Thursday, 30 August 2012
But for some, why? just never gets answered. It just makes more 'why's'
Like why has Harry got cancer? and why will he have a lifelong struggle to cope in a world made for fully sighted people?
And for my friend Lisa, she has the most painful thing a mother ever has to do on Sunday, she has to let the angels take hold of her tiny baby and carry him to heaven. She never got the chance to feel his breath on her cheek, to feel his fingers curl round her finger, to feel the warmth from his love and why??? No-one will ever truly know, and it will be something Lisa and her family will ask for the rest of their lives. All we can do is love them and hope they can somehow get through it. Why?? Because they have to.
I posted this on facebook, I can feel their anguish but in a different way. Harry is still with us, fighting the awful 'C' word, Shea never got the chance to fight. It doesnt mean he is loved or thought about any less.
For Shea Joseph Leddy, who will tomorrow set out on his journey to the place where, on Sunday, the angels will wrap their wings round him and cuddle him into heaven. Sending love to Lisa, Gerard, Daire and their family as they prepare to do the hardest thing no-one should ever have to do. Stay strong xx
When God calls little children to dwell with Him above,
We mortals sometimes question the wisdom of His love.
For no heartache compares with the death of one small child,
Who does so much to make our world, seem wonderful and mild.
Perhaps God tires of calling the aged to his fold.
So He picks a rosebud, before it can grow old.
God knows how much we need them, and so He takes but few.
To make the land of Heaven more beautiful to view.
Believing ths is difficult, still somehow we must try.
The saddest word mankind knows will always be "Goodbye".
So when a little child departs, we who are left behind,
Must realize God loves children, and
Angels are hard to find.
I also send a thought to my friend Hayley. Those who regularly read my blog may remember last year I posted about her anguish at having to say goodbye to a baby she too never got to see grow up. She will be induced tomorrow and hopefully she will safely deliver her baby boy, he will never replace the little lamb she lost but I send her and her family love.
And I will finish with a few why's.
Did my car finally pass its MOT at a cost of 300 squids then sound like a traction engine moments after leaving the garage?
When I mentioned it to the mechanic he then informed me my car was mis-firing and sounded like it was running on 3 cylinders rather than telling me in person when I picked it up?
Will my 'Clic Sargeant Social Worker not return my calls?
Has Harry got cancer, its not beeping fair?
Is Emmerdale so rubbish?
Is falling asleep on the sofa the snuggiest sleep?
Does Harry keep on filling his nappy at 5am?
Does William demand sausage and chips at every meal time? (he doesnt get it lol)
Do children always need a wee at the point of wetting themselves?
Do children always ask why?
Is your mum always right?
Does no-one just call to visit when your house is showroom spotless?
Does someone need a number 2 the minute the bathroom is scrubbed to cleanliness?
Does your toast or fish n chips never taste as good as someone elses?
Is never leaving the pots til morning the good idea it was the night before?
Does the wi-fi crash the minute you sit down to check your facebook and twitter? when you get that rare minute to yourself that is
Does someone else always win the lottery?
Does the ground never open up when your child drops you in it or says something toe-curlingly embarrassing?
Does your sponge cake never look like Mary Berry's?
Is line dried bedding the most delicious thing in the world?
Has Harry got cancer? Oh I already asked that, but thats one 'why' I will be asking forever. Why oh why indeed, what did he ever do to deserve it. Why?
Tuesday, 21 August 2012
We were all excited for Lisa as she had 2 and a bit weeks to go til the birth of her second little boy, but sadly yesterday she went to get reduced fetal movements checked and was given the devastating news her little boy had passed away.
We all feel numb for her, we all cannot imagine what she is going through. It flashes me back to just before Harry was born and I noticed he wasnt moving, I was lucky and Harry was born safe. What Lisa must be feeling this morning as she returns back to the hospital to deliver the baby, knowing she will never hear him cry.
People will offer words of comfort but nothing can help the feeling of loss she will have. Losing a baby at any stage must be hard, but knowing you were almost at the end must be really hard.
Please have her in your thoughts x
An angel never dies
Don’t let them say I wasn’t born,
That something stopped my heart
I felt each tender squeeze you gave,
I’ve loved you from the start.
Although my body you can’t hold
It doesn’t mean I’m gone
This world was worthy, not of me
God chose that I move on.
I know the pain that drowns your soul,
What you are forced to face
You have my word, I’ll fill your arms,
Someday we will embrace.
You’ll hear that it was meant to be,
God doesn’t make mistakes
But that wont soften your worst blow,
Or make your heart not ache.
I’m watching over all you do,
Another child you’ll bear
Believe me when I say to you,
That I am always there.
