Downsizing

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These past few weeks I’ve been quietly contemplating the future.

2015 is going to be a pretty MASSIVE year here, so big that I’m contemplating it 9 months in advance and I’m preparing myself for it.

The things that are taking place,

Paige turns 18!

Imogen turns 16!

Imogen leaves school.

Kyle starts secondary school!

Ben (my youngest and last baby) starts school!

I have made the decision that Paige will remain living with us & fate willing I’ll be looking after her well in to my old age. Paige’s mental capacity testing will start this year via social services and they will decide what they think she can and can’t be responsible for.

Imogen will be taking her GCSE’s with a view to going on to do A-Levels.

Kyle will be leaving the security of his very small primary and heading in to a secondary school, making his own way to and from.

Ben, he’ll just be starting school and his years in education.

Me…it will be the first time in 16 years that I’ll not have a toddler at home with me everyday, I can’t quite believe it. I actually find the prospect quite sad and very scary. It will be a new way of life for me, some things will be much easier, making phone calls and getting things done around the house. In other way’s it will be very sad, no little person tearing round the house, drawing me pictures, building me towers, giggling and cuddling up to me on the sofa to watch some Peter Rabbit. This has been my whole way of life for 16 years now.

In those years I’ve dealt with my daughter’s disability increasing in severity, nursing her after some pretty hefty surgeries, I’ve dealt with one of my sons being diagnosed with several disabilities of his own and fought to get him all the right support. I’ve studied Counselling & Psychotherapy for 3 years, I’ve worked for Home Start as a family visitor, I’ve helped set up and run a Charity that I’ve chaired for 2 years now.

People have asked me what I will do when my youngest starts school, given he is my last, I think many people think I’ll wonder what to do with myself and some have asked if I’ve any grand plans on the horizon, like finally getting a job maybe?

The fact is though I will have the same care package for Paige as I do now and it’s not enough hours to allow me to even work part time (I have been able to do voluntary because I could choose my hours, work evenings and work from home). Paige’s health is not improving, she has good days and bad days and this is and will be the status quo. She can’t sit in her wheelchair for any more than 40 minutes and even that is a push and requires pain relief and heat pads and her skin remains vulnerable to sores and breaking. Her bowels require daily management too (and she is doubly incontinent). She has a lot of health needs and her dependence will only increase, not decrease with time. I also have Owen, who will also always remain dependent. So unlike many other parent’s who have children who will grow in independence as they get older I have 2 that will always remain very dependent on me. People ALWAYS forget this, especially when they talk about me and Graham being able to take holidays or travel etc in our old age. It will also always affect the type of home we live in and that we’ll always require someone coming in to our home to help with my daughter’s care everyday or other day too.

Ben starting school will mean that maybe me and Paige can have a few more short trips out each week (just to the shop round the corner and back) with out me worrying about a toddler running of or having a tantrum. That kind of thing is hard to deal with when both your hands are tied pushing a wheelchair…and not just a ‘normal’ wheelchair, Paige’s is more of a bed on wheels, it’s BIG.

So other than that what are my plans? Well, I’m planning on not planning. I’m planning on just being Mum. I’ve enjoyed everything I’ve achieved and it has helped my esteem to know that I’ve been able to do the stuff I have, it hasn’t been easy. Last year trying to continue with the charity when I came so close to losing my daughter was hard. I had to get my son a place in a special secondary school cross county, potty train my youngest and more. It was tough.

Recently there were some things I contemplated taking on for next year and starting this year but I questioned my motives. I was wanting to continue achieving but really just so I felt I could hold my head up high and say to other’s that I wasn’t just staying home being a Mum. So I could feel proud of myself. What I need now though isn’t to feel proud of myself, what I need to do now is things for myself and for my family.

