Preparing for the future

Like everyone else on planet earth, I’m a little obsessive. I obsess in the middle of the night, whilst driving, whilst having conversations with boring people (the glazed over look is not because I'm stupid. Honest) even while I’m reading books (because I am woman therefore I can multi-task with the best of them). The thing that's always at the front of my mind is the future. That sainted place full of hope and possibility where anything can happen. Full of excitement and fantasy... Michael Bublee leaving his wife to set up home in a nudist colony with me, Channing Tatum realising that I am the XL to his Magic Mike... you get the picture.

            But when you have a disabled child, the picture becomes different. Suddenly, you won't have those free twilight years to go travelling around the world on a luxury yatch with Chris Hemsworth because you'll still be a full time parent to a disabled adult. And that can be a bit tricky.

            Suddenly, dying is even more terrifying that it was before. Because now you'll be leaving behind someone who needs you. Thus the panic ensues. And, briefly, you have to give way to that panic. Because this isn't what you were expecting. Everyone starts their working lives looking forward to finishing their working lives. Your job will not stop until the day you cease this mortal coil. So it's a total world rocker, a life changer.

            When were diagnosed, I panicked. And I cried a bit. Then I felt sorry- both for myself and for Georgie- poor kid, having to be with me for the rest of my days. Then I prayed- I prayed that we'd get that far. That she would live a long life. And then I got some perspective and made some major changes. Here, in a nutshell, is the list of my ‘I need to live until I’m one hundred and fifty-three’ actions:

• I switched to a whole foods- plant based diet. Yep, you read me right gang, I went vegan. After reading loads and loads on the Internet (which we all know is the most reliable source of information ever), I decided that, if I need to live forever, vegan is the way to go. Because I have a slightly excitable, some (my husband) might say obsessive, I am also in the process of ditching anything toxic that comes into contact with my body- I have fennel toothpaste (enough said), rose water shower gel (smells lovely but is totally rubbish at cleaning) and non-toxic aloe vera deodorant. The overall picture is a treat isn't it. Although I'm not sure I'm free of toxins, I am free of friends. No-body wants to sit next to me at church. But hey ho, this gives me even more time to spend on my second obsession...
• I run. A lot more than I used to. On a serious note, running is my therapy. I spent 18 months on anti-depressants for post-natal depression after Georgie was born. The only reason I was able to come off them was because of the running. As well as being great for my body, it's amazing for clearing my (already pretty vacuous) mind... it also allows me to entertain George Clooney on a private jet... I haven't got rid of all my fantasies.
• I abstain: From drink. From cigarettes. From sugar. From caffeine. Because I may be slightly obsessive, I have been addicted to most of these things at some point in my life. I smoked for fifteen years and always drank to get drunk. But the hardest on to give up (and still is, I have my weak days) is the sugar. Man, it's got a hold of me unlike anything else. That one is a work in progress, watch this space...

So that's it. I know what you're thinking, 'wow, Kelly has the coolest, most exciting life ever. I wish I could be just like her.' Well kids, you're in luck... no, not really. It's not the life of a normal person. But then I've never been normal, Georgie or no Georgie.

      My doctor says it's a control thing. That because I cannot control Georgie's symptoms, I micro-manage my health. And maybe she's right. It does make me feel better- physically and mentally. I'm stronger, leaner and healthier than I've ever been. Georgie is my motivation: I have to be strong for her. I have to live a long time and be able to care for her. I don't see it as a burden, I see it as a challenge.

      And as for futurising? Now when I look into the future, I imagine me running a marathon (looking really svelte of course) whilst eating a chickpea burger and there, at the finish line, is gorgeous Georgie and, pushing her wheelchair is Channing Tatum... well, a girl can dream.

           

Fundraising January update

This January we have raised… (drum-roll please)…. (tension builds)… (come on, get on with it)… £1265. Yep, you read it correctly, one thousand, two hundred and sixty five pounds… and we haven’t even done any major events yet. Hallelujah. Praise the Lord.

How amazing. Our friends and family have been so generous but even more astounding is the generosity of strangers. People who have not met lovely Georgie and do not know our family yet have felt moved to donate their hard earned cash to her. In a world filled with negativity and horrible news stories, I feel up-lifted by these remarkable people. Not only have they helped our family, they have also helped restore my faith in humanity.

So, to everyone who donates anything anywhere… I salute you!

‘My time?’ Yeah baby!

