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Wednesday, 23 December 2015

Santa's Sleigh and Silly Legs

Twas the (day before) the night before Christmas and all through the house, not a creature was stirring not even a mouse.

As I sat down at my computer adorned in fairy lights and surrounded by Christmas cards to compose this post, this wonderful line of prose struck so true to me.

My little Florrie monkey is affectionately known as Mouse to my husband and I and the house is indeed   strangely free from the usual demands and dramas that only a toddler who thinks they are a teenager can deliver with such a unique charm.

Even the dog is out enjoying the park thanks to the wonderful help supplied by my parents and the only noise that can be heard is the occasional cough and splutter
from my man flu suffering husband studying in the next room.

I actually can not remember the last time that I experienced quiet quite like this. Hang on a minute, my daughter is 29 months old, so I'm going to go with 29 months and one week ago!

Becoming a mum has been without a doubt the best thing I have ever done in my life, but it has also been the hardest thing and in all honesty is becoming harder the brighter and more active that my little monkey becomes.

Being told for years that due to my accident and subsequent illness I would be unlikely to ever know the joys of motherhood, I'd daydream for hours from my rehabilitation bed about little cosy bundles of joy laying peacefully in my arms and what I would call such bundles and what they would look like.

Although I would also occasionally let such daydreams meander further down the pathway of time to picture family walks in the park and holidays and cosy afternoons watching Disney movies together with hot chocolate and marshmallows- I think it is only natural to fixate on the baby stage when you are being told that these things are unlikely to be possible.

Those of you who know me personally or indeed are familiar with my story through my ramblings on this page, will know that God did indeed answer my prayers with my gorgeous Florrie back in the summer of 2013 and to go one further has now even blessed us again with another baby which is actually due anytime now, so there may well be that rather lifelike new baby doll arriving for Florrie on Santas sleigh tomorrow night!

With my pregnancy with Florrie I was able to research the best prams/travel systems that would work well with my wheelchair (for me personally this was the Stokke Xplory due to it's lightweight and easy one handed steering if you are also becoming a disabled parent), as well as explore other clever solutions to get around the practical issues of raising a baby with restricted mobility, such as co-sleeping cots, slings and other clever gadgets etc.

I thought I had it sussed and despite my usual neurological pain and restricted mobility I'd go as far as to say that in the first few months to a year of Florrie's life, I look back and think that maybe I did indeed have it sussed.

I'd strap my gorgeous little bundle to me in her sling and drive off into the SW London sunset in my electric wheelchair and do shopping, take public transport and walk the dog. I even attended meetings for my charity like this.

Fast forward a little over two years later and Florrie is no longer a quiet, cute little bundle who I can sit on my knee on the wheelchair and get about my day with!

Florrie is a bright, extremely active toddler who has this crazy idea that she is a teenager at the age of not even two and a half! She has very strong opinions on most areas of life, not least that of what outfit she is going to wear for each hour of the day!

I'm sure this is ringing true to many mummy (or Daddy readers), but this morning I think I counted no less than five outfit changes before the clock had even struck 9am!

The girl is a whirlwind, a whirlwind I certainly would never have any other way, but a whirlwind none the less! In light of this, I have always made sure where possible that Florrie has plenty to do to wear off her energy and enthusiasm for life.
 Many of my friends would say maybe too much and joke that her social calendar is more hectic than theirs, (it certainly is mine I can assure you!), but despite the dancing, swimming and singing classes and groups, we are still yet to wear her out!

Although this is a running joke amongst my closest friends that as a former dancer and dance teacher myself, only I could have my two year old taking ballet, tap and musical theatre classes and have performed in her first show on stage at just 2 and 3 months- but the truth is firstly that she LOVES it, otherwise she certainly wouldn't be doing it- (she would make sure of that believe me!), but also there is a more serious truth behind all of this- that being that I have always had a fear and insecurity that Florrie would miss out on so much in life because of my disability and restricted mobility and health.

This fear has plagued me and at times consumed me and something I have spent many hours discussing with my pain and rehabilitation psychologist.

There are and have been so many times that with my husband away with work and my condition at it's most troublesome and annoying that I have had no choice but to make Florrie safe in my bed or bedroom and ride out the flare-ups.
This causes me a pain far greater than the physical neurological pain, so when I am able to take her to her classes and social groups I do and with relish as I never know just when we will get struck down again and have to suffer a Mr Tumble day in bed!

Don't know who he is? Think yourself lucky!

What's occurring to me as time passes and her little mind and body grows is that even when I have won against all the odds and got her out to these classes, Florrie is now becoming more and more aware of just how different her Mummy is to that of her friends'.

The most difficult and poignant moment so far came a fortnight ago, on our drive to her music class. We were chatting about her music teacher who she adores and what songs we would be likely to sing that morning.

Quite the chatterbox, Florrie went on to recite how the whole class would go. I smiled to myself as she talked until she came to the bit where they all walk around in a circle and do the dance.

"And you do that too Mummy?"

Choking back the frustration and sadness I went on to explain that- Mummy can't do that bit with you can she?
With a big sigh, my way too wise for her years little lady came back with, "Oh. No, mummy can't do those things as Mummy has silly legs".

Cue heart breaking into pieces into the footwell of my van.

