I lost my son in February of this year. 2 weeks after his 21st birthday he took his own life. The overwhelming loss and pain is at times unbearable. I put in a brave face, easier said than done for fear of people seeing me broken and having no interest in life. People tell me i will learn to deal with it better and that little time has passed but I honestly don’t think I will ever feel again. My son completed me and now I feel broken. Will I ever feel or smile again?
Oh Maria how awfully sad for you. I’m so sorry. It is 11 months since my precious daughter died and those early months will forever be etched on my brain.
They call this a journey and it certainly is but one we dont sign up for.
It is early day for you so tiny tiny steps for now. Don’t look too far ahead.
We will get through this. Each journey will be different but we are all in this together so keep reading and posting when you feel up to it.
Sending you hugs and strength xxx
Thank you for the words of encouragement, it’s comforting to know I am not alone on this long dark journey and that others truly understand how I’m feeling. X
I understand completely it was a year July that I lost my daughter. She was 25. She was physically disabled but had a good head on her shoulders. She had undergone many large surgeries she was invincible. But we spent everyday together I’ve lost a wonderful daughter and best friend I feel that total lost you talk of and everything i do seems pointless. I just want to be with her and no one seems to understand the fear and panic I feel when I think of her not being here with me. It all seems impossible this happened. Yes I agree we have to take each day and do what you feel you can.
Hello, just read your message. Read my post posted as luca. I completly know how you feel and can not describe this . I just cannot bear the fact Luca has gone, he was also my friend although i am his mum. I despertly miss him and the thought of not seeing him or him being here completly panics me uncontrollably. The fear is terrifying for me. I dont know how to put it into words. You have posted how i feel and what i too am suffering at never being able to see, touch hear Luca again. I yearn for him so so badly, i do not want to go on without him and see no point to anything or anyone. People say take one day, hour etc at a time but that does not help in anyway shape or form to me. I have a great husband but its of no help atall to me without Luca in my life. The pain and loss is indescrible no words do it any justice to me. I just wanted you to know i feel exactly the same as you with your sensless pain xxx
Hi tonia I feel for you it’s a horrible place to be . I’ve just been away the weekend with my partner to see his two kids and I had a massive panic attack in the restaurant I couldn’t breathe and thought I was going to pass out. I miss my daughter every month I still can’t believe this has happened I know exactly how u feel. I want to go back and change it all do this and that differently to see if it would have changed the outcome for her. I don’t want to be here living without her. Here if you need a chat x
Hello Tonia,
I’m so sorry to hear about the loss of Luca. It sounds as though things are very tough at the moment and you are feeling overwhelmed.
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 is coping with the loss of a loved one and will understand some of what you are going through.
We also offer online bereavement counselling to members of this community. This is a free service and sessions are held via video chat so you can attend from home. There’s more information about this service here: https://support.sueryder.org/bereavement-counselling
Take care,
Susannah
Online Community team
Hi, just read you reply. We seem to be on the same level with this excruciating pain we have for not having our child in our lives. Like you i just cannot bear the thought of Luca not being here with us. I cared for him 24/7 for four years so he was my friend to, we had a great relationship with many laughs also. I woke upagain with the overwhelming [ain of facing another day existing without Luca. I cry so much for him that it hurts. I try to explain that i want him here for himself to, for him to be living and seeing life as before. After all he went through it was meant to be a better life for him a new start, the shock is overwhelming from his sudden death. I to go over everything and think if i could of done anything different, to change things. Its torture. How old was your daughter when you lost her, what was her name. I tell my husband every day i dont want to be here, and its so hard for me to go on. I get into a terrible state when i have the moments of really realising i will not see him again, he is not here and i go hysterical. I smashed items Sunday in such a rage. PLease get back to me also if you wish. My heart is completly broken as i know your is to. tonia x
