Hi we lost our 26 year old special needs Son in Jan! He passed away with SUDEP

Dear Ann so sorry for the loss of your son in January , I lost my daughter ten years ago she had cerebral palsy she died in her sleep it was a terrible shock she was 18 we miss her so much, unfortunately we are going through the terrible pain again as my son who was 23 died in June this year We are just So so sad , I hope you find some comfort on this site with others going through similar experiences Take care xx

Hi Jayne
I am so sorry for your loss.
Kieran had Severe Epilepsy & Developmental delay. He was 26 and had suffered with uncontrolled seizure since he was 4 months old! He needed 24 hr care. He was such a happy boy/young man. The hardest part is he was so well, he went off to his day centre happy on the Friday morning and into respite for the weekend. The Sunday morning we received that dreaded phone call to say he had fallen asleep. Having lost my Mum just 13 months before doesn’t help. Take care Ann

Hi ann
It’s a terrible shock for you and grieving for your mum as well life is so very cruel to some of us, when Megan passed away she had been very poorly a few months before and had needed surgery but strangely she was beginning to make a good recovery and had gone back to school we were so shocked to find she had passed away in her sleep this year was ten years, my other 2 children were devastated they were 13 and 14 at the time, but we became a strong team supporting each other and they were both doing well in their adult lives, but now we have suffered a tragic bolt as my dearest son just 23 also passed away in June, we are still in shock, and my remaining daughter is devastated, I hope you find some comfort on this site xxx

So heartbreaking, I’m so very sorry for your loss. I lost my precious 22yr old son in June to SADS sudden arrhythmia death syndrome. We are so devastated & miss him every second of every day. Sending love and strength to you & everyone xx

Hi Jayne
Me again! Sending love and strength to you & your family :heart: hope you saw my other post about messaging me when you go away with your girly friends :heart: hope you have a well deserved time away with them. A change of scenery will do you good I’m sure :gift_heart: xx

Hi rach
Yes thank you I did see your other post and I will bear it in mind it’s the 16 th Oct i go away , my daughter is home this weekend which is lovely I just dread her going away again ( although she’s not far just an hour away) Hope you’ve had an ok weekend ? It’s just so hard isn’t it I feel like I’m dragging a concrete block around with me , take care xxx

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Dear Rach25
So sorry for your loss :heart: This year has certainly been a hard one. If only we could turn the clocks back,I would not off sent Kieran of that Friday morning to his day centre and respite! But then I think it could of happen here at home and me finding him in his bed gone would of been harder! I can go into his room and remember the good times! Though I can not bring myself to clean his wardrobe and clothes out yet. His hospital bed has gone back and his room has changed into a playroom/bedroom for our Grandchildren so laughter and fun room xxx

Ahhh Jayne I hope you have had as lovely time as you can with your precious daughter, it must be so hard when she leaves. Does she live with someone? I find comfort having my eldest son living at home with us but I guess in the long run he needs to find some independence from us & hopefully a nice relationship to share in. I feel that is a long way off due to the sadness and sorrow & of course covid restrictions.
I’m so tearful and in so much pain it’s horrendous. I like everyone desperately miss my boy :broken_heart:
Today I haven’t even been able to get dressed :broken_heart: just so so sad. Strength and love to us all…one day at a time xx

Thank you for your lovely message & support. It certainly has been the worst year of my life. I have sadly experienced grief for most of my life…my mum took her own life when I was 5, my granny took her life when I was 6, other friends and relatives have passed, we came home & found our beloved spaniel had died 4 years ago…now on another level my precious boy. It’s just too much to bear, I hate my life, I just want to be with my boy. My husband and my other precious son are my reason for living as they mean as much to me as my Ryan does but I just miss him so much.
Strength and love to us all xx

Hi Rach25 ann31bel
It’s just unbearable the pain is so physical, my dear son passed on the 13 th June I can’t bear to open the door of his room I worry it will be covered in cobwebs but I just can’t stand to see his room without him there, I know I will have to face it at some time but for now I just can’t, I was a lot stronger when my daughter died although many of the same feelings i felt more able to sit in her room and sort through her things, my dearest daughter has just broke down saying how sad and jealous she is of people with sisters and brother s and how she will never be an aunty she is so scared of many things in life now and I don’t feel able to reassure her as for most people life follows the normal Pattern but for us and others it just doesn’t and sometimes it just seems to hit the same people again and again, it’s so painful so sad our lives are all changed for ever I hope we all find some sort of peace and reasons to get up get dressed( don’t worry about not dressing rach ) and experience some contentment in our lives Love to you both xx

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Thank you Jayne, love to you & strength to get through another day :heart: xx