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Grieving what could have been

Community Member

Hello everyone.

About a year ago my nephew was born - we received a beautiful message and photo from my sibling announcing the news that he had arrived safely and his name. I imagined what fun things that my nephew and I would get up to as his personality developed. He was the most beautiful thing I’d seen in my life.

But, despite looking so normal, it was discovered he had a severe condition due to a genetic mutation and he will never even hold his head up independently. At nearly 1 year old, we are yet to see him make eye contact or smile.

We all love him regardless and are doing our best to support his mum and dad, who are doing an amazing job.

But I feel traumatised by what has happened and I’m in a work place where everyone seems to be having babies and talking about their kids. I want to feel happy for them but often cannot help but feel resentful. Looking at that first baby photo that was filled with so much hope for the future, I feel like I’ve been in mourning for the past year for something I never had and the thought that he’ll never e.g. experience things such as having friends or playing sport. I’m also grieving the fact that my sibling won’t get to enjoy the usual things parents enjoy with their kids as they grow.

I often still feel teary for my family’s situation and find myself ruminating. But I have little support, as my grief is somewhat disenfranchised I think due to not being the parent or grandprent in this scenario. My partner offers very little support and no one asks me how I am.

How can I move on from this grief while my family is still experiencing this difficult situation?

7 Replies 7

Community Champion
Community Champion


Welcome to the forum. Thanks for writing your post to this caring and supportive community.

It is wonderful you have a nephew and sad that he has a severe genetic condition.

I understand your grief and sadness that he wont experience the life you were hoping to share with him.

Have you spoke to your sibling or your parents about how you feel. ?

It is hard when you see other people having health babies.

I think it is a start you are acknowledging your feelings.

Do you see much of your nephew? Maybe if you could get to know him you may find he responds to your voice, or music or he likes having his hand held.

I used to work with children with severe disabilities and the parents said they try to focus on what the child can do, not on what they can't .

These are just my thoughts.

Sometimes writing down how you feel can help you work out your thoughts.

Feel free to post here as much you like.


Valued Contributor
Valued Contributor

Hi Gelati,

This is such a sad situation, how could you not feel for your dear little nephew and your family and not grieve for ‘what could have been’ for him. That just makes you a lovely and beautiful soul so please don’t try and beat yourself up.

It’s also perfectly natural to look at others and wish you had the same things as them. Something about the situation feels so unfair, unjust, and undeserved. When bad things happen to good people, our minds try to make sense out of them and sometimes we can’t. As someone who had serious medical issues from a young age, I also understand that feeling of not having anything in common with those people, feeling somewhat separated from them, that I was acutely aware of how different my situation was from their carefree lifestyle.

I think you need to allow yourself time to grieve the loss of all those things and be gentle with yourself, it doesn’t make you a bad person to feel this way. I think you also need to talk to someone about this, do you have a friend you can talk to? Your sibling may also be a good person, although I understand you probably want to put on a brave face for them, but they may appreciate if you don’t. Just a few thoughts x

Blue Voices Member
Blue Voices Member

He Gelati,

i understand how you feel. I have a granddaughter who has a genetic condition that has meant disabilities for her. She is now 5 and lovely. She has a very rare disorder. I certainly suffered from grief when she was diagnosed and for sometime after. There are things i will neber experience with her, as a grandmother. But. She is a member of our family and very loved. She tries so hard to do things and is a joy to have around. I can still look at her and feel sad for her, but she is not sad for her she is who she is. I just try to love her more and treasure each minute i have her with me and see that she has the opportunities she needs to develop to the best of her abilities


Hi Quirky.

thank you for your thoughtful response and suggestions. I like your suggestion about focusing on the abilities rather than the disabilities - there’s not much at all that he can do but I can sometimes get him to grip around my finger - maybe I will sing to him a bit or hold him a little more 🙂

thank you again x

Hi Juliet. Thanks so much for your message.

Your words have given me some comfort that these feelings of envy and resentment are not unique.

I think you’re right that I need to speak to people about it. It’s just that i have to be selective - not all people have the emotional space at certain times in their lives to give support. I’ll have a think about who I can talk to.

Thank you x


thanks for your reply.

I am glad that the replies you received helped you.

It is a difficult situation which others can reall to .

I thank Yu again for your honesty and wish you well.

Feel free to post at anytime.


Community Member

Hi Tess.

I appreciate your message - thank you.

You make a really good point about your granddaughter not being sad for her - I expend lots of energy being sad for my nephew, when he’s possibly not aware of a reason to be sad. I suppose I feel a lot for his mum and dad, though.

I think you make a great suggestion about treasuring the time I have with him, though. I’ll just give him and his parents as much love and support as I can. x