Hi everyone
I lost Wlllliam on the 7 may this year, he was 40 .
He was with me 24/7 apart from a couple of nights a month when he had respite.
It was so quick he was poorly on the Thursday, took him to hospital Friday and sunday they said nothing more can be done, sepsis.
Some of this last words were I’m not going to die am I ?
It’s breaking my heart.
I never thought of myself as a religious person but I keep thinking is he ok who’s looking after him.
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Hi @Teresa8,
I know the feeling well, when my baby died in 2007, & when my mom passed in 2021, I started to question what had happened to them, where there spirits were. I have often felt the presents of my baby, I believe he is with me in spirit.
As for my mom, I don’t know whether it was just my mind trying to console me mentally, but a couple of nights after my mom passed, I had a dream she came to me, & she said when she passed, there was a little man called Colin waiting for her, he was there to talk to her about what she’d done in her life time, & the way she’d treated people, & help her come to terms with this. As I said, I can’t be sure whether this was in any way real, or whether it was something in my mind psychologically, trying to give me closure by telling me what I felt I needed to hear.
Sending hugs of support.
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Hi
My daughter died sudden .
She was nearly 22 and was special needs. I know what you are going as a special needs mum we never stop protecting our kids no matter how old they get. They are so vulnerable and some misunderstood.
I felt like someone had ripped my heart out and guilty that I could not protect her from this syndrome which I was not warned about.
I t took me 5 years to get to the person I once was but I will never be a full person again and I have learnt to carry the pain with me.
I am now able to remember my daughter and remember the good times. Take a day at a time, cry scream scream listen to your body.
Be really kind to your xxxx
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Jeanie
I’m so sorry you lost your daughter, they had so much to contend with in their short life it’s not fair.
I feel like you did, my heart is totally broken, I have cried myself to sleep every night since he died only to wake up an hour later and start again.
When I get in my car I start crying because he was always sat next to me, he loved long drives.
I was in the process of looking into support living, I’m 67 and thought I would get the ball rolling to find somewhere, although Wills said he wasn’t leaving home!
My biggest fear was if I died suddenly the social services would put him somewhere that wasn’t suitable and he hated it, and with the state of the health care system at the moment I don’t think they would give him the care he needed.His bedroom was downstairs and he always rang me if he needed anything in the night, what I would do to hear that phone ring again 
xx
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My son was 19 and had cerebral palsy and it’s so heartbreaking when your sidekick has gone,my son needed 24/7 care which I mainly done, everything reminds you of your child but in Nov that will be 2 years peters dead and I’m just starting to deal with it, grief counseling has helped me a lot.i go to the cemetery daily but I miss his smell,the touch of his hands but mostly miss watching him sleep and the fun time we had during the night while everyone else was sleeping.
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Hi T
Like I said it took me at least 5 yrs . I have also got a son who is special needs so I. a daft sort of way it helps.
But you are at the beginning of this journey we all don’t want to take. Take one step at a time. Do t think you have to do things if you are not ready. Your emotions will be all over the place if you are like me. There will be ambushes everywhere me it was her favourite music or TV program.
I once ran out of Morrisons leaving my shopping because a record was playing.
But please keep in touch xxx
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Hi Jeanie
Today has been awful, I went shopping and had tears running down my face because of all the things he loved to eat. Then drove past the park where it was party in the park weekend with live music, I would take him every year.
Xx
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Sorry for the loss of your son food giver, I kept the pillow case from his bed and have his ashes in my bedroom kiss them goodnight every night
Might look into counselling.
My husband and daughter are back at work next week, I’ll be on my own for the first time.
Xxx
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First time alone is very difficult. I actually went back to work too soon to be honest.
I worked in a special school ad a HLTA.
So every little thing set me off at first. What we found helpful was talking to each other. We have a mini rose tree outside called Elizabeth and it flowers twice per year. I kept her favourite Winnie the pop and when I am feeling down l give it a big hug and cry.
You will get ambushes like today for a while l know this am old saying but I’m time when you understand them it gets lighter.
.Like I said
Hi before you learn to carry the pain but it never goes away for me l never want it to because know she is still with me .
Xx
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I dreamt about Wills the other night, strange because I don’t remember dreaming about him before.
