I hope you can look at photos soon as it helped me so much. I could picture her as she was as a happy lovely young woman and not in ICU hooked up to machinery. It helps, it really does.
Kate xxxxx
Before Christian past away we had our house up for sale, fortunately (though I did not feel that at the time) the sale fell through,I am now so glad that it did.This house and the surrounding area holds so many memories ,we live on the edge of the South Downs ,Christian loved walking and he would walk for miles with his dogs on the Downs in fact we still have a pair of his old muddy hiking boots and wellies on a bench in the garage and they will stay thereā¦so if we had have moved there would have been non of those memories and itās those memories which make me feel closer to himā¦when Iām feeling down I will go into his old bedroom sit on the edge of his bed have a good cry then I can feel a calmness creeping over meā¦I am so glad that we stayed in this house the one that Christian knew and loved.
Take careā¦Marina xx
I know how you feel. Lisa was only 3 when we moved here. I can see her in the garden playing with Jemma when they were little. I can see her with her friends when she was older having a laugh, I can see her making an archway for a wedding and gathering greenery from our garden (they donāt have a garden) and I can see her collecting holly and pine cones for her Christmas wreaths. So many memories and they are too special to lose.
Lots of love and hugs to you. Kate xxx
Iām so sorry you are struggling so much right now. I too cared for my lovely daughter. We spent so much time together, her in a hospital bed, or hooked up in icu, battling for answers, and of course there are all the practical things that go by the way that constantly had to be done. I always knew the time we spent together was precious and I treasured our closeness and mum and daughter confidences.
Like you, having spent such time, there is the grief, and also a big hole to fill. Everything feels so pointless now.
The only thing is, we had a privileged job to do and we did it. In return we will always have the love we shared.
I do hope we can all find some purpose and comfort again.
Sending everyone love. Xx
Hi thank you for your reply Itās hard sometimes to get across that caring 24/7 and always being with our child is all we know I spent everyday in her company and
going places with her we shared so much together and I loved it. Even the many drives into London for her hospital appoints and see the doctors that has all gone too. To that we enjoyed doing it but it was a our way of life. Now there is this big whole in my life. I miss her more as time is going on and I just wish I could go back and do things differently to see if that changed this horrible out come. I feel guilty for not doing this and that and if I had could that have changed this for her. It just seems so impossible for her not to be here. She was such a incredible person through her physical disabilities she was so clever and wise funny and loving everyone loved her being around. I knew she had her health issues and she put up with more than most people could and I hated for her to be in pain. I just thought we would have more time together. In hospital I was saying how we would be home in a few days, then suddenly things went bad and she was gone.
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I am sure we have all felt the guilt and wondered did we miss anything, is it our fault that they were not well, should I have said I didnt want her to go on holiday as I felt in my heart and soul that something was not right. She thought she had hsy fever on the Thursday before going away on the Friday night. She was doing wedding flowers on the Friday and dropping them off to me to sort the wedding venue next morning. She said she was sneezing a lot and maybe it was some of the flowers. However, she has been a florist since she left school and before when she helped in a shop and learnt the trade. I knew she was getting a cold and was so worried as she was on immune suppressant. Anyway, she would still have gone with her wee family as they were all so excited.
It just was her time. At least they had a fantastic holiday till the last night when she felt really Ill.
There is nothing to be gained by thinking about what we could have done differently. They were given to us to love forever, even now we no longer have them!, we can go on loving.
With hugs and tears and love to you.
Kate xxxx
I feel for you. It was so hard to witness their suffering unyet so unfair when everything ended so abruptly for them, and for us.
We cared for them truly all of their lives. We grieve because we miss them. We grieve for their lost future. Itās tough and complicated.
I too wonder what I could have done to have changed the outcome. People tell me there was nothing I could have done. They say she is at peace. I can just about cope with that because they donāt know what to say. What I cannot cope with is being told everything happens for a reason. I donāt believe that. I just think that nature can be wonderful or cruel.
Because we are left here, in a situation no one wants to be in, we have to find a way to carry on. We donāt have a choice and we did our best as any parent would.
Hope you have as good a day as you can.
Love to everyone x
I hope we can all find peace and comfort from our day. None of us know how we will feel from day to day but hope we have a good one.
Much love. Kate xx
Thank you for your kind reply. I read something last night how grief can be harder for parents that have nursed a disabled child as they somehow become one. Thatās how I feel my day was busy helping her and being there for her. Taking her everywhere she wanted to go. It seems so unfair that she fought through so many operations to be here and felt with everything that was thrown at her to have her lung fail her. I feel so lonely without her even though I have my partner and family. I send you a hug we all on here never thought this was going to be out life did we. X
Thank you for your kind reply. I read something last night how grief can be harder for parents that have nursed a disabled child as they somehow become one. Thatās how I feel my day was busy helping her and being there for her. Taking her everywhere she wanted to go. It seems so unfair that she fought through so many operations to be here and felt with everything that was thrown at her to have her lung fail her. I feel so lonely without her even though I have my partner and family. I send you a hug we all on here never thought this was going to be out life did we. X
Lisaās suffered collapsed lung collapses when she was 14 and again when she was 29. Both had to be stuck to her pleural. On both occasions she lost a bit of lung function as the surgery alone caused more scarring.
