I slept like a baby on the other hand...

I-am-breathing_hands320.jpgHi everybody,
I was there yesterday evening with Louise as we read the comments on the Daily Mail article. At first, I did feel the hairs on the back of my neck stand up and muscles in my dead arms want to throw the laptop across the room. Then I looked down the list of comments than they realise that the proportion of comments which accused me of being inconsiderate and selfish for bringing Oscar in the world were far outweighed by those condemning such a viewpoint and offering kind words of support.

It also occurred to me, that I have never discussed this issue with you, so any criticism offered is being done so from a position where you are all not in possession of the full facts. Louise has already given you her viewpoint, but as you can imagine our reaction to things like this are quite different, which is not to say either is right or wrong.

The basic facts are as follows. Firstly, the death of my grandfather and then my father could not be proved to be a hereditary strain of the disease due to both a lack of genetic material and the fact that technology for comparison if there had been was nowhere near as sophisticated as it is now. When I was about 22, I went to see a genetics specialist who offered to take on my case to source genetic material from both Grandad and Dad. After six months of research, the specialist came up blank. All he could offer was a 50-50 chance that I would carry the same defective gene which led to motor neurone disease in my father and grandfather, and even that was a guess.

At this stage in my life, all I had was essentially a flip of a coin to base every life changing decision on. I made my decision instantly. [What are] the chances of being hit by a bus, contracting cancer in its many forms? As it happens motor neurone disease does not even appear on the top 10 diseases killing men in the UK today. It’s most likely that lack of this knowledge prompted some members of the public to respond as they did in the Daily Mail article. In addition to this, the familial form of MND is much, much rarer still than the sporadic version. The decision I made was to live my life to the fullest, to work in my life the hardest, and to love those I love in my life as deeply and powerfully as I could.

So, the next question would be do I resent my parents for my birth and the 34 subsequent years of enjoyment? What do you guys think? No, I do not.

Did I wish that this had been inflicted on Louise? Of course I did not. I could no more have guessed that this would be our ending no more so than I could have known that party would be our beginning.

Oscar. We spoke before our marriage about the prospect of raising a family, where two people had suffered with MND. We decided that our family was more important to us than trying to play the odds in a game where no one knew the rules. He is guiding light through these difficult times. Will he miss me? I hope so. But we have the closest, most loving families and friends that he will want for nothing.

So do I regret our decision to have Oscar? I would do it exactly the same a thousand lifetimes over.

I hope this clarifies my reasoning to those who question it. If not then please ask any other question you may have.
Much love,
Neil


We had come to realise that our story was more interesting to the newspapers if it were a ‘Save Our Son’, something that I have never been comfortable with and come to regard as lazy journalism. I even had one newspaper ask me to write a letter to Neil in the run up to the first anniversary of his death, which was very emotional for me but I wrote it, and then the editor deemed it not newsworthy unless it took the form of a plea to save Oscar.  If the journalists dug a little deeper they would realise that the physical horror of motor neurone disease combined with the lack of research funding is sensational enough to sell papers on it’s own, at least it is in my eyes. Thanks to I AM BREATHING, our story now has another way of generating interest and highlighting the disease.

I clearly remember the discussion that Neil and I had about children. His grandfather had died aged 60, his father had died aged 50. I posed the question to Neil, ‘If you knew you were going to die aged 50, would you ask never to be born?’ That was all we had to go on before Neil was diagnosed at 34.

I-am-breathing_Oscar640.jpg

I can only raise Oscar free from fear as I would if motor neurone disease didn’t exist. If he ever were to develop the disease, and there were still no treatment or cure, I would hope that he would recognise and feel comfort from the fact that both of his parents made a huge effort to change that prognosis for him. I would hope that in documenting his father’s bravery, it would give him the courage and to face it with a similar outlook. Anyone reading this blog from the beginning knows how much the anger and disappointment sat side by side with love and laughter.

Oscar is privileged to have such a documentation of his father’s attitude toward life and the love he had for his son and all those around him. With regard to motor neurone disease, I can’t arm him with anything better... yet. – Louise (2013)

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Showing 3 reactions


commented 2013-04-19 16:06:01 +0100
These were the original comments on Neil’s post:

Nigel Casson
January 8, 2009 at 1:06 am
Totally agree with you Neil and admire your control not to be bouncing F,s off your critics, Keep up the strength you three Regards Nigel……….