Hi Tonia my daughter was 25 when she passed her name was Aimée she had a syndrome called Marfans from birth and had her first heart operation when she was only 12wks. She had further heart and back surgeries throughout her life all major but she was so determine to live and got through them. The syndrome does give problems to the lungs. But it was on her last heart op in 2011 that she had to go on oxygen all day and night I spent 3 months at the hospital while she was in icu. We got her home and over a few years managed to get her of oxygen in the daytime. She had spells of needed it but they where not many. But I’m 2017 28th she had to use it daytime and never come off she went to hospital and they said her lung had actelectsis which is like a colapse . We went home and she just deterated I called her soft and emailed they said it would take time to get her back to baseline. I never thought I would lose her they never said we was on that road. But the end of June her lung colapse so was in hospital with a drain anything done on Aimée was a risk it went well and we got home but 4 wks later it happened again so in we went did the drain . Her doctor did explain that they wouldn’t restated her as her lungs wanted cope with ventilation I couldn’t believe we was at this place and Aimee always got through. They thought that to do a thing call plurodesis which is a talc injected into the space to stick the lung to the chest wall. So that was done but within 24hrs Aimee got real sick and passed away. They said it was SIRS systemic immune response syndrome. I too understand fully what your saying how your feeling because i feel just the same my daughter passed July 2018 and I can’t believe it still I cared for her 24/7 we did everything together I always stayed at the hospital when she was in. We was best friends and I miss her so much. I have panic attack and don’t sleep until early hours of the morning . I’m here if you need to talk x
Thankyou, your message brought tears to me. You seem to of gone through same as me althought Luca did not get seriously ill untill he was coming up for seventeen. He had to give up work with his dad as he was to fatigued , had no strengh atall, his dad put a porta loo in the van for Luca, as he would have accidents and had to get to a loo quick. The Crohn/ulcerative colitus gave him psc liver disease. As you we had spent 3mth from this june in Addenbrooks i was with him from crack of dawm to late eve and many nights sleeping. I dont know if you have read my first post about our journey. Luca started to breath heavly and his body started to swell from the liver disease, he caught a lung infection in hosp and we were in isolation for two weeks, but he pulled through that , shunt was put through his neck and stent in his liver as blood was not flowing to heart lots of blood veins had grown of liver to try to get to heart inside was a mess. A four hour op to just under nine. He came through it. Still badly swollen, he ended up with 2 fractured vertebrae from being on steriods and being dairy inolorant from birth, both happened while in hosp, he was in agony. When he could move i would take him dow in the fresh air in a wheelchair. He developed a rash and his skin looked like it was sunburned in there to. Three weeks after liver op, the bowel was removed. They said it was a lot worse than thought but it was done. Was in int care four days, he came through it but body still swollen, he was down for a liver transplant. He was on iv s , for iron, vits, nutrution etc, oxygen like your daughter. It was hard but he was determined and only broke down once in there after all the treatments. Pic lines in his neck and arm. We were desperate to get home. Day came, they said his heart rate had dropped by 20 while he was in hosp for the three months and would be seen in outpatients for a cardio echogram, and ortho for his spine, and the usual liver and colitus consultants. Of we went in the wheelchair. Still on lots of meds but handling his bag, his would and drain holes were not healing so still on antibiotics. Managed to get home, made a bed for him on sofa as he could not move because of spine. I did everything in hosp for him as he did not want the nurses to. We became even closer but did not think of it at the time. His stoma was healing. On 5th day of being home he was unwell, i called out doc in the afternoon. She imediatly called for an ambulance, Luca hated hospitals, i packed his bag and said it will be ok. While waiting for it i was holding his hand, his hands and feet were cold and his nails were blue, he was always hot. He was put on drips in out home, and of we went sirens on, still thought it will be fine he may be in for a while but we will get through it, they put oxygen on him also, he hated that and i knew he was worried. He was sitting up and talking. Rushed straight through to resus and int care team working around him, needles, drips etc as usual. They took him of for a scan to see if his would was infected. His dad turned up. They came back and said they were taking him up to int care and to get him settled. We were taken to a room why why settled him, within two mins of being in there a nurse came and said you need to come he has taken a turn for the worse. We were at the end of his curtain, they were fighting for his life, this went on for just under two hour, me holding onto his dad begging god to save him and his dad saying come on Luca fight. They asked us twice to stop it but his dad said no what you are asking me to do i cannot. They called it just under two hours. they said hwe had a massive heart attack. I dont need to tell you what comes next . At no time in hosp in Addenbrooks were