There’s not really much I feel I should add to this post, other than explain that Neil had been pushing at me to join in the blog. I still can’t read this one without tears, perhaps because I know I was finally giving in to writing it as a result of being angry at Neil for ‘sugaring the pill’ with the joviality of previous posts and when I read this back I'm hearing myself cry for help. – Louise (2013)
Hi, I'm Louise, this is my first post for The Plattitude… as you can imagine, after Neil and Oscar, there's not much of my time left to sit down and write!
As Neil is explaining all the physical effects of MND, I thought I would concentrate on the emotional side. Rather than catching you up to this point, I want to share one of my strongest 'outpours' that happened one morning. Unfortunately, I couldn't think of a better place to send my ‘outpour’ than the Jeremy Vine show on Radio 2, where it was thereupon ignored. I promise to think of a better forum next time! Please read on…
"I am up and playing with my baby, we’re playing with stacking cups and watching the breakfast news while letting his daddy have another half hour in bed to sleep. Amongst the frivolous and the awful, there’s an MP explaining how he thinks the creation of hybrid embryos to help cure diseases is quite ethically and morally wrong. I wonder if he’s ever had to let his partner get an extra half hour sleep because her body is giving up. I wonder if he could take my place for a day. I'm hoping that today isn't like yesterday when I was trying to give my baby the encouragement he needs to crawl and looking my husband in the eye as he admits that yet another part of his body is lost and he can no longer hold a pen to write. I wonder if he could explain to my son for me that his daddy loves him very much but can no longer hold him. Or perhaps he’d rather take my husbands place and watch his son cry and not be able to pick him up and cuddle him.
Please tell this MP, that I don’t care about any of the facts that he didn't bother to mention during his air time, I'm not a scientist or a politician, I'm just a new mum who only had 4 months of joy before her husband was diagnosed with Motor Neurone Disease and I'm trying to muddle my way through motherhood knowing that I'm going to be doing it alone. Please tell him that I know there’s nothing that can save or even treat my husband, but there might be something that can save my son… if that’s OK with him.
Please tell him that if it's so important to him to get his name in the public arena, to comment on something that affects his own family, not mine."
Sam (Neil’s Cousin)
July 27, 2008 at 10:30 am
Hi, louise this is sam Neil’s cousin. I think you are the bravest and luckiest woman alive to have a wonderful husband and son.
There isn’t a day goes by where I don’t think of you all.
My eldest daughter really wants to meet you all after reading your blog and I must try and get over asap.
All my love to you all.
Jill, David, Evie & Taylor
July 28, 2008 at 10:36 pm
Hi Louise, I am so pleased you have put this on the blog, good on you, Keep it coming. You are doing an amazing job, all three of you. We love you all more than words can say, X
July 29, 2008 at 12:42 pm
Hi Neil and Louise!
I know you don’t know me very well, but I’ve met you both quite a lot over the years and Stephen keeps me in touch with how you’re doing. I’m so sorry about what’s happened, and I can only admire the way you’re dealing with it. I know it’s a bit of a cliche to say “if there’s anything I can do”, but if there is, please let me know, and I will try my best.
With lots and lots of love, Angela xxxxx
July 29, 2008 at 7:16 pm
Good on you Louise – You go girl!
Neil – I am glad you enjoyed your birthday and am just sorry we could not be there to join in all the fun and antics. We had a really good holiday – it was actually surprisingly relaxing – you know what our 3 are like!!
Can’t wait to see you all again. We are planning to come down for Oscar’s birthday but I think we are going to sleep in the tent in the garden – if that’s ok with you guys! The kids will love that.
Will call you soon
Love Sara and the gang x x x x x
July 29, 2008 at 9:26 pm
I knew that I should have gotten Tony to read this entry and tell me about it! Didn’t I tell you that I cry at insurance commercials?! You got me in tears! You are one strong lady — you two are the most noble people I have ever met. Kisses again from us. Look forward to seeing you soon! Maia sends her regards to Oscar and apologises for being such a diva.
July 30, 2008 at 9:19 pm
This blog is such a good idea. Michelle told us the amaizing job you and Neil are doing. We admire you both. You got me in tears as well!!
I saw Oscar’s pictures he changed a lot, he is a mixture of you both. I can’t beleive that Oscar can say “Oh look”, you should be really proud. Zafer is still in bababbbbbaaaaa stage. We will have a birthday party for him on the 16th of August, I am sorry that you can’t join us, we will miss you all.
cash & scoob
July 31, 2008 at 1:46 pm
Louise, well done mate, if only he had the slightest clue. Bloody MP’s in ivory towers, wankers. Sorry, it makes my blood boil too. I only had less than a week living with you guy’s and as you know I was broken after day 2. You’re super strong for everybody so you take care of yourself. Look forward to seeing you all this weekend. Cash xxx
July 31, 2008 at 7:48 pm
Well done for writing this, i think i saw the same guy on telly. Arse. Good that you put in in writing anyway, get it out there. We all know how amazingly strong you are and are equally baffled and stunned at how you manage. Tell Neil, from me, to stop being a lazy bastard, that might help :p
Give me a shout if i can help with anything this next week ok? See ya soon
August 2, 2008 at 12:25 pm
You may have heard of me, my name is Pete and I have worked with Neil at WGI since his arrival down south. I’ve said to Neil before that there’s a big hole in the office since he departed, he’s sorely missed and the place will never be the same. I really feel for you both (Oscar also of course) and was devastated to hear Neil’s tragic news.
