Am I right or wrong?

Surely it isn't necessary for them to book so early. It would have made more sense to leave it until nearer the time, when they will know how your illness is progressing. It always seems possible to find last minute holidays. As always, I so admire your strength, willsandco!

wills Glad you feel a little more settled with your decision, look after yourself and please keep in touch with us
Good luck and much happiness for you in the time you have left

Wills what a difficult situation to be in. Things must be really hard for you at the moment but please try not to upset yourself with thoughts of your children being uncaring as I am sure this is far from the truth. When people are faced with a situation like yours, no one knows the right or wrong thing to say or do as each situation is different and everyone reacts in a different way.

I am sure their intention is not to cause you anxiety and if you are ill nearer the time they are likely to cancel and be there for you and your husband. It is easy to misunderstand the actions of others and they may have good reasons for booking this holiday, possibly thinking it might make you feel more positive about your own outlook not realising you might think them uncaring. Like other posters I wish you all the happiness you can have in your time together. Take care

Average life expetancy is not a firm number for anyone to make plans around. How many last much longer, how many far less? Why? Did your doctor feel it had been diagnosed early or late in it's progression? How are you currently? Does the disease have a gradual or sudden decline, and what are the markers? Do you have any of those markers?

I have bulbar onset motor neurone disease, MomandGrandma. It is a progressive, debilitating neurological disease. Every bit of MND literature says that the average life expectancy from diagnosis is 14 months and my particular strain is the fastest moving. There is no escape and there is no cure. And yes, it is deteriorating. I got married in April 2014 and could say my vows. Today, in October 2014 I cant talk at all. In April 2014 I could walk down the aisle. Today, in October 2014 I cant walk down the drive unaided and the wheelchair is in the back of the car wherever we go. No one knows how fast it will go, no specialist knows. It can bumble along, or it can turn aggressive on a sixpence. If the average is 14 months, you have to accept that the statistics say that, or they wouldn't publish it. I am really positive, not down hearted but I have to accept that, if I live into the Autumn and later, I am definitely one of the lucky ones.

How stoical you are willsandco! As others have said, its incomprehensible that your family is planning this holiday timing. I think you`re being so mature and sensible about it. I don't think I could have restrained myself from saying anything or typing anything. I know its an awful thing to say but in some ways you have had a (cruel) advantage over others in that you have had an opportunity to carry out your last visits to places and people you have loved. For others there is no chance to say goodbye.
I`m just writing this as I think.
Sorry.
Surely they wont go....................

You are a Very Brave Lady willsandco (((hugs)))

Jane10, so much of what you say rings true. I love my girls and their families with all of my heart. The younger one is 40 this year and it is the first time she has been sufficiently settled to plan a holiday with her sister. I am so pleased they are all going together. It makes me very happy. But then there is the occasional twinge of pain which tells me that I don't want them out of the country when I could be far worse than I am now or away if I suddenly deteriorate and die. I would not tell them how I feel for the world. I know how much they are looking forward to it. I cannot burst their bubble. They are insured, they can cancel, cant they? The trouble is that I always present this positive, upbeat face to the world and I think they are just clinging on to that in the hope that this cruel disease will be slow moving. But, with MND, you simply do not know from one day to the next. Still, it is in Gods hands and we have to trust in Him. And you are right, completely right about the advantages of knowing you have a terminal illness. Over the last ten months,I have been to see almost everyone who I have cared about in my life, and who has cared about me and told them how much I love them. With sudden death, you don't get that opportunity, do you?

Just sending a good Tuesday wish to you wills.

thank you, Mishap. We are just going out to Newark to friends for coffee. Done washing, all finished now. Birds in garden have new seed down. All is well with the world. Hope you are OK - and a happy Tuesday to you too!

willsandco for you. As I have said before you are inspirational. I spend most of my life complaining and whining about my lot in life. People like you are an example to us all. I am glad you have been able to speak to the people you love over the past few months. My sister in law died very suddenly a few years ago at the age 49 (she just dropped dead, she hadn't been ill). My DH always said that it was terrible for the family but a quick death for her and that it is how he would like to go. Now he is unwell himself, he has altered his view. He will hopefully be cured but I know if by any terrible stroke of luck, he isn't, that he would want to speak to the people he cares about.

Hi Wills
I admire your spirit in all of this.
I was a lot older than your girls when death happened. I was in total denial even though I knew that my dad had been an invalid for decades and had had 2 heart operations. He had had many operations and illnesses and his deterioration was marked by all the "kit" that arrived for his use. Even when his Consultant asked to speak to me I still thought my dad will come through this just as he had come through so much before. My dad and I were not the types to express feelings but I am glad that I was there with him at his bedside for 48 hours in the hospital when he died. I hope that he was pleased that I was there.
I would suggest that if you are a more talkative family who can discuss things more openly I think you should tell them that there is a likelyhood that you could be very ill at the time they plan to be away. As my father got more ill I was scared to even go to the shops nearby even though I had a car and mobile phone and he had an emergency button which would contact my mobile. I was scared that I would not be at my father's side as he left this world.
I think the girls may be are in denial but I think that they need to know that you hope to have them around in your final weeks and days. I would have been devasted if I had not been with my father when he died. It might be kinder to tell them you think that uly 2015 is not the time for them to be so far from home. Hopefully they will see for themselves when they should not be away from you.
You are being so brave through this and an inspiration for others. Hope it works out for you all.
Sugarpufffairy