Sure enough when we got to the class, I did the bits that I could sat down with Florrie and like I have done since she started music classes at 4 months old, I then had to pass her over to the teacher whilst they did the marching around and dancing bits.

Yes, all she has ever known is me in my wheelchair getting us about outside the house and mummy on her sticks or stuck in bed sometimes. She takes for granted 'Mummy has a lift' and points out wheelchairs 'like mummy's' (although obviously not as cool as!) with the blink of an eye, and we regularly have squeals of 'faster Mummy' as I take my 12kph wheelchair up to max walking the dog, (don't tell my husband!)- but as time passes and the start of pre-school approaches, I'm acutely aware that this road is getting a little trickier to negotiate.

But what is life without trickiness?

When do we ever truly appreciate what wonders we have until a few obstacles or difficulties remind us to appreciate our lot- and boy, do I have a lot!

I am about to become a mummy to two amazing monkeys I was told it would never be possible for me to have, (make that three- my eldest baby may be 9 years old, have four legs and constantly have an odour of wet dog at this time of year, but ever since the days he so lovingly dedicated to keeping vigil by my bed during my years of rehabilitation as a pup- Barley will also forever remain my baby!)- I am married to my best friend and am surrounded by the most incredible friends and family who have made this undertaking possible.

I know that when I commence my family Christmas traditions tomorrow evening, by sitting in church listening to children singing my favourite carols, I will be lost in that warm fuzzy feeling of having my family around me and that to me is worth every penny in the world and all of the trials and difficult days that have been scattered throughout the year.

After a year such as 2015 has been, I'm all too aware that so many people don't have this and to any of you reading this, my thoughts and prayers are with you all.

Life is certainly not easy for anyone and is sprinkled with more challenging times to remind us to appreciate the wonders.

So on this eve of Christmas Eve and the start of a new chapter for my family I'm taking this hour of quiet time to really focus on all that I have and to thank all of you wonderful friends and family and blog and charity supporters for all of the incredible support you have given me this year.

I wish every one of you a happy and healthy Christmas and New Year and if that is sadly unable to be the case for you, then I wish you peace in your hearts and a 2016 blessed with improved fortune for you.

Much love and best wishes to you all, and no doubt when I write next it will be to inform you of the arrival of another Reader!

Let the fun commence once more!

Monday, 10 August 2015

A Year on...

One year ago today I was laid in a hospital bed trying to digest the news that following my miscarriage they had discovered I had a blood clot on my brain.
I remember so clearly the consultant holding my hand really tightly and being shocked by her emotion in telling me 'I'm so sorry', as I sat there shocked and stunned that I wouldn't be going home as expected, but would instead commence treatment whilst the doctors from the hospital I was in consulted with the specialists from Charing Cross Hospital as to when to perform brain surgery.

My husband and I are not unfamiliar with hospital stays and difficult consultations with doctors after our last 9 years since my car accident, but this one floored us both, not least because we were already mourning the loss of our little baby I had just miscarried, but our cheeky monkey of a baby girl had just turned one a mere week before.
The morning of 9th August last year I wrote a desperate prayer as I laid there in my private room the nurses had so kindly put me in the night before to help my husband and I digest the news.
I remember that morning so vividly, not least because I have been rereading that prayer over this last week.
I remember the mixture of intense fear, shock and a strange gratitude I was feeling that God had put me in this position to make me reassess and value my life.
My accident had had a similar impact on me (once I had worked through the shock and despair and bereavement of losing the life I had once known),  but this was more immediate and intense.

The inevitable 'what ifs' played through my head as the medical staff described the severity of the situation.
After many difficult years following my accident and diagnosis, I had just had the most wonderful year of my life after The Lord had blessed me with my miracle daughter they had thought I'd never be able to have and the thought of not being around to see that gorgeous cheeky monkey of mine grow and develop into a little lady scared the monkeys out of me; but the scary news was also intensified my appreciation of her and all of the other wonderful gifts in my life like my wonderful parents, family, friends and my rock of a husband.
How incredibly lucky I was to have such sparkling gems in my life. After periods of depression and anxiety following my car accident and disability, I suddenly realised that I did indeed have it all.
I had the loving husband and incredibly strong marriage to my best friend, the gorgeous and cheeky little girl I had always dreamt of, who with her incredible thirst for life was already fast turning into a cheeky toddler aged just 12 months and the most incredible group of friends and family surrounding me, many of whom had already brought gifts and light hearted company to help us through our horrid weekend of limbo whilst the doctors assessed the situation.
Those sharing my strong faith joined together in prayer for me and I was literally enveloped in love and support from every direction.
It hit me that my life was complete and truly wonderful in every way and it had taken this news to realise this.
Like so many of us I had been caught up in worrying over the trivial and had not realised the true extent of the beauty surrounding me as I lived in my new mummy haze of sleep deprivation and bewilderment.
This news had woken me up and opened my eyes!
I recall noticing the beauty of the 6am sunshine gleaming against the wall of my hospital room that morning of 9th August and the warmth of the smile of the nurse who I'd become close with over the previous few days, who had been left as floored as I was by the news of my blood clot.
That day as I sat waiting for more news from the doctors, I wrote a message to all of my friends asking for their prayers or positive thoughts. My faith in God is incredibly strong, (even more so since this experience), but I believe whether you share my faith or not that positive thought is a wonderful thing.
Whatever you believe, my prayers were answered and after four days living in a frightening limbo I received the incredible news that the specialists at the brain hospital had reassessed my scans and decided that the 'blob' on my brain was not a blood clot, but a mass they would go on to argue over for the following year.
The main point however was that it was not life threatening as they had first thought.
I returned home to my family with a greater appreciation of my life and all that was in it.

