My 1st time here. I lost my precious daughter on 26th March this year. Kerry was 35 years old & had Downs Syndrome. I was 18 years old when I had her but me & my partner were determined to give her the best life possible even tho we were young ( Kerry’s dad was just 21 ) we knew we were chosen to have her by God because she was 1 of God’s special children. We went on to have 6 more children, but Kerry always needed us that bit more, she loved us more deeply, she was such a beautiful, caring person. She had the most beautiful soul I have ever known & I was so blessed & grateful to have her. But, as the saying goes, with great love comes great loss if that person passes away. The pain is truly horrendous, devastating, overwhelming & every other horrible feeling possible. I am broken, lost & empty. I actually feel like I am dying on the inside & can’t even begin to see how it can ever begin to feel any different. People say time heals, you learn to live with the pain etc … but how? I know hardly any time as passed since I lost her & people will say “ it’s still early days” … “ give yourself time” etc All this I have heard already but I am desperately looking for someone who has suffered such a massive loss, as I have, & they are finding ways to cope, live, carry on. A big ask, I know! I think maybe I just need someone to understand & support me. My family are all suffering the loss as much as I am, but they are dealing with it differently to me. I just feel like I have nobody who really understands. After reading through a few posts on here I know there are others who can fully grasp what I am feeling.
Hello @mumto1angel ,
I’m so sorry to hear about your precious daughter. It sounds as though things are very hard at the moment and you are feeling broken and lost.
I’m glad that you’ve been able to share how you are feeling here and I hope that you find the community a good source of support. Everyone here has experienced the loss of a loved one and will understand some of what you are going through.
I’m sure someone will be along to offer their support, but I wanted to share a few Sue Ryder resources with you that may help you right now.
-
Our Grief Guide self-help platform which has information, resources and advice to help you through your grief
-
Our Grief Coach text service, which sends you personalised text support via SMS
-
Our free Online Bereavement Counselling which is held via video chat
-
Our Bereavement Information pages which can walk you through what you are going through.
Another good place to get support is The Compassionate Friends - for families who have lost a child of any age. 0345 123 2304 https://www.tcf.org.uk/
Take care - keep reaching out,
Alex
I wish there was somewhere people could meet who have lost a child whatever their age, it is so difficult, some days I feel I am drowning in grief and pain. I am thinking of you and I am sure who ever reads this are thinking of you also.
Thank you & sending love & comforting hugs to you. Just got back from the cemetery. I hate going there, but when I’m there, I can’t stand leaving. There’s no right or wrong thing to do. Just feel so hopeless. Why does time seem to go so slow? When Kerry was with me, there weren’t enough hours in the day! But now, the days are soooo long & empty. It’s like I wake up in the morning & can’t wait for it to be bedtime. Why is that tho? Because tomorrow will just be the same as today. Long, lonely, empty days with nothing but pain & longing for my beautiful daughter. My life ended the day my Kerry went:cry:
All I’m left with is a sad existence & hoping & praying that 1 day I will be re united in heaven
I know exactly how you feel. The family are moving on going back to work but William was my life, we did everything together. The car is so empty without him.
I don’t want to talk to anyone outside my family.
Everywhere I go reminds me of him, I can’t go into supermarkets because of all the things I bought him.
Lots of lovely people on here that will listen to us and share and support us.
A day at a time:heart:x
T
Oh Teresa8 I’m exactly the same. Can’t bare the thought of going shopping. Every aisle there would be something we would buy specifically for Kerry. Things that we wouldn’t buy for anyone else, like potato salad, fruit pots etc. I don’t talk to friends anymore. It seems all they want is small talk. I can’t do that anymore. I’d rather sit in silence & alone, which is what I find myself doing almost all the time. The sadness is just heart wrenching & I can’t imagine it ever getting easier. I don’t sit downstairs since losing Kerry, there’s just too many memories that I’m still trying to think about, & the sheer emptiness downstairs is too much. So I sit in my bedroom. The only time I go out is to the cemetery. Can’t stand to go anywhere else & I haven’t done since the funeral in April, except to pick a headstone, which we did 2 weeks ago. I think because we cared 24/7 for our children, the loss is different in the sense that our life revolved around them & their needs. I’m guessing, you, like me, didn’t have a life that didn’t include your son. So now they’re gone, it’s like life has stopped, for us, but not everyone else. So that just makes the emptiness & loneliness more difficult. Thank you for talking with me. I appreciate it so much because I feel we are both going through the exact same feelings & I need so much to have someone to talk to. I hope we can continue to talk. Sending you sincere hugs 
xx
Hi mumtoangel
I have Williams ashes at home in my room.
