Well today I went down south for a team meeting.  We flew down, which was a bit strange for me.  Hard to explain, but I guess a combo of things... I've not flown since before being pregnant with Sadie and I felt flustered (although I hope I hod it relatively well). Also, just the feeling again of things being at 'normal pace' which seems poles apart from our true normality.  I still sometimes feel like I have been plunged back into a parallel universe and inside I am a grieving mum, but my exterior must show professionalism and calm.  Its quite hard to get used to!  The other weirder thing to explain is being up there in the clouds and wondering how close to heaven I am and what heaven is like and then panicking and desperately needing and aching to be there and with Sadie.  Hard to explain all this going on behind the veil of calm I try to show.   I will get used to it I'm sure. I never want to make excuses and to be fair, who'd ever guess I'd lost a precious daughter, but I don't feel like I operate at anywhere near 100% yet.  Will I ever?  Who knows?

The meeting was fine. I get paicked still meeting new people because I have all of the above weird stuff going on in my head and some. I feel like I don't belong there sometimes.  Like I'm a fraud because really they have no idea who I am and what is going onin our lives - I'm just having a crack at beig normal again because that's the way the world goes round.  So I try to remember the prfessional I once was and try to emmulate that. All the while I worry how to respond about the typical conversation on children.  I kow I want to be honest and mention Sadie just as I'd mention Pat but equally I know that this makes people uncomfortable and this in turn does me no favours but it leaves me fretting about how to handle it.  Its exhausting business and hard to explain.  Maybe I will just figure that out.

Tomorrow Pat and I go to Francis House.  Its been ages!  I love going but oh how emotional it is.  Sadie enjoyed some great times there and some awful times plus she died there.  I feel close to her there.  It hurts just that bit more there though.  I want Pat to know more about his sister, her disabilities and what happened. I want him to understand her and why we are so proud of her achievements and why we feel Francis House is so important along with many other hospices and respite facilities. 

Francis House is like a big house with medically trained staff and specialist equipment.  Contrary to common belief, people don't stay there indefinitely in general.  Its a respite facility and they offer care and support for the children and families.  Sometimes Sadie stayed there and we had a little rest from the round the clock care - mainly we stayed on site to be close. Other times we took Sadie because we were concerned as she was deteriorating and the hospitals were no longer a real option to us but we needed help managing her pain and the process of her dying. In general though, Sadie was at home with us and we were as any family - to an extent of course.  FH enabled us to care for Sadie at home with the on hand care we needed from them.  They helped us to keep her comfortable and to manage her difficulties.

So many people fail to realise that Sadie had special needs and was severely impaired.  I don't know why that is.  But we see many other children with the same or a similar condition and realise how challenging her life would have continued to be.  I feel proud of those children that share Sadie's condition and of their families.  We are proud of what Sadie accomplished and of who she was.  I am fortunate enough to have remained in contact with many families with children with similar disabilities and to have made the acquaintance of new families.  I truly value those relationships and the community we have.  
Well I have rambled so much. I could carry on all night but I mustn't!