Happy birthday

Dear Tonia
I totally relate to everything you write- I am exactly the same in so many ways. I too go to my daughters room and hug her clothes and cry for all she has lost. She was only just 20 and the most wonderful daughter I could have ever wished for. My husband has been my rock too and keeps me alive. I feel so bad as I constantly tell him I want to go to her ( I know she is somewhere better than this earth) which is hard for him to hear. I still cannot imagine ever feeling any emotion in my life again, other than utter devastation and overwhelming sadness and longing to see and hold my beautiful girl.
As an only child who died before she had any of her own children I feel we are without any future now she is no longer with us. It feels such a lonely life we are leading now.How on earth are we supposed to carry on in this world without them?!
I too loved it when she had all her friends around and the house was full of young people and laughter and energy.
I so identify on so many levels with you Tonia and how you are feeling,
Sending you a big hug from the bottom of my heart xxx

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I feel so sad for you both , I’m so lucky I have my grandson Max , he has been my main focus, even though he lives in Colchester and I’m in bury I have him every other weekend , , it must be so hard not having any other children or grandchildren, , if ever you need to sound off or scream or just talk , please don’t hesitate to contact me , we will all need support for a long time to come xxx

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:broken_heart::anguished: I honestly don’t know what to say to you, dear tonia.
Love Mary x

Thank you that’s really kind of you xxx

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It so painful to go on without them. I have just finished crying yet again today,missing Luca so so bad. You have a good husband as i do otherwise i would not be here, he says he could not lose me to. I call Luca beautiful Luca,he was a good person and we were friend to,we had so many laughs over lots of things. I eas so excited when he came home from Addenbrooks, was planning a party for his 21st on the Sat, it was Monday before which was his 21st b.day when he was ill. There was all balloons around him, i made him up a bed on sofa from coming home as he could hardly move because of two fractured vertabrae. I was sitting next to him planning the food. Just cannot beleive it still, it should not of happened. I keep thinking if only the ambulance had come quicker, they took ages, we were holding hand on soaf waiting for them, his hands were so cold. Just never in a million years thought it was that serious just thought because he had been through so much he just needed bit more looking after in hospital, his stitched were infected so thought it was that making him ill. Kept all his 21st balloons up untill they went down. What happened to your daughter, she was young like Luca. I see no point in anything atall,i lived for Luca, he was so much like me also. Not a chance to live life, experiance life etc. I cry for him but also that he is not here for himself enjoying,seeing living, so much to look forward to,now nothing. It is absoloutly destroying, i love Luca with every every heartbeat and miss Luca with every breath. hug xxx

Dear Tonia,
It’s so very difficult each and every day to deal with our precious children not being with us. Caitlin was a beautiful fit healthy young woman. She was just 20. She was in the 3rd year of her biology degree course at University and was doing really well. She went on a field course to Tanzania to study tropical biology as part of her course. She was away for just over 2 weeks and then 4 days before she was due to fly home they found her unresponsive in her tent early in the morning. They could not resuscitate her. She has had 2 post mortems 1 in Tanzania and 1 in the U.K. but they have been unable to find a cause of death and an inquest has now been opened. We have been told her heart stopped beating for some reason. We suspect we will never know why. She was the most amazing young woman and we were so close. Even though she was at university I never went more than a couple of weeks without seeing her and we did loads of things together as a family. We never had any teenage trouble with her she was always a joy and I think she was simply too good for this world. She was a really kind person and cared so deeply about people, animals and our world. She has inspired so many people with her kindness and love. I miss her desperately-I know I will never be happy on this earth again without her and simply pray to be taken to join her as soon as possible. My husband loves and misses her too but he still feels we should try and live as best as we can without her and that we will find some happiness again. I look at photos taken on holiday just in August Caitlin with her arm around me and know I will never feel that happiness again- and I cannot see any future.
I know the more we love and are loved the deeper our sorrow and loss and we are lucky to have had the bond with our children we have but I just cannot see how it’s possible to survive such devastation,
Sending hugs xxx