As a result this last year has been one of the most intense and incredible of all of my 32 so far.

For weeks following this scare I was bedridden and was back and forth to the hospital seeing a number of specialists as the illness following my miscarriage had brought to the doctors attention a few others issues going on beneath the surface.
I continued to live with a small question mark above my head as they continued to do a number of scans and tests to determine quite what the 'blob' on my brain was, but finally almost a year following my discharge from hospital the final neurologist determined the blob to not be of any harm.
I would subsequently describe this year as 'very intense indeed'!
For months we lived in that strange limbo until come November the stress of the strain of the situation and it's affect on our priorities left my husband and I turning to the credit card to book our little family on a much needed holiday to see Mickey Mouse!
We savoured every second of that precious family time together as we have continued to do ever since, as we've continued to have tests into the cardiac issue they discovered that has prevented us putting this whole situation completely behind us.
Then in May came the news which added a few complications for the doctors investigating, but brought joy and relief to us as we discovered I was expecting another baby.
As the anniversary of losing our last baby and experiencing one of the biggest scares of our lives so far passes by, we are also fast approaching the half way point of this pregnancy.
There are many other huge changes going on in the lives of The Readers as my husband prepares to leave his service in the RAF and we prepare to leave military life and relocate to a more rural lifestyle and slower pace of life.

I have to admit that these have been an emotional couple of weeks, as we've also marked my miracle monkey Florrie's second birthday, but I now appreciate all of these challenges to have been positives in focusing us as individuals and as a family to savour and love our incredibly lucky and fulfilled lives.
We are all too familiar with the notion that It is so often the most dreadful things in our lives that send us on the path to the most wonderful things.
For me personally I thank God for this, you can obviously thank whoever you like- but I think the important point is to be thankful.
In my prayer book I scribbled so frantically in this day last year I found these words I wrote to my daughter-
"The world may seem so cruel and unfair sometimes, but I believe that if we didn't have any challenges or sad times, we really would be such selfish and ungrateful people".

Now the dust has settled I stand by this sentiment.
Without the drama and fear of a year ago I believe I would not be living my life with the intensity and appreciation that I am today.
For this I am thankful.
I am thankful to still be here living my life with my little family I thought I'd never have, surrounded by the family and friends I adore.
We all know that life's trivial niff naff and worries can easily consume us as we become overwhelmed by the pressures modern life puts upon us, but please learn from my experience that you really don't know what is around the corner, so try your best to savour those seconds.

I am far from perfect and miles away from how I would like to be living my life, in that I still spend too much time on Facebook, I still let little niggles get the better of me and I still like every parent I know find that period of time between dinner time and bedtime utterly exhausting and long for the time that we read 'Sleepy Farm' and 'Mr Sun' goes to bed and 'Mr Moon' comes out, (you readers who are also parents of young children will get my love and appreciation of the Gro clock and it's magical abilities of getting little ones to bed!)- but today I am remembering where I was a year ago and the support that surrounded me when I desperately asked my friends and family for their prayers.
Thank you so much.
They were answered.
I thank God for that and pledge to try my best to live by the lessons this experience has taught me.

Sunday, 17 May 2015

Agh, my toddler has dressed herself and the dog in my underwear & pjs! Where is the time to do it all...or simply just put my laundry pile away!

My hands may well be one of the few parts of me in reasonable working order, but it sure is wonderful to have an extra pair to help me out once in a while!
So in stark contrast to last month's absent Daddy at the RAF surf champs post, this month's Daddy has been super hands on in every aspect of home life, in particular running after my Baby Bolt!

I am extremely lucky to be married to an incredibly supportive and  hands on husband and daddy who relishes every minute he gets to spend with his little lady and thankfully circumstances these last few weeks have meant that he has been able to be at home a little more, which after countless weeks and months spent away from home since Florrie has been born, it has been such a novelty to have him here spending time with us.
I am loving every second, although I must admit it does take a little getting used to!

I am particularly grateful for this extra help right now as my coping tank was beginning to get pretty low.
Chronic pain really can wear you down, not just physically, but when you have relentless pain day and night, it can get the better of you emotionally over time too.

Lately I have found the pain that has been keeping me awake at night has been particularly hard to cope with, as my days have been getting more challenging as Florrie gets cheekier and faster by the day.

My chronic pain and limited mobility mean that some days I just have to lay down
until I can get the pain and spasms back under control. This often means that practical tasks have no choice but to wait in line as I can only physically do so much.
Washing backs up to be put away, but before it is able to be put away, it is often ambushed my a 21month old Tasmanian devil intent on undoing all of my hard work by dressing the dog and or herself in my underwear and pyjamas!, dishwashers are left unemptied and countless other tasks are left half done, as my good intentions are either interrupted by pain, a cheeky toddler or both!

These last few weeks have been a Godsend, as my husband's physical presence has meant that jobs have been done and even completed and we have had a chance to reset.

