Saturday 23 February 2013

Half Term Shernanigans

Well, living in the northwest and having to be different from the rest of the country, we have just finished our half term holiday. I think the rest of the country have been back a full week.
Anyway, this year we decided against popping over to the Alps for a little ski break, I just couldn't be bothered packing all the gear, and as we are all capable of going down the black runs it seems a little tame trying something other than Everest.

Well ok, that's an absolute bare faced lie. I neither have the gear or the interest in ski-ing. And I was being honest saying I was capable of going down a black run - flat on my arse!
What can anyone possibly find great about ski-ing?? Being out in that cold white nasty stuff called snow and ice, WHY??? When it snows here, everyone moans and whines about it, so why spend an absolute fortune flying out to more of it??

So, we weren't jetting off for a bit of apres ski. The closest to ski will be a trip to Asda and I will get a 4pack, the French Set style ski yoghurts are my fave.

So what did we do with our week off?

MONDAY

Well of course there was the obligatory ill child - this time it was Matthew. Was a little worried about him, after a few days of saying (in a tone that sounded remarkably like my mum when I was ill) its just a cold, a bit of fresh air will do you good, when he started sleeping constantly I decided to take him to the docs. Result one ear infection and a course of anti-biotics. He's much better but he's still ghostly pale. They all went to the dentist - all have lovely teeth, even Madeleine who seems to eat nothing but sweets lol. Harry was none too impressed, William sat with his mouth so wide open you could see into his lungs, Madeleine stood and opened her mouth for a split second and Matthew was a little star. I am determined my children have no fear of visiting the dentist.

Tuesday

Not wanting to surpass a Riley outing to the dentist, Tuesday dawned with a mass trip to the hairdressers for the half-termly haircuts. I went a bit radical with Madeleine and her scraggy long locks have been replaced with a stylish cute little bob, William and Matthew are sporting short back and sides and Maria (being so loverly) offered to snip the 3 long bits from cherubic Harry's head. Well you would think she'd snipped his ear off. He went bananas and screamed blue murder. He absolutely and completely hates anyone doing anything remotely similar to being held down - must make him think of his traumas in Birmingham. He actually made his first shoe fitting look tame!!

Wednesday

We all went on a family outing - and took Dan's car for its MOT We had genuinely thought it ran out at the end of February, but upon just double checking it ran out on the 9th. Aaarghh, Dan has been driving illegally for over a week. Well as expected as we are extremely lacking in the spare cash market it failed. One hundred and ninety five squid failed.

Thursday

Family outing again to pick up Dan's heap, sorry I mean car. And as it was a fine sunny day I succumbed to the kids -you promised we could go to the park- whines and took them to Happy Mount Park in Morecambe. It was freezing. Harry was wrapped up in his snowsuit and snuggly asleep inside his footwarmer in his pram, the other kids were running around and playing on the swings, and were complaining they were hot in their coats, and I was stood keeping careful watch over the cherubs, freezing my everything off. I could bare it no longer and as the ice cream van was unsurprisingly not there the bribe of 'you can have an ice-lolly when we get home' worked rather well and we hot footed it back to the warmth of the car.

Friday

The final Riley outing of the week was a trip to Asda. Their whines of 'its not fair why do we have to come' were rewarded by their nanna treating them to a trip to the big yellow M eaterie. Yes the highly nutritious Macdonalds. My reward that evening was that Dan started his weekend of night shifts. I had planned on updating my blog this evening, but in usual fashion I fell asleep on one of the sofas, so with a dead arm and pins and needles I dragged myself of to the delights of solitary sleeping with the leccy blanket all to myself!!

So here I sit on this freezing saturday night with a choice of sofas to sit on whilst I update my blog. I am actually sitting in my usual spot, on one half of the sofa, not even stretching out. The 3 youngest Rileys are all snugged up in their beds, the oldest enjoying the last few mins of his Xbox and I can already feel my eyelids taking on their lead load and trying to clamp shut.

BUT I have a lot of blogs to catch up on, I will probably be reading into the early hours. You really should take a peep at my sisters blog, it is a right riveting read. She has a talent for always finding the right words. Go on, take a peep.