They did not know the cause of the death of Luca for 8 weeks, we had autoposy and another one. They asked us if they could take tissue samples,thats when they found giant cell myocarditis. Its very rare and only detected after death through the tissue samples. A fit and healthy person can die from this to, your heart just stops beating instantly. Did you have tissue samples taken?. Some of the symptons Luca had are connected with giant cell myocarditis also but because he had crohns and psc liver disease they dont put the two together . He was due to have cardioecho gram 6 weeks after we were home, i keep thinking if only they had done it before we left hosp. He was having ecg done lots in hosp. On being admitted to a@e on his 21st and having a scan on his infected scar and stitches the consultants could see just beneath his heart and saw if was enlarged. Thats when they rushed him out to take Luca to int care but it was to late and he never regained consiousness ,we wathced them from end of the bed try to save him. me clinging to his dad not looking and praying to god to bring him back, i do not beleive and was saying if you bring him back i will go to church. Gary just looking saying come on Luca fight. This went on for just under two hours, it was sureal. I def do not believe now . we dont beleive he is anywhere, gary says to me if you go you wont see him and i say yes i know but i wont have to live with out him and this dreadfull loss and pain. Luca was a good kid to,never any trouble i never raised my voice to him, its so unfair . I know how much you miss her we are living this rotton life. Do you work. Luca worked with his dad after leaving school but the disease was getting to much and he had to stop he was at home with me for four years, needing lots of care, bloods every two weeks, iron infusions, etc. He had his own chrons nurse we could call at any time ,they were good. Last lot of med he had he was self injecting himself at home. He hated needles. I think sometime this is not happening to me it only happens to others,then it hit you . My husband say the same as yours that he beleives we still have a future but he understands it could take ages yet, and he understands the great relationship Luca and i had. Do you work?. The devestation is horrendous every day, i hate going to bed i hate waking up, on qute a bit of meds from g.p. hug xxx

Your story is so heartbreaking- I do believe which both helps and doesn’t help at the same time.I constantly ask God Why Caitlin? And cannot understand why when she was such a beautiful person. Then again I do strongly believe that I will be with her again in the future and that is all I hang onto. I hope that isn’t too many years away although I’m only in my mid fifties.
I do work in a responsible and challenging job but I am still off work. I will have to go back eventually but I’m no where near in a state to do so at the moment. My husband is on a phased return so I finding hard to be on my own so much. It’s all so difficult and I never feel anything but heart brokenly sad,
I know I will always feel this way - how can we feel any other. Your son sounds an amazing person Tonia. It’s always the best ones that we lose - it’s so sad,
Hugs xxx

Hello, tonia,
I am sure that Luca had more happiness in his short life than many adults have in their normal life-span.
You are a wonderful mother.

Thankyou, Luca was as your Caitlin was too. I do feel for you having to go back to work, i do not work ,if i did there is no way i could return, i do not know how others do it. I am waiting for post traumatic therapy. Have you had any councelling, we went to a group one, i could not stand it, it was like the grieving olympics, everyone ne trying to compete, i was just sitting there crying and could not wait to get out. I said to my husband we are not going again. we had councelling at our house also, two visits but stopped that as well, they said i need the post traumatic help first and can go back to councelling later if we want. I dont feel i need it as my husband is really good and we do talk., His grief is different to mine. When my husband is at work its so quiet in the house as it is usually me and Luca, miss his voice calling me mum, empty board in kitchen no more appointments for Luca. We are heartbroken and it hurts so bad. I am 59, i just think please dont let me live long. I used to hate the thought of dying before but now i do not care one bit. Luca was my life and i loved every moment of it with him. hug xx

Dear tonia,
you are so brave as all of you are as you find yourselves in this dreadful situation. I do feel for all of you, at least we had a good old age, obviously, I wish that it could have had longer, of course, I do.
I feel greedy when I read such heartbreaking posts.

thankyou mary, others have said he had a lovely life and happiness. I know he did and i am glad for that but so desperatly want him back with us all warm and snuggly with us as before, i know he would of still been ill but we would of dealt with it as we did before. Hope you are not alone and being looked after too xxx

You still have your loss which is personal to you. I know what you are saying though, its expected we go before our children not them before us. You still have pain as we do but a different one, you have lost your partner of many years, you have to try to adapt to a different life now as we are all told we will eventually learn to do but still live with this terrible pain and loss. take carexx

I recognise every word you say Tonia- before I was worried about how Caitlin would cope if my husband or I died with her being an only child, now I dread having to live to an old age and hope that I can go soon as it’s just too painful to live,
I am having some counselling which is helpful as it’s one to one and my counsellor has also suffered the loss of a teenage child, so I feel she really does understand. I would not want to do group sessions I know I would hate it -it’s just too personal to share in that way.
I just miss Caitlin so badly and I know I always will.
I hope you find some peace somehow Tonia but I have no idea how to find it xxx