Marina, I had a terrible day too. I bumped into someone I had seen in Lidl when Lisa was in hospital at the start.
She asked me how she was getting on and I just went into meltdown in the middle of a cafe. Luckily I have friends who work there and they got me sat down and sorted out.
It was awful .
This pain never goes away. We miss their smiles and voices and smell and how their touch would fill us with love for them. Lisa had such soft skin. Holding her hand in hospital was a great comfort especially when she was in a coma.
I hope you will get some peace tonight.
Sending love to you. Kate xx
I know how that feels went to met my other half to do some food shopping I cried all the way there sat in car crying and thinking how she loved this time of year. Until he showed up. Got in and out of shop holding it together then let it all go again when I drive home thinking how she would be there waiting to see what goodies we had brought and getting all excited I cried all the way home and even screamed along the way. I could just about see to be honest for tears. Itās been 17 months and Iām still going over in my head things about it all. It really still donāt seem possible yes she had many health issues but was despite that a health young lady. I canāt understand how her lungs got so bad so quickly. I feel i should have taken her back after that spell in hospital in January when she was back on her oxygen and not getting off. But they sent us home just saying her lung was squashed. Iāve read back on the CT scan and it says actelectsis and the left lung hemidiagham was elevated. I wished they had explain more of where we was at with her health then. Because I spoke with her doctor in March when she wasnāt improving and he said it would take many months to get her back to baseline. But the in May her lung colapse. So was in hospital then and even then it wasnāt really explained how bad things were. Then we was home for 4 weeks and it colapse again. Thatās when we did have talks with the doctors about not resutating and that her going on a ventilated would only damage her lungs more. Thatās when they decided to do the talc plurodesis to stick the lung to the chest wall thatās when after that she got sick I wished I had metioned things that wasnāt right that morning too. She got SIRS. They are so many I should haves. Thatās why Iām feeling so guilting. She got through so many major surgeries and I was always by her side I never left her. I hate her not being here. Itās killing me without her.
Well I am thinking we have had similar worries and experiences. Our Lisa was ventilated for about a week when the virus had caused respiratory distress. I knew then that ventilation was a bad move as her lungs were already very scarred and I knew this would make things worse.
We cant turn the clock back and we must not feel guilty as we put our kids lives in the hands of the experts. If they cant of saved them then we couldnāt so nothing to be guilty about.
Itās just so u fair as Lisa was healthy too!
Lots of live to you Kate xxxx
Dear Marina,
I am feeling exactly the same and as I left work I thought āIām going to post to my dear friends at Sue Ryder because they will know exactly how I feel and I can be honest with them.
I have just booked to take my grandsons to see the light trail at Blenheim Palace but I went with Gemma just a couple of weeks before we lost her. She seemed so happy and we took our last photo there together. But I feel as though I need to go with the boys.
I just miss her so much and like you, Marina, it does not get any easier for me.
Lots of love to you xxx
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For me itās just 5 months but the ache for Lisa is worse. I miss her so much. I think I have mentioned on this forum that people tell me that time heals but for us who have lost our children that is definitely not the case .
Sending love.
Kate xx
Yes I read your story. I just keep thinking we was sent home feb with them knowing her lung had this actelectsis and the elevated hemidiagham which had got worse. I used to say to her I think we should go back and she would say mum no what are they going to do I will just sit in hospital a week for nothing. But i feel letting her stay home her with her symptoms and not going back made it worse. Though I try and thing when i had to take her in May because thats when she felt she was finding it hard to breathe it had colapse. And CT scan also showed her emphysema had got worse which I know causes belbs that burst and let air in the space which cause colapse. Which her syndrome was prone to. But there isnāt just one factor with AimĆ©e plus she had heart problems too. How long isnāt since Lisa passed?
Oh I just read your last post 5 months thatās no time still very raw. I had such a bond with AimĆ©e we was with one another everyday did everything together and enjoyed our time we would lunch and I would get on her bed at night and watch tv and films we was never really apart
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Hello all,
I just read all your posts like you all I too am missing Sam and said it loud to him yesterday itās been 3 years Sam and I miss you now as when you first left. I have very supportive friends but sometimes like you all I find it impossible to cope. I thought to myself this morning years and years ago Sam used to say mum is there anything in my ear? J would look and say no, I just wonder if the tumour was starting to grow even then. But like you said Lisa we cannot turn back the clock. My friend said to meā¦on the 9th December 1 day nearer to seeing Sam, I also think this time of year does not help us. I dont enjoy this time of year and wish it never existed
With love
Helen
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Hello everyone, its so lovely to be back on this site.Like Marina said we are the only ones that understand how each of us are feeling, and it seems we are all feeling the same especialy this time of year.All we want is our beautiful girls and boys back, just a chance to hold them and tell them we love them. It doesnāt take much to break down in floods of tears. Just wish xmas would go away, but we feel we must make an effort for the rest of the family. Dawn passed away dec 11th, and we could not have the dreaded funeral until the 28th, so she spent her last xmas in the awful undertakers, and it breaks my heart , as she loved xmas. When she was a little girl she was so excited opening her presents she used to tremble, could not open them quick enough , . so we have to try and remember the good memories, what else do we have ? Love to all Maddie xxx
Hi Maddie, Helen, Victoria, Marina and everyone, I thought it was just me feeling so negative and despondent as Christmas draws closer and closer. Canāt bear the thought of another year dawning without our Daniel. The time we have missed not being with him remains as raw as ever and it is so hard when others think you are copying and should be celebrating being merry. I just want to scream at people. I rush through the shops just getting our basic food. I donāt want to hear the jolly music or see the lights it only compounds the sadness. I feel foe each one of us on this horrific journey that has no end. Hugs to you all. Wynne
Hi Wynne, you have summed it up just right, why is it that people think you are now going to enjoy xmas after 3years of losing our boys and girls, they really donāt understand, just because they donāt see you crying all the time, do they not know the big hole and pain we have in our heart. I used to love listening to xmas music in the car, but cant play it now , it just makes me cry. . Take care Maddie xx
Hi Wynne Maddie Marina Helen and all of you on this site. New ones too who are suffering terribly.
