Grieving a grandchild that's still alive

I can’t and that is the truth.
I cannot imagine how you and the family will cope but I know you will, you have to.
You cannot let that child as he/ she grows that anything is wrong.
You will find the strength and be stronger for it.
My thoughts are with you all.

Know should be in there between child and he/she..

Gosh what devastating news, I’m so sorry GrannyTilly. How cruel is life. I’m sure this little one will be given all the love and support by you and his family, and will no doubt be given the best life possible. But you too will need support, perhaps it might help to speak with a counsellor or a support group. You are very much in my thoughts.

My heart goes out to you and to this child's parents facing such a ghastly prospect. My nephew had cystic fibrosis and spent several periods in hospital throughout his life, first at Great Ormond Street then The Brompton. He was 23 when he died in 1993 and we were all devastated, especially my son who was 12 at the time and adored his cousin.

We shall never forget him for many reasons. When we visited him in hospital and would be concerned about how it would go, he would uplift our spirits with his wonderful ability to engage with us all about our lives and rarely wallowed in his own suffering.

There are no easy answers but I know you will all give your grandson the best life possible in the precious years ahead and build up a memories to treasure for the future.

My thoughts and prayers are with you. Take care of yourself.

My granddaughter is now 8. At birth she was Oxygen deprived and started having fits at 3 months and each time it meant she lost some brain function until they started getting it under control. She has learning disabilities, cerebral palsy, she has virtually no sight, and epilepsy. she had more sight until a bad set of fits during Covid. she could get very ill at any point and we do not know how long she will be with us.

Her drugs keep things under control but its always the case there will always be this uncertainly. It has always been this way.

We thought we'd lost her when she got Covid.

I remember clearly thinking on a walk I burst into tears and thought, "Take me, dont take her"

They have lived with it since it started. there are 3 other siblings and they are well.

However, they haven't/I haven't "suddenly" found out about it. That must be terribly hard. GrannyTilly

How do they cope? How to cope? Because its been going on for so long they have grown up with always knowing and live in the present. they dont talk about she may die, they give her as full and happy a life as possible.

They live for each day, day by day, she is still a delight. In the end I have come to follow suit, I pray we will have her as long as possible. she. loves cuddles and talking and she will always be a child in a way. I hope this is what you can all come to eventually do, live day by day xxxxxxx

However, having said this, she is not self aware enough due to the learning disabilities of her own situation. She probably will never know she might die.

I know that my DS and DiL have talked to doctors and psychologists about it, and they belong to a parents group with children in a similar situation there there is mutual support. this has grown up over the years and I hope your family confined the same.

There is no pain like that when you lose a child,to have to face the loss every waking minute must be the worst torture,
My heart goes out to you and your family with the hope you hold each other close and face each day together .

I understand completely GrannyTilly as there is a similar situation in our family.I won’t go into details here tho.
He’s the sunniest little chap too, I hate to think of what’s coming down the line.
Be as good as you can to the child, and to the parents and to yourself.None of us truly know what’s round the corner so live for today and hope for the best.

Oh what heartbreakingly devastating news for you and your family GrannyTilly. There are no words. You must all be in shock. How does one cope? I have absolutely no idea but I didn’t want to read your post and just pass by.
💐 for you all. I hope as time passes you find inner strength.

No words as I cannot even think what yo say. My thoughts are with you 🌼

The grief, shock and possibly anger must be intense for you all.
It must be hard to take in such news.
The child is here now and you can love them
Don't hold back for fear that you will lose them. Try not to be afraid of tears. It's natural

GrannyTilly that is such awful news for you all to receive. I remember when our niece was told that her two children both had the same condition and would probably live into their teens. They both made it into their 30s thanks to modern medicine and sheer determination.
You will cope, I’m sure of it. And there is support out there when the family are ready for it.
In my area the regional children’s hospice is a wonderful place and has supported the families of several children that I have worked with over the years. They provide play opportunities, support for parents and siblings and care at different stages for the child/young person. When you’re ready this might be something for you to find out about in your area.
I’ve also worked with families who have gained friendships and support from associations for their child’s condition.

It’s still raw now, so give yourself some time to understand and process it. Just be the loving gran that you are.

Keep talking to us.

Believe it or not, after the initial shock and the anger phase passes, acceptance comes in and you adapt

Your outlook and priorities will change.

Please give it time - in 4 months or less you will be able to cope with the new reality

GrannyTilly, most of the time, we simply don't know how long we, or anyone will live, whether they'll be fit and well or poorly, happy or sad.

Now that you do know, you ask 'How in the world do we cope?' We find that we have the enormous strength to cope very well, to comfort the parents, yet be our usual cheerful selves with the child - and not let our sadness show.

We manage to give as many good days as humanly possible (those days you always remember) to behave as we normally do, to see all the positives, never focus on the illness but fill their days with fun and joy, be there when needed - just as any good grandparents do.

A child/young person can be lost at any time, through accident or sudden illness, there is never any certainty. Our hearts break - yours is breaking in advance, having lost that hope for the future, yet some hope still exists, and really should, as we need it.

My dear little relative had just four years, was weak and tired quite often, but still had a normal, happy childhood, full of love and joy, the best part of a life, I'm sure.

I’m so sorry to hear this news. 🌹🌹🌹

GrannyTilly, I am so sorry that you and your family have had this awful news. I sincerely hope that medical science might come up with some treatment that could help.

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.

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

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

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

Thinking of you, Grannytilly.

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

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.

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. 💐💐💐

No words just total love sent to you all. ❤️