It's inevitable that things will slip back as his work load increases again, but for now I am enjoying that incredible satisfaction and novelty that comes with completing a task.
I am a natural worrier and my chronic pain psychologist only reminded me last week that I am a dreadful perfectionist and beat myself relentlessly for not ever achieving as much as I set out to do.
She tells me this is because I set out to do too much: maybe she's right, I don't know, maybe I am too
harsh on myself, I constantly feel like I'm failing, she, (pain psychologist) reminds me again it's because I have the same expectations on my life now as I did prior to my accident and it's subsequent affects on my body.
I suppose it would be nice to not feel like I'm constantly failing, sometimes that seems very appealing indeed, but to do that I would have to stop striving to be the best wife and mother I can be to my three crazy monkeys, or set up the charity I believe so much in and I know this is not the answer as these are the things that keep me going and these are the things that mean the most in the world to me.

Maybe I could listen and try and be a little easier on myself, but I think this is something we all do, even more so in our high pressured society where we are all expected to be perfect mums, wives, daughters, friends and colleagues, whilst also being successful in our careers and dedicating ourselves to charity work or fund raising in our 'spare' time.

What is the answer to this modern day dilemma?? I don't have the answers- if I did I'd be writing to millions and selling out stadiums, instead of writing my little blog. I do however know what I am learning through my own journey known as life- and these are very simply that it goes too quickly;
you just don't know what tomorrow will bring and finally and most importantly, that the most valuable things you just
can not buy- the time you cherish with family and hugs from those you love.

I had an unrealistically long 'to do list' of things to achieve whilst my husband was home from work- update the charity's website, catch up on my personal and charity correspondence, continue working in Get a life! Foundation's 'Get Started' campaign and finish our proposals for funding for our projects, all this whilst putting away in storage all of the clothes my monkey has grown out of (these 'small' people certainly grow quickly!), get to the post office to send the parcels I haven't managed to post that are stacking up on my kitchen counter, make the countless calls to the hospitals who provide my treatments that I have to make to manage my condition, read about toddler tantrums and how to cope with them and do all of the niff naff around the house that has been backing up whilst I have juggling the semi-single parent thang whilst my husband has been working away on and off for the last few years.
So I have news- I failed at about 90% of the tasks I set out to achieve.
As I looked around me at the half folded laundry, piled up half written correspondence and unread book on positive discipline of children- I did the most important thing I could have done that week, I sat down, I took fifteen minutes to take stock and I watched my husband charge around the garden with a giggling toddler and merrily barking pooch trailing in his wake.
I felt utter joy.
I felt complete and I felt so incredibly grateful to have what I thought I would never ever be blessed enough to have.
A family.
We may not live in a show home, my clothes may be constantly covered in dog drool, spaghetti bolognaise and crayons, and my goals of creating a charity to provide emotional support for families affected by life changing illnesses and injuries may be taking me just a little longer than I had originally hoped; but I am living an incredibly blessed life, one where those I love are on the whole healthy and happy, so for this I must take stock and say 'thank you God' for all that I have.
I may have to start listening to that psychologist of mine and accept that I may not be ticking off all of my to do list and reflecting back on perfection in all areas, but my intentions are good and my heart is more or less in the right place and I guess that is pretty important I suppose.
Double tick in the box there at least!
The reality is that I am likely to remain a perfectionist and continue wasting time that I could be using to be productive, by beating myself up about wasting time not being productive.
That time is gone.
All I can do is focus on the present.
And right now I choose to learn from the past and apply those lessons to my future.
I will strive to be a little easier on myself if you promise to do the same.
Life flies by too quickly and we should not waste minutes focusing on that which we simply can not change- our past.
Learn from yesterday and apply it's lessons learnt to today.
Wishing you all love and forgiveness to yourselves.
Stay strong and stay happy.

Friday, 8 May 2015

Birthday Beast!

So last week marked The Beast's 4th birthday.
As we celebrate another year on this Earth of ours (as I also do this week- why do the years seem to fly by even faster once you pass 30!), it is only natural to reflect upon what you have or haven't done over the years that are passing by way too quickly!
The Beast has given me so much independence and so much more of a fulfilling life compared to that which I lead before I accepted it, that I honestly don't know how to begin writing my homage to my partner in crime!
As I have mentioned previously in my ramblings, he/she/it has quite literally given me my life back and enabled me to fulfil me dreams of being a mummy-  but that being said, I did fight having to use it for some time as I saw having to use it regularly as losing the fight against my condition.

Thankfully, with a little help from my chronic pain psychologist I came to realise that I didn't need to fight against it at all, but rather accept the reality that my condition was not going away, so finding a way to live with it was the only way to move forward with my life and not be confined to my bed by trying to walk too often and then paying the price with hideous pain and spasms that would leave me bed bound for weeks/months on end.