I have just been on a 6 mile walk through the snow and lunched with my dearest friends. None of them said anything to upset me and it was lovely. Some people have said the stupidest things to me but I met a lively young woman yesterday who said before she had her Ben who is around 19 she had a stillborn baby. She said people would say things like ā well at least youāre young you can try againā ! How horrific. She wanted and was grieving that baby!
Anyway she didnt say anything thoughtless to me so that was good as I was upset having to tell her what has happened.
You are all in my heart and thoughts as we face next week.
We will all weep at some point and hopefully laugh too.
Love to you all. Kate xxx
Dear Wynnās, Maddie, Helen, Kate, Marina and all,
I can relate to everything you have all said. I hate Christmas now and just want it to be over and when people say āhave a lovely Christmasā to me I just want to scream.
I too will hold you all safely in my heart as we do our best over Christmas.
Much love xxx
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Hi Wynne and All, Christmas is just as painful and unbearable as ever. This is our 5th without our daughter and it will never ever been the same. Iām just going through the motions because we have to, not for us but for others. We donāt want to hurt others by showing our sadness, especially at this time of year, so we pretend. Itās so difficult to pretend but weāve all perfected it. I mostly get through by buying and giving presents to my Grandchildren and feeling their excitement.
As for the question why, we will always ask this, we will never get an answer or understand. It is so frustrating and torments us. Ive tried all ways to try not to ask myself why, we canāt turn the clock back or change anything, but itās easier said than done.
I wish everyone a peaceful Christmasā¦
xxx
Itās like being in a play where nobody in the audience understands whatās going on!
We smile, we laugh, we do normal things but nobody understands what is in our heads and hearts.
With live to you all.
Kate xx
Dear Christina, Helen, Marina, Maddie and all dear friends,
And so here we are on Christmas Eve and I can feel the panic building. I know we have to just get through the day and try to smile although the tears will only be just below the surface. This should the happiest of times shared with our closest but forever the group we are with will be incomplete. Daniel just loved this time of year and I can see his cheeky grin as he got up to all the mischief. He loved surprising us with such such thoughtful presents. I know each and everyone one of you will be missing your sons and daughters. I do hope we can find some joy. Sending you all big hugs and holding you close. Wynne
Hi everyone it is meant to be the happiest time of year and for many it will be. For us just another day without our child. AimĆ©e just love this time of year getting all her gifts ready which she always took time thinking about thoughtful gifts to give family and friend she was always so generous she liked to give than receive. Iām feeling the same itās all just beneath the surface as i pop in on family to see them and feel she would be with me. I canāt believe this is my second Christmas without her 17months have passepassed me by and I wonder how Iām getting through or how any of us do. I have my mum and niece for boxing day so that will be of comfort. I wish I could make it all better for us and bring our children back healthy and well on Christmas morning for us all. I hope and pray they are all having a very Heavenly Christmas in Heaven and they send a little message in their own special way to us all. All Iām going to say is thinking of you all . X
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Hello, and happy xmas blessing , to all my dear friends on this site and thankyou Elanor for seeing us through such awful times. A special blessing to Kate as I know this is her first xnas without her beloved Lisaā¦ As I write this I know Dawn so loved xmas , all she wanted to do is get her turkey prepared and her lovely sausage rolls cooked, and sit down and watch her favorite film Scrooge. .we are just going to visit her, in the grave where we put her ashes , with my husbands mum. So lets hope we get through it best we can . Love to all of you . Maddie xxxxx
To all of us on here,
Like you all, I would just love to go from 30th November to the 2nd Jane without December completely. It is not to be and we have to put on a brave face. The poem says what we all feel:
ASK MY MUM HOW SHE IS
My mum she tells a lot of lies, she never did before
But from now until she dies sheāll tell a whole lot more
Ask my mum how she is and because she canāt explain
She will tell a little lie because she canāt describe the pain
Ask my mum how she is and sheāll say Iām alright,
if thatās the truth then why does she cry at night
Ask my mum how she is she seems to cope so well,
she doesnāt have a choice you see nor the strength to yell
Ask my mum how she is, Iām fine, Iām well Iām coping
For God sake mum just tell the truth your heart is broken
Sheāll love me all her life, I loved her all of mine but if you see
her sheāll lie and say Iām fine
I am here in heaven I cannot hug from here
If she lies to you donāt listen hug her and hold her near
On the day we meet again weāll smile and Iāll be bold
Iāll say youāre lucky to get in here mum with all the lies you told.
*With love to you all
Helen
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Thatās a wonderful poem. Thank you for sharing x