we told what he had was life threatening, just he was poorly and was now on list for liver transplant. His bowel was removed so hope was no more props that end. He had ascetitis from the liver. Report came back inconclusive did not have a def result of death. Went to autoposy, he died from giant cell myoditis and possible sepsis, Apparantly this is very rare and only detected by a heart biopsy and then you would need a heart transplant. They said it was most prob brought on from lung infection in hosp and all this has stemmed from crohns and psc his liver, all eventually attacking his organs. His colsultant said Luca was the first patient he had lost to this in his 22 years of practice. This makes me feel no better. He died on his 21st birthday. Your Aimee is as precious to you as Luca is to me and i understand all you are saying because i feel the same thats why i replied to your post. I have no answers for you as ther arnt any. Life is so unfair and they both were very ill and tried so hard to stay here. I am completly empty and everything is pointless and you know. I too do not sleep and lay there until the early hours then have to face another day existing. I just cannot bear the thought of him not here, i long to hear him laughting or callig me to get him something, to cuddle him, touch him. I have had a ring made with some of his ashes inside but it does not make me feel any better. I so desperatly want him here as you do with Aimee, i so know how you feel. Luca was a great collector of gameing stuff, japanese animae models and book, all precious to him. I go into his bedroom and he had a room downstairs and cry hysterically touching all his stuff and my heart breaks that he is not here with it. I open his wardrobe and put my face into his t.shirts hanging up crying wanting to smell him. I tell my husband i dont want to be here, but he says what about me and we have another daughter who is 32 does not live at home but i dont want to see her. I just want my Luca back.I am completly lost as a person. we had a home i dont call it that anymore its a house, empty no fun, laughter, music, Luca and his dad laughing at me when i said or did something silly. Do you still yearn to touch Aimee, see her. Why do we have to live alongside this torture. Thankyou for telling me about your beautiful Aimee, i call Luca my beautiful Luca. Please keep talking to me as you are further on in this journey we now have to live as different people and i want you to know i know what you are feeling and suffering and want you daughter so badly as i do with Luca and the hurt is so so painfull. talk to me any time xxx
Hi Tonia my daughter was 25 when she passed her name was Aimée she had a syndrome called Marfans from birth and had her first heart operation when she was only 12wks. She had further heart and back surgeries throughout her life all major but she was so determine to live and got through them. The syndrome does give problems to the lungs. But it was on her last heart op in 2011 that she had to go on oxygen all day and night I spent 3 months at the hospital while she was in icu. We got her home and over a few years managed to get her of oxygen in the daytime. She had spells of needed it but they where not many. But I’m 2017 28th she had to use it daytime and never come off she went to hospital and they said her lung had actelectsis which is like a colapse . We went home and she just deterated I called her soft and emailed they said it would take time to get her back to baseline. I never thought I would lose her they never said we was on that road. But the end of June her lung colapse so was in hospital with a drain anything done on Aimée was a risk it went well and we got home but 4 wks later it happened again so in we went did the drain . Her doctor did explain that they wouldn’t restated her as her lungs wanted cope with ventilation I couldn’t believe we was at this place and Aimee always got through. They thought that to do a thing call plurodesis which is a talc injected into the space to stick the lung to the chest wall. So that was done but within 24hrs Aimee got real sick and passed away. They said it was SIRS systemic immune response syndrome. I too understand fully what your saying how your feeling because i feel just the same my daughter passed July 2018 and I can’t believe it still I cared for her 24/7 we did everything together I always stayed at the hospital when she was in. We was best friends and I miss her so much. I have panic attack and don’t sleep until early hours of the morning . I’m here if you need to talk x