Although I had had wheelchairs prior to my beauteous Beast, this shiny new speed demon, came complete with off road capabilities, whilst at the same time was slender enough to manoeuvre around shops, bars and restaurants! The wondrous thing even came with snow chains!
It literally opened areas of my old life back up for me, where doors had previously been shut both  metaphorically and literally.
The Beast has been on planes, trains and automobiles, as well as car ferries, fishing boats and London
buses, as well as the few London tube routes which are accessible- (don't get my rage started on this one!)
It's been lifted up restaurant staircases, and down to basement bars and comedy clubs, (not an easy
feet at 100kg without me in it!).
It's been stuck on a beach in the Maldives, and on the Isle of Wight- (both equally as glamourous I may add!), visited The Houses of Parliament, met royalty, stars of Strictly Come Dancing and the London GB teams and even the legendary Mr Kevin McCloud!!     (I love him!)
 It has served as a taxi to drunken friends in need of a lift home on my lap following a night out and doubled as a buggy, a shopping trolley, (my current record for Sainsburys bags on the back still stands at 12!), changing table and high chair.

It has dodged toddlers and tiaras in Disneyworld, been stuck in mud at The Isle of Wight Festival, served as a table for crisps and bar snacks, run over countless toes in crowded bars, torn up the dance floor at many a military ball and wedding (taking out a few more of those toes in the process!) and been smashed into a palm tree by an airline pilot who was out of his tree!
It has enabled me to go to weddings, nights out and concerts I would have previously never been able to go to and enabled me to join my family on treks where previously I would have had to sit in the car.
Most importantly my Beast has enabled me to be a mummy to my Barley and my Florrie.
I wouldn't be able to do so many activities with either of them if it wasn't for the Beast.
It's true, the poor love has seen better days and is looking a little worse for wear nowadays, with side lights, (or disco lights as they are used for on the dance floor at parties!), currently only half working, (in that I ripped one clean off!) and I am still missing the right arm rest and side panel.
The knob to my joystick is missing, (no doubt posted down some drain by my toddler), as are my hubcaps and Garry has just finished replacing my two front tires.
It is more often than not caked in mud, Florrie sticky paw prints and has been known to be splashed with baby food, baby puke and many other bodily fluids you would rather I not mention.
It has been used to hang poo bags on on dog walks and many of you may already know that it is a regular occurrence for me to forget the presence of said poo bags (and their contents!) and then drive my chair into restaurants, supermarkets and even beauty salons! Classy!
My dearest Beast- I love you and I feel so grateful for your presence in my life!
I would not have been physically able to do even a small percentage of these things without you by my side (or under my bum!)
To think I used to see you as a negative, I now see you are just my facility to keep living life at 100mph, (or more accurately 12kmph in optimum conditions!)
I too become another year older tomorrow and although like you my Beast, I am physically a little worse for wear, emotionally I am healthier than I've been in a long time and that is largely thanks to you.
I'm not sure that I could say that I'm becoming wiser with age, but I certainly am becoming more appreciative of the really important things in my incredibly blessed life.
Cheers to The Beast and cheers to you all, my family, friends and incredibly lovely followers to so kindly take so much time to write to me.
Here's to another pretty bloody wonderful year on this Earth!

Sunday, 19 April 2015

Keeping up with Baby Bolt!

And I'm pooped!
So these toddler months are making having a newborn look like a walk in the park- a sleep walk, but a walk none the less.
Walking doesn't seem to happen much in our lives anymore.
If my monkey is not asleep then she is running, running and running some more and generally in completely the wrong direction to where I want/need her to be!
This is slightly problematic when you are incapable of running yourself.
On many occasions this is humorous, but there are times when this frankly scares the poop out of me.
Yes, we have the reins and the cunning backpack to make her think she's got independence, but really she is attached through the bag to a lead like the dog and at times she will sit on my lap or in the push along scooter, but mostly the girl just loves to run!
The other day at a trip to the park with my friend, her toddler and her dog and Florrie and Barley, Florrie's love of running took her on an adventure off the pathway and through the woods after my friend's fun loving Beagle- (Beagle and Florrie have very similar mischievous spirits!).
In hindsight my friend and I considered we perhaps bit off a little more than we could chew as our 'kill two birds with one stone' idea of exercising dogs and toddlers together to ensure an afternoon of naps so that we could both sit at our computers in relative peace and actually get some work done without toddler and pooch interruptions-  seemed a little ambitious.
What should have taken us 20 minutes or so, took us well over an hour, as dogs swam in lakes, toddlers attempted to follow dogs into lakes, toddlers decided to walk, then go on trikes, then swap trikes for each other's trikes before both deciding that my lap was the perfect place to sit in order to complete our 'trek'.
By the time we reached the play park and cafe at the far side of the lake, my friend and I were
ready for a Tanquarey and tonic rather than the modest tea we had to settle for!
My friend kindly insisted we got through the marathon as a team, tag teaming watching out for toddlers and cheeky pooches, but I am well aware of everything that she did for me and Florrie and the workload was far from 50-50!
Running off paths when Florrie went off piste and chasing her when she had tunnel vision running for whatever play activity in the park she had decided she just had to go on that very second- my friend must have been exhausted after our 'relaxing' morning stroll!
My daughter is determined, very cheeky and at times pretty darn mischievous and I can't keep up with her in the way I would love to, so in situations like today I have to rely on good friends to help me out and then I feel that familiar feeling again- GUILT. Only this time it's not only guilt for Florrie that I am not the one chasing after her, but also to the friends who are whizzing around doing the chasing for me.
I hope upon hope that she learns to listen soon- like tomorrow, that would be useful as Garry has gone away this evening for five days with work.
Before you start, don't you dare feel sorry for him.
Having just completed his last operational flying role in the RAF, detachments to sandier climes are thankfully now a thing of the past- this is a taxing work trip to...
Wait for it....
The RAF Surf championships in Cornwall!
Still sandy I suppose, but not quite in the way he has been used to over the last couple of decades, and still apparently military 'duty'!
So that leaves me flying solo with pooch and pickle as the unseasonably warm weather means more trips outdoors, and outdoors means more running!
My friend joked today that in some ways it may be a blessing that I have the chair, as she doesn't think many people could keep up with Florrie on foot, able bodied or not!
I mean it, athletics scouts should come and check her out, we may have a future Olympian on our hands.
Until she matures enough to understand and obey all of the commands I give her, I am going to have to do one of two things, keep her on a tight leash- literally! Or accept help occasionally from others-
something that anyone who knows me knows that I am rubbish at doing.

