Why

I found my 20 year old daughter dead upstairs. 10 mins previously we were laughing and joking downstairs. She went to get ready to meet her friends and then she was gone.
This was 6 weeks ago. I have no answers about how or why she died. I won’t have any till February they sat. How can something so catastrophic take so long to find. She was my only child. My life. My wored.
How do you live with the pain? The loss and the not knowing.
She would’ve been 21 two weeks later and had loads ofrom celebrations planned.
I feel like I have nothing left and feel so guilty. If only I’d gone upstairs a few minutes earlier I might’ve saved her.
I did CPR for 8 minutes till the ambulance arrived. I can still taste her.
I’m sorry if this is descriptive but I don’t know who to tell xx

How dreadful for you. I am so sorry for your loss. I too felt that my world ended when my daughter died in August. It just isn’t the order of things is it, and not knowing why or how adds even more stress for you.
There is support here so please do come back. With love. Xx

Hi

I’m so sorry to hear about your loss. My son died back in August too, he was 24, I came home to find him dead in the sofa, also did CPR until the ambulance got there and they spent 2.5 hours with him at the sofa but couldn’t bring him back. I’m still waiting to find out what the cause was, unfortunately it just feels like a very lengthily process and unfortunately whatever it was will not bring him back. He was my only child too, he was my whole like, it’s heartbreaking and sometimes I do feel like I can’t live on without him, but then I think also this is not what he wanted or he knew me. I talk to him every day like he still here because this is just too hard to accept and I believe they are with us. I’m also seeing a therapist focusing on CBT, I have days where I think it helps others maybe not so much. They would have wanted us to be strong even though sometimes this just seems like an impossible task. I found a lots of support on this site too. Reading some books around grieving also helps. Big hug. Thinking of you x

Oh I’m so sorry to read about your son. It must be so fresh and raw for you too.
Sometimes I think she’doesn’t want me to be strong and live on at others I feel she’doesn’t want me with her. She’s never been anywhere on her own.
I can’t bear the guilt what if I’d gone upstairs on the first song I may have saved her.
Sometimes I think a cause will give a reason, then I think it won’t change the outcome.
I feel like if I talk to friendsbut how do they really know? They miss her too then go back to their own homes and their kids. Whilst I wouldn’t want this for them I wish they just had my head and heart for just 2 mins to get some understanding of the pain.
I feel cheated and robbed for her and for me as I’m sure you do too.
Does the therapist help I feel like I’m suffering in silence and probably need this too.

Big hugs x

I’m so sorry for your loss, it’s such a awful loss. I too list my daughter in August to SUDEP Sudden unexspectad death in epilepsy. Megan was diagnosed with epilepsy last October and only ever had two seizures, the third one took her life. I had to perform CPR even though I knew she had passed, that in itself is traumatic. We never expect to be doing cpr on our children. I still ask myself what if? Why? And also had so many plans for the future. This time of the year is awful because I don’t want a merry Christmas, why would we? I’m so sorry for you, I too feel your pain. Teresa xx

Thank you Theresa and I’m so sorry for your loss too. I too don’t see anything at all to celebrate. How can you when you feel your world has ended?
Was Megan an only child too? Not that that makes any difference at all.
The process of finding out what happened is so lengthy it just seems crazy to have a funeral with no understanding of why. Though their is no part of losing your child that’s right anyway.
Everything is just so hopeless and pointless now.
How are you coping?

Hugs
Lisa

I have another daughter Melissa who is 10 years older than Megan, Megan was 18 when she passed. We had to wait 5 weeks before we found out what Megan died from. I sort if knew because of the way she was laid. My daughter found her that dreadful day and I often wonder how we’ve got through that day, that week, last month even. We have to take it hour by hour, day by day! If people ask me if I’m ok, I say no I’m not. How can we be ok. Unless you’ve experienced losing a child them How can they know.
I have a good family and support network that help me get through the day. I will often talk to other families who have lost to SUDEP and Cruse have been amazing. The grieving is horrendous, the way my body aches for Megan, my heart hurts for her everyday. I know you will know what I mean because we’re walking in those terrible shoes together . . Sending you my love. . . Please contact me if you need to chat… Teresa xx

I am really struggling. None of my friends seem to grasp the magnitude or the pain. I don’t blame them how could you?
I don’t really have any family my parents died years ago. I’ve tried cruse but they don’t phone back. The funeral is monday I don’t know how I’m going to do it.
I’ve been told a cause may not be determined till February that’ll be 3 months. All tests so far have been inconclusive whatever that means. I can’t imagine how difficult it was and is for your daughter to find her. Sending hugs

Xx

Hi Teresa I’m sorry for your loss my son Matt also died after having a seizure he had epilepsy from the age of 5 it was controlled pretty much by drugs they where less frequent but more substantial and the day I lost him he was alone at home me and my younger son had gone to work in the morning I came home at 1 pm to find him on his bedroom floor apparently it had happened around 9.30am and I find that hard that he was alone all that time he was four months away from his 21st birthday I just feel so numb

Hi my daughter Lizzie died in October, just four days short of her 25 birthday. She was happy and looking forward to the future. I am still waiting for a cause of death, she had epilepsy but hadn’t been telling me the whole truth. It’s so raw and overwhelming she was my only girl and life feels unbearable.

Hi my daughter Lizzie died in October, just four days short of her 25 birthday. She was happy and looking forward to the future. I am still waiting for a cause of death, she had epilepsy but hadn’t been telling me the whole truth. It’s so raw and overwhelming she was my only girl and life feels unbearable.

I’m too waiting for a cause of death my daughter didn’t ail anything as far as I know she didn’t complain of anything and was laughing and jowing when she went upstairs to get ready to meet her friends. Not a few minutes later I found her
Such a waste both our kids had plans and it sounds like your daughterror loved life as much as mine. I feel cheated for her and me and can’t find anything left to celebrate. I’m way too distraught.
Big hugs to you

It’s so hard, I am so lost and missing her so much. It also feels lonely as no one in my close circle of family or friends can really understand.

I know. I’m same. Everyone is sad then they busily go about celebrating Xmas whilst I sit here wishing for past Xmas es and wondering what my Abi would be doing. How much we’d enjoy it and now how lonely and empty I feel. I can’t see joy in anything anymore

I know it’s selfish to want everyone to feel like I do but I miss her so much. I’m desperate to know what happened and why. The wait is killing me too. I just can’t see the point anymore

Same I want her back which is mad. But every time I think about her is breaks my heart x

Me too x

I hope you manage to get through Christmas LisaP. It does feel so rubbish and is heightened during this time of year, she lived Christmas and I miss buying her presents x

Hi,
could i please ask what cruse is = is this linked with SUDEP? Does it put you in touch with other SUDEP families?
I lost my son to this in May and I am struggling so much, i just cant make any sense of it, cant accept it and every day feels like torture without him.

I’m so sorry for your loss, I lost my only child as well on 24th November 2016 suddenly its devastating I cry all the time he was 33 I miss him every day xx

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