Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

i am sooooooooo lucky

33 replies

dmo · 30/09/2006 09:10

i am led here with my 5 mth old niece (who has been up all night but i dont care) she has cp and a heart condition which docs have said she only has weeks/months left to live (that was 2 wks ago) anyway i had my niece overnight for the first time (i was worried as she has to have so many drugs) and have had the best night ever have got lots of cuddles and kisses (dont think she liked my bed though as she has been sick on it 3 times)she is asleep now but i feel blessed to have done this
i am to be her godmother next sunday so i'm doubly blessed
just thought i would share my thoughts with you

OP posts:
Blossomhill · 30/09/2006 09:14

dmo ~ how lovely that you got to have some precious time with your beautiful neice.
Your post is very touching xx

2shoes · 30/09/2006 09:21

she is so lucky to have you for an auntie

BudaBabe · 30/09/2006 09:29

Oh give her an extra cuddle for me. You are both very lucky to have this time.

misdee · 30/09/2006 09:32

oh dmo so but she is so lucky to have a wonderful aunty.

has your sister heard of heartline? its a forum for parents with child with heart problems. i pop on there a lot, as have many friends there via transplant sites.

its www.heartline.org.uk

dmo · 30/09/2006 09:40

thanks misdee i will forward that to her
thanks everyone [smole]

OP posts:
FioFio · 30/09/2006 19:40

This reply has been deleted

Message withdrawn

Faith8 · 01/10/2006 13:10

The love you have for this little girl is so obvious. She will feel that from you and I sure that the time she spends with you will be very happy and content.

lourobert · 02/10/2006 12:02

You just put the hugest (is that a word?!) smile on my face.....!!!Havent been on for a while and just noticed this post XX

dmo · 02/10/2006 16:16

gald i could help

OP posts:
dmo · 07/10/2006 22:54

christening tomorrow i'm so excited i'm the godmother
she is going to be a princess
will let you know how it went

OP posts:
anniediv · 07/10/2006 22:55

Hello dmo. I read your first comment last week and thought it was lovely. Hope you and your niece have a fab day tomorrow

dmo · 07/10/2006 23:02

thanks all at once

OP posts:
anniediv · 07/10/2006 23:03

Yeah but tomorrow hopefully mainly

Jimjams2 · 07/10/2006 23:06

dmo - its so lovely you're all getting so much into her life.

I came across a website by parents of a child with trisomy13. He lived only for months, but I was touched by how much love was crammed into every second by his wonderful family.

Your niece is lucky to have you all celebrating every minute she is with you. Truly it reminds me of what is important in life.

Give her a kiss from me. Reading your messages about her have had a profound efffect.

ThomBat · 07/10/2006 23:13

What a great post and what a great attitude. Just as it should be. Must be very easy to love her but so hard to keep an sadness at bay. Sounds like you're doing a fab job. Thanks for sharing.

Jimjams2 · 07/10/2006 23:24

here it is Different condition I know, but I found this website amazing, and your posts have reminded me of it. So positive and celebratory.

I hope your niece proves all the doctors wrong (it happens), but she's so lucky to have you all. Will be thinking of you all tomorrow....

xxxxxxx

dmo · 07/10/2006 23:38

thats a really sad story i'm so upset now but its a lovely idea
might do the star naming thing sounds lovely

OP posts:
Jimjams2 · 07/10/2006 23:41

It is sad, 2 years later I still find the website difficult to read, but its also amazing, and very positive and a real reminder of how precious every second is and how even short lives are a reason to celebrate.

xxxxxx

2shoescreepingthroughblood · 08/10/2006 00:00

hope all goes well tomorrow.
she is very lucky to have you as a godmother

anniediv · 09/10/2006 00:31

Hello dmo, did you have a lovely time?

jambuttie · 09/10/2006 08:07

your post was lovely and too

give her those extra big hugs from you her very very special auntie

anniediv · 09/10/2006 09:33

bump

dmo · 09/10/2006 13:51

service was lovely but very sad when the priest blessed her eyes,ears,mouth and also blessed her good health but it was a joyful day and she was so good all day
my sister loved her pictures i got her of my niece

OP posts:
dmo · 11/10/2006 10:15

poorly baby shes in hospital at mo couldnt breath last night and i cant go to hospital cause i have a sore throth
keep you informed

OP posts:
2shoescreepingthroughblood · 11/10/2006 15:30

thinking of her and you all. love to you all