Sometimes I feel so sad...

[theslownorris]

..that my elder children get to do fun things because their little sister has a life-threatening condition.

(Don't get me wrong-I am grateful that these things exist thanks to our local hospice and their supporters.)

Yes that must be strange and upsetting for you

Thanks for your replies.
I've probably made it sound much worse than it is (I've got that awful bug that's going round and that doesn't help). Dd4 is 11 months and her sisters are 3(twins) & 11.
The baby has done so much better than anyone ever expected though-in July the doctors told us we were going to lose her .

She has a complex cardiac condition that was diagnosed at 12 days old. She's had 3 ops to insert shunts and several "collapses" possibly caused by pulmonary hypertension,resulting in numerous stays in PICU. She also had feeding problems but as I said,she's gone totally against what the doctors predicted and is now doing pretty much what is expected of any child of her age . (Actually I'm really proud of her {self-indulgent ]!)

(PS I've been around on MN for a while but I'm more confident about posting now I've changed my name )

theslownorris - hi - my experience is the opposite I suppose (no access to hospice when dd was small) You know me I think? dd has a significant heart problem and a leg length discrepancy. As a family we have been restricted in what we can do and that makes me sad.

Your dd has done so well - but you are still in the acceptance stage, especially after your dire times in July. And you are still grieving for the life you thought you'd all have together.