Hi everyone is nice that we can all talk on here and know that someone will understand what we are trying to put into words and how we are feeling. My daughter had her first heart surgery when she was only 12wks and all her operation throughout her life were all major. Her condition caused poorly lungs but her last heart op cause more problems and she had to have oxygen. I never saw her getting worst every appointment with the lung clinic they said she was doing well. But the end of Xmas 2017 She had to use the oxygen in the day too and never came off it. Then she went to hospital in the Jan and they said she had actelectsis in her left lung and sent us home. She was slowly getting worse when I spoke with her lung Dr he said it would take many months to get her back to base line. By June her lung had collapsed they had to put a drain in. We got home but 4wks later it happened again so she had drain again I never thought I wouldnāt be bring her home. They decided to do pliurodisis to stick the lung to chest wall. But 24hrs after she developed SIRS and she passed away. I carted for her 24/7 Did everything with her Iām totally lost without her she was my life and it all seems so pointless now. I keep going over the medical records and Iām feeling for not taking her back when things didnāt improve though deep down there wasnāt much they could do because she had so much going on. But i have things I feel guilty about. I had 3 visits to speak with the doctors but still I go over it all. I wish there was away we all could get our children back or go visit with them when we wished to at least ease this pain we feel.x
Hello chel
Please dont feel guilty you did everything you could like me. Like you I wish it was me that had goneā¦not sam it is so hard yet I know I like you did everything possible.
With love
Helen
Dear Kate and all,
I feel as though I am in a different position from most of you on here.
What happened to Gemma was a complete shock. Although she suffered from an illness (depression) we never dreamt it would take her life. All the time I was searching for her (when she went missing) I thought I would find her curled up amongst the trees and be able to scoop her up and take her home. But it wasnāt to be. She was found by the police helicopter. She had already gone from us.
The sheer horror though, like all of you, will never leave me. Those first few weeks I felt as though I was going out of my mind, even screaming at times and I am usually a very calm person.
I think maybe that is why I continue to suffer with anxiety now because of the shock we went through.
I hope we all continue to nurture each other and find peace xxx
Dearest Chel. You must be in such turmoil but you mustnāt feel guilty. You did the best you could for your girl and going over the medical records is not going to help you recover from this.
I used to say to Lisa I worried that it was something I did that made her vulnerable as a baby as she got bilateral viral pneumonia and was in hospital at the start then discharged and was readmitted 9 weeks later. I thought maybe I should have gone back sooner as she was sick a lot.
Anyway, Lisa used to say that I should never blame myself as she was probably born with weak lungs but 31 years ago the medics didnt know too much about Intestitial lung disease.
Please try to put the medical records away and try to live your life the way your daughter would have wanted you to.
Life goes on for us, without them sadly, but we all need to learn to get used to it.
Itās all we can do and give thanks for their lives.
Love to you. Kate xxx
Dear Chel,
You mustnāt blame yourself although I have also done that. It is so easy for us to go over and over everything in our heads.
As Kate says, try to focus on the lovely times you had together and the love that you showered her with because that is what is important.
Much love xxx
Thank you for that info. It is something I struggle with at times.
I was worried sick about my daughter most of the time. She suffered so much and I could not fix it for her. I spent a huge amount of time looking after her and I always knew it was a privilege that we were close but I feel guilty being here when she is not.
Many times we thought we were going to lose her, but didnāt, so although it was a dreadful shock when it happened we always knew it was a possibility. However, we always had hope and gave a sigh of relief every time she came out of hospital. It was sort of āphew. Maybe this time they have it sortedā.
Thank goodness for this forum!
Take care all. X
Hi Victoria Helen and Kate thank you for you replies and kind words. I feel so lost right now itās been 15 month that it its self is so hard to believe and get my head around tbh. I go through the medical records trying to get my mind to see how poorly her little body was. But it donāt stop me feeling all this guilt Iām carrying everyday I know we all have the what ifās. I help her all her life stay with her every time she was in hospital the last heart op I was there in the nurses home for 3months as she was in ICU all that time because of her lungs after the heart surgery. We spent everyday and most every hour. Apart from her dog training 4hours a week and if she went to her friends but they normal come to us as it was easier because of the wheelchair and AimĆ©eās needs. I helped her shower dress and put make up on and done her hair we become 1 over the years. I never thought Iād lose her so early even though she had many serious health issues. She always proved the doctors wrong. It all seemed to come on so sudden and even when I took. Her in in the January they sent us home I wished Iād been told then things were getting worse and she many be on a downward path. I just feel if Iād taken in between then and may she may have felt better and they may have been able to relieve some of the symptoms and stop it get worse. Iāve read in her notes about her emphysema and I understand that gets worse over time. I just feel heart broken for her as she loved her life and never moaned about her condition. We had spoken on the Friday about maybe we would be back home by the Wednesday then she got really sick. I feel she was stnatch away from me as we never really spoke again. I miss her so very much.