Did I happen to mention that I’m running a half marathon to raise money for Georgie’s eye-gaze machine? Yes? I read the other day that people who choose to run for charity are a teensy bit selfish since really, they gain loads just by doing the training. They should try telling me that when I’m 3 miles into a 7 mile training run, up-hill and it’s snowing… again. Really though, I do think they might be onto something.

Having kids is blooming hard work. In fact, when my older two were little, I used to look forward to going to my actual paying job for a rest. At least I could have a wee in peace and I had a whole, luxurious hour for lunch. I could stalk old school chums on Facebook, read the latest cheesy chick-lit paper back, find a park bench for a little nap… you know, all the important things. It made me feel like an actual person rather than just ‘Mackenzie/Gabby’s Mum.’

Now I don’t do actual payed work and it’s really easy, especially between hospital visits and very serious conversations about Rett Syndrome, to just be ‘Georgie’s Mum.’ Don’t get me wrong- I love the title. But sometimes I quite like to be Kelly. And that’s where running comes in.

I can’t think of anything when I run (apart from lycra chafe, trying to avoid standing in dog pooh and worrying that my bottom looks mega wobbly from the back) so it really is time out. I hate the phrase ‘me time’ but yeah, it’s my time. My time to try not to swear or die when running up-hill. My time to listen to really cheesy music on my i-pod without the kids moaning that ‘it’s just sooo nineties Mum, get a grip.’

Now my husband, who is definitely Not A Runner, used to moan about me disappearing off for hours on end to run but now I’m raising money for Georgie he can’t. Bonus! So perhaps it is just a little selfish to choose to raise money this way but I know my wobbly bottom and my sanity will thank me for it one day!

L is for Laaaazy… it’s also for ‘Look at that WEATHER!’

According to my diary, this week I should have run three times for 30 minutes in order to build up to the BIG one, the 3 mile mountain crawl/ hobble/ wince tomorrow. However, dear readers, I’m still at zero miles. And now it’s only 17 weeks until the half marathon. My best friend, who is definitely NOT a runner, logged over 40 miles in walks and runs last week. The shame!

So what happened? Was I abducted by aliens? Did the lycra squeeze my wobbly bits so much that I developed a blood clot (a serious worry)? Did my beautiful ‘hat with the holes’ (for ventilation purposes obviously) disappear? No. It snowed. Not just a little bit of snow, more ‘Quick look out of the window,’ snow. And with snow comes ice. And ice is the runner’s worst enemy. 

So, in a bid to be productive in my fund raising, here I sit. In a moment I am going to write to lots of local businesses and ask if they can donate prizes for an auction we are having in the Autumn. Really, I am.

I did manage to achieve something running related this week- by far the most important something actually… I created a playlist on my phone. See, really important. At some point I should really try my lyrca on- but I’m saving that visual treat for a super special occasion, like when it’s Children in Need and I’ve spent the whole night crying anyway so what’s a few more tears.

As always, I digress.

If you learn anything from this post lovely people out there, it’s this- don’t read your diary. Oh, and don’t plan to start your half marathon training in January in the mountains of Yorkshire.

O is for ‘Oh, that fundraising thing we’re doing!’

It’s quite unusual to come across anyone who knows what Rett is. One in every ten thousand girls will get Rett, which makes it the second most common disability in girls after Downs. But had you ever heard of it? I thought not.

Most Rett girls have a mutation on one of their chromosomes but not Georgie, oh no, hers is entirely absent. It was probably watching My Little Pony the day it was called to action and so never quite arrived. This tiny little building block- or its absence- causes all kinds of excitement… the biggest one being that Georgie has no verbal language skills and, unfortunately, she can’t control her hands enough to use sign language. As you might imagine, this can cause issues- she can’t tell us if she’s in pain, or if she’s about to have a seizure or if she needs the loo… she also can’t tell us to move out of the way of the television because her favourite program is on and she’d actually quite like to watch it in peace.

And that’s where the eye-gaze technology comes in, and, ‘Oh, that fundraising thing we’re doing.’ Because it will actually revolutionise her life to be able to say ‘I don’t want to listen to you chirping on Mum, I want to listen to the radio,’ and, importantly, ‘I’m not wearing that AGAIN. Pink is so not my colour.’ So on January 1^st I re-joined the world of social media – after having been away for 2 years- (it was the photographs of food that set me over the edge- who wants to see what someone else is having for breakfast?!!) – I am back in the world of twitter and facebook and blah, blah, blah. Only for Georgie would I do this… I’ve already seen four different pictures of people’s food, I may cry if I see any more.