I need to get through my driving test, I need to lose some of this excess weight I’m carrying. I want to get our home in order and maintain it properly. I want to spend some time in the garden and prepping things for our allotment. I want to enjoy cooking again. I want to learn to use my decent camera. I want to spend quality time with the kids, big and small. I want to enjoy time with my eldest being both her Mum and her carer. These are BIG things for me, because, they are for me and I don’t feel selfish, I feel relieved. I feel like I’ve spent years at a running pace, world book day costumes bought the day before world book day, school projects only started in the last 4 days of the holidays, dinners made out of ‘if it’s’ (if it’s in the cupboard, freezer or fridge) rather than meal planning. I am looking forward to just some brisk walking rather than running and I care not one jot about what anyone might think or say about me ‘just being a Mum’. I am looking forward to it, it will be a privilege to be able to stay home to care for my daughter and give myself to my family and my home that bit more. I have spent many years feeling upset that I’ve not been able to be and achieve all that I’d have wished, I had so wanted a career. This is a new perspective for me now and rather than seeing only negatives I am seeing the positives and looking ahead positively :-)

In the meantime I am cherishing this last year before Ben starts school, the house is sliding a bit in favor of sitting reading to him etc because I know the time is coming when there will be some time for the house and the garden and it’s really not far at all now! Then I shall enjoy preparing nice meals for the children and my husband coming home, long lunches with Paige and afternoons in the garden filling my cold frames to over flowing with plants for the garden and allotment. I sound like I’m going all 1950′s housewife I know, but not quite ;-) It’s a big life change ahead but I’m looking forward to making it a good one :-)

 

Ben’s Big Day Out

We had the very rare opportunity of a day out with just our youngest recently, so we headed of to Paulton’s Park and Peppa Pig World. I haven’t much chance to type so I’ve just posted the pics. It was a fab day and Ben thoroughly enjoyed himself :-)

 

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A road trip & a themed hotel??

20130512_141749I’m trying hard to include some light post’s on my blog this year as I’m aware a lot of last year’s post’s were a little bleak in places (due to circumstances).

Anyway, this past week or two I’ve been contemplating my wedding anniversary coming up in May. People are often divided on celebrating day’s like anniversaries & Valentines, trotting out the line ‘why do we need a day to celebrate love, we could make the effort any day?’. True enough, I think though for some of us life can get tough and mundane and personally I’m not one to pass up the chance to celebrate anything and it doesn’t mean you have to buy in to all the cards ad merchandise if that’s not your thing, you can celebrate in whatever way you please. I love and enjoy the free things in life but I’m also a total hedonist given the chance ;-) and love luxury and all the expensive things in life too…my budget rarely allows this though, booo :-(

Our second wedding anniversary we spent on our allotment,

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we had a sneaky G&T and a chicken ceaser salad wrap during our break for lunch, :-) We have an unusual sort of life and marriage given we have not one but 2 children, well, young adults now really, with learning difficulties and disabilities (my husband is step Dad to them). This makes it important to make just a little time for each other now and again and to make some of that time special sometimes too. My daughter has been SO poorly and her health is so up and down that even though I couldn’t afford to take us anywhere I did anyway because I, we, needed just a little time out from the constant stress and worry. This is why for me our anniversary isn’t just a date, it’s something to celebrate and make the most of enjoying :-) I’d like to add with out making everyone feel a little bit sick :-) that I really did get lucky when I married my husband, there’s a lot I could write but I’ll spare you all and him…for now. He puts the kids and me first always, I never imagined I’d meet anyone quite like him :-)

On our last anniversary (our 4th) I organized a surprise weekend away for just the 2 of us. I know he doesn’t love being dragged around shops or sight seeing particularly. He does however like the finer things in life and he’s a bit of an action man, an extreme sports type, if it’s a bit dangerous and well, a bit nuts then I can guarantee that my husband will think that it’s a brilliant idea. I on the other hand don’t enjoy anything that involves me getting my hair wet, going to fast, being upside down, jumping of anything or that generally makes me feel like my lunch might re appear :-)

All this in consideration I tried to come up with something we could both enjoy. I decided to take the opportunity to share somewhere I loved with him. He hears me bang on about The Dales, The Lakes and Scotland REGULARLY. Given we live in the South West we’re a tad far from Scotland as a weekend break so I opted for The Dales and The Lakes and thought we could do a walk while there. That way I wouldn’t be dragging him around shops and equally he’d be ‘doing’ rather than sitting or just hanging around somewhere. It all seemed like a good idea at the time.

My Mum is better than any travel agent and she helped me come up with one of our overnight stays and the locations. She also sorted me a road map and I told Graham he’d be driving us somewhere but not where.