I’m not sure what I want to do yet. I’ve sent away some of his clothes to make a memory bear, hopefully it will be here soon.
I’m not really religious, but when they turned the machine’s off I whispered in his ear to go find grandad(my dad), I just wanted to know he was ok.
The only person I’ve met up with is a friend who I met in anti natal classes 40 years ago! She lost her special needs daughter 10 years ago, she knows exactly how we’re feeling.
Take care
Speak soon xxxx
Teresa8 xx
Having a bear made with Williams clothes sounds like a very comforting thing to do& will definitely be looking at that for myself with some of Kerry’s clothes. I think keeping William’s ashes at home with you is clearly what you need right now. Perhaps 1 day you will decide otherwise but whilst you have them, they are clearly what you need right now.
I don’t know if I’m religious or not. I guess I am to a certain degree as I do believe in God but I’ve never been a church goer or anything like that, but since losing Kerry I’m finding myself thinking about God, heaven, angels etc a lot! I think I’m holding on to hope that 1 day I will be reunited with Kerry & I guess believing in God & heaven is how I am getting through this nightmare that is my life. Sending love xx
Helen73
Thank you for your kind words xx. I’m so sorry you are also going through this awful thing that is now our life.
I also think it would be good to have a group meeting for parents who have lost a special child/adult. To grieve openly with others who are experiencing all the same feelings. Yes, people grieve in different ways, but the actual grief itself is the same for us all. Although I still have my partner of 39 years, & my 6 other children, I don’t think they understand how I am feeling, they try so hard & I’m thankful for that but the sad fact is I know they just can’t understand. Only another parent can 
sending you hugs hope we can keep in touch xx
Omg I feel the same when i go out everywhere everything everone just reminds me that your not living my 28 year old son took his life i dont know what to do i open my eyes each day to my sons life playing out in my mind its torture i miss him he was so strong i never thought he was so low its heartbreaking all what if or if i had done this i blame myself
Lost1802
I’m so sorry for your loss I know what you mean about your sons life playing out in your mind constantly. I’m the same with Kerry, all day & night, every day & night. It is torture because there are so many “what if’s “. My daughter needed heart surgery but was never referred for it, even though she had cardiac appointments 3 times a year. We trusted the doctors to get the surgery done when it was time. They never did! Now we, like you, blame ourselves. Which only adds to our pain, guilt, devastation etc. I don’t go out either for the same reason. So many people places etc all going about their daily lives whilst mine is shattered & I can’t go back to what was living. The only place I go is to sit with her at her resting place other than that I just sit in my room or garden & go over & over my beautiful daughters life & the agonising reality that my life will never ever be the same without her. The constant never ending pain is always there. I pray you& everyone else living this nightmare that is now our life, get some strength & healing from somewhere, anywhere, sending hugs to you xx
Hi mumto1angel
I’ve been going over the time it took for the hospital to decide to operate. I took William to the hospital about 10/11 am on the Friday morning. Eventually a doctor came to see him , but it wasn’t till about 5 they sent him to the surgical ward where a junior dr said he might need a operation over the weekend and told the nurse to put tube up his nose( not sure what for) but Wills didn’t like it and pulled it out. About 7pm he was absolutely sweating buckets and just when I went to get a dr a senior surgeon walked in took one look at him and said he needs an operation now, from then on everything was go go go, but it was to late, sepsis had took over his body.
Our gp referred him in February for them to check his hernia and stoma, still waiting 
Love to you all
Xx
Hi Teresa xx
We are putting a complaint in so will wait & see what they say. Had my Kerry had the surgery she could have gone on to live a full healthy happy life with her family who cherish her 
Have you considered putting in a formal complaint? It’s excruciatingly painful to do because it means going over medical records which, I personally, am finding very difficult emotionally however luckily we do have people helping us with this so I’ve had to take some steps back as it’s heartbreaking for me. Seeing my beautiful daughters life & end in black & white hurts:cry: Such avoidable losses only makes it harder to accept. I truly know your pain xx. Sending hugs
Mumto1angel
It’s heartbreaking that Kerry’s death was avoidable.
My friend lost her special needs daughter at the same hospital 10 years ago. She was due to come home when due to a dirty needle that was left over the weekend she also got sepsis, she was only 28. She took them to court no one was held accountable they all blamed each other.
Big hugs
Teresa
So sorry to hear what’s happened. I lost my daughter about 18 months ago. I have had lots of support from Compassionate Friends. They have been a lifeline to me. Through them I have met other people who have lost a child and for some it’s happened very recently and others many years ago. They scooped me up when I was lost and broken. They understand because it’s happened to them. The support they give is free but to me it’s priceless. Sending you hugs xxxx