So far, we’ve managed to get our story in the Telegraph and Argus, the dizzying heights of the Keighley News and tomorrow I am going on Christian radio to share our story. We have also raised over £300 on our JustGiving page- Thank God. And so our little lovely lady may just become a local celebrity- I only hope that her first eye-gaze phrase is not, ‘Daaarlings… I need my own agent!’

L is for Late… and never to be on time again… EVER!

Ask anyone that knows me and they will (probably) tell you that, before I had children, I was an extremely punctual (ahem) person. I never, ever left my best friend waiting outside the pub in the snow while I deliberated which colour Kangol hat I should wear (thank you nineties) or was an hour and a half late to work because I couldn’t find my house keys (four times). No. I was extremely punctual.

Then I had children. Let me run you through a common scenario in our house: me to husband night before, “We’ll have to get up early in the morning: you feed Georgie her pureed porridge and I’ll feed the baby.” Husband to me, “Ok love.” Cut to the actual scene at 7 am when we’ve had about twenty minutes sleep because Georgie was partying the night away with her My Little Ponies, “AAAAHHHH. We should have got up forty minutes ago! Quick, get the kids up.” At this point our little cherubs- who have been awake most of the night- are sound asleep and DO NOT take kindly to being awoken. Tough luck!

Because of Georgie’s Rett Syndrome, she has an extremely poor swallow and is at risk of aspirating and contracting pneumonia. This means that she still eats pureed food and has to be fed… slowly. Unless of course she’s eating chocolate puddings, then she can eat very quickly (whilst smiling and laughing. It’s amazing really, she’s never choked on pudding). It’s fair to say Georgie doesn’t like breakfast. During the holidays, we leave her a couple of hours before breakfast and she’s usually pretty good then- she’ll comply and we have an event free meal BUT, at 7am on a cold January morning when she’s been rudely awoken, you’ve no chance!

Thirty minutes I spent this morning trying to get her to eat Ready Brek. Thirty minutes! In the end, she ate a Peppa Pig yoghurt and a fruit pot. Raph managed breast milk which he then vomited all down his snow-suit (under which he was still wearing his pyjamas- don’t judge me). At 8.40, I was throwing children into the car like an Olympic shot-putter and barking orders at my ten year old like a Sergeant Major… “Grab the nappies. No, not those ones, they’re too small… Grab the emergency granola bars/ chocolates/ smoothies (milkshakes)…” You know the drill. At this point, already late for school, Georgie started to have a break-down so Gabby put on her favourite song- Juicy Wiggle- which is so loud it makes me want to rip my own ears off.

Fifty minutes later, Georgie and Gabby deposited at their respective schools, Raphael and I fell, exhausted, through the front door.

Living the dream lovely readers, living the dream x

The First Blog is the Hardest…

… it’s true. A great blog will grip you, have you reaching for that all important ‘Follow’ button and keep you as part of our community forever. A rubbish opening will make you click the next button faster than a speeding bullet and, before you know it, you’ll be reading about Naked Nordic Fishing… hang on, I quite fancy that myself!

I digress (something you’ll get used to- I promise). This blog is all about my family- that’s me, my long-suffering husband Nigel, my eldest son Mackenzie who is 16, our 10 year old daughter Gabby, Georgie who is 4 and disabled and, finally, Raphael who is 8 months old and blissfully unaware of all the crazy! Oh, and because life isn’t busy enough, we have two dogs called Minnie and Pepper. Sounds fun huh? This year we are trying to raise the princely sum of £10,00 for an eye-gaze machine for Georgie so that she can communicate. 

I’ve toyed with writing this blog ever since Georgie was diagnosed with Rett Syndrome two years ago but, quite frankly, I haven’t known what to write. Having a disabled child is hard. There, I said it. It’s also amazing: it brings you into contact with people you would never ordinarily meet and makes you do things you’d never normally do. I’m so far out of my comfort zone raising money for Georgie’s eye gaze machine that I might as well be on the Moon. It can even bring you closer to God- because needing to make sense of the world is suddenly extremely important.

I am grateful for Georgie every day and, through this blog, I hope to explain why.

What’s your story? Have you also got a remarkable special child? Have you had a life changing experience? Or would you just like to tell us something about yourself? Please comment below.