The day came and of we headed of in the car, the first issue, well, I may have remembered that I can’t actually follow a map :-). My husband was determined not to know where he was going so wouldn’t read the instructions and we spent most of the journey fretting about where we were going quite literally!!! Halfway there black clouds moved in too and with them brought rain, LOTS of rain.

After hours of my poor husband driving in to the unknown we stopped on a hillside in the Dales at The Alma Inn and I said ‘this is it’. It looked like a very nice Inn, but ultimately an Inn, in the middle of no where and it was throwing it down and blowing a gale. I felt a bit like crying but we headed inside. I hadn’t told me husband we were only there for one night at that point. I thought if I mentioned anymore driving with me navigating again the next day that he might actually combust.

When we got in it was very nice although is smelt a bit of egg and one whole half of the pub was closed of due to a function they were having. I was so disappointed, the lovely wood panel room I’d seen on the website we weren’t actually able to sit in, it was busy and we were stuck in a corner. I rang my mum to check in on her and the kids and tell her. My Mum then very kindly as a surprise got our room there upgraded. When we finally went upstairs to our room it was a HUGE relief, it was absolutely beautiful. I took a couple of pics but they don’t do it justice. It was large, had a nespresso coffee machine, a bang and olufsen sound system, a spa bath that was huge and the room had beautiful views across the Dales. It was just gorgeous. We had a few hours to kill so we headed of in to Skipton for the afternoon, we visited Skipton Castle, which is just lovely, well worth a visit and then  had a look around some quirky shops, I really like Skipton. It rained on and of and before we knew it it was time to head back for dinner. The food was nice enough but due to the event they had going on we had to wait a while for a table we’d reserved and we were were a bit squished in a corner again by the door. We were however given a free glass of some bubbly each which was very nice and the breakfast the next morning was fab.

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Once fed and watered we checked out. I’d broke the news to my husband about the next lot of driving he was in for, however I told him we were heading to Windermere and he didn’t mind as he said he’d fancied seeing the Lakes…phew. As we headed up to the Lakes the weather got worse, the skies were black and the rain got even heavier. It wasn’t to long before we found the road our hotel was on  Aphrodites Lodge and then our turn in. Oh dear, the car park had a skip in it and the place did  not look too tidy :-( We got out of the car and quietly made our way in. My husband raised an eyebrow at the bright red glass bust that greeted us on the way in. We got a rather understated welcome if I’m honest and we were hurriedly shown to our room. I’d booked the Cleopatra suite. Once the door was shut behind us my husband laughed, thank god he saw the funny side, also he did think it was rather awesome that we had our very own patio with hot tub. We’re both adept at making the most of any situation and despite the horrendous rain we headed of out to Ambleside, we did a walk there Stock Ghyll Force, it wasn’t the weather for going up on any fells. We both really enjoyed our rainy walk though, and afterwards we ducked in somewhere and enjoyed a Roast for dinner, we filled up so we didn’t have to go out and buy dinner in the evening. We then made our way back to our hotel and room. We cracked open the prosecco and put the hot tub on. We then spent the rest of the evening in and out of the hot tub, the rain was relentless, I sat under a golfing umbrealla in the hot tub sipping prosecco, so I didn’t care about the weather :-)

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The next morning we went for breakfast, the dinning area was actually very nice and the breakfast was good. We then headed of to Grasmere , I wanted to buy some Grasmere gingerbread and we stopped of for a short walk in Rydal Water en route. Then we parked up in Grasmere and did another short walk and had a mooch in Wordsworths Daffodil Memorial Garden. Grasmere is so pretty, even in the rain :-) We popped in to Baldry’s Tea Room and had tea and scones, which I can highly recommend, a lovely tea in a beautiful setting. I also got my Gingerbread and the all important brandy butter and then it was time for the long drive home!

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Would I stay in The Alma Inn again? yes, definitely, the staff were very nice and the room we stayed in was faultless. Would I recommend it, yes, although I’d check if there was going to be a function as I think it would be a lot more pleasant when not so busy. It would be lovely to stay there when sunny too as it had some lovely outdoor seating areas.

