My son had a progressive condition and I was told he would not reach his late teens early 20s. For years he remained stable then in June he started to deteriorate.
Suddenly 3 weeks ago he died unexpectedly.
I wish I had died too. He was the love of my life and overnight my life completely changed. For the last 18 years he had 2 carers 24/7 but now I am the only person at home.
I have 2 elderly dogs so have to get up every day as one has Type 1 diabetes.
I can’t see the point in living any more. How do I go on?
I am so sorry for your loss too.
No parent should have to bury their child. It’s been said to me so many times recently.
Dan was 33 and although severely physically disabled was very bright. He never referred to his disability and never felt sorry for himself.
I always thought I would be with him when he died but the morning it happened he’d been laughing and joking with me on the phone. I was actually driving to the hospital when I was phoned by the doctor. I honestly don’t know how I got there.
Most people have been lovely but my eldest brother turned round and said, "Well, he had a rubbish life. " I could have killed him then and there. That was my baby he was talking about and his life wasn’t rubbish. He was loved and showed me unconditional love.
My lovely niece said “just breathe”, nothing else matters at the moment but all I see is a big black darkness and my life is over.
@Basset, I’m so sorry for your loss and understand exactly how you are feeling at this time. Your description of Dan sounds just like my son.
He was also born with a progressive neurological condition and was severely physically disabled and unable to talk. Like your son he was very bright and said everything with his face and beautiful smile. Although his condition was progressive he seemed stable for many years but then began to deteriorate and stopped eating. He went into hospital for NG tube, had a massive seizure and died three days later, he was 41.
It’s been two and half years now and although I do have some better days, the pain in my heart is always there. When you have cared for your child throughout their whole life, like we have, there seems no purpose once they are gone. Unfortunately there is nothing I can say at this time that will help heal your pain, I will just say take things a day at a time and try not to think too far forward and just do things at your own pace.
Most people are kind but there are always the ones who say things we don’t want to hear. I had people say to me, ‘’ well you can do things now that you haven’t been able to do for years’'. Why didn’t they understand that I didn’t want to go on a bloody foreign holiday, I just wanted my son. You know your son had a good life and you can be proud that you were the one that enabled him to do so. Take no notice of what your brother said and if I were you I would avoid him until you feel strong enough to tell him exactly how good a life your son had. Your niece sounds lovely, perhaps you could spend time with her sharing memories of Dan. I know it helped me and still does to spend time with friends who understood how I felt and would listen if wanted to talk or just be a shoulder to cry on if I needed it.
sending you a hug. take care. xx
@Razwana2003. I’m so sorry for your loss. The pain of losing your child is unbearable and nothing anyone can say will make things any easier for you.
I lost my son two and half years ago and I do now have better days. the pain hasn’t gone away but I just manage it and live along side it.
I can only say take things a day at a time and try not to look too far forward. I know in the early days I just didn’t know how I would get through each day, but some how you do manage to.
Thinking of you.xx
@Reet41 hi there thank you for your message means a lot its very hard I’m trying to take day by day but I can’t seem to focus on what’s around me feels like I am touring myself every day . Missing my daughter so much Christmas is going to very hard this time I’m trying to stay strong for my other children but it’s so hard.
You both understand exactly how I feel.
I have also had people say that I am free to do what I want now. I was never in a prison and chose to put Dan first and would do so now.
The idea that I have a list of things I want to do is bith ridiculous and insulting.
My birthday was 16 days after Dan died and a good friend sent a message wishing me a “wonderful birthday”. Are some people tone deaf. Needless to say I told her exactly why neither it nor any future birthday will be wonderful. Dan was the light of my life and I have nothing to carry on for. I wish I could die right now.
It’s his funeral this Friday and I dread it, particularly the Wake afterwards. There will be people who were always saying they’d visit but never did. One of his ex-girlfriends has made it all about her. He dumped her 16 years ago! His current girlfriend wasn’t there for him when he needed her and is another eith attention seeking behaviour.
I just want to mourn away from the lot of them.
Christmas isn’t registering with me and I’ve asked people not to send cards. What have I got to be Merry about?
The life I had ended and right now all I see is an empty future.
Dear Bassett
Friday will be a difficult day for you, especially as you seem to have some toxic people around you. try to ignore them, difficult I know and make the day about you and Dan.
You may find this hard to understand at this time but I would describe Richards funeral as a wonderful celebration of his life and not a final farewell. He was a massive VW car enthusiast and instead of a hearse the funeral director found us a VW camper van that had been converted to hearse. This was the last thing we could do for him and he would have loved it and it gave me great comfort.
I can understand you wanting to shut people out but try not to shut out the positive people who may be able to offer you support and remember it’s ok to say I’m not ok.
I will be thinking of you on Friday, Dan sounds like a man who enjoyed his life despite his difficulties,. I know how hard it is but try to remember all the good times you had with him.