My husband jokes that I say 'sorry' more than any other person on this earth.
I feel so incredibly bad to see other people having to do things for me, but I am so incredibly blessed to have had some truly wonderful people in my life over the last nine years doing some truly wonderful things.
Accepting people's help is tricky enough at the best of times, but when you are a fiercely independent stubborn old fool like myself, it becomes one of the hardest parts of accepting and living your life
after an illness or injury.
I have lost so many hours awake at night through pain to worrying about having to accept people's help to do everything from shopping to shampooing my hair, and washing myself to walking my dog- and what these friends and family must think of me: whether I was selfish to have Florrie and have to accept even more help from my loved ones and whether they think their relationship with me is unbalanced as there isn't an awful lot I can do for them in return.
You may be getting the gist that this is a real hang up of mine!
This has been one of the hardest emotional obstacles to overcome since my accident and my subsequent issues.
To those who haven't experienced life after illness or injury this may seem a bizarre one- you must surely be thinking that being unable to do certain physical activities you once loved would be far greater issues, but from my many discussions with people who have experienced similar situations to my own I have established that mine is a remarkably common concern.

I have lost friends over the last nine years, many it's true may just have drifted anyway over nearly a decade, and some I believe have been lost either because they could not take the fact I could not give a lot back to them physically or at times even emotionally as a friend, or because I have subconsciously distanced myself as my guilt that they have/would ended up doing too much for me became too great.

For everyone who has ever come to visit me when I have been bed bound, sent me a 'thinking of you'
card, text, email, Facebook post when I have had relapses, run me to a hospital appointments, come to keep me company when Garry has been away with the RAF or retrieved my child or dog for me during one of their little adventures, this is for you- thank you.
I don't think I'll ever be able to thank you all adequately for all that you've done for me.
But this is me once again attempting to articulate my feelings of inadequacy.

I am a big fan of the writings of Joni Eareckson Tada, for those of you who have not heard me rave about her before, Joni is an incredibly inspirational lady who became paralysed at the age of only 17 after a diving accident.
Joni has dedicated the decades since this time to inspiring others to keep a positive outlook on life and live whatever life you have been blessed with to the fullest.

Joni also happens to share the faith which has grown in me and kept me strong through some dark times since my own accident, although interestingly enough, immediately after her own accident her faith was far from there, like many in a position of bereavement or illness or injury, it was rocked and she felt the familiar feelings of bitterness and anger and spent many a night blaming her God.
She has written a daily devotional book I read morning and night to keep me inspired and upbeat and yesterday's insight into her spirit focused on exactly this time in her life when she was angry with God and with life in general and took this frustration out on the friends and family around her.
In my darkest days I have spent way too much time taking things out on my loved ones- you take things out on those closest to you apparently- I'll certainly agree with that theory.
Whether I've told you, or shown you or not please know everyone I am grateful for you all and all of the little things (and big) that you have done to help me keep living my life that I love over the last nine years.
It is perhaps the smallest things that may not seem like anything to you that make the biggest difference to me, like running after my toddler as well as your own so that I can keep taking Florrie out into the outside world and not keep her imprisoned in the home and garden we have worked to adapt to work the best for our family to keep her safe.
To the friend in question who helped me this week and to you all who've helped with the small things and the big- thank you.
Today I'm feeling incredibly thankful for you all, I am so acutely aware that I wouldn't have half the full life that I do today, without accepting your help, whether that has been easy or not. 
You have quite literally given me my life back. 
Big hugs for that.
Now I'm off to bed at the same time as my 20 month old! Zzzzzzzzz

Monday, 13 April 2015

"And Mummy?"… Man, I feel GUILTY!

Along with 'No', 'pooey' and 'Barley, where are you?'- 'and Mummy?' is my 20 month old daughter's favourite phrase right now!
The full Florrie Blossom translation of what 'and Mummy?' really means is 'and Mummy you now do this too...', to whatever task or activity she may be enjoying at that very moment in time.
Mostly 'and Mummy' is said at bath time when she wants me to blow bubbles in the water like she is taught to in her baby swimming classes, (which more often than not results in me getting completely soaking wet and needing my fourth change of clothes of the day, even though it's only about an hour before I'll crawl into bed myself!)- or when I am attempting to get her to eat the now stone cold veggies she has pushed around her plate and mixed to make the most disgusting combination of food she can possibly create and she offers it to me with an irresistible smile and a cute 'and Mummy?'
Masterchef she is not- a little more palete refining before we stick her before Greg and John me thinks!
Hard to say no though when you are trying to encourage her to eat the lovingly prepared organic veggies you know would be so good for her and will end up in the bin or the dog if you don't
embrace the game/command.