Aphrodites Lodge, would I stay again?. Actually, yes I would, despite the things I could pull the place up on I absolutely loved having our own private patio and hot tub, it was something a bit different and out of the ordinary. It is in a handy location and although I could have paid the same amount to stay somewhere more upmarket we wouldn’t have had our own garden, sunken bath and hot tub. Would I recommend it?, I’d be hesitant too but only because some would find themed rooms tacky and there’s some things that let the place down a little. I would recommend it if you have a sense of humour, (we giggled over breakfast wondering which of the other couples had chosen which themed room) if you like something different and are a fan of hot tubs :-). I don’t think it would take much to really raise standards there from when we stayed, some lovely customer service, to be greeted with a smile and a quick tour would be really nice and the room service (quality of the snacks) could be much improved. The car park and exterior tidied up and it would really lift the place. I’m pretty easy going so these things weren’t a big deal for me. I see they have recently changed their themed rooms, I’d DEFINITELY go and stay again, I’m a big kid at heart and the Red Rose Suite REALLY appeals to me :-) Also I should add that there was usually a 2 night minimum stay at Aphrodites but they made an exception for us, for which I was extremely grateful, now that is good customer service :-) I should also add that we stayed there a year ago, it looks like they have upgraded since, so some of the things I thought that could have been improved may have already :-) and the Cleopatra suite seems to have been replaced. It all looks upgraded and very nice.

So that was our last anniversary and now I’m plotting our next. There’s a load of places I’d love to take Graham, I’d love to take him to Malham Tarn for a walk or Ingleton Falls. However, what I did learn is that The Lakes and The Dales are a little far to go for just the 2 nights. We spent A LOT of our time in the car. So where to this year? I’ve not booked anywhere yet but I’m looking….:-) Budget is almost non existent so this should be interesting!

Oh if anyone would like to offer us mates rates to stay anywhere ;-) Haha I wish! I’d be very happy to do an honest review in return :-) This was not a sponsored post.

Where do they all sleep?

IMAG1309Six children, three girls, three boys, toddlers to teens.

Having a large family is often a source of curiosity, I imagine it wasn’t years ago, but these day’s it often is. I know this because I get asked such a lot of questions about life with so many children.

One thing I get asked a lot is about the number of bedrooms we have and where everyone sleeps. Well we have 6 children, 3 girls and 3 boys. We have 4 bedrooms. One of our daughter’s has a room of her own due to the adaptations she requires (she is wheelchair dependent) and due to her medical needs she can not/does not share her room.

Then our 5 and 14 year old daughter’s share the small bedroom, they have a bunk and in their room, they share one double wardrobe, one very large chest of tall drawers, one smaller set of drawers and many storage boxes under their bed, one storage unit with shelves, one small chair and one slightly larger chair and a full length mirror. It is not ideal, but it works, floor space is sparse and there is no desk. However school work is done at the kitchen table anyway. Due to the width of the room a double bed won’t actually fit in the room so only bunk’s actually work in there. The girls would both like their own rooms but equally neither mind actually sharing, or at least not the point where they ever discuss it.

My husband and I are in another room with a monitor so we can keep watch on our eldest daughter who is disabled.

Then finally our 3 boys share a bedroom. A 3 year old, a 10 year old and a soon to be 13 year old (who has ASD). Again I’m sure the boys would all like a room of their own but in the grand scheme of things neither mind sharing either. Due to the departure of the cot bed before Xmas a third proper bed was needed in their room. This presented a problem, which thankfully we managed to solve thanks to a very good quality high sleeper from Mrs Flatpack.

The boys now have a bunk and a high sleeper in their room, one large and one small wardrobe, one very large, tall chest of drawers, 2 small chests of drawers, a desk and a sofa area and lots of under bed storage boxes. Again floor space is sparse and  it may not be ideal but it does work and in fact all of the children often enjoy time in there too, to hang out on the sofa or play Minecraft. The sofa pulls right out to a very handy spare bed with a great big drawer for storage too. The high sleeper has become one of my very favourite pieces of furniture. It is so sturdy and serviceable and perfect for a room full of boys.

