Thank you Reet, Jim and everyone. I had my daughters cousins down yesterday which went well and I had to be strong to cope but managed it and there I saw glimpses of my daughter in her cousins and this morning a picture of my daughter just came in to my head, and I was straight in meltdown just out of nowhere. I don’t think that many people understand that. The love we have for our children is so strong that it can’t ever be matched and the love they had for us will never be replaced. As you say Jim I would love my daughter to be alive living in Scotland then I would move heaven and earth to see her. I would get in my car now book a Hotel for a week or more and get to her. If only that could be. Even when you are fairly relaxed to me its like a film running in the back of my head all the time of Jessie, and her missing presence is acutely there at every venue or event or interaction, the empty chair again syndrome, the loss of her laughter, the things you want to tell her that’s happened in the day the funny things etc. There was a strange thing that happened yesterday we were in the pub where we had my daughters wake and an empty dry coca cola glass just exploded and shattered everywhere in front of us and the bar tender. Glass was everywhere and I said to the bar server has she ever seen that happen before and she said no perhaps there’s a scientific explanation to that. We do have a few friends that are really supportive but they admit they don’t fully understand but their love and compassion helps a bit yo ease the pain . Xxx
Hi all. Thanks for the replies. Kate , you and your friend in the deli are lucky to have each other as friends. I think it makes all the difference to have a bond with someone that you don’t have to explain yourself too. Victoria, Marina. You are both rite. That’s exactly my point. People don’t understand, or they see you and assume that after grieving for a few months you must be back to normal, what’s all the fuss about 
. If only life were this simple.
I remember being at work once. I work for a big company that has a “we care” programme for all it’s employees. I got called into the office once by a bloke who informed me that he is the company mental health officer. This guy has never been married and has never had children. He’s 45ish . Just totally career driven. He doesn’t drink or socialize. His hobby is weekend warrior with the territorial,s . I remember him sitting me down and saying if I have any problems I can open up to him as " he fully understands" the problems facing someone who has lost a child. The reason he knows this. He’s been on a coarse. . I just sat there in silence. I wasn’t about to inform him, he knows absolutely nothing of the depths of despair we reach. How you feel you had your insides completely ripped out. How the rest of your life has been ruined beyond compare. How you have lost all your confidence, self esteem, your drive your appetite. How you feel guilt, anger, sadness. You feel lost , alone, helpless, and you have to spend the rest of your life walking the earth carrying this terrible burden. You can’t even begin to describe the emptiness you feel. I let him have his 5 minutes of self satisfaction thinking that he " is in the know". I chose not to burden him, it would probably have frightened him actually hearing the REAL devastating effect of loosing a child, you don’t learn that , " on a coarse". Or from a book. We, the real people are the ones that somehow find an inner strength so that people who haven’t lost a child are shielded from how truly horrible it is to live with. If it was etched all over our face every time we went out we would be treated like monsters. The price we pay for not pouring our heart out to people on the periphery. They think we are over it and all in the garden is rosey and life can carry on as normal.
Thanks for listening
Jim.
Hi jim everything you say so true . Even me and my partner are on different pages like you i sit up all hours . I woke this morning really sad .today i was due my yearly mammogram and i for the first time was scared . Scared for jess say the results are bad . Its madness i didnt feel that when i got told i had breastcancer five years ago . Now im scared she cant loose anyone else. I said to my partner im sad for life at the moment i want my boy . I miss everything the laughter the just him being my beautiful sam . My partner wont talk . But i have a lovely friend who gets me .ive sat with her for few hours today .shes my rock . So is jess but i feel i need to protect her .sorry rambling love to all zoe 
Dearest Jim , Marina , Andy Kate , Victoria . If you have someone who will listen to what you have to say , I envy you . I must admit I only have a sister in law , who has lost a Grandson , and Husband , , who truly understands as she has been through it . We went out with Johns brother and his wife for a meal last week , and tried telling them the exsperiance we had with Jackie ,who did an amazing reading , Dawn came through we must have asked her 40 questions and she came through answering everyone , for us it was a phone line to her . And all Johns brother could was smirk and shake his head , as though I was mad. After we left I felt really upset , my Husband , said I don’t know why you waste your time , nobody understands what it’s like to lose a Daughter. But we believe and that’s all that matters . Maddie xx
Dear lovely, wonderful friends here.