Something I'm beginning to discover lately is that my lack of mobility compared to most mummies may begin to become more of an issue than it ever has been so far, as the limitations of my ability to join in with fun physical things becomes more apparent to my little whirlwind.
Yesterday we were walking/wheeling around the field with the dog when Florrie was enjoying running in her wellies through the grass.
She was giggling away as she got faster and faster and faster- the girl can RUN!
We play a game in my vain attempt to keep my rambunctious child out of mischief or harm- we
call it the 'stop game' and it basically involves us saying 'ready, steady go' and then encouraging her to run until we shout 'stop', the game then repeats- you get the general idea!
The thinking behind this is that when we need her to stop in a dangerous situation she will embrace the command as to her it is simply part of a game.
I was doing this on our field walk and Florrie was particularly loving the running part as per usual.
As she giggled wending her way through the grass in this incredible April sunshine, she turned and said those adorable words- 'and mummy?'.
Bam! Out of nowhere I was floored.
How do you explain to a 20month old baby that you can't run with her?
My heart sank and I felt one of my first real pangs of missing out.
So far I've felt most of the things I have had to do differently with my sticks and wheelchair requirements have been practical things like pushing my pram one handed whilst driving my wheelchair one handed whilst balancing shopping basket on my knees, or finding a way to pick my baby up when I haven't been able to bend. One word- dungarees!
I've not felt deprived by having to do things differently; I don't even think of them as different, just simply what we do.

Thankfully my mobility issues haven't prevented me from experiencing the joys of breast feeding, co-sleeping and learning through play with my baby girl- but today did feel different, this wasn't just a practical problem solving task- of course I could thankfully still keep up with her thanks to my electric chair (hugely grateful for this!), but that is not what she wanted and I felt that this experience was the start of a new era of challenges; it was emotionally really tough that I couldn't do something with her that brought her so much joy, she wanted me to experience it too and I couldn't explain to her why I wasn't doing it with her.
This is by no means a 'woe-is-me post', or it is not meant to be at least, as I am so grateful to have my baby at all and enjoy the miracle of being a mummy, but this is rather a realisation of the next stage of challenges.
I'm sure she will get it in time.

She obviously thinks nothing of my wheelchair as it's all she's ever known, so in time I'm sure she will stop asking 'and mummy?' when she wants to run, climb trees and do other adventurous activities.
I think that makes me feel a bit sad, but I will just have to focus on the joy of watching her do them by herself and with her Daddy and friends like I do when I take her to the Baby Ballet classes I loved so dearly myself.

My daughter is an adrenaline junkie like her parents, Daddy is a snowboard loving, surfer who happens to fly planes for a living and Mummy used to travel the world as a Virgin Atalntic trolley dolly and used to pay her rent by prancing around on stage (sounds dodgy- a proper stage I may add, as a professionally trained dancer! Your minds- really!!)
It's probably no surprise then that Florrie has not stopped running since the day she started walking at 10months old; she regularly shouts 'ready, steady, go' and just launches herself from whatever surface she has decided to climb upon and on our recent trip to Disney when she was just 17 months old, she giggled at the rides designed for much, much bigger kids and longed to go on the ones she was too small for!
On our regular trips to the big park she yearns for the big climbing frames and slides built for big kids as my heart sinks as I have to say 'no, not with Mummy- next time when Daddy's here'.

I hope I'm not depriving my daughter. Thankfully daddy is more than willing to climb the big kids climbing frame, mostly because he is one himself!

So I'm learning that parenthood consists of a lot of guilt.
People tell you about this, but as with everything with parenthood, you can't comprehend it until you're there.
When I wrestled with the dilemma of whether it was a selfish thing for me to do to have a child, I naively never thought past the having to take opioids during pregnancy, or whether I'd be able to breast feed on said opioids or whether I'd get my baby enough fresh air as my pain may prevent me from taking her out in her pram everyday: for some unknown reason I never saw past the babyhood.
My baby is growing and with her is that guilt.

On my good days, hours, minutes I try to take her to as many groups, play dates and activities as I physically can as I'm so conscious that on my bad days, it is just her and I, the dog and the cast of that day's Cbeebies programming or as a last resort our old faithful pals of Anna, Elsa and Olav as I may just have to lay there until I can get back on top of my pain.

It appears that parenting does not infact get easier as the sleepless nights become fewer as it appears that guilt and worry disturb your sleep just as much as night feeds!

I'm going to keep doing my best to distract her from that climbing frame, slide, running game even if it does mean resorting to sugar bribery and buying her that ice cream just to distract her attention away- again, something I am really not proud of today and definitely something I feel guilty about-  but at the time when my pain was flaring, my patience waining and my heart sinking that I couldn't take her on the slide as I was at the park solo- it seemed a good idea at the time.

