Death of son from SUDEP

My son died in November 2019. He died at university from a seizure. He was 18. My heart is broken and I miss him. It’s really hard to be happy again as I have lost the joy. I try to keep positive for my daughter’s sake. I find socialising difficult as everyone is happy and I’m not inside. So I fake it. I’m tired of pretending I’m happy when I’m not.

Hi I can understand the pain and heartache , as I to list my son in November , and I agree with you, everyone goes on with there normal life’s, as we just hold the pain and heartache inside love to you Helen x

Thank you for the love. I’m still at the stage where nothing makes me happy. Not even the sunshine. It’s so hard to go into his room as all his things are there. I know he is happy but I miss him so much.

I really know how you are feeling, my heart goes out to you, I can’t even look at photos of Daniel, I can’t talk really about him, when I’m on my own I just cry all the time, so I really do know what you are going though, life is so crawl and unfair , love to you Helen x

So sorry for your loss. How did he pass away. And how old is Daniel?

34 was carbon dioxide,as like you am heartbroken, no one should go though this and if we can help each other try and get though this it’s a start live Helen x

Yes. We can support each other. Definitely.

Hi so sorry for you both I lost my son in June 2 weeks before his 24 th birthday I can’t bear to go in his room or look at photos either it’s hurts too much like someone sticking a knife in my heart and twisting it , our lives without him will never be the same , we lost our daughter ten years ago just before her 19th birthday it all feels so unreal like I’m stuck in a nightmare but can’t wake up it’s so unfair that any parent has to go through this my love to you both xx

How terrible for you to lose two children (young adults). I can relate to your feelings of a knife stabbing you. I sometimes wear his t shirts to make me feel better. He is in my dreams and I feel so close to him then. Life is hard to live now and I am faking it on a daily basis. You must be feeling double pain. Sending you lots of love.

Hi ,It’s a small comfort he’s in your dreams ( not much I know ) my daughter was always in my dreams although after ten years the dreams got less but were still there , my dear son I’ve dreamt of him just once it’s so hard when I’m awake I can hardly bear to think of him in depth and would appear vacant dream about him either it’s just to painful , I saw him 2 weeks after he had passed I was so shocked to see my fit healthy handsome son in a coffin not moving so so cold with blue long nails ( he would normally bite them ) I’ve had one dream which was a small comfort where we hugged I held him told him I knew he was going but he was warm, it’s so hard For all of us , I’ve just been out with friends for a meal for bank holiday , my husband who used to be outgoing funny good company sat like a zombie my friends looked uncomfortable it just reminded me that my life as it was is over, i and he has very little interest in our world anymore but have to be strong for our daughter , which is so hard as she too is struggling I find some comfort in this chat and hope you all do as well take care x

1 Like

I can relate to you as after losing my son I cannot see a way of ever coming back from this I desperately miss him & yearn for him.
Sending love and strength to you all :broken_heart:
I hope this group will help as we are able to understand each other.

1 Like

I had a hugging dream too. It must be their way of saying goodbye or reminding us that they are still connected. I’ve been sent a bereavement book by a friend which I will be reading soon. Can’t just yet. Life is dull. I hope I get my spark back but it’s early days. I hope you all get your sparks back too.

Back to top