We have just returned from our first holiday abroad together in 14 years due to business commitments and dogs.
So we are now in a position to employ a very experienced and trusted dog sitter and block our calendar to bookings.
The holiday was wonderful. Postcard from Provence. Magical really. We met some amazing people whom we will be in touch with for sure.
Anyway, I digress. So I was so desperate to see Brooke and give her our gift, a beautiful Unicorn with a Fairy Princess rider. Needless to say she is delighted. So when I drove away along the beautiful River Ness, the white footbridge to my left, I was suddenly overcome with heartache for our Lisa. So many times we had walked over that bridge together, holding hands or linking arms and laughing about something. Pushing the pram with her newborn and then going to the cafe in Debenhams so she could breast feed her baby. She was such a dedicated and wonderful mother. The tears are flowing ad I type. The memories flood my mind and I just can’t believe this utterly selfless, brave and wonderful person, our second beautiful child has left this earth.
Sad doesn’t even touch it.
Love to you all dear friends.
Kate xx
Hello All,
I have been catching up on all your posts, Jim you are like breath of fresh, you express yourself so well, that description on what it feels like to loose a child is spot on, I want to share that with everyone who seems to think we are over it, they don’t have a clue, yes you almost feel like letting them know how you really feel but like you say we would frighten them, one friend said how if I hadn’t lost Matt then I wouldn’t have met all these other lovely people on my journey! like some good had come from it, are you frigging kidding me 
I think she meant well but really!!
Maddie take no notice of your stupid brother inlwaw, you have all of us to talk to you don’t need him
Zoe I hope your checkup goes well, I totally understand what you are saying, at least we can say on hear how we feel aa we don’t like to burden our children as they look to us for support even though we struggle to give it we somehow manage
Lisa im so glad you had a lovely much needed and deserved break, I’m sorry your having a tough time its understable as you would normally come back and be telling Lisa all about your lovely holiday 
sometimes we need to have a good cry, Matt’s girlfriend messaged me to say she wanted to visit and have a chat with just me, we arranged to go for lunch, I knew it was to tell me she had met someone its been over 3 years since Matt passed and I am genuinely happy for her but the pair of us couldn’t stop crying, for me it’s the fact that Matt’s never going to get married or have children or a future, it just makes me so sad, I couldn’t stop crying when I got home, I’m fine now it’s just another part of this shity journey.
Sending much love to you all, as Jim would say thanks for listening 
Michelle xxx
Hi, I’ve been reading this post for some time now but never felt able to post, I lost my son Scott in a motor bike accident in May, he was 29, he was full of hope and dreams for his future and now all that is gone. I don’t know how to live this new horrible existence but have to keep dragging myself out of bed every morning as I have two other sons and a husband that need me, but everything seems pointless now. I seem to be in a vicious circle of disbelief ( this can’t be real) and then the reality hits me again and then back into disbelief and I can’t get out of that circle, I don’t know if that makes sense to anyone. Scott was so loving and caring to everyone and I saw him every day and now I can never see, talk or hug him ever again, how do parents keep going? The pain and longing for him back just seems to be getting worse
Dear Dee,
Am deeply sorry for the loss of your precious son Scott, am sorry you have had to join us on this awful journey, everything you say makes perfect sense and if you have read some of the previous posts you will know we all feel the same pain, even though ww are further a long the the journey, as time goes by you do have better days and somehow manage to get through
Just take baby steps and be kind to yourself, it’s been over 3 years since my son passed and today I have struggled to get out of bed, I often wish the day away, keeping busy is key to surviving, take care my friend and come in here and feel free to open up to us all because we are all here for you
Much love from Michelle xxxx
Hi Kate,
Sorry for the type error xxxx
Hello All,
I have read all the posts, and Jim you are so right, Zoe, I understand this is the new normal, my Sam will bev 40 on the 17th October, and his best friend Jason rang and said I have booked a meal for all of our friends and I would like you and John to come. Jason organises this every year and to be brutally honest I would rather not go but how can I say that to him. Wherever you saw Jason you saw Sam and vice versa, they were inseperable now Jason has a little boy who he named Samuel ( he rang me and asked my permission to name him after Sam) Jason is such a lovely chap, they all sit round the table and talk about Sam and what he got up to and there are still plenty of stories I know nothing about. Last time they told me about when they went snowboarding in Tiennes and when they got to the top they all said they’d love a beer…Sam apparently pulled a can of fosters out of his sleeve and they all had a drop before snowboarding back down! I miss Sam so much and I know after almost 6 years the days leading to his birthday are worse than the actual day. Like you all if I could turn back the clock and ask for it to me not Sam I wouldn’t hesitate.
