Message Boards for the CF Trust

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Marks Mum

Posts: 8
From: Slough
Registered: 28-May-2004

Life after death?
Posted: 28-May-2004 21:04

Reply

My son died on 1st April....it wasn't expected (not yet anyway) you don't think about it do you? Yes he had CF but he was here. Other people die, his dad died but he'd had a good life, a longer life. Mark was only 20...older than others yes but he was my baby, he was going to be here until the gene therapy was viable. Another few years..........

My family have been very supportive but no-one knows how I feel, what I'm thinking...how can they when I have trouble knowing myself? I try very hard not to think too much coz if I do it will be real......yes I know it happened I re-live his last days over & over but its like a dream, didn't really happen.

Would really appreciate a few words from some-one who has been thru this........

Pat

Message was edited by: Marks Mum

Message was edited by: Marks Mum

Guest

Re: Life after death?
Posted: 28-May-2004 22:51

Reply

Hello Pat

I haven't been through this situation myself, but I have lost family members and I'm very sorry that you lost your son. I can only imagine what a painful time it must be for you.
I don't think you ever forget the last days.. but then sometimes whether it be now or in the future you also remember the good days. Thats how I've felt after losing various relatives at least. I know its nowhere near the same but I only hope the same could apply.
I don't want to offend anyone by making comments on something I can't imagine, so I'll just say that I wanted to reply because your post touched me. I hope you don't mind me replying.

I also hope that someone offers more words of encouragement than I can.

Take care

Jayne

Message was edited by: Jayne

Angel

Posts: 491
From: London
Registered: 17-Feb-2004

Re: Life after death?
Posted: 28-May-2004 23:13

Reply

hi there Pat,

there is no way i can begin to imagine how you are feeling but I did want to say that all my thoughts and wishes are with you right now. i have lost many friends to CF over the years; it is always heartbreaking and in a strange way always unexpected, even when they have been very ill.
as i say i am sure this is nothing compared to what you are going through, hang on in there, i am glad you have found this board and hope that you will receive lots of support. Thinking of you. xx

RogerRedHat

Posts: 565
From: Oxford
Registered: 09-Feb-2004

Re: Life after death?
Posted: 28-May-2004 23:22

Reply

Hi Pat, I'm really sorry for your loss. My sister died when she was only 9, I was 7 at the time. Very difficult to comprehend at any age.

As someone with CF I've often contemplated my own mortality as I'm sure we all have...I wouldn't like to speak for anyone else faced with this kind of adversity, but from my own personal point of view, as much as I love life, and as much as I acheived an aweful lot and have been lucky to have been surrounded by an incredibly loving circle of friends and family, it can't be denied that CF is an incredibly difficult condition to cope with, I find the idea of being laid to eternal rest actually not unpleasant. That is not to say that I want to die, far from it, but alot of people are terrorfied by the idea of their own death and I for one, just don't see it that way.

To have such an enormous burden lifted from my shoulders I would imagine to be the most liberating and wonderful feeling. Wherever your son is now Pat, or wherever my sister might be, their suffering is over. Do try and celebrate his life as I imagine like me and everyone else I have met from the CF community, in spite of everything, he really lived and of course he'll always be with you.

I hope this gives you some comfort.

Marks Mum

Posts: 8
From: Slough
Registered: 28-May-2004

Re: Life after death?
Posted: 28-May-2004 23:22

Reply

Thank u Jayne

No offence taken, any comment is greatly appreciated.

Yes I have many memories & videos but its this time I need help with. I've been thru it when my husband died but then I had my sons to focus on.

Thank u for replying much appreciated.

Pat

ClareT

Posts: 85
From: Kent
Registered: 06-May-2004

Re: Life after death?
Posted: 28-May-2004 23:28

Reply

Hi Pat

I too, would just like to say I'm thinking of you.. and I'm sure you'll find someone to help you through this, who you can chat and who really understands (as some of the people above do.)

