General Chat

to be told

That you carry the gene that kills your children, how do I cope with that??

Like all mothers...you have to cope.

I'm not trying to make light of this and I know you will be in bits about this but you didn't know you had passed on a gene that could be dangerous to your children and neither did your ancestors know this who passed it on to you.

At least you know more about this than before and your family are more aware. I do think because of your efforts to make others aware and to petition parliment eventually and i do mean sadly eventually all young people will be tested and many lives will be saved.

{{{{{{{a loving hug for you Gillian }}}}}}}

Gillian, I can imagine how devastated you must feel but it isn't as tho you did anything on purpose, and I am sure many parents of children with cystic fibrosis and such feel the same. A friend of mine didn't find out till his third child was born that all three of his children had c.f. - the first two hadn't been diagnosed properly so they didn't realise that between them they were timebombs until the third child was diagnosed and they then realised what was wrong with the other two children. Sadly they lost one son at I think 16 and the other at about 15, I think their daughter is still alive as she wasn't so badly affected and she has tried to live a full life.
It would have to be that checks were available to all prospective parents to eradicate diseases that can be passed on and that won't happen, will it?
At least you are aware and so are your family that there are possible problems in the future, if they are shown to be carriers too, but you have done all you can and more to try and put right the situation as much as you can.
Please try to stop blaming yourself for something you had no control over and could not have foretold or helped. Be kinder to yourself.

Lizxx

Gillian, try looking at it another way.......................
We all carry that gene, its called "life".
If you knew then what you know now, would you have not had your children?
I dont mean that to sound flippant.
xxxxxxxxxx

Oh Gillian, I can only try to imagine how you must be feeling. All I can say is that the question will remain with you, but you will cope because we do not have a choice. We must be positive for our children and I firmly believe that every child born is here for a purpose, the difference is that each child completes that purpose in a different time frame.
The Cystic Fibrous support group will be available to you and if you haven't been in touch with them please consider contacting them.

Every day I take a few minutes to have some postive thoughts for people who have touched me in some way, these include friends, family and those who have helped me on this site, you are now added to my list

Bridget

I think it has all been said before here but I just wanted to add my support for you Jennifer. It must be devastating to know that you carry that Gene, but I am sure you would not have gone without those years with your lovely son Stephen. please don't blame yourself, please channel your regrets into wishing that more had been done earlier about testing young people for SADs. I am sure it is not any consolation for losing Stephen but at least a lot of good for others has come out of his untimely death, hopefully eventually all young people will be tested and many lives will be saved because of Stephen. Sending you a big (((((((HUG)))))))

Ann
Glos xxx

Morning Gillian
You have worked very hard to bring information about SADs to everyone,and you should feel so proud of that fact.

I have no answers i'm afraid about your coping but to say continue to hold your family close and enjoy each day.
That's all we, who have lost family through this, can do.

Love
Mau (XX)

hi gillian we have not spoken befoe but it saddens me to think you are blaming yourself we have huntingtons chorea on my mums side of the family her father two of her brothers and two of her sisters have died from it not a lot was know of the disease at the time my grandad died from it and my mum married and had me and my sister all i can say is that i thank my mum for giving me my life and love her with all my heart and wouldnt change her for the world from what i have read on your threads you too are a loving mum and a very caring lady so please dont beat yourself up life is to short and im sure your children wouldnt swap you their mum for anything be kind to yourself and stay strong

Cannot add any more that others have said.
((((((((((((((HUGS)))))))))))
Love Mary xx

Gillian it can't be very nice at all. But please, please try and remember that it is NOT YOUR FAULT. We can in no way be responsible for the genes that we carry. You did not choose this. xxx

hi gillian

try to think that if youd known you would have maybe missed out on all the love and pleasure stephen brought you,
and the memories hes given you, he was handsome, and loved you,
try to think like t hat,
and be proud of the man you made, you can say i made him , arent i clever

as for the gene that is a bit of trouble maker, someone down the line gave it to you too, it goes back and back,
its what makes us all up these genes,
try not to blame yourself,
but think positively

Firstly - (((BIG HUG))) to our lovely Gillian.

Secondly - I can't agree more with the postings so far. My five penn'orth is that, years ago when I suffered very bad asthma as a child, my Mum told me that "we each have a cross to bear in our lives". No matter how rich, how lucky, every single person has something that they have to endure. Sadly, some crosses are heavier than others, but somehow we have to find the strength to live with it.
That last bit isn't meant as a flippant comment, far from it. I can only imagine the feelings of guilt that you feel, although it wasn't a deliberate act to pass on the gene.
x

Dear Gillian... I think ***Julie*Ann***.sprinkling fairydust*** sums it up...best...What if Stephen had never been born to enrich your life or others lives.
If your forebears had known about this gene then you may have never been born...nor your lovely son or your other children.

Why is my son autistic and my g/son severley autistic...why did my my first g/son die with SIDS. Something we will never know but we loved them/ love them just the same and we can never imagine our lives without them ever existing.

Thank you all for taking the time and trouble to pass on your valuable comments to me, and I guess, given the choice, I would still want to have had my five special children and my six special grand children, even though I only had baby Stephen for a few weeks and his Dad for just 34 years. Thinking that I have the Gene frightens me a bit, as my brother died at 58 and I am 58 on Tuesday, my Stephen left us at 34 and my Robert is 34 in October, and I could go on bashing my head against a brick wall, but knowing that I must and should live each day as it dawns and love and cherish my children/grand children while I may.
Bless you all and bless your special people. xx..

Hello Gillian....l have only just seen this thread.

You have had some amazing replies on here.
You must know its not your fault bless you, you are a wonderful mum to all your children and grandmother to the grandchildren:o))

And there is no way that you would have known the risks, just as so many parents still don't know.

Yes live each day as it dawns and enjoy each day, Stephen would so want that.

Take care.....love jude xxxx

PS.... How are Morris and Robert??

xx.. lost for the words. xx..

I also have Huntingtons was told 30 years ago it was in my family, I was pregnant with my son. I could have had him aborted but I couldn't bring my self to do it. Mainly because of this I chose not to have another child but later married one who had lost his wife to a brain tumor, so had the family I wanted.
My son was tested some years later and told he was negative, after mine being positive gene carrier.
He was able to give me the grandchildren with no worries on the HD side of things.
Now, I find myself with the first signs of the desease and of course have the bad days and the good, but I gather strength from the fact that our generations that have gone before have carried this gene and have done very well of course the end is not alwys nice but neither are car accidents etc etc.
You are not alone believe me when I say I do understand
I am in NZ but through this site we can support each other with the people who give us strength and hope, there will be something positive very soon
Take care
Angela

Thank you Angela, bless you xx..