Love Helen
Hi @Dee27, I also lost my youngest son in May. what you are saying makes perfect sense to me. I feel as if I’m waiting for something but I’m not sure what? life feels so empty. My son was 41 and severely disabled and I had cared for him all his life, I miss him so much. I had hoped that I would start to feel better after a while but the pain seems to get stronger with each day. I get up and just want the day to be finished so I can go back to bed. I try to do things but don’t have any interest. Like you I have my husband, other son and beautiful granddaughter so keep going for them I just take each day as it comes and don’t want to look to the future without my lovely son. it definitely helps to come on this site and be able to talk to others who really understand how we feel. I have good friends but unfortunately, they don’t understand how I am feeling. They mean well but all they keep saying is have a holiday it will do you good, I want to scream, 'no it wont ’ . We always had lovely holidays with my son and I just can’t think of anything without him. I wish i could offer you some words of comfort, but I know that there aren’t any. as others have said, baby steps and hopefully with time the pain will ease slightly.
Thank you for your replies, I am so sorry that you have all lost children as well, Reet41, I know what you mean when you say you feel like you’re waiting for something, I get that feeling as well but don’t know what I’m waiting for maybe for this to all be a nightmare and I’m waiting for it to be over and I can have my Scott back or maybe I’m waiting for the day that I can follow him, I don’t know, I get this horrible feeling in the pit of my stomach all the time, I too hope for night time to come but also dread it because I know that morning will follow too soon and then I have to do it all over again
No problem you lovely girl. Still feeling wobbly since coming home from holiday. Its like we are different on holiday, although I did tell a couple of lovely people who were in our walking holiday group. Sometimes it’s easy to open up. Our guide, a lovely French lady who lives now in the UK was one of then.
She sent me a message saying how she admires my strength and my ability to open up to the right people.
I hadn’t realised it myself but she is right. We seem to know when and to whom we share our shocking revelations.
It still is awful but we get by somehow.
Much love, Kate xxx
I don’t know really what to say, I think we all highlight the feelings and pain we are all going through and certain events, thoughts and images can make our despair so much worse. There is a local man who was autistic in hospital isolation for more than twenty years, he is just autistic. The council have finally sorted a community placement after more than two decades. My daughter being autistic had eleven weeks in isolation when she was 17. They just have a plastic mattress on the floor in a bare room and are fed on the floor too. Just seeing that this morning on television has put me into such despair today and it’s like you are waiting for something to happen. Many thoughts immediately went through my mind, would my daughter get a placement like that and when - but my daughter is dead. The government have made a pledge to reduce the numbers of autistic people in hospitals by 2024 but my daughter has died and yet theres still a thought that my daughter will benefit from this in some way. The relief will be it will save lives if it happens but not for us it’s all too late. Its a living nightmare without my daughter that she had so much love for us and so much to give the world. Just getting through each day now is an achievement in its own right. I never felt vulnerable, scared of the future or searching to be more loved until my daughter died, and now you just don’t know who you really are, what the future holds or how things will end but I still have some hope. Kindness, compassion and helping others is more important now than ever before, and that is just helping me to get through the days. Xx
Dear Andy,
My heart breaks for you, you are so right helping others really
does help to get you through, sending you love and gentle hugs
Michelle xxxx
Hi Kate,
It’s amazing how sometimes we can open up to strangers as you say you get that feeling that you want to share with them, its not something you plan to share with anyone but sometimes it just happens and seems to touch them very deeply too, I have made some lovely new friends on this journey including all of you lovely people
Sending you much love xxx
Hello all, I’ve just been away for a long weekend, which I didn’t really enjoy because everywhere I go, I take my sadness with me. I tried to puton a brave face and make the best of it.
