Dear Neil

The following was written at the request of a national red top about a month ago. It was requested, then rejected as not the correct way in to our story. They wanted a ‘Save our Son’. The physical horror of MND combined with the lack of research funding was not deemed sensational enough.

I wanted to share this with the people who understand.

Dear Neil,

The day is coming nearer and nearer that will mark a year since you were forced to leave us. But you have not left us, and never will. Your bravery and humour during the worst imaginable months has brought us all a bond that is impossible to break. Oscar and I are supported so well by so many, I know that looking after us was your most hated part of having to let go. I hope you can see that we’re doing ok, and not to worry if you see me crying still, it’s only because I am remembering you.

You are still in our thoughts for so much of the day, some thoughts are welcome and some I wish I had no memory of. Most days I miss you because there is no coming home time, no chance for me to tell you about our day, what’s made Oscar laugh, what’s made him cry, new words or a lost toy found. There’s no hug for me at the end of a day of tantrums, no fresh face through the door to light him up like you used to for those four beautiful months before the first signs of any illness. He wakes me in the morning so full of energy, running toward whatever life has in store for him, and it fills me with memories of how you were before the wheelchair.

His favourite shout of the moment is ‘I did it!’ I wish you could see, the look in his eyes as he grabs my hand and pulls me with all his strength toward a scribble on a page or all his favourite cars lined up in a perfect row. I can still see you telling me ‘I can’t do it’. It’s there when I see him pick up a pencil or put a spoon to his mouth. I’m sorry, I know it’s not how you want me to remember you and it’s the last thing you would ever have said when choice was a part of your life, but I find myself holding on to any memory that lets me see your face. He insists on doing everything for himself now, it is both amazing and frustrating to watch him try. I now have to step back to give him encouragement, where I had to step forward to give you help. These parallels have not stopped. I am still lifting, bathing, dressing, feeding and wiping away tears, but these chores are now only part of motherly love and I no longer perform them with sadness and loss.

His time is filled with creating such mischief, and so cleverly worked out that it makes me wonder if you are whispering in his ear. I’m still truly sad we couldn’t give him a sibling to annoy with such a mischievous mind. You and he share almost identical choices with strategically placed cuddles for both devilment and gain. I’ve lost count of how many cuddles have left some of the lunch from his sticky little fingers on my clothes before I can wipe them, or are used as a vehicle to get nearer the biscuit tin, but he gives just as many real ones too. I remember when you could no longer give a hug and had to ask for one instead. I would lift your arm and wrap it around me for you, the saddest indignity of it all.

His hair is so beautiful. I remember sitting him on your knee, lifting your hand up to touch his hair, and how sad you were that it felt so rough to the touch of your hands with skin that had become as soft as a baby’s. I took some scissors to his fringe the other day, and there were your eyes. They usually look like mine until the thick brow is exposed, then for a few weeks it’s all you. They’re beautiful and they’re both his friend and enemy, getting him as many times on the naughty step as they get him off, and they are always betrayed by the curl at the edge of his mouth that gives away his true intentions, just like you. You would be very proud, and I have no doubt that his eyes would get the better of you though, and I would still be the one having to dish out the discipline all by myself if you were with us today. It’s difficult when they’re looking at me with fearful tears as I leave his bedroom, they are the same fearful tears I had to wipe from your face as you told us it was time for you to leave. I’ll never forget them.

I want you to know that parts our day have not changed, and I love that it makes me feel like you’re still sharing them with us. He still throws some of his breakfast on the floor, still spends a lot of time playing with toy cars, is still fighting with me about getting in the car seat, ‘No!’ is still one of his favourite words, and Iggle Piggle is still dancing around as we eat dinner. Best of all, he still gets the book you used to read to him every night till you ran out of breath. It’s one of his favourites. Strangely, he still kisses everyone on the forehead as he did to you, when the ventilator mask came between you. I’m sure he’ll sort it out before he starts kissing the girls.