I thought I’d share some pics (finally, we got the high sleeper last Oct) and my lovely twitter friend Mrs S and her husband came over to help us assemble it. Well mostly her husband and mine but we occupied the children and chatted :-)

This isn’t a sponsored post by the way, although I do think the bed is fab. As for the children all sharing rooms and being a little short of space, well it isn’t ideal but it’s certainly far from awful. They’re very tolerant of each other and in truth they actually enjoy each other’s company. Many a time our 5 year old has crept on to her teenage sister’s bed to watch Disney movies with her and she loves occasions her big sister tucks her in to bed at night. The teen has spent hours in their room doing her little sisters hair and letting her play with her bits of make up. The only time the teen would really appreciate her own space is when her friend’s come round but I encourage the 5 year old to stay downstairs when they’re round and try occupy her with an activity. The boys, well they actually seem to love sharing their room. The toddler goes to bed at 7pm and the older boys follow at 8.30pm and 9pm and can often be heard quietly chatting. They love their little brother, even if he does sometime make a mess in their room by pulling all the toys out from under their bed.

I often hear people talk of how children need their own rooms, in actual fact I think want is a more accurate description. I grew up with friends who all shared bedrooms, a room of their own was an absolute luxury, certainly not a ‘need’. I know, times change, but I do still think shared rooms certainly aren’t the end of the world.

Here’s some pics of our boys room with their new high sleeper. The desk is a lot bigger than it looks. A picture of the Rutland high sleeper can be seen properly here.

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A day out

IMAG2381After a few heavy duty posts of late I thought I’d give everyone a break with a picture post.

We had a very rare family day out today, my Mum had Paige and Owen because Paige can’t travel far or sit in her chair for long and Owen doesn’t love long walks due to his hypermobility and LD’s. He does often come along but as he’d had a busy week he was having a relaxing time at Granny’s .

The sun was actually shinning so we headed of towards the New Forest and Avon Heath, it’s great value for a day out, free aside from the parking but £3.50 for the whole day isn’t bad. It’s been a long time since we’ve had a family day out, I’ve really missed it. I always forget how beautiful the New Forest is. Hope you enjoy the photo’s :-)

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Paige

My daughter, Paige was born with an aneurysm of the great vein on Galen & extensive global brain damage, this is her story, our story.

IMG_20131005_170859I was 19 when I discovered I was pregnant and 20 when my first daughter, Paige was born. It was a straight forward pregnancy, although when I went 2 weeks past the baby’s due date I was induced and had my waters broken. Several hours later my daughter was born.
I had seen plenty of newborns before but I immediately thought my daughter looked very different. Her face looked so puffy and swollen and her eyes were like tiny slits. Not that it mattered to me how she looked. It did however set my mind a little on edge as I just couldn’t understand why she looked SO puffy. The first night in the hospital with her was scary, while other babies slept and fed and cried a little my baby just screamed and screamed until she was choking on her saliva, then she’d go limp and be asleep but only for 10 or 15 minutes at a time and she would wake up screaming. I was SURE she wasn’t like the other babies. I cried and at one point and begged for a midwife to stay with me but they were all too busy. I felt helpless and useless. She wouldn’t feed properly, she kept choking on excess saliva and had almost foamy bubbles coming from her mouth, she was also strangely jittery and her jaw would often quiver and her hands shake. I was also very concerned at her heart rate as I could see her pulse racing in her neck, sometimes her colouring would be almost a bluish purple. I was a first time mum and knew nothing about babies but I just knew this wasn’t how she should be.

Doctors and nurses told me she was fine though, a healthy baby. They conceded that her heart rate was quite fast but explained that was common in newborns, as was having some mucus in their throat etc. So I took her home thinking I was just a pretty incapable first time Mum because I couldn’t stop my baby crying like the other mums had been able to, nothing worked. I was paranoid as she slept and I couldn’t bring myself to sleep at the same time as her as I was terrified she’d start looking that strange colour or choking on her saliva.

When she was 6 days old I laid her in her moses basket near the xmas tree so she could see the lights and I answered the door to the midwife. The midwife sat beside me on the sofa and I started to let out some of my nagging doubts again about my daughters health, she turned to look into my daughters crib and that’s when it happened. Paige went into heart failure, I think at that moment in time the bottom just fell out of my world. I have such sketchy memories of what happened next. I know we rushed her straight to the doctors surgery just 2 streets away where all the doctors flew out of their consulting rooms and my doctor who was lovely began some sort of resuscitation procedure. Next I was at hospital in Salisbury being told it was a suspected hole in the heart that had caused this and we were rushed to the cardiology dept at Southampton Hospital.