Well one of my worst fears happened this week and Harry fell head first off the sofa. The sickening thud was awful, but thankfully he's fine. He has no concept of height/depth so to him just crawling forwards is fine, NOT. I was just out of reach. I usually make him lie on his belly and slither off as soon as he's climbed on (I would rather stop him completely but he needs to learn) but he was off before I could grab him. He didnt half sob, poor little thing. Has it made him stop and think 'don't climb cos I may get hurt?' has it heck. He's been on the sofa more times than I can count. Even I am getting sick of hearing 'Down down Harry' lol

Well its 2 weeks to 2 events, my birthday closely followed by Harry's next EUA. Both I hope will pass by uneventfully. I am absolutely far too old for birthday parties and it brings me a year closer to the naffness of being in my forties. And to be frank, if my fortieth happens in the same way as Rachel's did then I would rather forget it. Still I've got time til I get there. As for Harry's EUA, this will be 8wks since his last. I am still very nervous about this gap, especially as his follow-up letter from the last stated that his next EUA is scheduled for 5-7 weeks. So whilst I fully expect nothing to be there, there is that little part of your mind that starts up the what-if games and mine has started such a game.

Anyway, the half term break is nearly over, I didn't win the lottery tonight but I hit the jackpot every morning when I see the faces of my little angels beaming back at me. No amount of money could buy that.

Wednesday 13 February 2013

What will you give up?

Happy first day of Lent. A day when people traditionally give up something for the next forty days. Mine has usually been chocolate. How original!

However, this year I have decided to do something different.

Harry wants to give up cancer for Lent, that to me is unacceptable. I want him to give it up for life. You could think if there was a God, whose message in the Bible is always to protect children, that he would spare these innocent little mites from cancer and its devastation it leaves behind. However, I am not going to start a religious debate, I was just thinking thats all.

Harry amazes me. He has been through so much and yet he still smiles. I am still scowling a week after stubbing my toe lol. All my children amaze me and to be the centre of their affection is amazing. There is nothing nicer than them falling out over who is going to sit on my knee to tell me they love me. Harry has even started pulling at them to try and get them off. He's a proper mummys boy.

So I have decided to give up shouting for Lent. I never mean to shout, its probably 2yrs of built up stress that contributes to it, but when you've asked them a zillion times to get their coat and shoes on your voice does tend to get a bit shouty. I always instantly regret it, seeing their little brows crumple into a frown hits home like a hammer.
So I will give up shouting. I am prepared to ask a zillion and one times now. Maybe I should start talking in whispers so by the time I get to a zillion and one my voice will be loud to them, but my normal voice lol and not technically shouting.

What is amazing that it has been 2 years since Harry's 8wk baby check and I raised my concerns over Harry's lack of making eye contact. I'm not going to dwell on the what-ifs and living in the past. What happened, happened. Harry for some inexplicable reason was picked to be one of the 40 children to be diagnosed with Retinoblastoma in 2011. I cannot change what happened, I wish it had never happened, but it did and we have to deal with it.
Harrys life was saved and the cancer brought under control to a point they can manage any new growths by laser. Each EUA brings the 'I hope there's nothing new and the existing tumors stay in remission' game and thankfully at the moment that is what is happening.
We live for today, I do not know what will happen next month/year and should he need invasive treatment again like chemotherapy then so be it.

So at the moment, I have a wonderful nearly nine year old Matthew, my precious first born. An amazing just turned five year old Madeleine, and my only daughter. My incredible three and a half year old William who makes me laugh every day and my superstar fighter two year old Harry. I am blessed to be their mummy and I count my blessings everyday for each and everyone of them. And I treasure them so much, I am giving up shouting for Lent.

What will you give up?

Monday 4 February 2013

Am still here!!!!!!!!!!!!!

Dear Blog

I am so sorry I have neglected you, severely. I can offer no explanation other than 'I'll do it tomorrow' never actually happens. Ok mum, so you were right with that one!
I had so much to write about and yet I never seemed to find that minute, mainly because Mr R seems to NOT have worked a night shift for ages, and that is the time I get precious 'hog the laptop' time.

So, yeah you guessed it Mr R is safe and sound AT WORK hurrah. I have just tucked all the little Rileys into bed, TV turned onto the good stuff and laptop perched upon a cushion on my knee. I know for sure I will have writers block, and all the good stuff will just vamoosh out of my head but here goes for an update.