We were in universal studios in Florida, he loved Florida and we have been so lucky to take him many times, we were on the Jurassic park ride, also his favourite films, he thought he was going to fall out so I wrapped my arms around him and we sat like that for the whole ride. Which was strange because he didn’t like people touching him to much,.xx
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Hi T
I sometimes have dreams of Lizzie.
I find them a comfort l hope this is the same for you,
Xxx
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Hi Teresa so sorry to hear about your son. Its absolutely heartbreaking i toyally understand. I lost my son last march on my birthday aged 20. He developed a neurological disorder at 16 called dystonia which progressed he were 24.7 care. We were in amd out of hospital neurological ward for 3 years and the hospice. In that time he had 3 sepsis. 15 aspiration pneumonia. Covid and deep brain stimulation. He were amazingly strong. I cared for him at home alone. My mind still thinks hes in the hospital. I try walk a lot. I have james ashes in my garden. Il never be the same again i lost my best friend. Big hugs xx
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I too kept peters pillow and still use it but his smell has long gone,I still have his aftershave and spray it on his bed and lie there.i tried distracting myself with volunteering for a special needs charity and a food charity but have cut it back a lot now as I’m having flashbacks and the counselor said it’s my brain finally accepting peters gone.i have phone counseling and think it’s better you don’t have to talk face to face.speak soon x
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My son had hypotonia and was dystonic for the first three years after his brain injury,it’s so good to have people who know what we go through or went through with our children.people who don’t have special kids don’t have any idea of what we go through.im right here with you,the heartbreak is the hardest, actual pain that takes your breathe away,wakes you from sleep and puts you in a permanent fog.i hope you have some support from someone.sending love x
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It’s been a bad day today, cried most of the day. Keep thinking of all the things he’s going to miss.
Dropped my grandson off at his work as soon as he got out of the car I broke down, me not the car, because we passed a Tim Horton he loved a Tim Horton breakfast.
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I call these ambushes. You are still in shock give yourself a break.
Cry scream if your body is telling you.
This pain is raw no other pain compares xxx
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I’m truly sorry for your pain. I know exactly what you are feeling sadly. I lost my daughter on 26th March this year. She had Downs Syndrome & I’ve spent my whole life with her. Loving her. Caring for her. Needing her as much as she needed me. I’m lost. I’m empty. I’m dying inside. How do we get through this pain? I’m sorry I can’t help you but I wanted you to know I understand completely what you’re feeling & going through xx
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Mumto1angel we have to take each day as it comes, when you want to cry do it, don’t ever hold your feelings in for anyone.only other parents of special children know what our life has been like, personally I’ve waited over 18 months to start counseling and it’s helping me realise I tried to distract myself when Peter died throwing myself into volunteering so I’ve cut that back and even now when I wake up I still look for Peter,my brain is slowly dealing with this huge loss.we can’t ever deal with the heartbreak as it will always be there.i try to remember all the good memories we made in the 19years we had and look at photos all the time.im here for you all,it’s good to have someone to talk to that knows how you feel.xx
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Foodgiver thank you for replying to my comment. I agree with you when you say parents of extra special children grieve differently because all we know is taking care of our beautiful children & there is no way to escape the emptiness that was our life. I’m the opposite to how you initially dealt with your massive loss. I’ve completely isolated myself. I can’t be bothered talking to friends or seeing anyone. Most just want to do “small talk “ I don’t want to, I have no interest in that. I would rather sit on my own in silence. Since coming on here a couple of days ago, I feel like I have finally found people who understand the devastation of losing a special child. People who know the pain hurt sadness & overwhelming hole that is left of what we called our life. I’m sorry for being so negative but I need to express my pain & here is the only place I have found to be able to do that. I’m glad you have decided to take some counselling, I am going to do that too. It’s all just too raw right now, I can hardly face waking up in the morning, definitely not ready to meet a councillor & talk. Hope we can keep talking. Sending heartfelt hugs 
to you xx
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Hi
Mumto
I could not express what you are feeling more.
At the beginning I was the same it took 5 yrs to get something like l was but you are never the same. How can we be our world resolve around our special needs children/adults. The battles we fight for them are for life if it was not for my son who is also special needs l don’t know how l would have coped we had to keep going for him xxx