Neil’s plight leaves me speechless at the best of times and your entry has just left me with the biggest lump in my throat and a numb feeling that I just can’t describe. Your comments are spot on and I hope that one day those who have the capacity will one day get their heads out of their backsides and do something to help people like yourselves. We all know that the technology is in place. My Grandad suffered with parkinsons for over 15years, so I can relate in some respects, although it wasn’t as close to home as yourselves.
There isn’t a day goes by that I don’t think about how Neil is doing and I wonder sometimes if there is a God (Sorry if this offends anybody!!).
I really admire what you’re both doing and your strength is astounding. As I said to Neil the other week, I’m sure you’ll be an inspiration to many others.
For what it’s worth, My heart goes out to you all.
Neil, if your reading this, keep strong mate.
Take Care all three of you.
Pete, Mary and Girls xx
Aunty Pau’s & Uncle Mel
August 7, 2008 at 6:13 pm
Hi you three, just to say when I spoke to you on Tuesday Louise that I had received email from Prof Chris Shaw and he asked me to tell you he admires how you are both dealing with this dreadful situation and he sends all his best wishes to you. Hope you got Neil sorted with something chocolate! Love to you all, Aunty Pau’s xxxxxx
August 7, 2008 at 9:24 pm
Hi Louise, Neil and Oscar,
Just wanted to let you know that I was chatting to Alison today (Reiki master) and she asked me to say hello and let you know that she is thinking about you all and that you are in her healing box!
Neil – nice to speak to you today but it will be so much better to see you in person and give you a great big hug.
Love to you all,
Sara x x
August 10, 2008 at 10:04 pm
Louise I absolutely agree… While I’m not living with the effects of a devastating disease (and I admire you and Neil so much for the strength and courage you both have in facing this) I have 2 friends/family members with MS and if I could donate my own stem cells or eggs or any other part of my body for research to help you goddammit I would do it in an instant.
Hope to see you for Oscar’s birthday but we haven’t quite figured out our plans yet…
Love, light and peace,
Alex & Janette
August 16, 2008 at 8:40 pm
Neill & Louise,
Did you ever think I would be stuck for words.?
Holding 200-300 enthralled after dinner is easy, but what to say to three such wonderful people is proving difficult.
How we wish we could do more for you and for our friends Rosie and John………….we feel a little hopeless.
Your strenght and fortitude is amazing not to say the physical effort of you both in very trying times.
Oscar will, in time , know what wonderful parents he has.
If Janette and I have shown to the world what fun, joy and love we have given each other in the last 45 years, it is but a fraction of the devotion and care that you have shown to each other in the 5 years or so you have been given.
Quality of life is largely out of our control, quality of time spent we can make the most of , but the quality of memories is totally with us to store away.
We have many happy memories of you both and will be on the team as much as we can be .
We look forward to the chance of seeing you soon,
but our minds are already full of those happy memories.
We will care for you all 5, for as long as we can ….
we too are mortal.
We love you all,
Alex. & Janette.
October 9, 2008 at 11:56 pm
I have only just discovered this blog. It is wonderful and it has moved me to tears. Nothing will ever ease the pain but it brings comfort to know how loved neil is by you and others around him and that he is in the best possible place.
I am struggling to come to terms with the facts and the rate that his MND is progressing but there isnt a day that goes by when i dont think of you all and feel angry at how unfair this life can be. A hard working, wonderful man with a beautiful wife and child and his whole life in front of him cruelly taken from the people that adore him. My thoughts are with you always and i agree that the comments from the MP are appauling.
I just wish he was able to take the place of our precious neil.
love always. xxx
Alex & Janette
November 7, 2008 at 10:42 pm
Since Oscar’s party I have thought of you all almost every day.
I ‘m proud to have known you, Neil, and will be around when there is something I can do, since I feel a little useless just at the moment,
from this distance..
Oscar is on to his feet, and you must be very proud of him……….a fine boy, but what else with you as Parents.
You have been tried, and not found lacking.
Not many can say tha. Louise and Neil , you are special.
I’m on your team and have happy memories of our times together.
I hope that ‘ happenstance’ will let us meet soon.
Warmest wishes……….Alex. & Janette.