I’ve just been catching up on all your posts. Many of the things you say chime with me. Especially when Dee27 mentions “a horrible feeling in the pit of my stomach”. I get that, too. Also a salty taste in my mouth, which must be suppressed tears.
It is now six months since my son died, and the days are so bleak.
I do believe being kind to others helps in some way.
Thank you all for listening. Take care. Sending love - Susan- J.
Hi susan. Its such early days be kind to yourselve and take baby steps .your amazing to get out of bed in the morning .i lost sam 17 months some days are better than others i feel i wear a mask in the day im ok then of a night i crumble xx
You too Andy be proud uour getting up in the morning this new life dont make any sense but we have to learn to live with it for our own sanity . I know it dont seem right the yearning to talk.cuddle.laugh with our kids it kills me sam was 25 but he never went out only to his sisters he was always here my best friend my voice of reason our gentle giant .i hope in time the pain eases big hugs to everyone love zoe
Hi all. Reading the posts from people who are 6/12/18 months in. I can genuinely say I don’t suffer from the same feelings as you do to such a degree. But I can remember and relive only to well of how it was back when I did. The utter heartbreak and despair the numbness of deciding wether to get up every morning. Trying to kickstart yourself to do anything at all. Even to hold a conversation. Absolutely everything is so pointless. Feeling that there is no future. My wife often recalls how I would sit for hours just looking out of the window with tears constantly streaming down my face. I read a post on another thread , a guy said he doesn’t drink for enjoyment he drinks to blank everything out. The problem is, it’s still all there the morning after. Waking up from any sleep let alone a drunken sleep , you get a few seconds of thinking all in the world is normal until the truth smacks you in the face and you have to relive your heartbreak all over again. I think most of us have the thoughts that we would gladly follow our children but dare not mention it to anyone as they would think we need medical attention. It’s not a crime to want to be with our lost children. To me it’s a natural instinct. But I don’t think most people would understand that. If I could say there are any positives at all it would be this.
I’ve been to the very bottom. Sam was an only child. I can’t quantify how much I miss him there isn’t the language that describes the depth of missing him. I think about him every single day. But the difference between now and when it first happened is. I can carry on with a partial normal life. This may sound strange but in the beginning your loss is all consuming, it takes up your whole life , it dominates your every thought. How it affects me now. My personality has definitely changed.
For 95%of the time I can keep a lid on it!!! Every now and then something will trigger my tear ducts and usually it’s something really random or silly. An advert on the tele. A song on the radio. Some random person in the supermarket with a child. A picture of a holiday memory on Facebook. A packet of Sam,s favorite sausages. But for the majority of the time I can cope. Loosing a child mentally and physically breaks you down and for a long time it feels none repairable. You feel you will be broken forever. You can’t possibly ever see that there is a rainbow on the horizon. The day will come when you just manage your situation better than you are doing at the moment. Sam plays a massive part in my everyday life but it doesn’t cripple me the way it once did. If I could go back and speak to me after I first lost him I would say, the day will come Jim when you can see beyond your loss and start to live a life again. However I wouldn’t have listened at the time because the pain is so immense. There are better days ahead. That may fall on deaf ears at the present. While deep in grief there doesn’t seem to be a future. But as the grief subsides you will see that there is.
Ok thanks for listening
Take care
Jim
Hi Andy, it must be so hard for you coping not only with the loss of your daughter but also the trauma that she went through.
It is criminal that people with autism and learning disabilities are still treated this way. We are constantly told following enquiries lessons have been learned but unfortunately that doesn’t seem to be the case. I am saddened that parents with children with disabilities are still fighting the same fights that I had 41 years ago.
Like you I think that being kind and helping others is a way forward. I’m not up to it at the moment but hopefully in the future I can look at ways of being involved to help others.