Several hours later we were called into a small room with some doctors with very grey faces. People poured cups of tea and I heard they’d consulted with Great Ormond Street and it was a confirmed vein of Galen malformation. Then I heard added to that my daughter had extensive global brain damage and finally that she would not survive. It was so surreal I can’t remember looking anyone in the eye, I do remember thinking nothing else life could ever do to me would ever, or could ever hurt this much again. I took very little interest in what anyone said which maybe is why my memory isn’t so good, all I wanted to be was with my baby.

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The next day I remember staring out of the hospital window at snow that had just began to fall as her christening was performed by her cot side. Paige was then being tube fed and had been put in an oxygen head box and wired up to various monitors. Some nights I slept in the parents room, some in the soft play area in the playroom on the ward, and some just in the chair by her cot. I will say that the nurses there were some of the nicest people that I have ever met. A few times as Paige’s sats dropped and things happened  and it looked like her body was giving up, but whenever I then held her, her sats would start to improve (not uncommon I was told) and staff would relax a little again. She had been put on medication to control the heart failure and a couple of weeks passed. Paige continued to lose weight and I bought smaller and smaller baby grows from the hospital shop. She was being tube fed but had terrible reflux and often the mix would fly back up the tube. She shrank so much due to most of her baby weight just turning out to have been fluid. Explains why I thought she looked so very puffed up and swollen at birth. She went from 8lb 2 to at one point to just 4lb. I can’t ever look at her newborn photographs I had of her because they now make me think I should have yelled harder that she wasn’t ‘normal’, I should have done more, and maybe the VGM could have been detected before she went into heart failure.

Anyway the day before Xmas eve Paige came home, mostly because I pushed to be allowed to take her home, if only for a short time. I now realised the fact I’d not been able to comfort her and stop her crying in those first few days wasn’t because I was a terrible mum, it was because she had been so poorly and obviously I would have said in so much discomfort.

After a few weeks we went to see Dr Taylor in GOSH and Paige’s condition was properly explained and I saw her MRI pictures. I could see clearly how the prognosis could not be good for my daughter, just from the amount of brain damage she had sustained and it was suspected she was blind (she isn’t). It looked likely that if Paige did survive her quality of life would not be good.

We returned home on borrowed time. Some months later I tried Paige with drinking from a bottle and she took to it. She could only feed for a short spell at a time as her body found it exhausting and it put strain on her heart. Slowly she began gaining half an ounce a week in weight every other week.

At around 3 years it became evident that Paige may never sit unsupported or walk (although we only gave up on trying to get her to walk at around 10, when it became a physical impossibility for her to even stand strapped in a frame). I felt she had a good understanding of language though, even if she was at that time unable to talk herself. At around 4 years she came off the medication for her heart as her heart had began coping with her condition.

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Later when Dr Taylor left GOSH and Paige was then put under the care of a Prof N, surgery was suggested to us. I sought Dr Taylor out though (she was then at the Cromwell) and sent plates of Paige’s last MRI to her for a second opinion. She confirmed that there had been very little change in Paige’s brain or malformed blood vessels and that as her heart was coping well that her opinion on surgery not being the best route for Paige remained the same as it always had. She explained she could not see how Paige could benefit from the surgery. After much thought I decided against the surgery. I was then referred to a more local Neurologist, Dr K. She also thought though that Paige should have surgery (she was part of  the Professor’s team at GOSH). I declined again. My thoughts were that it would be best to do an MRI once every 2 or 3 years to just keep watch on the aneurysm and blood vessels, and if at anytime there appeared to be any changes then maybe that would be the time to re think the surgery option.

I was told they would not risk Paige’s health by putting her under anesthetic for MRI scans if I wasn’t going to agree to the surgery. I have never heard from a neurologist since and Paige is now 16. In my opinion monitoring the growth of the blood vessels would have been wise, clearly the other neurologists did not agree. I have not pursued neurologists however as I am cautious and would not want to be pushed down the surgery route unless it was actually necessary and of some certain benefit.

With my daughter the brain damage that is done can never be ‘fixed’ and  her heart is now functioning totally normally. She had a bleed in the brain aged 7 but nothing since. The aneurysm itself has caused her no serious health problems. The health issues she does have are as a direct result from her quadriplegic cerebral palsy. She can now talk and is very bright, considering her brain damage she is just amazing.