Hello Chel
Every day is hard Aimee would not wish you to burden yourself with more she loved life and you must carry on and make her proud that I am sure she would expect of you. Always remember Aimee will never leave you she is locked so very safely inside your heart. She will hear everything you say. Talk out loud to her
With love
Helen
Hi everyone i guess we have just got through another week and the weekend is upon us again. Iām still feeling this horrible feeling a cannot seem to shake off. I was working at the computer today and got stuck AimĆ©e would have been there sorting it all out she was very clever. I cried because I missed her pulling up beside me in her wheelchair and saying move over what you done now messed it up clicking I bet!. I wanted to throw something the heartache is physical my chest hurts. In fact my chest has hurt since the day she passed. I just seem to suddenly realise this is it I no longer have her here and then the sheer fear creeps in and I feel Iām going to lose it. X
I know that feeling. I can be getting on with something and not thinking about anything in particular when suddenly I feel sick at thought of her having left us. I miss her so much too but it is what it is as she would say. We just have to find a way to live without them.
Hope the sun shines in your heart very soon.
Kate xx
Hello Chel & Lisa,
Just suddenly now, I was in the kitchen sorting things out when suddenly it came over me, Sam has been gone 2 and a half years. the tears still flow its the finality of it all. It is his birthday next Thursday he will be 37
with love
Helen
Hi thank you for your replies its eaay to explain how we really feel on hereb without being judged. Hi I feel for you Helen it does go I guess the feeling we get when we suddenlynrealise we wonāt be seeing and talking and giving our child a hug anymore or not in this world. I get angry when I see and hear mumās shout and moan when out with there kids I think you donāt know how lucky you are when there is mumās like us that have lost a child a great friend. I loved looking after my daughter it was a hardnroad but Iād do it over and over again to have her with me . Sending you a hug today. Iām meant to go to a family gathering today but feel Iād rather stay home today x
Hello everyone, it has been a few stressful few days , my husband John was diagnosed with a blood clot in his leg, and we had to go back to the hospital where Dawn passed 2years and 10months ago , ans I was dreading it , friends ans family offered to take him as they knew I would not be able to cope . But we could not change hospitals, so I went, luckily John did not have a clot. But reliving the last moment when Dawn was on her final day, and where we went to few her the next couple of days was so so agonising Maddie xx
Must have been terrible for you. Hope you can mend a little though.
I keep thinking about Lisa and wondering whether she cried at night! She didnt cry at all when we were with her but she must have been thinking what the hell is going on with me??? Our poor darlings have all suffered but are now at peace I think.
Love to you.
Kate xx
Oh maddie glad your husband was fine but Iām sure it brought everything back when my daughter passed I had to travel into London few days after to get certificate so the journey was horrible then the next few months we went twice more to speak things over with the doctor so i could understand a little of what went on it helped at the time but as the days and weeks pass more question arose. But going back into the hospital as it was like a home knowing I would see her or have her when we came out was heart breaking. The last few weeks I feel im falling with the thoughts she has really gone and Iām left with a big void. Least on here we can speak about our feelings and know we are understood. X
Oh maddie glad your husband was fine but Iām sure it brought everything back when my daughter passed I had to travel into London few days after to get certificate so the journey was horrible then the next few months we went twice more to speak things over with the doctor so i could understand a little of what went on it helped at the time but as the days and weeks pass more question arose. But going back into the hospital as it was like a home knowing I would see her or have her when we came out was heart breaking. The last few weeks I feel im falling with the thoughts she has really gone and Iām left with a big void. Least on here we can speak about our feelings and know we are understood. X
Dear Maddie and all,
Well done you for finding the courage to go to the hospital. So proud of you as revisiting certain
places is so hard for some of us now. Iām glad your husband is okay and you have got through it together.
Much love xxx
Hi Maddie
Itās good that your husband is ok.
Sorry you had to go back to that hospital. Any hospital is bad enough but the actual one must have been awful. Well done for getting through it.
I had to take my dad in to hospital and felt as though I was visiting my daughter, past the hospital shop where there was usually something she needed, brought back happy memories followed by a that huge sinking feeling. My dad was being grumpy and I really struggled with my patience.
The sadness is exhausting isnāt it.
Wishing you comfort and peace. Xx
Hello Maddie,
I am glad your husband is OK, it must have been stressful going back there. That was what I was frightened of when Roy passed (my mumās husband) exactly 18 months to the day from Sam 9th June for Roy 9th December for Sam, that we would end up back in the same crematoriumā¦we did but luckily it was another room (if thatās the right word). Now today I am overwhelmed with tears, theyāre flowing like there is no tomorrow it is Samās birthday Thursday he will be 37 and frankly I donāt know how Iāve got here. The whyās and what ifās are coming at an alarming rate and I have spiralled downwards towards that black hole, and I am desperately trying to pull myself back as I can hear Sam cussing me!!
Sorry to be so downbeat
with love
Helen
Well it must be something in the air as I am very tearful today too. Itās my husbands birthday and we have friends staying and we are going to the same restaurant we celebrated last year with all our family and Lisa had little Brooke all dressed up.
Also I was with our elder daughter in town and Jemma needs to go into Hobbycraft where Lisa was a junior manager before she had Brooke as well as the wedding florist business. Anyway I walked in behind Jemma and was struck by grief like being hit on the back of my head. I remembered all the times I had popped in and we met for her break at Dunelm. I could imagine her going off to the staff room to take her apron off and telling me what to order as she only had 45 minutes. I just stood there with tears pouring down my face and had to get out the shop.
I just cried and cried in the car. Luckily Jemma was in her own car and we were going off elsewhere so i could let go and just drove around crying like we all seem to do.
So, i hope you are feeling better now. I am but have a headache now from all the tears.
Its bound to be like this for us for as long as it takes I guess. So so hard sometimes and easier other times. We just never know what will spark us off.
Love to you. Kate xxx