Hi Tonia it has only been a few months for you so lots of feeling going around in your head. It’s been 15 months and I still feel i can’t move on without her. She had such a hard time from the day she was born but fought so hard to be here and seemed to always come through operations when maybe the team thought she may not. She was an inspiration to many. She had physical disability and was wheelchair bound early in her years but she was very clever and bright and funny. Her look in life I wish I could be more like her. But from the day she was born I told her I would fight for her every step of her journey here. And we did it together. After the last heart surgery in damaged nerves in her arm and as I said needed oxygen. She was in so much pain which she hasn’t been in before . It did get better but she was on MST meds from there on. And as the years pass it did improve but the last few years she was in pain again sometimes going to pain all day and having all the meds I could give and still being in pain. Her lungs must have slowly been deterating the emphysema causes air to leak but i wish her doctors had have said she was getting worse every clinic app it was ok things are going stable. I did notice her chest had become more barreled but you don’t see things when I live day in and out with the person you just get on with caring. Every day I feel guilty and question why didn’t i take her in could that have changed things. But I’m Feb they sent us home. She had said to her doctor I hope my lung not collapsed and he said yes because i don’t know what we will do. But this actelectsis is a partial colapse. So i feel they knew the road she was on and the out come could be bad at some point. Aimee had 3 heart valves replaced grafts to her aorta root and arch and rods in her spine she was a warrior . Whoever met her just loved her . You saying about crying into clothes in the walldrobe I’ve done that many a time. I find looking at photos hard. I look at them and that horrible feeling and panic comes that I’m not going to see hear or cuddle her again. I’m totally lost and feel like you everything is pointless and I wish I could just walk straight to be with her. I spent days in bed at the beginning. I am still sleeping in her bedroom. If slept in there the last year because of her needing help much more. I wish I could go back to the January and do things differently to see if it changed this outcome. I feel all this guilt. I wonder if I hadn’t let them do the talc but the doctor said if she had sent us home it would have happened again and I may have not been able to get her to the hospital in London where they knew her well and would have been at our local. It’s all ifs and maybes. But i just Can’t get my head around the year before she was doing ok. It seemed sudden onset to me in some ways. I feel we was one and I’m here when I shouldn’t be. I feel we should never have been parted. She came back 3 times that day she tried so hard I just held her in my arms and she just looked up at me I could believe it was all happening. . So i do understand the throwing and screaming and hitting the wall x
I have the same guilt feelings, maybe if the ambulance had taken Luca straight to Addenbrooks in Cambridge where they knew him, we had just spent three months there instead of our local. You are right you live with them every day and maybe don notice certain things or small changes. I wish i had made more of a point of his heavy shallow breathing, i wish we had taken him in on the Sunday when he said he felt he was going to faint and was not feeling to good, instead of the Monday. i do this all the time. I bargin for thing in my head to get him back. This loss and pain is complete totrure, and i can see no way forward. You do not have to move on without her and dont ever think you have to. If and when you are ever ready then you slowly will. Its ok not to be ok. I am not ok and i say that and will always say that and not makeout otherwise. Like you Luca and i were one together, but you had that from her birth. Luca was ill as a baby but not on the scale of Aimee, hes became more serious as i said from coming up to 17. Lucas chest was barrelled to i noticed that this year, but as yhou say you live with them 24/7 every day. Luca had not slept laying down for four years and always propped up on 6 or so pillows, same in hosp. He would always says he was so tired but could not sleep, he was always using the toilet anyway up and down. As you cannot get my head around this either, we were sent home which should of been a recovery for Luca to having a better life, not as others but hopefully better at least no toilet accidents. He was obviously more ill than anyone thought, i am angry at Addenbrooks to. I keep thinking if they had given him a cardio echogram before we left would they of detected the heart being that bad and kept us in?. So many questions. We want them back so badly its so crap to go on without them. I cannot stand the supermarket , i had to buy Luca dairy free food and there was so much he could not each because of crohns/colitus, he could not have sulphate so could only drink glacaeu smart water, there are cases of them here in our garage. It kills me, i look at what i would of picked up for him. O i dont know how you have done this so far on from me but you have, you are existing like me. Post to me anytime, i will with you xx