Many have asked me how I cope, and the answer is very simple to me. I still feel loved. It is not choice behind the reason that you are not with us any longer. I just wish that you had not had to suffer the most torturous and undignified death. I’m carrying on your fight for better awareness of Motor Neurone Disease, and I hate that, because I too would rather not know that something so terrifying and cruel exists. I too would like to bury my head in the sand and take back the knowledge that there is such little research funding for something that can so quickly take a fit, healthy person and reduce them to nothing more than a body kept alive with no movement other than their eyes, frozen alive but with feeling in every nerve ending so that you can’t even escape an itch, feeling the weight of your body bearing down on limbs that can not move, aching with pain, and a mind untouched, left to work overtime. How am I to forget this?

I’m not sure how much longer I can carry on the fight. Knowing that you had a rare familial strain is what keeps me fighting now, but how much longer before he starts to ask questions and my time is up? I refuse to bring him up with fear. I don’t want Motor Neurone Disease bearing down on his shoulders. You didn’t live your life that way and you only have to watch him for five minutes to know that he has your lust for life and cheeky little spirit. He kisses your picture every night before bed and quite often tells me that you are ‘so happy’. Occasionally he tells me you’re ‘cute’. Stay in him.

I will love you and think of you always.

21 Responses to “Dear Neil”


  • Louise, I am thinking of you and Oscar today and sending you all my love and support. Laura xx

  • Thank you for sharing this letter with us. It still is so unfair. We love you, Sq.
    A.

  • Dear Louise & Oscar….I am at work, on the night shift.I always used to read the blog on a Thursday and I am so pleased to have a new post to read tonite.I have not looked as often as I used to, the memories proved too much at times, but I am so glad that you have found the courage to mark Neils passing today with such a beautiful tribute.Time has passed so incredibly quickly, the memories remain, the hurt doen’t seem to be healing that quickly. I am reminded by my boys that Uncle Neil is the brightest star in the night sky and that he is happy. Oh to be a child. Neil will be forever with us, his memory will never fade, I promise you that Louise. You too are a star and we send you all our love and hugs. Goodnight, godbless and sleep tight xx

  • Pauline & Melvyn Green

    Louise you are amazing your words have brought tears streaming down my face, your love shines through and I only wish Neil was still there with you and Oscar. Hope you were able to get him up to Arthur’s seat yesterday.
    You are both in our thoughts and only wish we could see more of you both.
    Love and kisses
    Aunty Pau’s & Uncle Mel
    xxxxxx

  • For Louise and Oscar,
    Remembering Neil and his strength and humour one year on, may his spirit and love live on in all of you, that you will never forget those good and happy times you shared.
    Special thoughts for Neil and all his family with hope that the good memories will get you through all the sadness and ease the pain.
    With love, from Danny xxxx

  • Louise this is beautiful. I am at a loss for words right now while I wipe a few tears away. Have been thinking of you all week and am sending you and Oscar all our love X

  • Dear Louise, you’re very often in my thoughts & yet again you’ve made me cry. I do so hope you are coping. I’m sure it has been a very long year for you and I thank you for sharing your thoughts with us. With love to you & Oscar and all Neil’s family x

  • I still have you as an IT favourite and think I always will. You have and will give our family strength in our own battle with MND, one that we know who will be the victor. Your anniversary brings us closer to our own ‘commencment’ but I read and re read your site and know that we are unfortunately not alone. ‘Frozen’ and forehead kisses and ……………… well everything is our life too thankyou for sharing yours. x

  • Louise,

    Thank you for sharing this with us. Every little bit of Neil is precious to us all and I grab at them when I can. Thursday was a good night and the laughs far outweighed the tears. I suspect his influence.

    Love,

    B

  • So wonderful to hear your words light up this blog again louise, both tremendously sad and astonishingly uplifting. You are right in that he will never leave us. Love to you both xxx

  • Beautiful letter spoken directly from the heart. My darling Louise and Oscar, thank you for sharing these words with us, a family of love, inspiration, dedication and pure determination. With all my love and support always, Caroline OXOX

  • Dear Louise and Oscar,

    Louise, thank you so much for posting this letter to Neil. Those of us who have followed along on the fringes of your journey have been thinking of you and Oscar, and sending love and peaceful energy to surround you in the continuation of your lives without Neil’s physical presence.

    Neil’s story, and the too many others like his, need no sensationalising as you have indicated – the reality of MND is sensational enough, and those who cannot see that are lacking in awareness and compassion, as well as being seriously misguided.