There was always the possibility that she would suffer acute respiratory distress syndrome. The viral pneumonia she caught whilst on holiday triggered this as her lungs couldnāt cope. The machine tested her lungs to aid recovery and she was doing well initially but then infections set in and there was nothing to help her.
We all have this emptiness now. It can never really be filled but we must find joy in our own lives somehow. Our older daughter is trying to rebuild her business and is getting emotional support from friends but nothing can replace the boud her sister has left. We just need to try and walk round that big hole and try not to fall in not be able to live againā¦
I weapt this morning doing the housework. I cried in the bath and when I was brushing g my hair.
It has helped to get it out though.
Take care of yourself dear girl. We all need to.
Kate xxx
Hi Kate I feel sad for you too it horrible isnāt it so you understand about the lungs too. My daughter had marfan syndrome which affect heart lung spine eyes. She had many operation to her heart and spine was a miracle really. But her lungs started to fail and they colapse everything that was done on her was always a risk but she had a drain in we come home but she wasnāt and hadnāt been doing the gas exchange in her lungs So was feeling tired and all that comes with that she was already using oxygen at night but had been on during the day as they failed her then Just 4 wks later her lung colapse again and yes that was the idea they had to do the talc thing she was ok the day they did it but the next day things changed for the worse the last x Ray showed consoconsolidation in her other lung and she passed the next day. It happen all so quick we was chatting about getting home . I know I cry in the shower and walk around in the day say oh Aimee how can this be she filled this house and it feels so empty. My chest hurts physically.
That is a good saying around a hole and not to fall in sending a hug x
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I lost my beloved son last year he was 26 and suffered from duchenne muscular dystrophy. The pain is so intense no day gets any better. I have another son with the same condition and each day I live in fear for what is round the corner. It is so painful so difficult to cope
Iām sorry to here you have lost a son and have to deal with this grief we on here find ourselves in. You have another son with the same condition must be hard. We all have different stories of our lives ones we are all missing but we are all on this horrible journey. People just donāt understand how we can still be missing after a year has passed to me I still feel like it was yesterday. I ache physically because i miss my daughter. Taking on here helps so keep posting
My dear dear girl words cannot Express my feelings for you. I have just been sitting in the rain in our garden weeping my heart out for our lovely girl only 9 weeks gone. I donāt know how you will have the strength for what lies ahead but rest assured we are all here for you whatever and whenever as we all understand what itās like. You have to be in it to understand it. There are no barriers here . We can bare our souls and we are understood.
Love and peace to you. Kate xx
Oh kate sorry to hear your feeling the pain I fully understand Iām still crying on days I just want to stay in bed. I opennher walldrobe and can smell her I havnt really moved much of her things yet I just feel wrong doing so like she will need them silly but i still sleep in her room too I had to sleep in there for over a year while she was poorly. Some days I really feel i wish I could just go be with her. Sorry to hear you have cried itās so early for you i was thinking about you today. Have you had her funeral yet? Sending big hug x
Oh kate sorry to hear your feeling the pain I fully understand Iām still crying on days I just want to stay in bed. I opennher walldrobe and can smell her I havnt really moved much of her things yet I just feel wrong doing so like she will need them silly but i still sleep in her room too I had to sleep in there for over a year while she was poorly. Some days I really feel i wish I could just go be with her. Sorry to hear you have cried itās so early for you i was thinking about you today. Have you had her funeral yet? Sending big hug x
My heart goes out to you. It is only 9 weeks since we lost our Lisa. Some days the pain is so great.
Our girl had a rare lung condition but apart from twice having lung collapses 14 years apart, she lived a full and active life. In recent years she had been breathless when climbing stairs or walking fast but had a good quality of life.
However being put on immune suppressant was her downfall and when she got viral pneumonia on holiday it just was too much for her stiff lungs to cope with. She was in hospital for 9 weeks but in the end the infections were taking over her whole body.
My love for her goes on and I am truly thankful that she had such a good life but she leaves a 3 year old behind and a partner who has only loved her. He is so sad but a wonderful Daddy.
I cant imagine how difficult your life is. We can support each other here as we can say anything we need to say because we all know how bad it feels.
With love to you. Kate xx
Dear friends,
I have found your posts over the last week so helpful. Reading about how you are all coping is very inspiring for me and lifts me out of my pain.
Last week was a very bad week for me but coping so much better this week. Kate, I love your phrase āmy love for her goes onā as that is how I feel about my Gemma. I even managed to tell my grandson a funny story about her today without breaking down so for me that is progress after 19 months.
I am hopeful that these little glimmers of hope will turn into big glimmers and I will be able to live more if a life.
Much love to you all xxx
I am with little Brooke this morning. Swimming class first now soft play.
She fell asleep in the car and I parked up and watched her sleep. Overwhelming love for her filled me and thanks to our beautiful daughter for giving us this wonderful child to give us hope and to remember the way Lisa loved her so much.
With love to you Kate xxx
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