Tonia all those feels I still feel ive not felt great today not much sleep and got up but couldn’t focus on anything really then just went into Aimée drawer and held her clothes.and cried then that feeling of fear panic came over the longer I’m without seems I’m feeling the lost more. People around me seem to think I shouldn’t be feeling this way this far on. But we had such a bond as i said i felt we was one. Caring for her and helping her fight from the day she was born and being with her 24/7. The only time we had apart is if she went to a friends for the afternoon the 2 days she did her dog club training which was 2 hours or I went out for dinner. Or when I went away for the night with my partner for a break and my mum or sister come over to be with her. We was always together doing things and going places together I’m completely lost without her sharing life with her as I’m sure you are having so many feelings about Luca. The feeling of pointlessness is how I feel too. When I try to explain to my partner or cry he tries to take my mind of the crying which is so anorying. I want to scream out loud throw things. I woke this morning and just kept saying Oh Aim’s. She was my world like Luca was for you. Aimée was such a strong character all her doctors had a soft spot for her and were all shocked with the news. Even that we didn’t like the trips to her hospital clinic app. But all that has stopped her doctors become more than just Drs over the years. I’m here if you need to chat. X
Tonia all those feels I still feel ive not felt great today not much sleep and got up but couldn’t focus on anything really then just went into Aimée drawer and held her clothes.and cried then that feeling of fear panic came over the longer I’m without seems I’m feeling the lost more. People around me seem to think I shouldn’t be feeling this way this far on. But we had such a bond as i said i felt we was one. Caring for her and helping her fight from the day she was born and being with her 24/7. The only time we had apart is if she went to a friends for the afternoon the 2 days she did her dog club training which was 2 hours or I went out for dinner. Or when I went away for the night with my partner for a break and my mum or sister come over to be with her. We was always together doing things and going places together I’m completely lost without her sharing life with her as I’m sure you are having so many feelings about Luca. The feeling of pointlessness is how I feel too. When I try to explain to my partner or cry he tries to take my mind of the crying which is so anorying. I want to scream out loud throw things. I woke this morning and just kept saying Oh Aim’s. She was my world like Luca was for you. Aimée was such a strong character all her doctors had a soft spot for her and were all shocked with the news. Even that we didn’t like the trips to her hospital clinic app. But all that has stopped her doctors become more than just Drs over the years. I’m here if you need to chat. X
First, please tell me you name. I am on the same page as you , i to had terrible day yesterday, crying into Luca:s clothes and i call his name too. My husband just cuddles me when i cry and strokes me, and yes i could scream at times at him . He has accepted Luca is not here but he says he cannot possibly understand how i feel because as you we were together all time, and he was my friend to. People say to me but you have a daughter, our daughter Lauren has severe Dyspraxia, she does not see the world the way we do and i do so the relationship is different. When i was frustrated with her, Luca and i would talk about it and he would calm me dowm. That fear, panic of realising they are really not here and alive is so overwhelming its those times i could do something bad. Do you have any other councelling etc. We went to one group one but i could not stand it. The trauma team are going to contact us about some therapy. I like you am completly beside myself with this and i say to gary my husband i do not want to go on without Luca. Dont ever take any notice of anyone around you thinking you should be getting over this at any time. People are saying to me now are you ok now and i say no i am not ,its getting worse. The doc just tells me to go for walks, i have sleeping tabs, but still lay there untill early hours of morning. I realy feel i have no reason to go on, and dont want to. Do you have any other children , if so do you feel the same as me not wanting to see them, sorry to ask. O i am crying now, why did we have to be put into this rotton club we can never leave. Luca fought too with his condition and never let it get him down, i just keep saying to my husband he should be here getting better, and then we could of dealt with liver transplant later, i so desperatly yearn for him. Please keep in touch. Im not going to say take care or any of that rubbish as i keep getting and could scream , because it does not help. xxxx
Hi Tonia my name is Michelle and Aimée my only child. I was out on antidepressants but they didn’t agree with me and I didn’t like the way they made me feel either. I’m trying the nytol herbal sleep pills but I also brought the blue pkt havnt tried those yet. Have the herbal seem to make me tired after a hour of taken them but still wake early. So still lucky if I get 4-5 hours . Sounds like we was both having bad day yesterday. I’ve spent today in bed I’ve even gone over some medical records hoping it will sink in how poorly her little body had been since that big heart operation in 2011. I know that feeling of not wanting to go on I’ve even said God strike me down. I hate everyday without her. It just still don’t seem possible she’s gone and i watched her pass away in my arms. Where do you live? I’ve read a thing about complicated grieve and wonder if that is where I’m at. I hate it when people say she was sick and from birth. She wasn’t a sick child she was coping with her condition and doing really unbelievable well. People say stupid stuff I had a women in the supermarket say to me least you havnt got to do those trips to hospital. I told her they wasn’t a chore I did it because that was our life and I walked away. I know your in the early days of your grieve. I know I’m still having those feels this far on but I can’t help the feeling of love for my daughter and how she loved her little life and how unfair it is with all the fighting she did to just be here. I’m here for you because i really do understand that over welheming feeling that you don’t won’t to go on. I wake every morning saying out loud oh Aimée. Please message anytime I’m up late send a hug x
