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Monday, March 05, 2007

Sunshine!

Gosh what a miserable rainy day it was yesterday, and not only in the weather, but in my heart and head as well. I was feeling very very low yesterday about Lewis, thinking about how he used to be, what he is missing out on, what alot of his friends can do - walk, run, use their hands, talk, eat - all those really basic things most of us take for granted, until they are snatched away. I see people with children Lewis' age, and they shout at them or smack them, they tell them to shut up, dont run, dont climb up there ... and I think I WISH I COULD TELL LEWIS NOT TO DO THOSE THINGS. So please please please ... if you have children - APPRECIATE THEM AS MUCH AS YOU CAN. We didnt know Lewis would turn from a normal 2 year old capable of all those things into a 3 year old who cant do anything except smile and turn his head ever so slightly left and right. Until about a month ago, he could poke his tongue out (in a cheeky way) but now he cant even do that. Until two months ago, he could blow kisses. He cant do that anymore either. 2.5 months ago he could eat and feed himself (with his right hand), now he cant do that. 3 months ago he could use both hands to play. 4 months ago he could support his own head. 4.5 months ago he could talk. 5 months ago he could sit up. 6 months ago he could crawl. 10 months ago he could walk. Its like a backwards baby milestones. So please (I say it again because it is so very very important) ... next time you are frustrated with your child, next time you are fed up with them saying 'mummy mummy mummy', next time they climb up the back of the sofa ... remember Lewis cant do any of that and there was no reason, no illness, no injury. It just HAPPENED. Anyway, the sun is out today and everything looks brighter both in the morning and in the sunshine. So enjoy your children, love every second of them, even when they are driving you nuts. And have a great day! Just been on Postpals ... please please have a read of Amelia P's page - if you havent sent to Postpals before, please please think about it now - Amelia is losing her fight with neuroblastoma and any little thing that can bring a little sparkle to her day is a very big thing indeed. http://www.postpals.co.uk/pals/Amelia+P

4 comments:

Lawse x said...

Morning,

I was just reading Ameilas page (as i got an email about it) prior to coming on here to check your blog, and it is so so sad :(
..I think its time to make some more princess cards today :D

In terms of Poor Lew, i totally agree with everything you've said regarding appreciating children etc.... expect an email shortly too.

The suns come out here today too, Yay. It was all a bit gloomy yesterday.

Anyway, you take care, and hopefully speak to you/see you soon
xx

cheryl said...

Hi Sam

Just read todays blog and just wanted to say i am thinking of you both. Its only natural you get dark days (i had plenty with Brad when he was younger)! Isnt there anyway toy could fast track your appointment with GOSH? Hopefully you should get a diagnosos soon and start any therapies or treatment etc.

Speak to you soon,

Cheryl xx

Anonymous said...

Hi Sam

I just wanted to say that it was fab to see you over the weekend and we are sorry it was not a good day for you. We are all thinking of you and will try to get up to see you as soon as we can. Big loves to you all.

Take care, hugs and kisses,

Ann-Marie (Mike, Shannon and Savannah)xxxx

Anonymous said...

Hi,
Just read your blog, which bought tears to my eyes. I wish i could wave a magic wand and Lewis would be better. You have to keep strong for Lewis, he needs you and loves you very much. You are a really good mum.

You are ALL on my mind every day
Take Care
Sian XxxX

Take a look at other videos of Lewis at YouTube

The Lewis Jeynes Fund

The Lewis Jeynes Fund was established to provide care and support to Lewis Jeynes and the success of the Fund has meant that we have also been able to purchase specialist equipment for other children with undiagnosed neurologically degenerative conditions in Doncaster and the UK.

Lewis and his friends around the UK all suffer from acute and undiagnosed life limiting or terminal conditions and very often specialist equipment is difficult to afford due to the changed circumstances at home. This is where the Fund can provide vital assistance to those in need. All of the proceeds of the Fund go straight towards helping Lewis, and other children and families like him and us.

Contributions should be sent to The Lewis Jeynes Fund, 15 Kentmere Drive, Doncaster, DN4 5FL or by BACS to Nat West Bank, “The Lewis Jeynes Fund” Account No. 35662565 Sort Code 60 06 39. You can also go into your local Nat West Bank and pay into the Fund over the counter.

22nd October 2005

22nd October 2005
Lewis checking our supermarket receipt!

April 2006

April 2006
Colchester Zoo, just before Lew stopped walking

August 2006

August 2006
Lovely ice cream yummmm!

September 2006

September 2006
Ward 30 - just after Lews first major seizure

October 2006

October 2006
Doncaster childrens assessment unit - 'm on the phone!

October 2006

October 2006
In DRI childrens assessment unit blowing up rubber gloves!

30th November 2006

30th November 2006
Ward 31 - Blowing kisses to Daddy! Mwah!

30 November 2006

30 November 2006
Ward 31 - Playing cars!

1st December 2006

1st December 2006
Frankie & Benny's - just discovering cant eat very well

7th December 2006

7th December 2006
My arm doesnt work but my tongue still does!

7th December 2006

7th December 2006
Playing with Evie and mummy on the sofa

7th December 2006

7th December 2006
Lew in the bath with Evie providing entertainment!

7th December 2006

7th December 2006
At Homestart Christmas Party, waiting for Father Christmas with Aunty Nicola and Evie!

December 2006

December 2006
Playing with Miss Jodie at Building Blocks Nursery

i love you much (most beautiful darling) by e.e.cummings

i love you much (most beautiful darling), more than anyone on the earth and i like you better than everything in the sky -sunlight and singing welcome your coming although winter may be everywhere with such a silence and such a darkness, no one can quite begin to guess (except my life) the true time of year - and if what calls itself a world should have the luck to hear such singing (or glimpse such sunlight as will leap higher than high through gayer than gayest someone's heart at your each nearness) everyone certainly would (my most beautiful darling) believe in nothing but love

Lewis' cousin Millie

Lewis' cousin Millie
January 2007

Lewis and his cousin Evie

Lewis and his cousin Evie
February 2007

Lew and his cousin Anna

Lew and his cousin Anna
February 2007

12th December 2006

12th December 2006
DRI Christmas Party - meeting Father Christmas!

30th December 2006

30th December 2006
Lew in Ward 31, not very well

5th January 2007

5th January 2007
Ward 31 - playing with my lovely balloons!