Christmas was fabulous. The kids were thoroughly spoilt, but were so thankful for everything they got. My fingers were sore from the endles building of toys and lego. When I win the lottery, I am going to franchise a ready-to-play-with-toy range that parents worldwide will kill to buy because, yes you will just remove from the box and it can be played with instantly. No more sodding incomprehensible instruction manuals.

New Year dawned and my beautiful Harry turned 2! OMG how on earth did that happen. It seems like minutes since he was born, well thats a lie really but despite everything thrown at him these past 2 years, he remains happy and living his life to the fullness he can. He seems blissfully oblivious to the word cancer. To him his little life is normal. To me however, he still looks like a baby, and is behind developmentally and in height, but as my sis said on her blog, you cannot tolerate toxic chemotherapy and fight off septicaemia TWICE and still grow and develop in line with your peers. And just to make him turning 2 even more fantastic, he had yet another clear visit. That makes it 4 on the trot, and thats deffo one in the eye of evil nasty cancer. Har Har



Minutes old to 2 years old (thanks Rachie for the images lol)

He has just started the awful process of being statemented. This will forever label him as special needs. To me he is perfect, but to the wide world, he is a little boy who will need help living in todays world. His visual acuity is so bad he will probably learn braille and may need assistance walking round safely (in a clear tidy room in an environment he is familiar with he appears to walk fine. Put something on the floor and he will fall over it it, put him in a strange room and he will bump) I still do not like the idea of this label but if it means he gets whatever help he needs without me having to fight for it then it will be a good thing. The next big thing will be me letting go, learning to trust someone else with his safety is not going to be easy. That has been my sole responsibility since he was born, no one can possibly step up to the mark, well ok Hanty Raychel can.

Anyway, we enjoyed the rest of January, and until the 2nd February, we had a 2,3 and 4 yr old. And then something even more incredible happened. Madeleine turned 5. She is a tall 5 year old. Now just how did that happen. It doesnt seem 2 minutes since she was born, I can vividly remember. Rachel has told Harry's birth story many times. The franticness of him not moving and the bad heart traces. Well Madeleine's was going like a text book delivery. Waters broke at home, it snowed on the drive in, contractions started and progressed quickly (Mr R nearly didnt make it back) and after a few heave-ho pushes out little angel was born. Technically she was an angel as the cord was wrapped tightly round her neck. It took 1minutes and 10seconds (which seemed like a lifetime) until the wonderful sound you need to hear, she started crying and we hae never been able to shut her up ever since. She was a teeny litle dot, and the only thing that contributed to her 7lb 14oz was her little round belly, and she's kept it ever since!
She has grown into a wonderful little girl. So clever, reading marvellously, Wanting to know how everything works, asks a zillion questions a day and is the tallest in her class. Something I always dreamed of being, but it never happened. Yes I am jealous of my own daughter. Happy birthday darling.

William remains my source of laughter. He has an answer for everything. He announced he doesnt want to be 3 any more because its rubbish! Most of the tasks at pre-school are nonsense, so he says. His teachers love him to bits and want him never to go to school.
Matthew is growing into a tall solemn boy. His brain is 2days ahead and he is reading fiction for 14yr olds (checked for suitability of course)

I am so so proud of all my children. They delight me every day. I cannot imagine spending any less time with them, I am so lucky to be a stay-at-home mum. Life is practically perfect. It would be 100% perfect if it wasnt for Harry's predicament. Its leaving an ugly stain on us all, not even Cillit Bang or Vanish can shift it. But we are learning to cover it up so we see it less. Out of sight, out of mind, well sometimes that rule works.

We're trying an 8week break between EUA's. Something I'm not entirely happy with. Yes I'm ecstatic Harry is still stable, but we've always been told lots can happen in just a few weeks. So I am currently playing the what-if game. What if there was something just about to grow at the last visit? A 5wk break would enable them to laser it,but it could possibly grow too large in those extra 3 weeks. I know they know what they are doing. But my irrational thoughts will not let me settle and I seem to be stuck on a merry-go-round. I would rather go every 4 weeks for ever than play the what-if game. These next 4 weeks will drag.

Anyway, I apologise for my absence. I completely understand if you have put me on the shelf. I absolutely deserve to be. But now I have started again, I promise I will update you on the deliciousness of life with the little Rileys a lot more regularly.

With Love from me xx