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Thursday, May 03, 2007

Sad

Despite trying very hard to pretend everything is okay, even if just for a little while until the tests at Sheffield, I am finding it increasingly difficult not to feel incredibly sad and to cry at the slightest thing. Today I cried while having my eyebrows waxed by wonderful wonderful Lizzie, and luckily I had a perfect excuse - the waxing had made my eyes water. James and I, and Samuel - we love Lewis so so so so much and it is the hardest thing in our entire lives to know that there is nothing we can do to make his life better, to make him walk, talk, eat like other children his age. While I was just uploading some photos from the camera on to the computer I found some old photos from our holiday in France in 2005. To say I was heartbroken is an understatement - photos of Lewis walking, running along the beach, kicking a ball, digging in the sand and making sand castles. It is (insert swear word here) devestating. Lewis is the happiest, smiliest, sweetest natured little boy you could EVER wish to meet, everybody who meets him absolutely adores him - he steals hearts every day. And for all the happiness he brings us, and others - we cant give him his abilities back. Nobody can. Today he had a lovely walk around the lake with Jayne (Homecare) while I went to visit Karen and Craig and Heather. Then we went to Lizzie's (for my waxing) and then we came home to a full house - Samuel off school because he hurt his leg and wrist running yesterday round the lake, Steve in the kitchen gutting fish and preparing them for dinner tonight and Janette (physio) came to measure Lew up properly in his Monkey Stander. Olya and Illya popped in too and then we walked round the lake to collect Natasha from nursery and Lew was able to visit his old friends at Building Blocks. I had a quick word with Tina (who runs the nursery) and as Lewis is now 3 years old and gets funding, we are going to see about Lewis going for a couple of hours a week to catch up with his buddies. This evening we all had tea together - Steve and Van, Nicky and Jay, Samuel, Miss Jodie (who came after nursery), James and I. Lew watched Cbeebies on the sofa. We had the fish!!! I must say it was delicous! We had to save the tails for Olya - apparently it is a Ukranian tradition that the tails of the fish were given to young ladies to give them luck with meeting young men!!! After tea, we put Lew to bed and Steve and Van went home to put Nicky and Jay to bed and then Van and I had a brisk walk to the polling station - I hope you all did your votes!
Thank you so much to Van, Steve, Nicky and Jay for the lovely Guardian Angel for Lewis - we will treasure it. And thank you to Renu for suggesting it xxxx
Thank you Katie Plant for Lewis lovely stickers and fab Postman Pat DVD - he enjoyed watching it this morning and he loved looking at the stickers. Thank you also for the card you send him every week - we put them up in the playroom to make it bright and interesting xx
Well, we hope you enjoy the photographs. Please do remember, dont take your children for granted. And remember to love every minute of them - they are so precious.

5 comments:

Lucy said...

:-(

xxxxx

The Pettifers said...

Kisses, cuddles, love xxxxxxxxx

Anonymous said...

All our love to you all Sam. We send you a huge hug and kisses xxxxx

Anonymous said...

:(
Been thinking of you guys lots today...
words kinda escape me, but take care...
lawsey x

cheryl said...

hi Sam

Just to let you know i have sent you an email about the bbq.

Thinking about you all

cheryl

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!