There will come a time, I promise you,
When you will hold my hand,
Stroke my face and kiss my lips
And then you’ll understand.
Although I’ve never breathed your air,
Or gazed into your eyes
That doesn’t mean I never was,
An Angel never dies.
Sunday, 19 August 2012
My happy little chappie, taken by Hanty Raychel.
A friend on twitter asked how he was doing, this friend is currently recovering from a major removal of 3/4 liver to get rid of cancer. He always asks, but this time a bit of me realised where Harry is at compared to his peers, and I felt a bit sad. All my children were later walkers but by 15mths they were chatting away and all had a massive vocabulary of words. Harry has only just started saying mummy, and has a few more like 'am stuck' 'don't touch' 'whats that/this' but thats about it.
Harry is massively behind, he's only just started cruising along the furniture and wears clothes for a 9-12mth old. And I know you shouldnt compare but when you get people in the street looking amazed when you say he's 19mths old it brings it home.
Its a double edged sword, chemotherapy. At the same time it probably saved his life but hampered his development. I love it and hate it for that reason. I hope he never has to have it again and when you see these poor kids with leukaemia on it for yonks compared to the time Harry was on it it makes you wonder what it is actually doing to them (apart from saving their lives)
But one thing neither chemo or cancer has affected, and that's Harry's happiness and cheeky smile. Even at his lowest point whilst on chemo, he managed to smile. Even when he comes round from the anaesthetic every month he smiles (although I think thats something to do with finally having a huge botle of yummy milky) but whilst cancer has robbed him of perfect eyes and perfect vision, and I hope it doesnt rob him any more than where he is at the moment, it hasnt touched his spirit.
Everyone loves Harry. When we go to Asda, checkout ladies beg us to use their checkout so they can see him. They come and find us so they can have Harry hugs. When one of them finds out how he is getting on with treatment, they tell each other so the next time I visit they come up and be happy/sad depending on what happened and I havent even told them personally.
Cancer isnt a double-edged sword. Its just a normal 2 sided coin. Its gets flipped and ...
You either get cancer or you won't
then if you get cancer and its flipped again..
You either die or you don't.
What isnt that simple is the massive fight and treatment each cancer sufferer goes through to those outcomes. Some are lucky and win their fight, some win their fight but are left with forever scars/afflictions because of their cancer and sadly some do not win their fight.
I used to take cancer for granted, it was something that happened to other people and never really thought that much about it. Spend a little time on an oncology ward and reality hits you like a ton of bricks, sit in front of an oncologist and a consultant while they tell you your child has cancer and reality hits you like all the air has vanished from the atmosphere. Sit by your childs hospital bed watching them struggle for life and reality hits you, really hits you. Living with cancer has to fit in with your way of life, you just get on with it but sometimes you get these reality moments and you realise life's not fair.
My latest reality moment, last night whilst watching some drivel on TV an advert for WaterAid came on. A powerful ad, and asking for money for the poor children who have no choice but to drink dirty water whilst touched me a little also maddened me.
There are so many children (and adults) who have no choice but to fight cancer yet the number of the ads asking for money for cancer charities are non existent compared to the overseas aid. Certain treatment protocols are only available overseas and the sufferer has to raise their own funds to get it. Where are the ads for these??
No child to die is the government message, and whilst its worthy saving a life of a child in Africa, what about saving the life of a child at home. They say charity begins at home....
So Harry's double edged sword, he has deadly cancer but he's alive and happy. Lets hope the cancer side quickly blunts down so it can't hurt him anymore.
Friday, 17 August 2012
When something goes wrong, its usually followed hot on the heels by something else, well about a week ago, Dan was just finishing his shower getting ready for work when the pump packed in and the water slowed to a trickle. Not a normal stick on the wall power shower, but a pump attached to the water pipe leading to the shower head. The water pressure is shite at the best of times but not enough to go round the miles of pipes and give enough pressure to make the shower look like a shower. We called our trusty plumber, (as calling the landlord is like getting a twitter follow from Piers Morgan, ie impossible and never going to happen)
The plumber came and declared the pump to be knacked. erm I could have told you that. Anyway almost a week later he's still not got the go ahead from the landlord to buy a new pump, so he might just get one and sort it later. Wonder if the landlord is dead and decaying at home??? He's not returning calls apparently.
What are we going to do without a shower??
Take a bath.
A bath (looking in horror), thats something I use for the kids, I never have time to have a bath and just to get in and straight out is a waste, but bath it is, and has been for a week. Must go buy some more baby bubble bath, its amazing and leaves your skin really soft. Might get used to having no shower, but saving the planet and all that, showers are much more economical and times are hard. Good job we don't have a water meter.
Anyway, the something else.. I noticed the other day that the toilet seemed to take a long time to empty after flushing. My first thought was, O what have the flushed down it now??????