Siobhan
January 8, 2009 at 1:08 am
I am always amazed at the ignorance, cruelty and plain stupidity of some people in this world. You guys are an inspiration and have nothing to feel bad about. By opening up your lives at this time you are providing an education for people like this and I am sure it is getting through to the majority, so the minority need to be ignored- especially this lot of complete planks. Glad to hear you are still rising above it all Neil and keeping positive- you’re amazing. Happy New Year and much love to you all x

Mark Glover
January 8, 2009 at 1:09 am
Well said, Neil
Very best wishes to you and your family
Mark

Aunty Pau’s & Uncle Mel
January 8, 2009 at 1:10 am
All I can say is that you are one hell of an amazing nephew and we love you to bits and if I could change things for you I would. I am just so sorry that this has come from my line of the family. God only knows where my Dad got it from and I feel that God has a lot to answer for inflicting this disease on anyone. I really don’t know where you find all the words from but keep on doing it.

Love Aunty Pau’s & Uncle Mel xxxxxx

Kate Beddow
January 8, 2009 at 1:11 am
Neil, Mum told me of your situation after seeing your article in the local paper before Christmas and I’ve been trying to find the words to get in touch but this post has really touched me. I am now overdue with my second baby but this time last year had just undergone life changing surgery and was told I would never have another baby. Fortunately the tumour I had and condition I have is not thought to be hereditary (I pray every day they are right). Would I knowingly put m children through what I went through, no of course not,but like you my daughter, Laura, kept me going through the bad times and I’m sure is primarily responsible for me coming out the other side relatively unscathed. I appreciate that our situations are very different and I am so sorry that fate has thrown this at you and your beautiful family but you are as entitled to a happy life as anyone else and anyone who says differently hasn’t looked at death to know how scary that is and then looked into the eyes of their child.

I wish you strength and love and I know that Oscar will love you and miss you deeply but will be as grateful to you as you are to your Dad and Grandad for making him the person he is.

Lots of love sweetheart,

Kate x

(Katherine Smith)

Angela Burton
January 8, 2009 at 1:12 am
Don’t let the negative comments prey on your mind. There isn’t time for brooding on them. You will find similar comments on many sites concerned with different people who have different hereditary or genetic illnesses. It’s just a form of a eugenics argument that is out there. But don’t take it as the truth or let it rob you of the quslity time you have left to fill your mind with all the good things of being alive with your beautiful child and lovely wife. You did the right thing in having Oscar as did your parents in having you. Let the negative points of view go and don’t worry about them anymore. Wishing you well xxx

Gill
January 8, 2009 at 1:13 am
Rant begins.

Neil, Louise, Oscar…

I think you are being very kind to some people who, to be honest, do not deserve your understanding! I found those comments absolutely abhorrent and can understand why you found them upsetting. It makes me intensely angry that some people seem to think they have the moral authority to stand in public judgement over the difficult and heart rending decisions that others are forced to make, and choose only to point the finger of blame where they should instead be providing moral support and empathy.

I wonder how many people each year decide to have children in the full knowledge that there is a family history of heart disease, cancer, or other condition where there is a strong and proven genetic link? And for those of us who don’t know what our medical future holds, should the risk that a child might develop a medical condition at some point in future prevent parents from having that child? Absolutely not. The logical extension of this point of view is the genetic screening of all aspiring parents, which is surely just a short step away from a Nazi-style breeding programme!

I for one consider it an honour to be part of your wider circle of friends, and in particular to have been introduced to Oscar, who is without a doubt the happiest and most contented little boy I’ve ever met. We keep a photo of him on our mantlepiece and he makes me smile every time I look at it. He is a real ray of sunshine. Louise, whatever the future brings, don’t ever question your decision to have him, and don’t allow the bigoted opinions of a minority of Daily Mail readers to get to you. You have a strong circle of family and friends who will always be there for you both – I wonder how many of those small minded idiots have such an abundance of love in their lives?

Rant ends.

Loretta
January 8, 2009 at 1:14 am
Well done matey, you’re fantastic, very well said xx

ann
January 8, 2009 at 1:15 am
Hi Neil and Louise

Sorry to hear you are worn out by visitors! Hope you feel up to seeing us again soon. Eleanor is going to pop in with some photos which will give you a laugh!

I was upset to read about the comments on the Mail on line. I have been on and added one of my own and down graded all the ignorant ones into the bargain.