Hi Razwana, The 'firsts ’ are very difficult and this Christmas will be hard for you, but remember it’s just another day. Don’t feel pressured into doing things that you can’t cope with. Sometimes you have to tell people how you feel and not just put a brave face on it, for your own sanity.
I’m not looking forward to Christmas and this is my third without my lovely son. I will go through the motions but I won’t enjoy it.
Bassett. I can really relate to that darkness. I lost my beautiful daughter in October and since that day I feel like I am trying to pull myself through dark treacle, daily. My GP put me on antidepressants which have helped, but sometimes it feels like the dam needs to burst. All those stupid things people say, my friends too 'have a great weekend ', what!? What part of there are no great, lovely, good times when you have lost your baby. I know they don’t know what to say, so say nothing, just let it be known you are there (friends). I had a work colleague who had a severely disabled son, he and his wife took turns with his care, despite him doing shift work. Lee passed 2 years ago at 27, and yes, he has been able to go on holidays, do the things he couldn’t do before, but more than anything he wanted his son, and he was amazing with him. Whether able bodied or disabled, our children are our children, a part of us. Without them it is dark right now, but we can only hope some light gets through, even a few rays here and there.
@Lydia3 I’m so sorry for the loss of your daughter, grief is so hard to bare and there is no guide book to help us through it.
I recently saw a mother on TV who had lost her son in tragic circumstances and she said ‘I know I will never find happiness again now I’ve lost my son’. I am sure that this is how it is for all of us who have lost our children. I know after two and a half years I go through the motions of life but nothing really makes me happy.
Sending you much love and deepest sympathies Basset.
I felt that life had became redundant when my son died. I’d been his carer and a single Mam, from his birth. He died aged 20, my life felt like it had no meaning - I didnt know how to just be me, i hadnt had a day off in 20 years!
In time, you become used to the loneliness and emptiness, the pain doesnt go but it does become your new normal.
Its testament to how deeply loved our children are xx
So so sorry, im in a similar situation, single mum of my only child, i lost him suddenly at home aged 17 years old , in beyond devasted.I really feel for you, do you have friends & family to support you?
Have you got the support of your Doctor? Just take it a day at a time, even an hour at a time…So sorry your going through this.
My heart goes out to you x
My parents are both dead and I have the support of one brother and his family. Our GP Surgery is run mainly by locums so I haven’t bothered with them.
Today I will see Dan in the Chapel of Rest for the last time. I am dreading that final goodbye.
Several people have said to me that my grief is preventing me seeing the signs he is in spirit. My sister in law smelt him in her house even though he never went in it.
On the one hand I am glad his suffering has ended. He was really suffering and I did not want that for him but I miss the Dan I had who was well for years and enjoyed life.
My son died of secondary bone cancer on the 17th July 2023. He had right side cerebral palsy ,moderate learning disability and epilepsy. He was a fabulous person and fought so hard. We have a large picture of him on the wall,and when I feel sad I talk to him.
@Basset Just to let you know that I will be thinking of you today. I know it wont be easy for you but look on it as a celebration of Dans life and the things he achieved despite the difficulties he had.
My heart is with you. Reet xx
Thank you.
I’ve kept waking up all night and both myself and my niece have heard noises all night. We could hear someone walking around the bungalow and making a point of the fact. Dan lost the ability to walk 25 years ago so we do think it was him.
I am so sorry for the loss of your boy, we lost our 27 year old daughter Ellie in July 2022 and like you regardless of their age they are still our babies.
Your niece is absolutely right, just breathe, at first I couldn’t even take it day by day, hour by hour so you take it moment by moment or even breath by breath if you have to.
Be kind and gentle to yourself this is the worst possible thing you are going through. Accept help for all the mundane things if you feel you can’t use those as a distraction and surround yourself with the people who are happy to talk about Dan and not afraid to mention him in front of you in case you get ‘upset’ or you weren’t thinking about him at the time, the worse thing has happened to you they can’t make you anymore ‘upset’, tell people this if you have to.
Talk about him as much as you want in front of who you want, cry, laugh, scream, if this makes them feel a little uncomfortable it is nothing in comparrison to losing a child. Just because our children have died it does not mean they never exisited and we shouldn’t talk about them and include them in whatever we see fit.
Though it may not feel like it at the moment if there is an opportunity to laugh then laugh, don’t feel guilty it seems Dan liked a laugh and a joke so continue that, my son has a great sense of humour and since losing his sister we have laughed and joked as much as we can we’ve embraced the things she found funny as a family and this I think has been a little therapy for us all.
Its such a difficult time my heart goes out to you.
Its so hard visiting our loved ones in the chapel of rest, i went every day to see my son, it was important to me to do that .Some people choose to do this and some dont.Its thecmost excrutiating pain…Did you take some one with you? Support from some one close to you.x