But little alarm bells stared ringing so I went outside and looked in the drains, and lo and behold they were full. Oh no that only means one thing. I lifted the inspection chamber to our septic tank and it was filling up. Oh bloody fantastic, its was pouring down, the pump in the tank to remove excess water was obviously not doing its job and now I was worried the rain water would help it quickly fill back to the house and well you can imagine the scene, outpouring from the loo.
I contacted the people who had done a massive repair 18mths ago, and no they cant come out as they are going away for a week. Could it wait?????????????? No I dont fancy splashing around the house in wellies with toilet waste. So I did the next best thing and rang the guy who empties septic tanks. At least it might buy a bit of time till the repair man returns from holiday.
He turned up, and asked who'd emptied it since the last time they were there? Er no one why? It needs emptying every 12mths (and thankfully this is a landlord reponsibility so guess who's getting the bill)
He duly de-sludged it (and it was rank, believe me) and lifted out the pump which was clogged up with tissue and the so called degradable toilet wipes the kids use. The pump was still in working order, phew but the problem was caused cos the tank hadnt been emptied, waste had got into the clean water chamber and when the poor pump tried to suck the water out it obviously sucked up more than it should and ceased to work, hence the tank filling up even more with water etc and then overflowing back towards the house.
LESSON, IF YOU HAVE A SEPTIC TANK GET IT EMPTIED EVERY 12MTHS OR ELSE
Now, this guy needed paying and guess what, the landlord was not forthcoming with replies to my messages, so I gave the nice man a cheque, asked him not to pay it in to give the landlord time to settle the invoice, and guess what will be deducted off his rent if he doesnt cough up?? I bet he''l be in contact then.
The nettle rash, oh yes. He left the pump switched off, as it actually needs a certain level of water in the tank before it kicks in, and cos he'd completely sucked the tank dry (with his tractor hosepipe of course)he said to check in the morning to see if the level had come up and switch the pump back on.
So I waved Dan of to work and popped into the garden, bent down to lift the lid (wearing some of the illicit blue gloves Dan acquired when Harry was on chemo for barrier nappy changes) and no the level wasnt up enough so I can do loads of washing, a few baths cos of the non-existent shower and that will surely get the level up I thought to myself. Then OUCHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH what was eating my arm??
I looked round and in a Homer Simpson Doh! moment I realised I had plonked myself in a patch of nettles, and a short sleeve t-shirt was not the best thing to wear. Cursing the strimmer for running out of line so Dan didnt cut them back, cursing Dan for not cutting them back, cursing oh yes its behind the barrier for the tank cover so no-one actually goes there so they never get cut back, cursing me for not looking where I plonked myself, cursing the landlord for not arranging to have the tank emptied, cursing cursing cursing
So, in old wives tale fashion I looked around for the proverbial dock leaves that always grow where nettles are so you can rub them in and stop the sting (they do work actually) and I found the leaves and arrggghhh they were covered in mud (but not being to sure if it was just garden mud or something yak from the tank) I didnt use them. Result one arm feeling like its on fire and with a million hot iron pins being stuck in and out. Now I know why ma and pa always yelled 'mind the nettles they sting'. Yes they bloody do.
Oh, its raining, good that will fill the tank up nicely.
Yesterday was a great day, my super clever niece Chloe found out she'd passed her A Levels and had been given a place at her first choice Univ. I've been on tenterhooks for her since June, she's worked so had and now its paid off for her. Still can't believe she's old enough to leave home, but you can catch up via Rachels blog. Go have a look (the link is down the right hand side of my home page)she's so funny.
I decided to wash the car, and Matthew and Madeleine helped, well they hindered actually and we all ended up soaked, the car was nice and clean but its raining. As Matthew said that was a complete waste of time wasnt it. At least its raining on a clean car. I was going to clean the insides out today, but its raining. Oh well ha ha
Marlene (from Rainbow Trust) came, and William and Madeleine were excited all morning till she landed. They demanded to be taken out, now despite the rain Marlene said she'd take them to Morecambe so they could look at the sea. The kids got their shoes on in record time, why is it I have to ask them a zillion times before they even move? And they had a lovely time, they managed to go on the seafront playpark then went to sainsburys. You would think they'd been to Disneyland, they had a brilliant time, I had a brilliant time, I had a lovely hot coffee and did the crossword in peace, Harry was asleep. It was delicious, thank heavens for Rainbow Trust
I decided to see how my cherubs were doing in the height/weight, Harry is still only 10.4kg (he was that last month) and his height and weight are firmly glued to the 9th centile in the dreaded red book charts.
