If goodwill heals...

And I’m sure it does.

Hey there everyone,
My own experience tells me that without the goodwill of my loved ones, it’s highly likely that I would have succumbed to my condition a considerable time ago.  It is only with their support and encouragement that I am galvanised into action every day with positivity, without it I honestly think that the frustration and disappointment would better me into submission.

If the messages of support we have received for my auntie Margaret have similar healing properties, I dare say that she will be skipping out of hospital in the morning. Her current situation is unchanged from yesterday as she is still awaiting the appropriate scans. Again, no news is good news.

Our life here at home continues unabated. Louise and her mum are quite frankly superwomen. Considering the fact that I am as dependent as ever, Oscar has been fitted with a supercharge button, the recent snowfall has prevented some of the visits by the palliative care team and Marie Curie daycare nurse, and supermarket shops have to be done on foot, they are managing admirably. Actually I have just been corrected by Louise that they are not superwomen, they are bionic women on account of their having assorted body parts replaced with synthetic versions!

As far as my condition goes, there is little change. The last two days have been surprisingly good as my swallow appears to have maintained its strength and I have felt rather energetic, relatively speaking of course. This is even more surprising when you consider that my ventilator pressure has been inadvertently set lower than the usual 18 cm.

Oscar continues to amuse with his ever-increasing speed around the house and his expanded vocabulary. It is fairly safe to say that he has his Granny Rosie run ragged, especially when you bear in mind she has been at our funny farm almost constantly since Christmas (she sends her love to Johnnie at home in Edinburgh).

That’s about it. Until tomorrow.
All my love,
Neil x


Our friends had used up every piece of holiday time they could from work and it had been getting harder and harder to fill the calendar with able bodied helpers. After a certain point in Neil’s progression, possibly after the introduction of the ventilator, it became difficult to let more people into our lives. There was so much to learn about equipment and emergency procedure that I didn’t have time to pass on. Some friends and family came purely to help look after Oscar and cook and clean, leaving me to concentrate on Neil. Others knew how to help with Neil’s equipment and ventilator, and would sit with him, giving me more time with Oscar.

My mother, Rosie, had given up her job and was now with us on an almost permanent basis. She had to leave my Dad, who was still working at the time, and life at home in Edinburgh to stay with us for an unknown length of time. Nobody knew how long Neil would live. The Palliative Care Consultant at the hospice took me aside to say to me she thought it was a matter of weeks rather than months.

My mum didn’t want to leave me after Christmas, and I’m forever grateful she was there. She had to see the fights and the bickering, the tears and heartache and just as there was nothing I could do for Neil to take away the pain of the situation, she felt the same for me.

My mum and I have now been through so much more together than mother and daughter should have to share. I don’t think there’s anyone else who understands exactly what I went through, and although I wish we had never had to share such a painful time, I know it’s brought us closer together.

My mum and Oscar now speak a language together that even I can not understand sometimes, such is the strength of the bond between them because of this time and the help that I needed as a bereaved single parent after Neil had gone. Oscar knows exactly how to wrap her round his little finger and, although she denies it, I know she wouldn’t have it any other way. – Louise (2013)

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commented 2013-06-01 16:36:21 +0100
Comments on Neil’s original post:

Lu
February 5, 2009 at 8:52 pm
Hi back again, with regards to that speedy oscar he reminds me of the duracel battery rabbit! don’t children bring so much joy
night night LouMc

Màiri
February 5, 2009 at 9:07 pm
to uncle neil thank you for the present. I am going to biy a nintendo d,s with it. love you.

love màiri.

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Alex Somerville
February 5, 2009 at 9:12 pm
Good to hear you four are ‘coping’ with being snowed in! Here in Edinburgh we are snow free! Rosie.. John(nie) is bearing up, we are looking after him at School…. cups of tea (1 level tsp of sugar and a little milk!! his words not mine), school sandwiches and the occasional biscuit seem to keep him going.
Neil, hope your Auntie Margaret makes a good recovery. Alex bumped into Nathan Ward today in Princes Street(same year as you at ECA) – he sends his very best wishes.
As always are thoughts and love are with you all.
Marian and Alex x

Bryce
February 5, 2009 at 10:27 pm
Hi Neil
Very sorry to hear about your Auntie -I hope she recovers soon and your luck soon changes for the better mate !