    If wishes were horses…there would be no more suffering and devastation of the kind that MND, and similar diseases,inflict upon unwitting souls. We are still so sorry for your loss, and hope, always, that the future is the brightest it can possibly be for you, for Oscar, and for all of Neil’s loved and dear ones. The fight continues – and in it you are not alone.

    Julie.

  • Lousie, I followed your blogs every day all 100 of them, and when Neil passed away I came home to my boyfriend and cried. After that I checked the site weekly as I felt a huge void in my day which is extraordinary considering we have never met. I am so grateful to you for finally having the strength to write and update us all on Oscar, life and how you are coping. I think you are a truly amazing mother and a wonderfully brave woman. Over the last year your story has always remained with me and I feel that Neil might have lived on in many more people than just your family. I had worked in the city for 10 years, and after getting up at 5am every day only to be pushed around by money orientated bullies, i finally decided to leave and prioritise my happiness. Neil once said when talking about the time we all have on this planet “Could you all do me a favour and not let yours slip by unnoticed”, and I can say with my hand on my heart that your story made me make those changes, so from a stranger in London, thank you x

  • Hi Louise and Oscar.
    Neil’s been a hero, for his family and friends.
    And Louise you are a heroine for Neil and Oscar.
    What a man Oscar will be with such wonderful caring loving and strong parents. You are now and always will be in our hearts and minds.
    You are truly an inspiration to everyone you touch.

    Love and best wishes for the future.
    buddy.

  • Cate and Ellie (Waterbabies)

    So lovely to hear from you both, I have been away this week but have had you both in my thoughts. As Ellie grows I often think of Oscar and how he’s doing…which ofcourse leads me to thinking about you.
    Know I am here if you ever want to trade Toddler tales!
    Love Cate & Ellis xx

  • Hello Louise.
    I just found this page – it’s the second anniversary of my Father’s death from MND. I wrote him a tribute, which if you like you can see here:
    http://benralston.blogspot.com/2010/05/tribute-to-my-father.html
    I know the pain you feel in your heart, and the emptiness you feel at your core. I acknowledge those feelings with all my being.
    With love,
    Ben Ralston

  • Hi Louise, we have decided to add plattitude and MND will be one of the beneficiaries of our new charity cricket club. Feel free to take a look! http://www.stjamescricketclub.co.uk hope you and oscar are well x

  • Hello Louise,

    I have read this blog as i am in a similar position to you. I have a beautiful boy he is two…and a wonderful partner that has got mnd. He is 30. A year has gone bye now and things really are getting tough! Not many people would know how tough..but after reading plattitude I somehow feel comforted to know somewhere somehow someone may understand how it is…

    Kind regards
    Sue

  • Yet another year has passed, but Neil, you remain very firmly in our thoughts. We miss you terribly, the tears still flow. However, there are so many people continuing to raise funds and awareness in tour memory. Louise and Oscar, we send you much love and hope that time makes life more bearable. Neil, you cannot be replaced. Miss you still…. Rick, Lula, Jenson & Jake xxx

  • Hi Louise

    I stumbled across your website from following Platt’s Bar on Twitter. I’ve sat here in tears reading your beautifully written letter. I’m so very sorry for your loss. It’s immeasurable, your pain – unending, but with your bravery, the support and love of your friends and family, the things you do to raise awareness and funding to support the research into this terrible disease will make a difference to someone, somewhere. I wish you all the very best of luck, happiness oh and blister-free feet on your trek across the Great Wall! I was lucky enough to walk a very small part of it a few years ago – it’s an incredible, beautiful, awe-inspiring place, I hope you enjoy it as much as i did.

    All the best.
    Tracey x

  • Hi Louise,

    I am so inspired by your everything you have done in response to that horrible disease & its impact on Neil, yourself & Oscar and, I’m sure, many other family & friends. Like so many, oh so unlucky suffers, he seems to have been a great guy ( with whom my virtual pint will be very special, tho really quite emotional – in memory of my mum).

    Being so “close” to MND, I know many others who’ve also been inspirational; but yet again, so strong & unifying is the spirit of MNDA Team – Every one of us joined in the battle- I am filled with fresh inspiration by your own story & vigour.

    Congratulations on the Great Wall Trek- a great achievement! Well Done,

    Many Thanks for being so inspiring

    Best Wishes to You & Oscar

    Ray

Leave a Reply