So much. James passed away on my birthday in march this year aged 20. He sadly developed a neurological condition called dystonia in his teens. He were fine until then. From diagnosed at 16 he lasted 4 years. I saw my son deteriorate losing his speech. Mobility. He had a feeding peg. A catheter. Used various chest equipment too. He were 24.7 care for the last 2 years in a hospital bed at home. I looked after him. In that time he had 15 aspiration pneumonia 3 sepsis. Covid. And deep brain stimulation operation. He were a total inspiration. We spent 3 years on and of the neurology wards and the hospice. I’ve never had answers as to why my son developed this condition. He were my best friend. I did amazingly to cope with his condition plus I’ve twin sons 29 with autism living at home. It’s heartbreaking. It were his 21st birthday last Sat. We let balloons of at his favourite place. We remembered him. I have made him his own personal garden here at home his ashes are there. I recently saw a clairvoyant. She were great James came through immediately while this were comforting. I just want to see my son again.lifes not the same I just feel I’m existing. I’m not afraid of dying anymore xx
Hello @orchard39, I’m so sorry for the heartbreaking loss of your son James. He sounds like an amazing person - thank you for sharing a piece of your story with us.
I wanted to share this thread with you - it’s a very active support thread for parents who have lost children and who will understand some of what you are going through. Loss of our son aged 27 You might wish to have a read through it and share your experiences there too, when you feel ready.
There is also an organisation called The Compassionate Friends who offer support to parents who have lost a child. Their volunteers are also bereaved parents. You can find them here: https://www.tcf.org.uk/
Please keep reaching out, you are not alone.
Hello Orchard 39 I am so sorry for the loss of your lovely boy what he endured throughout his short life is hoŕrendous.He sounds a very courageous young man.You must be a truly amazing person and you will carry on being that amazing person for your twins.My son did a memory wall in our front bedroom for his dad when he passed 11 years ago it gave us both comfort as will your little garden for James.
March this year I lost my lovely boy.I will add to the memory wall but like you I just want to see my boy again hold him kiss him tell him how much I love him My love to you and your boys Marg xxx
Hi marg1 yes the pain is totally unbearable at times. I’m trying to raise awareness for James condition. Not many people have heard of dystonia. I can hardly believe he’s not here. I think the grief affects relationships with people too. Big hugs xx
That is such a positive thing to do .No I had not heard of dystonia .In fact I have had to type it in three times it kept coming up as dystopia.You are so right about grief affecting relationships. Losing a child I feel is the ultimate loss and its bound to change us and our relationships and however well meaning people are nobody can ever truly understand how we feel unless they have been through it themselves and we wouldn’t wish that on anybody. Good night and god bless will try get some sleep now not easy these days xxxx