Grieving a grandchild that's still alive

So sorry to hear your news, GrannyTilly. Of course you're devastated, but I hope that you will all be able, once the first numbness has passed, to make the very most you can of the time you have with your dear grandchild. None of us knows how long we have and living in the moment is not a bad way to live. Sending virtual hugs and

The first time I started to read your post I couldn’t finish, it is so very, very upsetting. I am devastated for you and your family and can’t imagine the pain this is causing you. My heart is with you. Stay strong and enjoy the time you have.

Terrible news and my heart aches for you. However, often these long term diagnosis have better outcomes. I know a child who was diagnosed with an incurable brain tumour but a new treatment has turned that around. All that can be done is to give this child the best childhood and life that is possible.

Special thoughts for you and your family

GrannyTilly I can feel your pain and I would suggest that you maybe try a mindfulness course. We none of us know what our futures hold and the joy of mindfulness is learning to live in the present and to gain happiness from what is around you now.. you have your precious GC now, love and enjoy his presence for the years you DO have ahead.. this will also be of great comfort to your family

I'm so sorry that you're facing this..grab the happiness in every day

GrannyTilly So sorry that you are all facing this. Making his little life the best that it can be each day is maybe a focus for you. Do give yourself time, as this new reality settles in for you all you will find a way through to cope 💐 xx

I agree with Doodledog - in 25 years there could be great improvements in medical treatments for this condition. In the meantime, enjoy life with your dear grandchild.

Sending love to you and your family.

Oh, GrannyTilly, how very very sad. My heart goes out to you.

Where there's life, there's hope though. In 25 years there might be a cure - research goes on all the time, and we hear of breakthroughs on a regular basis. I don't know how I would deal with something as devastating as that (and I appreciate that you will be coping with your own grief as well as that of your daughter and worrying about your grandchild), but if you can hang onto hope you never know - the worst might never happen. In the meantime, can you try to enjoy the time you have together.

Don't despair.

There is a saying

Don't let worry about tomorrow steal the joy from today

Human beings are more fragile than we care to admit. There is never any certainty in life about how long we will be healthy and here but the time we do have is precious.

Love your grandchild in the now and in the memories you create for later. Treat this time as what has been given, not what has been taken away

💔😢

So sorry for you all GrannyTilly.
Two good friends have sadly been through this too.
Your toddler grandchild is too young to be aware yet so try to live in the here and now with them as much as you are able. Make those memories count xx

Such sad news. Treasure every moment, and hope for medical advances. x

Get ready for not only dealing with the final prognosis of the diagnosis, but to grieve the experiences and life opportinities your gc is not going to have while he/she is in this world

The good news is your gc won't stop being a delightful child and may not question why his life is different - kids are amazing

Wish I knew what to say GrannyTilly (((hugs)))

No words just total love sent to you all. ❤️

GrannyTilly, you must be absolutely devastated and my thoughts are with you and your family. From a GPs point of view this is very hard indeed, you are so upset for your ' child' and trying to support him/ her and at the same time coping with such dreadful news about you precious GC.
I send you all I possibly can to try and help , my heart goes out to you. If and when the time is appropriate support from a hospice will be invaluable. I sincerely hope the messages you receive from GN will give you a little comfort and a huge amount of strength. I am sure you will do all you can to ensure your little one has the best and normal childhood possible. Thinking of you. 💐💐💐

GrannyTilly you must all be reeling from such devastating news, and have my heartfelt sympathy. At the moment you can't see beyond the pain and sorrow, but I'm sure you will in time. The sorrow will never leave you but it will surface less often as you strive to give your grandson the happy, normal childhood he deserves.

I am so sorry to read this tragic news, GrannyTilly, my heart goes out to you and your family. It's just unfathomable isn't it? Please know that this community cares and will be here for support.
I send you my love and best wishes for this tough time ahead

Thinking of you, Grannytilly.

Couldn’t have put it better BlueBelle my heart goes out to you GrannyTilly

I so feel for you GrannyTilly the news is new and raw but as others have said when the shock wears off you will be able to cope and give the little one a brilliant life be it short or long It’s because you know but you have to get over the news and you have to put your joy of the child over your emotions and give him the best life he can have
Remember how much medical science has come on in the last few years A friend of mine had a fairly miserable life with CF. But at the age of late 30 s some new medication has given her a whole new lease of life
All I can think is none of us know if we have one year or eighty years knowing his years may be limited give you the chance to give the little one lovely experiences and memories for you and there’s always, always hope

GrannyTilly I want to hug you and your little grandson and his family. How sad! But you and your family will get the strength from ‘Somewhere’. Don’t make the mistake I did. When my 10 year old son was diagnosed with a bone cyst/tumour, I cried in front of him. I just couldn’t hold it together and he asked me ‘mum, you think I’m going to die, don’t you?’ My heart broke. Fortunately, he had the tumour removed, had a bone graft and he is now a strapping 51 year old, with a young family. So, please don’t lose hope.
Science is developing all the time and by the time he is 25, they would have found a cure for the disease. For GrannyTilly and all those through such worry
Btw, I am up this late only because my neighbour tripped this afternoon at 3pm in my garden and the ambulance only turned up at 2.30a.m. 😂 Basically, I’m all hyped up and can’t sleep

Shocking news for you, and very sad for the child and the wider family GrannyTilly. I have no words of wisdom, but send you my very best wishes and the hope that living with this information will become your ‘new’ normal and allow you to store up many precious moments as memories to treasure.