me into.  I can overcome my lack of being able to step out of the schedule, my lack of being able to see past the academic value of education, and my fear of finding a different path.
Most of us walk that well trodden path, the one that we can all see. It has sign posts, guides, handrails for the rocky parts.  But, you know what, the world needs Imogen and those like her, because they walk another path, they have to find their own path, hack their way through forests, clamber over rocks, wade through rivers.  They are hard paths to find, but they are adventures, they are colourful, they are unforgettable.  And they are the journeys we all learn from.

Sad

Felt I needed to update everyone.....it's 11.45pm on the same day as I wrote my earlier post.  Immi just had a big seizure in bed. Have cleaned and changed her and now she is hyper and giggling like she is drunk, but needs to go to sleep. Epilepsy is a sinister, foreboding enemy that I hate with a vengeance. 

What a change in just a few days!

Blogging today about something I don't really understand, but seems to be amazing. 
 We recieved Skylar 10 days ago now and he has settld in so well.  We have taken him all over the place; to church, to parties, to the train station, shops, parks etc. and he has coped so well every where.  He really is an amazing little puppy.  But even more amazing than that is the effect he has had on Imogen.  

All of us love him and enjoy being with him, but for Immi there has been a profound effect.  The day he arrived she had two seizures and they were the last she has had!  No seizures for 10 days now!!! This is unheard of, and totally amazing.  There have been a couple of other changes happening at the same time; we are slowly putting carbs back in her diet, and we upped one of her meds back up a little. But both of these changes have been in place before and have had no effect at all. In fact we have a new set of meds sitting on the shelf ready to try but I am holding off as we may not need them! I am apprehensive as I write this.  Can a dog really bring this big a change? Is this just coincidence? What on earth is going on? My science side is trying to work out, can the sensory side of stroking and being with the dog really have such an effect on her brain activity that is is not triggering the synapses and activity that caused the seizures before?  I don't understand this at all, all I know is that we have been praying for a miracle and I am tentatively wondering if that miracle has arrived.  I am kind of emotional and kind of numb and not quite believing yet, but I wanted to share with so many of you that have been sharing (and praying) our journey with us.

 Another change in Immi is that she NEVER sleeps in the car, she just can't. The other day we came home from the park, only a 10 minute drive.  The dog fell asleep with his head on her lap and by the time we were home she too was asleep in the back of the car! Murray and I just stated dumbfounded at each other!

Skylar is also earning his keep already in helping Immi with her behaviour.  Yesterday, we went for a walk and Jed carried Immis scooter up the hill for her.  He asked if he could have a go but she snapped 'no!' I left and I pointed put that he had helped her and she wasn't being fair, so she shouted after Jed, who by this time was at the car and no longer wanted a go.  This instigated a total meltdown.  She stopped, sat down, cried, wailed, lamented, full on, no negotiating, Immi tantrum. Normally I went through my arsenal of negotiating weaponry; bribery, threats, pleading, shouting, etc etc. and at this point would normally give up.  But this time I was suddenly struck that this was why we had Skylar.  I went and got Skylar from the car and walked him back with me.  He asked straight up to Immi and buried his head under her arm.  She immediately, stroked and hugged him.  I gave her  the lead and they walked together, Skylar walking perfectly to heel, back to the car.

Another area he helps at already is at wake up time.  Immi struggles to wake and if I wake her she is awful, grumpy, snappy and totally reasonable, often refusing to go to school, take meds etc. (I know some of you maybe saying, well my son/daughter is just like that, but for hose of you that know Immi will know that this is on a different scale!)  Now however, Skylar wakes her and she wakes up happy every time, without fail! Amazing!

There is a part of me that is worried that with these declarations everything will go wrong today, and  her seizures will start up again, but I just feel this news is too big not to share!

Skylar

I was woken today by a phone call from the puppy courier.  He had had a breakdown in the M6 and so needed to change his plans, could we take our puppy today instead of tomorrow?!
Yes!
I ran back into the bedroom and woke Murray excitedly.  "We need to get that rhododendron out of the garden, sort out the living room and get a new bin!" I cried.
He groaned something in reply and rolled over!
Undeterred I got up, went to the gym (go me!) and took Jed to get a new bin as I really couldn't face a new puppy with a broken bin!
Just after eleven the van rolled up and out came Skylar.  He is gorgeous. Keith, the courier, brought him into the kitchen and he stood there looking at us for a short while, but then started to warm up and enjoyed the attention although he was still quite quiet. Just as I was asking Keith when Skylar had last been to the loo and he was telling me he had recently been in the van, Skylar decided to make the hallway his own!  This made it harder through the day to get him to pee and poop outside as he wanted to go back to the same place, but by the same evening, yes, really, the same evening, he had caught on and was doing it outside.
Throughout the rest of the day, he found his feet, and spent some time individually with each member of the family.  Imogen had a seizure and he was calm with her and stayed with her, not bolting or running away.  He followed her around the garden and she enjoyed hugging him, although she was full on or full off with him.  It was lovely to see each one start to develop their relationship with him.
Jed, as a sibling of a child with special needs sometimes struggles.  Imogen gets more attention than him, (partly because her disabilities demand it, and partly due to her personality) and he struggles with this sometimes. He needs extra patience with her and he has a deep sense of responsibility for her.  He always stays near if we are out and when we are on holiday and the like he will watch her like a hawk, telling us if he feels that she is too far away or we aren't watching her well enough.  He has rescued her a couple of times when she has had seizures in the pool, so he is a great older brother. But I wasn't sure if Skylar would add wood to the fire, in the fact that on top of everything else, even though (in his eyes) she can be a right pain, she is now getting a dog too.
My heart melted when this evening, he turned to me and said "I think Skylar is really going to pull our family together." I could have cried.