I have great admiration for both of you and have made it my mission to tell people about the blog and fundraising so that the understanding can spread.

You are both lovely intelligent people and have created a lovely intelligent son. I am very proud to know you.

Neil, I have known and loved you for a long time and you have always been and will always be a star.

Louise, you are wonderful….please ignore all the ignorant people and wrap yourself in the love that surrounds you.

Hope to see you soon. Big hugs.

Love Ann

timspeechley
January 8, 2009 at 1:15 am
Hi, I too was shocked by some of those views forget those pricks.
Sue and I were so glad you got in touch, it was great to spend time with you regardless of the circumstances and quite wonderful to find you pretty much with same humour and spirit as ever. Your a brave dude. With a beautiful heroic wife like Louise (i wish i had more time to spend with her) your clearly in safe hands.My sister spends most of her time raising money for various charities and she’s very good at it. She has promised to take up the cause later in the year people round our villages in Cambs can afford it and will want to help. Im working in Brighton on a play with Christopher Timothy and a host of other luvvies (very dull).
Hope I can get back to bother you more soon. LOL Tim.

Jane Clapshaw
January 8, 2009 at 1:16 am
Well said Neil, when Dean & I started our family, we were concerned that they may be born with spinabifada, Dean’s aunt & uncle lost a number of babies, before the birth of their little girl, born with this condition, who unfortunately passed away at any ealier age, but they wouldn’t of changed a thing, also his brother & girlfriend lost 2 babies, also diagnosed with spinabifada. Victoria & Lewis are our life, and we think ourselves very lucky that they are perfect. you only get one life and you have to make the most of it, Louise, don’t loose any sleep over these ignorant people there not worth it. your are all very brave and I am sure Oscar is and will always be proud of his MUM & DAD

take care
xxx

Elaine Lewis
January 8, 2009 at 1:17 am
Hi Neil, Its taken me a long while to get the courage to reply to any of your blogs, but after reading some of the comments about you having Oscar here I am. I am a distant relative of your fathers,my name before marriage was Elaine Myers David & I were close as children & teenagers, but as time went on we lost touch, I last saw you when you would be about 6. I do remember your grandad fisrt becoming ill, & how difficult they found it to diagnose the illness, as for David I didnt know he had inherited it until I was told of his death, but even then I dont think anyone one have predicted you would be in this situation let alone so young. As for Oscar who’s to say he will be in the same situation if the experts don’t know, we all have to be given the chance of life and happines in whatever form it takes us. I will continue to read your blogs & have nothing but admirations for you & Louise for your courage & determination.
Love Elaine.

rick nicholls
January 8, 2009 at 1:18 am
Neil and Louise,

I don’t understand people who think like that, in fact I don’t want to. As you say we shouldn’t determine the way we live our lives on just maybes. I would like to say I’m one of the luckiest people to have spent time with you peeps before Oscar existed, when Louise found out she was pregnant and when he arrived (well not literally)! On top of that I think you are the best parent’s I know, that boy is loved. Thank you for bringing him in to the world.

Lots of love Cash xxx and a big X for Ospants

Lorna
January 8, 2009 at 1:19 am
Dear Neil & Louise,

You have just made me cry with your latest post Neil. As others have already said, you are being incredibly kind to those who have criticised you and Louise in the most abhorrent and cruel way, but I am so glad that you are looking at this in such a philosophical way – a wise man indeed.

On a slightly different note I had more of a look around your site and came across your wedding photos – my goodness what a gorgeous couple – you are both stunning – Oscar will be a heartbreaker with a mum and dad with such good looks!! Thank you for sharing those photos with everyone reading!

With love and kindest wishes,

Lorna xxx

Danny Milner
January 8, 2009 at 1:50 am
Hi,
I think you did the right thing taking those cruel comments off your site, you get one remark and the others simply jump on the bandwagan and add more unwanted,unnessesary very hurtful commets.
No-one ever knows what genes may be carried on to children, there are literally 1,000′s. I am adopted…. and I know nothing about my parents, this is especially so of the father’s background of many unmarried mothers [as I am]! Although research into any familial or hereditery background is now more available, who can ever really know what may be carried on from one generation to the next!!
Please both of you put those remarks of your minds, you are doing a brave and wonderful thing, raising awareness of this terrible disease and people should realize it is never easy for even the best of us to decide what should be done if faced with the dilemma you had regarding having children. No-one ever knows until they are faced similar circumstances!!!!
Anyone who knows you both, knows you are not in any way a selfish couple, but decent human beings wishing to give Oscar [and many others with MND] a chance to cure and conquer MND for good.
Love to you all,
from Danny and Mum Sue xxx