I started with William, he's 96cm and 16kg. Both plotting on the 50th centile so Mr Average. Then Matthew, he's 130cm and 25kg. That puts his height back on the 50th centile (it was on the 75th) and he's now convinced he's shrinking. His weight is way below on the 25th so its true, he is a lanky beanpole. I was a little surprised, I thought he was taller but the tape measure doesnt lie. So Madeleine was last. She measured in at 20.5kg up on the 91st centile (I am so gonna get the 'your child is overweight' crap from the school nurse when she starts in September) but her height was a massive 110cm, I checked it 3 times. This puts her up on the 91st centile too so she's tall and in proportion and her BMI comes out in the green healthy section so let the nurse say something if she dares.
I have had to get her age 5-6 school uniform as the ones for her age are too short. Its lovely seeing this as all the way through her baby years, she was firmly down on the 25th centile for both. What happened? She started eating and has never stopped.
Now unfortunately for me, I still adopt that and the only way I'm now growing is outwards, and I suppose the complete absence of any form of exercise isnt helping. I can't use the 'stuck in hospital bored on my own' excuse now really. So I better buy some batteries for the wii fit board and get my backside back on it.
My arm is still burning, the kids are demanding breakfast, and Matthew is worried if he doesnt it eat soon he will shrink even more. TTFN
Sunday, 12 August 2012
Harry had a clear visit. His new tumor from last time remained unchanged and it was lasered again just to make sure the little blighter was blasted to oblivion. He was in and out in record time, barely was the gas mask put on then the oxygen mask was put in its place. This was fabulous news, I am still celebrating cautiously as I know things can change and just one new seedling is all it takes to get the ball rolling but for now a clear visit is absolutely fantastic. Harry's 21st anaesthetic. Its scary just how much he's been through and yet he still smiles, Harry superstar. Gold medal winner.
William turned 3 this week too. He didnt want to be 3, he wanted to stay 2 or be 4, but not 3. He's really enjoyed the Olympics, and he and Madeleine have been busy re-enacting certain sports, judo, Taekwondo, swimming, gymnastics, running but he was miffed when Matthew point blank refused to be a showjumping horse. Har har
I thought I would remember lots of funny things to share, but alas my memory has failed me. A touch of old biddy disease methinks. I went along last night to a Dancing School reunion. From the age of 4 to 19 I did all the classic styles of dancing, Ballet, Tap Modern etc and competed at many a competition and not wanting to sound bigheaded I won hundreds of medals and trophies, the name Lisa and Annette (my younger sister) Stephenson was famous and many younger dancers aspired to be like us. Our names still appear on the trophies won by children now.
It was a bit of a giggle meeting up with girls I danced with and their mums. Many photos were brought along, and not one of us looked like the twig thin waifs in the pictures. Its 19 years since I gave it up, It only seems like yesterday sometimes, but what was scary was the dance teacher didnt look any different. Hmm Wii Fit needs to be dragged out from the back of the telly so maybe I can look a little more like the old pics for the next reunion. Oh well, going to enjoy the closing ceremony. TTFN x
Wednesday, 1 August 2012
Sorry for leaving it so long, time just seems to have slipped by. Nothing much has happened really, kids are off school and typically the weather is rubbish. I thought they could cheer on the much talked about team gb medal contenders at the olympics, but just like the weather they too have been rubbish. They have been enthralled by the diving and gymnastics and trying their hands at judo, but what made me smile was Matthew stating "he was going to turn chinese because they win everything and britain is rubbish, so why does everyone want to live in britain then" snigger
Marlene from Rainbow Trust came yesterday. The kids were uber excited and william stood for half an hour looking out for her, this was at 6am lol they had a brilliant time painting and making, and I now have 3 hand made and decorated wind chimes and enough hand print paintings to decorate every wall in the kitchen. William stood against the door so she couldn't go and cried when she went. She's taking them out next time.
William is now potty trained (yes I know he's nearly 3, but it only took a couple of days and 4 accidents) and amazingly is keeping his glasses on most of the time. Funnily enough he refuses to take them off when the word bed is mentioned. He's 3 on monday. They grow up too quickly.
Harry is back in birmingham next week. I rang for his next appt date, as a month on from his last one would land when my mums is away so I wanted plenty of time to arrange childcare. Oh I've just sent it out, its the 10th august was the reply. So again theyve pulled it forward from what they said, hope its not an omen. Its a 3wks break but what is most annoying, is had I not rung the letter would have landed giving me a weeks notice. That is not enough time to arrange everything as we live a 3hrs drive from birmingham, I cannot just put the other 3 in a cupboard for two days while I go. A few ppl have asked why they can't email us as soon as theyve been allocated a date, would make life a little easier. Anyway I am a little nervous, hoping his right eye was just a blip last time and magpies stay away.