85,000 Times

My life is different to yours….  Not in a weirdo-give-me-sympathy-way, but as 'matter of fact' statement.

So, I hear you say, "What makes your life different?"

Well… for instance.  My life was once like yours, where you are able to plan things, to go out and experience 'normal' life.  Even basic things, such as going to an appointment for yourself.

I have two daughters, which require equal levels of attention.  Luckily Daisy doesn't mind that we cannot ever plan anything, and I don't mean, a normal day out for Meg.  I mean a normal day for Daisy.

Can you imagine not being able to organise anything, because you have a 90% chance of calling it off? 

This puts pressure on poor Meg, who I know for a fact is conscious about not being able to do anything, but on another level, is too poorly to do anything about it.  However, we are so lucky as a family to have two very considerate girls, who without question, take each other needs into account.

It is never an issue for one or the other, if we have to cancel things.  It is just a way of life.  I wonder how many other teenagers, or twelve year olds would tolerate that. In fact, I wonder how many adults would tolerate that….

It is a very important factor in our family, that nobody ever feels like they are a burden - whatever the situation.  Work carries on, and we fit everything around it (even if it does feel like we are about to explode with the insurmountable and epic task to be undertaken).  School life resumes as normal, and everyone helps each other when the S*** hits the fan.

We often spend so much of our lives racing about between work and home, shopping, extra curricular activities etc.  I did this with the hope that my girls could grow up to be young responsible adults and have a good future of their own.

In the back of our minds, we worry about illness, but we all live our lives knowing that severe illness in children is a rare phenomenon that MAY happen, but probably WILL NOT.  Besides the colds, sniffles, tummy ages and the occasional minor accidents that kids always seem to get into, we expect them to come out fine.  Why should they not grow up healthy?  It can't possibly happen to us!

I cannot remember the last time that Craig and I had an evening to ourselves?  I cannot remember the last time that I had more than 2 hours a week without a dependent needing a high level of care?  And this is where I can hear myself asking?  " Is this normal?'

For us, normal is getting medication ready first thing.  A concoction of tablets assembled, with something to eat and a lot of fluid, so Meg can at least lift her head of the pillow (for the last three weeks, she has managed to do this 4 times).  Daisy also needs some assistance in her normal routine.  I need to get myself ready for work.  Craig also needs to run the business.

How I am not "Zola Budd" is a miracle…. I must run up and down the stairs on Megs bad day, at least 85,000 times - checking she's not sick, giving her regular medication, which on these days, is usually hourly, in-between sorting out sick-bowls (side effect from over draining), helping her out of bed and carrying her to the toilet, washing her, putting her back into bed, making her comfortable, giving her plenty of fluids, and making her food that is palatable and if we're lucky, manages to stay down. Working, answering the phone to about 85,000 (not an exaggeration, which I know you'll all agree - on cold-calling, most of which are silent!!!!!) Taking the dog out for a walk, food shopping, cooking, working some more, washing, ironing, changing the bed because she has been sick, getting some more medication, ringing the Dr's who in turn ask me if I can ring the hospital, but because she is in 'transition' (which usually means, "….she's no longer a child, but not quite an adult, so we can't do anything of any use for at least 85,000 years, so if you could just ring around for at least 4 days then that's great…."), finally, some 'smart Alec' then decides she has to go into the nearest A & E unit (joy of joys), and she has to go through the usual 'shunt series' which is MRI or CT Scan to make sure the Shunt hasn't broken or become dislodged, however -  you can't tell if it's over draining or under draining, or if it's fractured, or what level of CSF fluid is going on.  That of course can only be discovered under the knife.  This can take a 85,000 hours to sort out, in-between dealing with Daisy, animal care out and the usual family/work life…….

There is a VERY fine line in being able to get Megs CSF fluid levels balanced.  I always say her shunt is a bit like putting a very basic plumbing system in a complex bathroom.  It doesn't suit everyone, and is not a cure, purely maintenance.  This has taken not only Meg, but all of us as a family a long old time to accept.  Even our friends cannot understand how she isn't 'cured' after her first surgery……

Craig, Daisy and I now understand that this is just how our lives are going to be from now on.  Meg has taken some time to adjust, and the wheelchair (bashing my knuckles 85,000 times getting it in and out the bloody car) and my biceps are now part of everyday living.  Somedays she needs it, and somedays she doesn't.  

We have made some very real friends along our journey and in our time spent on the Neurosurgery Ward in Birmingham.  Meg has two very special friends, Jack and Millie, who she has spent a lot of time with in hospital over the last year.  Each understand the 'pain' and 'crap days' that come with a shunt, and although they all live all over the country, the connection they share, can only be described as the same as if they were triplets.  

I cannot begin to explain what it's like to have been in such close proximity within a Neurosurgery ward for such a long time.  This isn't only because it is such a complex area, but mainly because those that lives are 'normal' simply wouldn't get it - thus only fuelling my frustrations in having to re-explain 85,000 times again that it isn't as simple as 'getting something fixed' - and also IT ISN'T GOING TO GO AWAY!

Some people get it, some people don't.  I can't be bothered anymore after 85,000 years of repeating myself, that no, she isn't going to grow anymore, no, her headaches haven't gone yet and no, a trip to Alton Towers isn't possibly the best day out she'll ever have.

I am concerned that I sound like I'm having a mental breakdown…..but I can assure you I'm not.  Am I ranting? No.  I am just being honest in telling you my life isn't 'normal'.  

And for the 85,000 time, WTF is 'normal' anyway?

Food Glorious Food!

I can be swayed by very few things, however, the power of food has me completely in it's unctuous grasp.