She has had some surgeries on her legs, one to lower muscle tone and another to remove the top of one of her femur’s. These operations have been extremely tough on her, her last surgery resulted in her being confined to her bed with pain for a full 9 months. She has not made a full recovery and is now unlikely too. This is in no way however related to the aneurysm or her not having brain surgery. There are risks involved with this type of brain surgery they could perform on Paige and I am in agreement with Dr Taylor, that in my daughter’s case, the risks outweighed any possible benefit.

I am not aware of any other children like Paige who have survived and are doing well despite having had no surgery, embolizations or shunts etc. I would love to come across another child like my daughter, who had not been operated on but I am not sure if that will ever be the case as my daughter was diagnosed 12 years ago now and things have changed a lot in the world of medicine since then. Also a lot of the children I have read about don’t also have the complications of extensive global brain damage and don’t have quadriplegic CP. Many children with Paige’s condition appear to have none of the extra complications Paige has and I’m very pleased to say that many of them have the surgery and go on to lead very ‘normal’ lives.

I will be honest, being so responsible for my daughter’s life and having to make the decisions I have has been truly terrifying. I have made the decisions I have for her based on as much information as I could gather and made the decisions for her that I would have made for myself given the facts in front of me. I will add, certain websites only give ‘certain’ information and that I fought hard to obtain unbiased information. I have not made uninformed decisions for my daughter and never would. The neurologist’s advice I took not to operate is from a leading world expert on my daughter’s condition who knew more than others as this was her area of expertise.

Today life is tough for my daughter, the CP has tightened a vice like grip on her. Pulling her bones in the wrong directions, affecting her feet and her spine. She’s had some nasty bed sores (a result from being confined to bed post leg surgery). She’s battled through so much pain and sickness. The past 2 years have been unimaginable. I almost can’t believe all that she has been through, not just these past 2 years, but her past 16 years. I’ve had to strap her in to all kinds of ominous looking equipment, learnt more than I could have ever thought possible about the brain and told her so many times that she would be alright whilst trying so hard to believe that she would be myself. You never know how strong you can be until someone you love depends on your strength.

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Paige is winning though, she has fought and not stopped fighting. She will not make a full recovery, she will never be as she was in 2009. Her pain is now managed though and her bedsores just healed. Her smile has come back and so has her laughter. So onwards we go, with up and down days along the way. We have no idea what is around the corner with Paige, every night I go to sleep wondering what tomorrow will bring, no two days are ever the same. Whatever happens though, she will always be the bravest, most remarkable, most beautiful soul I’ll ever know and I will always be proud that she is my daughter. She is a miracle in every sense of the word. I’m not able to give her all the things I wish I could, I’ve never been able to combine working with caring for her. I run a charity that is kind of on her behalf because she loved going so much. All I can give her is love but she never seems to mind. I’m very lucky to have such a wonderful daughter & family, no matter how hard times get.

My eldest son also has learning difficulties, if you wish you can read about his story here

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Heather’s Story, Lung Leavin’ Day & Mesothelioma Cancer

Today’s post is in response to a recent request I received, I was asked by a lovely and inspirational lady, Heather, who is a survivor of mesothelioma cancer and who has made it her mission to help other mesothelioma victims around the globe. I am sharing her personal story on my blog today and a link to her site to help her spread hope and awareness for others going through this.

Heather is an 8-year survivor of mesothelioma – a rare cancer caused by asbestos exposure. When she was diagnosed, she had just given birth to her little girl and was told she had 15 months to live. After undergoing a risky surgery, which required the removal of her left lung, she beat the odds and created LungLeavin’ Day as a way to commemorate the day that changed her life forever.

LungLeavin’ Day is held every year on February 2 and it is used to encourage others to face their fears! Each year, people gather around a fire in her backyard with friends and family, they write their biggest fears on a plate and smash them into the fire. They celebrate for those who are no longer with them, for those who continue to fight, for those who are currently going through a tough time in their life, and most importantly, they celebrate life!

This year, Heather has asked bloggers to participate and spread the word about LungLeavin’ Day.  She’s created an interactive page that tells the full story of their special day. Although the day has passed, please do check out the page and share if you are able.

I am always happy to help raise awareness of causes like this, which is why I was happy to post this for Heather, if you’d like to and you’re able I’m sure she’d greatly appreciate if you shared her page however you’re able :-)

Thank you