There’s been so much that I've wanted to write recently, but not got round to it. I've been taking some photos around the house for some time now, and meaning to post them, as I think they can say a lot, whereas, I just don’t have the time or energy.
Some of these photos seem so old now. I just wanted to share them as I think they best describe some emotions which are unimaginable to most.
Daily Meds. Don't underestimate the straws.
September. July, August and October look pretty similar
Fridge magnets. Some baby photos, kids drawing, Oz's swimming certificate
and a whole bunch of emergency numbers.
Our bedroom. I rarely sleep in the single bed, it's usually just for sitting on.
Again... our bedroom.
Our bathroom. Months ago, before the commode and bed baths.
Oscar now has a bit more space.
Our toilet. All three.
This is why I'm tired. This is why Neil is banged up in Hotel California for a couple of weeks.
I have to admit that this was another cry for help.
Neil's writing on the blog was, as ever, of a humorous nature, and I needed to feel like I was telling the real story. I knew, back then, that there would be a need for these photos if we were ever going to raise awareness and show exactly how much care and attention a person living with MND needs. Neil and I knew we were lucky, with so many willing friends and family, we knew our situation was made ten times easier with their physical support. They helped me lift, clean, cook, feed in an endless circle.
The disease isn't any easier on people who don’t have this level of personal support. We both felt like we had to shout about that. I didn't have the time or energy to do this with words most days, so I started to take photographs. But the day I published this, I was using them to shout selfishly. I just wanted to counteract a bit of Neil’s humour and say, ‘it really is this difficult.’ – Louise (2013)
Lisa & Richard Stefanski
November 11, 2008 at 11:10 am
Tough job Louise…but you are doing brilliantly…
Aunty Pau’s & Uncle Mel
November 11, 2008 at 2:30 pm
Louise you don’t know how much Uncle Mel & I admire all that you have done & are doing for Neil plus looking after that gorgeous son Oscar. He really is a credit to the pair of you. I just wish that while Neil is away at ‘Hotel Calafornia’ you could actually manage to get some rest and much needed sleep. We both hope that things do get clarified for Neil when he decides when how & what it really shouldn’t have to be like this there is enough for you all to contend with! If there are any more meals to be cooked just let me know – it is no trouble. All our love Aunty Pau’s & Uncle Mel xxxxxx
Jane and Brian
November 14, 2008 at 2:25 pm
Louise, your spirit and strength shine through here, even when you are too tired to say it in words. Really, a picture can speak a thousand words. Thanks for having the courage, strength and generosity to share your lives with us all this way. It’s an honour to have a peak in to the challenges you both face.
So wish I was closer to lend a hand. All I can do is lend sympathies and my thoughts for you both.
All my love,
November 17, 2008 at 12:44 pm
You deserve a break!! Get some rest, or as much as Oscar will allow, anyway. I honestly don’t know how you’ve managed to cope for so long without respite care.
Hope to see you all soon, and hope you had a good anniversary… I can hardly believe it’s been four years now!
Love, light and peace,
December 9, 2008 at 6:17 am
Hi Louise & Neil and Oscar!
It’s hard to take in that all this has happened in ONE year.
Your courage and cheerfulness in such advertsity is too admirable for words. My whole circle of friends wish you the best…I am regularly asked how you’re doing. Their admiration tacks on to mine!
You know to give me a shout if there’s anything I can do…anything!
Lots and lots of love to the three of you.
‘Auntie’ Liz xxx
December 17, 2008 at 4:31 pm
Dear Neil, Louise,and Osca, I have been deeply moved by your letters.My daughter Kate Asked a friend to help with fund raising as my son in law has MND and was told of the snow challenge to which they had already gifted to.I thought I was reading the story of my youngest daughter Sophie, her darling husband David and their 20 month old son Geordie.David was diagnosed earlier this year and life for them is as it is for you.Davids friends have stated a charity The Heaton-Ellis trust a Davids brother and Aunt have lost their lives to this dreadful illness.We will do all we can to make sure what you are going through will not go on through generations. God bless you Jo Cook
December 20, 2008 at 12:38 pm
Dear Neil, Louise and Oscar, This weekend Watership Down polo have organised a tournament for The Heaton-Ellis Trust and all proceeds are to go to the charity. Together we will find a cure. Love Jo
January 20, 2009 at 8:26 pm
Hey Neil!! You and I have got the same green-capped pish bottles. Does that mean we’re in a club of some sort? Ricky Callan x