I can get very serious food envy, in fact, as a family, we ALL suffer from food envy, this is not helpful if we go out for a meal, as someone will be seriously miffed at the sight and taste of another persons choice.  Leona gets food envy at crisp mint chocolate sticks (especially when I am cramming them in side wards, looking like Wallace and Grommit - trying to suppress my chocolate mint craving.....), Craig gets crisp and biscuit envy, even when Florrie (the dog) has hers...., Daisy is a cheese freak, and will only have to think about feta before she is pacing and begging for me to let her open the new packet in the fridge to have with her meal, whatever it may be...  Both Meg and Craig suffer from chocolate envy.  He would steal it from the children, for which I can not say a blooming word about as I have been known to stoop as low as emptying Daisy's rubbish sherbet sticks, just to get a sugar fix……. How I never fell into a diabetic coma from the amount of sweets I consume, especially when Meg's in hospital is a miracle.

My love affair with food, started when I was 16 and after another fall-out with my parents, I left home.  I had no job. No where to live and absolutely no idea what I should do next.  My pride made me determined that I would become independent and so I had many jobs over the next few years to keep me fed and a roof over my head.

One of my favourites was working for MacDonalds! Now before you 'pooh pooh' this, just remember, I wasn't as daft as I looked...(ok, so after my initiation process where they made me 'dry' the shredded lettuce under the hand-dryer, cue lettuce-shredded-kitchen-storm and locked me in the freezer, and held me over the griddle by the seat of my flares and neck, all of which I took with hilarity and a good wallop to those who dished it out- I was accepted and held in quite high esteem!) Here was a regular paid job, with superb prospects if I wished to pursue it.  I worked with a young team, who were all great fun, and actually looked out for each other.  I was walked home by other members of staff if working late. And yep, you guessed it, I was given a 'meal' on every shift.  It was hard work, so what?! I worked my way up the ladder and ended up as Training Squad, regularly travelling to Oxford, Birmingham, London to train other staff up.  It was great. And if it taught me anything, it was never to take food for granted.  I had four days of not eating anything before I took the job at MD.  That level of hunger takes you to another plane.....  And even Craig is aware that when the children have left home at some point, I WILL definitely work in a soup kitchen for a period of time.  When my kids waste food, and sometimes aren't quite aware of where we as parents started from, I always play the "you have no idea what your father and I had to go through to get where we are today, so you don't have to....." card. For me, they know I'm really mad if I say it.

I remember being so excited when we were first married at buying our first lamb joint.... I roasted it to perfection, with all the trimmings.  So pleased with my culinary skill, I watched Craig savour every last mouthful.

"So then, did you like it?" I enthused...
"Yeah" he said nonchalantly
"What do you mean...... 'Yeah'" I asked in amazement - how could he be so unenthusiastic?
"It was nice!" He said
"NICE! NICE!" I said, "What was it then?"
"The wing Of course!"

It was at this point, that I realised I would have to educate him in the art of food, and I can honestly say, he has never made that mistake again......

Otherwise I would have to barbecue him - complete with sticky marinade.

I HEART MY SISTER...

Family is a funny thing.... You can't choose them. You almost 'get what you're given' without a 30 day money back guarantee, Or a 28 day trial.... Obviously I chose my husband, our children were given to us, and both sides came with non-refundable family.

I love all children, whether they are immediate family or not, and whether my decisions that I made in the past were right, I can absolutely stand with my hand on my heart and say which ever course we took, it was always in the child's best interests and not that of selfish adults.

Take my sister, Leona for example..... We have an unspoken bond and loyalty towards each other.  I would fight to the death for her. Is it because she is 15 years younger than me, or just because that's what siblings do?

I probably annoy her to the point of wanting to dispose of my body at the quarry, but what stops her? Where does that tolerance ability come from? We can laugh hysterically together over THE most in appropriate situations, and both of us know that we shall still be giggling about it days later.... I can rely on her like no-one else! Treat her daughter as if she was my own (poor thing) and we have the same expectations - none. We have the same sick sense of humour. Do all siblings have the same relationship? I don't think so.  Some People certainly don't quite know how to take us.

When GF was in hospital, we often crossed over at visiting times, or went together. The lady in the bed opposite was visited twice a day by her only daughter.  It struck me how lonely I would be without Leona (yes, I know I have Dave, but we all know that is DEFINATELY not the same), there is just something 'attached' with a female sibling.  We don't always agree over everything we discuss, but both our instincts are of good intention.

Sometime family fall to the wayside, for whatever reason.  I make an effort that this will never happen to us.  For a start, I tell my daughters and all 3 nieces how beautiful and proud of them I am.  I hope that my family unit feel I would support and stand by them which ever choice they would make (I do tell them this, in fairness I probably smother them), but it is so important for me, that I treat everyone the same.  Even though they are at different stages in their busy lives, they all know that they are treated equally.

There is nothing more disappointing and saddening by a sibling who knows they aren't wanted by a parent.  At least -  if you have a great relationship with your sister (or brother), or wife/husband, that grief is lessened in an instant.  My biggest bug bear is unfairly distributed love/affection and time between families.  I cannot understand how you can openly show favouritism within the family unit.

I was moved to tears at both her and Meg's personal readings at GF's funeral ceremony.  I was not swayed towards Meg's because she is my daughter, or Leona's because she was my sister.  Both had equal parts of my broken heart that day, and the pride felt was insurmountable.

Granny was a twin (she was one of ten siblings!).  She died less than a week after GF.  The night before Aunt Jean Died, it was reported that she said, "Hetty sat in that chair all night and never said a word!"  Even in death, that sisterly bond is there…..

Watch out Leona, I could be coming back for you when I pop my cloggs..... And I know for a fact, she'd say, " If you were dead and came back for me, I'd kill myself!"