*hugs* - and sorry to be no help to you myself..

Clare xx

Marks Mum

Posts: 8
From: Slough
Registered: 28-May-2004

Re: Life after death?
Posted: 28-May-2004 23:29

Reply

Thank u

Yes, I am glad I found this board I know I will find what I need from it.

Thank u so much for replying

Take care

Pat

Marks Mum

Posts: 8
From: Slough
Registered: 28-May-2004

Re: Life after death?
Posted: 28-May-2004 23:49

Reply

Thank you 'Roger Red Hat' for your reply.....

I can't speak for Mark but I'm sure he felt the same as you. He'd led a full life, travelled widely (a lot more than his brother)& enjoyed everything he'd been involved in.

Regards

Pat

Marks Mum

Posts: 8
From: Slough
Registered: 28-May-2004

Re: Life after death?
Posted: 28-May-2004 23:58

Reply

Hi Clare

Just replying is enough......

Thank you

Pat

oj

Posts: 180
Registered: 09-Feb-2004

Re: Life after death?
Posted: 29-May-2004 12:06

Reply

Dear Pat,
I thought about your post last night .I didn't write anything yesterday as I was not sure what I could possibly say of any value.I still don't but I just wanted to say that my thoughts are with you at this time.My son is 7 and although he is in reasonably good health, death and when it may happen is of course something I am sure we all think about and is the main thing that fills us with dred.
I am sure you have an awful void at the moment as you said when your husband passed away your attention and time was concentrated onto your son.
I am sure you did a wonderful job caring for your son and I hope you are getting some support from people around you ay this really hard time.Has your son's hospital supported you in any way?
You said you have another son,how old is he and how is he coping?
Any advice from me really is useless as I can only imagine how you feel but try and think about the good times and take one day at a time.
There are other mums on here that can understand your feeling better than me so keep coming back on here and I hope we can be of some help to you.
All the best and take care,
OJ

Alison

Posts: 32
From: Somerset
Registered: 16-Feb-2004

Re: Life after death?
Posted: 29-May-2004 12:36

Reply

Dear Pat

Thinking of you.

I keep typing and keep deleting things to say to you as i am afraid of saying the 'wrong' thing, but all i will say is that as a mother of a CF child myself, i am so sorry for your loss.

Take care

Alisonx

Billy

Posts: 12
Registered: 12-Feb-2004

Re: Life after death?
Posted: 29-May-2004 12:54

Reply

I cannot begin to imagine what you are feeling at the moment,but wanted to say that my thoughts are with you.

suzie

Posts: 192
From: chester
Registered: 23-Mar-2004

Re: Life after death?
Posted: 30-May-2004 00:03

Reply

I have only just read your post Pat, I am lost for words I have a 21 year old son with cf and I too beleive he will be here forever. Although I know the facts about cf I think I choose to beleive my son will be an exeption to the rule as many of us do. I cant imagine how you must be feeling at this time and I hope that you have lots of people around you to help you through.

Suzie

cupcake

Posts: 141
From: england
Registered: 02-Mar-2004

Re: Life after death?
Posted: 30-May-2004 10:50

Reply

I don't really know what to say as I have not been through anything like this but I was really moved by what I read and wanted to let you know that I'm thinking of you and the rest of your family. Take care. x

Alan

Posts: 2
From: Windsor
Registered: 30-May-2004

Re: Life after death?
Posted: 30-May-2004 16:34

Reply

Hi Pat
I was directed to this message board by a CF lady who was caring and could see I may be able to help, Jills mum (ex) is going through the same feeling. Jill pass away age 24 9th May, at Harefield, I know its very hard, Jill's mother is also having a very hard time, she lives in Staines would you like me to put you in touch, if you get the Marlow Free Press this week you will see details of Jill who is on the front cover.

I know, I feel, I understand, we understand the battle
Jills Dad
Alan