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


  1. Well done Harry. Macey is trying for a 6 week break. Lets hope for good news all around x Macey sends you big hugs xx

  2. YAY you're back.....missed you lots...... wondered if I'd accidentally managed to unsubscribe..... So pleased that all is well with Harry, please don't leave it so long next time.....I need my Harry fix :) xx

  3. A very positive time for you all. Enjoy and try not to think too far ahead, easier said than done I know. Take care all who follow Harry.