The Jenkins!
January 8, 2009 at 1:24 pm
Hipster, Louise and Oscar,

Although we are rubbish at keeping in touch, we think and talk of your plight all the time and always read your blog.
Never forget that people have children for all sorts of reasons some selfish, but in your case a desire to share an amazing, loving marriage with a family. There is no finer reason.
None of us know what kind of lives our children will have, but we go ahead anyway because life is worth it!
You guys are fighting the good fight for your family and fellow sufferers now and in the future. There will always be hateful, judgemental idiots. Get some rest and keep going! I hope you can hear us cheering you on!
We are humbled to know you both.
love
Kate, Steve and Lois

em
January 8, 2009 at 11:48 pm
The world needs more wonderful wee Oscars…it’d be such a better place for it. Should such bigoted Daily Mail readers be tested for dunderheid genes though ?

Please don’t let them hurt you or stop your fantastic campaign to communicate !

xx

Elaine Lewis
January 8, 2009 at 11:49 pm
Hi Neil, Its taken me a long while to get the courage to reply to any of your blogs, but after reading some of the comments about you having Oscar here I am. I am a distant relative of your fathers,my name before marriage was Elaine Myers David & I were close as children & teenagers, but as time went on we lost touch, I last saw you when you would be about 6. I do remember your grandad fisrt becoming ill, & how difficult they found it to diagnose the illness, as for David I didnt know he had inherited it until I was told of his death, but even then I dont think anyone one have predicted you would be in this situation let alone so young. As for Oscar who’s to say he will be in the same situation if the experts don’t know, we all have to be given the chance of life and happines in whatever form it takes us. I will continue to read your blogs & have nothing but admirations for you & Louise for your courage & determination.
Love Elaine.

Margaret Purdey
January 11, 2009 at 12:20 pm
Dear Neil and Louise, and Oscar
We hope you can hear us cheering you on from Australia. Last time we met it was at Kate and Steve’s wedding (have to say I thought my speech was the best though), so it’s been some time and so much has happened since.
You’re a wonderful bloke – the Daily Wailers haven’t a clue.
Bless you – all three of you. We’re thinking of you.
Love
Margaret, Chris and Lewis in Melbourne

Kelly Carrotte
January 16, 2009 at 9:51 am
Dear Neil, Louise and Oscar,

hi, I am a friend of Jill Woolin. We met through the first time mum’s group when she had Taylor and Evie and I had my son Matthew. I have heard all about you through Jill. I remember when she first told us about what was happening to you when we were sitting at playgroup in the Salvation Army in Gawthorpe. This was before the diagnosis had been made. It was clear how much Jill loves you and has become increasingly apparent as she has relayed news and stories to us all over the months since.

Reading your blogs has been very emotional and I cannot believe the narrow mindedness of some people who feel that they have the right to criticise you for bringing your beautiful little boy into the world! Nothing in life is ever certain so how could we possibly go around living our lives based on what is in our genetics? My family history is not cracking I have to say, my mam died at the age of 46 when I was 20 years old. She had been suffering from Crohns Disease since I was born and we all had to witness her deterioration over the years. Her mother died in her 50s from a muscle wasting disease where she gradually lost all physical functions. I am not after anyone’s sympathy in saying this, my point is that although no’one has proven any direct genetic link with these illnesses, no’one has ever criticised my decision to have children. Why is this different? You could not have been sure and how can anyone question your right to live your lives to the full?

None of us can be sure of how long we have. My brother in law died suddenly and unexpectedly at the age of 18. This kind of event makes you realise that it is spending time with family and friends that is important. From what I have heard from Jill and read on your website, you all have one of the best sets of family and friends you could ask for. I hope that you can continue to enjoy them together for as long as possible. I applaud you on your efforts to raise awareness of MND and would like to support you with this.

Best wishes from me and my family, Paul, Matthew and Abigail.
Lots of love, Kelly xx
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"I slept like a baby on the other hand..." Neil's response to Louise's #Plattitude post #MND #ALS http://www.iambreathingfilm.com/i_slept_like_a_baby_on_the_other_hand?recruiter_id=2
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