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Grieving a grandchild that's still alive

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GrannyTilly Sat 11-Feb-23 20:34:15

My world came to a screeching halt today when my child told me that my grandchild has a debilitating disease that will take him from us, in all likelihood, before their 25th birthday, possibly sooner.
My heart is breaking for my grandchild's parents and siblings, but also for myself...this sweet grandchild is only a toddler, coming into their own and developing a wonderful personality. Bright smile, infectious laugh, the whole package. How in the world do we cope, knowing we will only have a limited time with this joyful creature???
How do we get past the shock of such a heart-rending diagnosis, knowing there is no cure???
I worry for his parents even more--I can only imagine how awful it will be that they know of the time constraints as well, and are equally powerless to do anything about it.
I met an elderly lady a couple years back, and as I got to know her, she told me about losing 2 of her 3 children at young ages. With the youngest one, they found out that he would probably wouldn't live to become a teenager. He passed at the age of 10.
While she was telling me this, she started tearing up, and while I felt so bad for her, I didn't quite 'get it.' It was like she was reliving it, all those 50+ yrs ago...I remember her telling me how awful it was to love someone, a child, knowing they were destined to die soon, and I couldn't imagine being faced with that. I didn't get it, even though I know that grief has no time frame or limits. I didn't understand why she was crying so many years later, but then remembered that I still cry over the loss of an aunt in 1974 who was very dear to me.
I don't know how she managed, all these years, living with THAT kind of grief--her own child. I get it now, though, Lana, and I feel worse that you are still grieving your losses. But how in the world do you manage to go on? How did you maintain a happy persona and not burst into tears whenever you were around your child, because you know the last thing you want is for them to see you cry all the time? How do you hug them and be able to let go, knowing you might not have that much time with them, and every hug could be your last?
Somebody, please tell me how...

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Smileless2012 Sun 12-Feb-23 19:27:16

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

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Hithere Sun 12-Feb-23 19:37:15

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

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Luckygirl3 Sun 12-Feb-23 20:44:51

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

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V3ra Sun 12-Feb-23 23:18:02

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

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Joyfulnanna Tue 28-Mar-23 22:50:15

💔😢

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VioletSky Tue 28-Mar-23 23:13:41

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

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Doodledog Tue 28-Mar-23 23:39:29

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. flowers

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ginny Wed 29-Mar-23 07:54:35

Sending love to you and your family.flowers

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Starrynight49 Wed 29-Mar-23 08:04:12

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.

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Madgran77 Wed 29-Mar-23 09:27:11

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

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Walkowl Wed 29-Mar-23 10:04:10

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

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pascal30 Wed 29-Mar-23 10:14:10

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

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luluaugust Wed 29-Mar-23 10:25:18

Special thoughts for you and your family flowers

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Lovetopaint037 Wed 29-Mar-23 10:46:39

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.

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Caramme Wed 29-Mar-23 11:01:38

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.

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Wheniwasyourage Wed 29-Mar-23 11:51:23

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 flowers

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