On the 8th October my 21 year old son passed away. He had cerebral palsy and required 24 hour care which his dad and I did for him. We dedicated our life’s to him and we loved being with him. Even though physically he was disabled he was an absolute pleasure and had a zest for life.
He passed away from a stomach blockage with very little warning . It was associated with an op he had when he was a baby but can believe it has cropped up 21 years later. We are just in absolute pain and don’t see how we can go on. His funeral is next week and have been busying ourselves with that, but what do we do after when we don’t have this nor him to care for. The pain of his loss is unbearable and just don’t see how we are gonna get through it.
I am so sorry for your loss. My son, Daniel, also had cerebral palsy and passed away on 14th July, 3 days after his 38th birthday. His death was registered as SUDEP (Sudden unexpected death in Epilepsy). He hadn’t had a seizure for years. I miss him so much and I know how you must be feeling. It’s the wrong order of things for our children to go before us. Sending my sincere condolences. Margaret
Thank you and condolences to you too. I just feel so robbed, he was loving life and so were we. We just expected longer, and can’t get passed that. I always knew I would out live him, but not this young. My heart is just in pieces.
I feel your pain, my son was 34 and going through an amazing well phase!!
He had a trachy in 2016 which was no issue at.all.
We d been at.uclh for a kidney scan on the weds , got back, he was laughing as I was late as on duty at arsenal. I kissed him said see u.later. got in 23.45 poked head round his door carer said he was ok . I got up 6a.m for work , carercalling me , my beautiful boy had gone, I felt useless, numb . Told blocked bowel , no idea how as no issues with bowel, I cant move.on. we lost him 27th march.
I’m so sorry xx it mirrors us so much xx We were having a really good run too and so much planned to do in the future. I just didn’t see it coming. I just can’t get passed how quick it was with no warning and keep going over if I missed something in the run up before we lost him. I don’t think there was but grief is telling me different. I just can’t see how we are going to get past it either. I’m sending you love and strength. Thank you for sharing xx
If we are both the same it must be grief, surely. There is no way we could miss something like this if we have looked after them so much. It’s just turmoil and pain. I just can’t believe it still.
It definatwly is grief, I have a counsellor through work, 1st thing she said which makes sense is that nothing will ever be normal again, our normal was 24/7care , meds , appts and our childrens voice , we don’t move on we just adapt.
She has told me to stop filling my grief space with running around after people, I need to be selfish put me 1st but also use quiettime if I cry , cry, if I have happy thoughts re aaron that’s good too. .. I honestly feel for you xx
I am so sorry for your loss,special children give so much love. My son had cerebral palsy on the right side ,epilepsy and moderate learning differculties. He was aged 47, sharing a house with his friends with Mencap.He was doing well, he had no symptoms. But in 2023 he complained of pains in his hip and spine .Went to walk in hospital , doctor said muscular rub deep heat in. Asked for physio,took him to be accessed.told the same and told there was 3months waiting list. End of April 2023 pain got so bad got him to hospital ,secondary bone cancer he died within 3 months.
I am so sorry , things really need to change for our beautiful children.
I am an adult nurse and I went to extra lengths to protect pts like our children. Not enough is done.
Hardest bit was going through aarons history about 2 months after we lost him with the LeDer nurse , it cant bring aaron back but hopefully care Co s and health proff3ssionals will learn things
I am sorry pressed the send bar by mistake. I meant to say our children put up with so much. That when they are ill the medical profession dose not seem to listen . With Chris he had no symptoms until the cancer went into the bone .Even in hospital they could not find the primary cancer until a week before he died they found a small 2cm ulcer in the lesser curve of the stomach not blocking any of the bile ducts hence no symptoms.
