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Im Starting to hurt more and more(27 Posts)
Right i no i should be happy but its getting harder my daughter is going to die basically bafore she is 2 and shes 15 months now so yes im grieving as i really dont want this to happen . Today i thought she had stopped breathing and i was in a right mess. She has a illness called trisomy 13 which is genetics No one seems to understand why im grieving and not enjoyin her. I love having her here but its getting so hard.
That must be extremely hard for you to have to deal with.
try and enjoy the special time you have left together.
Is there anyone you can talk to about it?
So sorry Kittykat
I really feel for you.
Well im thinking about going to see a counsellor about it as i dont feel i can really talk to anyone about it without upsetting them or them saying oh dont be daft she be here for a long while yet
I have no experience and i don't mean to sound condescending but you sound an extremely strong person. I wish you and your family all the strength in the world xx
Thank u i am strong and i try to stay strong for my hubby and other 3 girls but sometimes i just crack like i did earlier.
I think seeing a counsellor would be a great idea. We can all listen, but we aren't trained counsellors (well, apart from those MNetters who ARE, but you'd be better seeing a professional face to face)
You say you know you should be happy. I wouldn't be in your position. You're preparing yourself for the cruelest thing that can ever happen to a parent. I can't understand why "no one understands why you are grieving". It's a very sad and hard situation you're dealing with. Talk to us on MN, but please do think about seeing someone who is trained to help you.
I will im due to visit my dr next week. I have also just arranged her funeral on paper anyway as ive been advised to do it before it happens
I am so sorry for you love. I have no answers apart from keep posting about your little girl and that there are people on here who have lots of experience on matters such as these as well as lots of support. xxxx
I don't 'know' you so apologies if you have to repeat your self. How old are your girls? Are they aware of what is happening now and in the future iyswim xx
my girls are 10 6 and nearly 4 they do no whats happening as we were told macy would have died by now so i couldnt keep it from them but i dont think the youngest understand what dying means my eldest is struggling with it though she bottles it all up but also we have arranged for her to talk to someone about it .
Good on you for staying strong for your DH and DCs - but don't forget about yourself in all of this. You need to grieve - but I guess you recognise that having started this post in the first place. Hard to know what to say, kitty. Thinking of you.
no experience myself but my friend little girl had Pataus. Unfortunately she only lived for 18days. I know for my friend it was the hardest time of her life as she knew that her little girl would pass away even if it wasnt early on but that there was very little chance of her living to be 2. I remember after her little girl died she said it was hard as she didnt want to become too attached,although of course as a parent we are always attached.She did a lot of research and found that there was a little girl living in the USA who was 5 with Pataus. I am thinking of you and your family and can not imagine what you are going through.
Its so hard what you're going through.
You must enjoy the special time you've been given.
Get lots of photos and video footage of you all together and individually.
Have a day making hand and foot prints as these will always be simple thing that you can treasure in the future.
Have you ever spoken to anyone at ARC?
They are brilliant and so supportive.
Message withdrawn at poster's request.
KittyKat172: do you know about this website for parents of kids with trisomy 13? I think you might find support there, they have a message board.
Yes i am in contact with the site for trisomy 13 but with most of them being american and believe in god they think there children are better of in gods hand iyswim. Yes patous is in the same cat as edwards . My daughters heart is getting weaker and they wont operate thats what they said will give up before she is 2 oh i do hope there wrong
I havent been incontact with arc who are they
Oh -- I was going to say something about the religious angle being a bit strong on that website, but didn't want to offend coz after all that's what some people like.
What is daily life like for your little girl, kittykat?
Well my hubby will get me up around 6 so he can go to bed as she doesnt sleep so having her and 3 others to sort and keep happy is hard. She goes really blue really quick so cant leave her to cry and she coughs alot and that also causes her to go blue. Then it dinner etc and around 7 at night we start her feed which is by ng tube and by pump but if she pulls her tube out i have to put it in and i have made her nose bleed some times,
i have written this message and deleted it so many times because i cant find the right words so im just going to say what comes and post.
you are a very brave woman kity and i honestly dont know how you cope, but we do dont we? i think you are having natural reactions to this. the medics can tell you time and time again that she will die but you can never truely prepare youself for it, it would be ridiculous to expect that of you. every day is a gift for you and you little girl and of course you will trasure them. However, you still need time for you. It will be impossible for you to cope if you are not rested yourself.
is it at all possible for you to take a day off from this? pamper yourself and give yourself a break? you will probably find you will be more refreshed and a bit calmer. of course nothing can take away whats going to happen but it will be easier getting there if you are more relaxed in yourself.
my DD is around the same age as yours and i dont think i could follow my own advice tbh. i dont think i would be even functioning. and the fact that you are there for her and caring for her is testiment to your courage. xx
What does she like, Kitty? What things make her smile or laugh?
As she is blind and deaf she doesnt have any sense of hear etc so she licks everything which is so nice when she just licks yr lips for ages she just smiles when she is tickled or at anything .
I bet she loves ice cream, then!
Do you have one of those home-ball pools? Sounds like she'd love one of them. And to be taken swimming.
How aware are your other children that she will die inside a year? How do they feel about it?