Onto tomorrow, I'm going to attempt to win the battle of sleep vs. pain, and realistic limitations over guilt to stand a fighting chance of keeping up with my Duracell Bunny tomorrow!
Would I have her any other way? Not on your life!
Would I swap today with all of its challenges for an all expenses fortnight in the Maldives complete with personal butler and cocktails on tap? Not on your nelly... although if anyone's offering to have both... I'll bite your bloody arm off!
And so to start dinner, bath and my long awaited bed....
Mmmmm Maldives! Zzzzzzzzzzz

Tuesday, 7 April 2015

A New Start

Crikey...  where to start?
After so long since writing, it feels hard to know quite where to begin, which I have to confess has delayed posting even further, as rather than just writing whatever comes to the forefront of my jumbled little mind, I have felt pressure to write something of significant worth whilst also questioning, 'who is it that I am writing for with this blog nowadays?'
When I started this blog it was at a time of great confusion in my life, I was feeling lost for a purpose after having to spend months in bed following my spinal surgery and having just been given my diagnosis of Arachnoiditis to explain my crippling neurological pain.
It was a cathartic process of expressing pent up feelings about missing my more mobile former life as cabin crew for Virgin Atlantic and as a professional dancer and teacher. I never thought anyone would read my ramblings, so I did find the blog evolving as I began to receive unprecedented attention from press sources after readers who could relate to my situation sought me out and began to spread the word.
It was here that I think I began to become confused about why I was writing, or more accurately who I was writing for.
I felt a strong responsibility to speak to those people who were where I had been earlier in my rehabilitation; who were stuck in that difficult transition between mourning their old lives they had once taken for granted and trying to find a new way of looking forward to the future.
It was at this point that the charity Get a Life! Foundation
was born and those interested in our quest to provide tailored emotional support for those affected by life changing illnesses or injuries would write to my via this blog wanting to learn more about my story.
I can see now that I had begun trying to wear too many hats, by answering those questions and trying to share tools, books and sources I had found inspiring on my journey to those who had found the blog as they were in a similar position.
There then came along those interested in my venture into parenthood with a disability after I gave birth to my daughter in the summer of 2013 and all of a sudden the reader numbers were just huge and subsequently the pressure to please all of these people with each post meant I was spending more time
procrastinating and evaluating whether all bases had been
covered, that I found myself losing what blogging should be about.
After an enforced period of regrettable absence I am choosing to make a conscious effort to be more free in my writing after this absence prompted many readers to get in touch and tell me just how much they have missed hearing about what is going on in my crazy little world of daft dog, mischievous munchkin, long suffering, (albeit, bonkers himself husband!) and of course hilarious and often embarrassing capers in 'The Beast', my much loved/abused off-road wheelchair, which has enabled me to do so many things I would never have been able to do without it.

It is this concept that I have struggled with the most- mine is not an extraordinary life so why on earth do people want to hear about it?
Regardless of my bewilderment of this, you are writing to me asking for more, so I am trying
 my best to deliver.
I guess that the blogs and books that I read myself are also about the simple things in people's lives that I too can relate to.
It is with all of this that I start what I hope to be a new phase in the blog- one where I write with

more abandonment and hopefully more regularity.
A large part of me also wants to rename the blog which was named 'Discover Disability' at a time when I was having to accept that disability would be in my life. It was an attempt to try to accept and embrace my new world: now however whenever I log in to write, I'm also jolted by the 'disability' word, as now I don't think of my life as a disabled one, just simply my life which consists of the the normal, mundane and often embarrassing anecdotes of mishaps with dogs and babies and yes I suppose the added frustration/entertainment of unruly a wheelchairs causing havoc!

It just happens to be that I use sticks and a wheelchair in my life and that I can't go running in puddles with my toddler and dog, so I whizz past them and splash them in my chair instead.
The chair is no longer the enormous emotional obstacle that it once was. As I've mentioned many times before, I fought and delayed living my life again to the full for so long, as I once thought of using the chair as a step backwards and a weakness; half a decade on and the true value of my faithful friend 'The Beast' is certainly now appreciated.
Accepting and using the chair has quite literally enabled me to be a mum, it has enabled me to go on adventures with my husband and friends without being bedridden for months afterwards and it has enabled me to achieve more in my day to day life.
I'd go as far as to say it has given me a life that wasn't possible before it.
My back does not enable  me to use a self-propelled wheelchair and life pre- "The Beast' was mostly spent in bed as anything I do
physically I seem to pay for with great pain.
Using the chair has meant breaking the 'boom and bust' pattern that my pain clinic psychologist educated me about. That psychological help, combined with the chair have quite literally given me a life again, a life that is different, but with the added joy of my daughter, (who also would not haven been possible without the chair), it is a life that I simply adore and treasure every day.

At five years old my chair has now seen better days. After our last long haul flight it lost its walking stick holder  and now uses a bungee cord to keep them in place and more recently it lost an arm after I reached for something in a supermarket and it bent and never went back! It is one headlight down and is more often than not caked in mud and food and whatever else my darling daughter chooses to smear all over it that day, as I take it on off road adventures with my dog and my daughter, much to my husband's dismay!
Happy birthday dear 'Beast', my trusty steed.
I plan to mark such a celebration by upholding my promise to write more and share more of our escapades on here and the Facebook and Twitter pages related to this blog.
Many thanks to all of you for not only reading the blog, but for all of you who have shared it with friends and most importantly writing to me with support and tales of your own.
As always I wish you a wonderful day.
Treasure it, this life is so special.
God bless and see you very soon I promise,
Kaz. X