We have just got back from looking for our (take 508) retirement place and with dubious success Jane has found an island off an island off an island mmm….(full of hairy arsed welsh men -not that I have anything against hairy arsed welsh men or hairy arsed english men or ..etc -oh its just getting worse!! About as far from the mainland as you can bloody get. If it was any bloody further it would fall into the sea! I think this is an evil plan to keep me away from alcohol and temptations of the flesh (they have to be imported?)or maybe she has some plan to push me off the local cliff to get the embarrassingly small life insurance I purloined from some dodgy bloke one dark night whist working in soho square a few years ago!

Anyway were back now so would love to come see you this weekend if ok?

All our love
Bryce & Jane xxxx

Stephen
February 5, 2009 at 10:58 pm
Hi Neil,
Good to hear you’re feeling sparky. I’ll be seeing you on Saturday by the way (completely forgot to let you or Louise know- sorry!). Anyway look forward to it and I hope there’s snow!
Love Murph.

Nathan Ward
February 5, 2009 at 11:10 pm
Hi Neil, remember me… Nathan from ECA?
Bumped into Alex Sommerville at lunch time, he pointed me in your direction and let me know about your MND. It seems along time ago since we were all at ECA. Its good to hear you and Louise got married, and had wee Oscar he sound like a great lad, and your family are obviously being fantasticaly supportive.

Just wanted to drop you this note of support to let you know im thinking of you.

Cheers

Nathan

ann
February 5, 2009 at 11:26 pm
Hi Neil, Louise and Oscar

Glad to hear you sounding perky again!!Sorry to hear news about Auntie Margaret and look forward to hearing something positive there too. Peter has arrived back from Paris Disneyland…looks much the same even though he was completely dehydrated….’ I am not paying £5 for a glass of coke!’ Am sure that won’t surprise you!! The 6th form enjoyed the trip apparently…..apart from the ferry journey there that is! He had to dispense his travel sickness pills with largesse.

Daniel and Oscar seem to have a lot in common at the moment, enjoying the snow for the firts time. Dan has never had so much snow around home and has had a great time building a mountain and sliding down it in the snowboard he has made from a skateboard (chip off the okd block??

Well night night!

Thinking of you often!

Love Ann

Michelle Htun-Kay
February 6, 2009 at 9:38 am
We hope your Auntie will get the all-clear and that she’ll be released from hospital soon. I can imagine Oscar as the Roadrunner through the house. Maia still doesn’t know how to clear corners quick enough yet so we frequently get clop, clop, clop, boof, silence, big belting cry. Love and kisses, M.

Elizabeth Wight
February 6, 2009 at 2:09 pm
Hi Neil again!

Reading the mails from back to front gets things out on sync…no it doesn’t, I usually do things a..for e…..!
Sorry to hear about your Auntie Margaret…Poor Lynne could do with a bit of proverbial sunshine! Don’t let’s forget her in all of this!
Well, messages get around, I join with evryone wishing both sisters well, in their respective cases! My rant, chant whatever….I’m ‘studying’ Ravel’s Bolero…with a view to playing the incessant drum part in the background (in our next concert in May) 338 identical bars (quite slow) then bar 339 id different amd bar 340 Bang! It’s quite a challenge for me – quite new to percussion – so as I play it, I’ll dedicate it to you, your Mum and Auntie Margaret! Bet that’s made your day!!!!! Liz xxx

elizabeth wight
February 6, 2009 at 2:11 pm
‘scuse the mis-typing etc. the light’s bad in this room!

Peter Stokes
February 6, 2009 at 5:16 pm
Hi Neil,
Thanks for the news and entertainment. Please could you let me know where I can order some sythetic body parts, sounds as though they may make excellent Valentine pressies.
PS Hope Ann doesn’t read this message!

Peter

Peter Stokes
February 6, 2009 at 5:19 pm
synthetic, synthetic, synthetic (spelling corrections!!!)

Graham Ross
February 7, 2009 at 11:40 am
Hi Neil,

Following his encounter with Alex Sommerville in Edinburgh on Thursday, Nathan contacted me to let me know about your MND and pointed me in the direction of your website.

The posts and responses on your blog are testimony to your spirit and the fantastic support from your family and friends.

So this is just a short note of support for you, Louise, Oscar and those closest to you – my wife Siobhan (also ex ECA) and I are thinking of you.

Kind Regards

Graham
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