It makes me so mad when people say those stupid things, like you hosp was part of our life not a chore, it just what you and i did. We did hosp every two weeks for bloods to be done, and every 6 wks for iron infusions as part of keeping him on an ok level, but his liver just got to bad from colitus. I keep going over records, last three months in hosp, it drives me mad. I get mad, what if they had taken his bowel away earlier then maybe hes liver would not of got so bad, so many what ifs. I keep saying how poorly he must of really been but he never complained although i knew he was in pain many times. It hurts so bad. I read about complicated grief and i def feel you and i have that. I just cannot bear it that Luca is not living seeing the world it drives me crazy. I was going to try nytol tabs as do not want to be on meds. I shouted out loud few days ago please let me get cancer and die as when i tell my husband i dont want to go on he says what about me. I said if i get ill then he cant blame me for taking my life. We go out in the car and i think crash the car then i can die. The dread we feel on waking is horrendous, all we are doing is existing not living. I will tell you i also get at least you have another child, beleive me Michelle it makes no difference what so ever . Our worlds are torn apart, and the thought of living everyday like this i dont want to do. I said to Gary hour ago crying why did he die, why did we not know how ill he was, its so maddening. I miss his mates coming round and hearing them laughing. He was always to fatiqued to go out and anxiety from having accidents. It was great when they came over, it would knock Luca out for a couple of days after. Its so quiet here. We sit here in silence in the eve, weekends etc, i just look at the space where Luca would of been when he was in the lounge with us. He had his own lounge but this year spent more time with us as he was not so good. But i think i should of seen he was getting worse. He never wanted to go to hosp when he felt really bad,he hated hospitals. He was assigned a crohns nurse to talk to at any time, and later one for his liver. I live in Sudbury Suffolk. Where do you live. If you want to email me on my email just let me know. Big hug to you xx
Hi Tonia did you get the medical records from the hospital? I always received Aimee clinic letter report results from sleep studies and MRI and CT scans. I also got the medical records from the stay in Feb and may and the July. I go over them trying to make sense of.it all. I also had 3 visits earlier on to the doctor at the hospital to talk with her over all what was going on and happened to try and get me to understand it all. It did help at the time but after a month I was back thinking of something else to ask. I understand when you say about.taking Luca to.hospital I sit here thinking why did I not take her back I sometimes said to her shall we go back and check things she would say no I’m not sitting there for a week what they going to do they can’t do anything. Which really was right they sent us home in the Feb with actelectsis and knowing her left hemidiagham was chronically elevated. Her blood pressure was low too. Emphysema was advanced but they didn’t put me in the picture I wish they had because least I’d known then. No one knows what and how we feel. My partner says the same to me when I say I don’t want to be here. I’ve had the same thoughts as you. Well we understand each other. Try the herbal tablets first see if it helps you. I feel i was always on the ball when it came to her in hospital I feel diid I lapse in that. I know her doc sat with us that the saying the colapse would properly just happen again that’s why she said to do the talc thing. She said that theynwouldnt be able to do any more surgeries because.of her lungs and that she would still treat her if she got infection or something but to go on a ventilated wouldn’t prove beneficial we bothed cried and i sat on the bed and cuddled her she was only tiny like a child really. Then we both wiped our faces and carried on our day it was like we have been through worse she eill be ok. Then Aimee called her back and said so if this don’t work I’m in my box. And her doctor said i don’t see anything happening on this admission but we will be having talks and different talks every time I see you so we are on the same page. I can’t help think what was going through her little mind it’s so unfair . She was so so brave I wish I could be more like here. I just wish I could walk a path and know I will be with her. We can email if you like x
Oh tonia forgot I’m in Essex