I'm sorry for the delay in posting an update- I've been back in work these last two days for INSET, so time has flown away from me.
Anyway, we are home and I can't do justice in words to our trip to Lourdes. Amazing, unforgettable, emotional, fun, cathartic, relaxing, inspiring, reflective, energetic... You could have put me on a white sandy beach, staying in a 5* resort and I wouldn't have had as good a time as we had in Lourdes. It was just amazing. We were in a group of about 85 I think and there was a mixutre of children and adults with varying levels of disabilities. We did lots of pilgrimage activites in Lourdes, and other trips too. Beatrice tried bowling, we spent a day in the mountains playing games and padding in a stream with little waterfalls. We went to an outdoors swimming pool in the mountains. We sang songs, laughed a lot, participated in mass and night prayers, shared each meal with new friends together. There was SO MUCH laughter! I've not been so relaxed since Beatrice was born- it was like being at the hospice, in the sun, with friends, for a week! I met some amazing children and their parents. I met some even more amazing helpers who give up a week of their annual leave each year and pay about £800 to give a child with limitations the chance to experience a life-changing event. I met a bereaved mum who still goes to Lourdes each year. I met a mum who lives 10 minutes down the road and has a dd with a degenerative brain disease- she is an oracle in fundraising and has encouraged me to set up a bank account to raise funds for Beatrice's sensiry room. She also knows about lots of wish-granting charities, although Beatrice is a little too young for those!
I hardly saw the older girls, they adored all the teeneage/younger helpers and spent all week in their company! Each night, all the girls were babysat, including Beatrice who had to sleep out with the babysitters so they could keep a close eye on her, meaning I could go for a drink with my new friends, or do the 'Grot Trot' (a late night visit to the Grotto where all the candles a burning in the dark- I lit various candles for Beatrice and the other children throughout the week). The girls made me so proud, they sat happily at dinner with the adults with learning disabilities and had conversations without being silly or disrespectful (I guess that's not a big deal, but they haven't met many adults with obvious and severe difficulties so it was all new to them).
Coming home was awful, I cried so many tears 
I really miss my new family! The great news is though, they are having a music festival to raise money for the group for next year's trip (to which Beatrice has already been invited!) and this takes place the day before Bea's birthday! So we have been invited to stay at one of the group's house and I shall take a cake to share, so we will get to celebrate amongst like-minded people without the hassle of arranging a party!
Going back to work was ok... my heart's still in Lourdes though! A letter is going out to the parents tomorrow about a fund raising event some of my friends and colleagues have arranged to give Beatrice some sensory equipment. The other aim of the event is to inform the parents that Beatrice has a life-limiting disability, and that this could affect my attendence. It feels strange to think that Beatrice was born nearly a year ago and the parents are still not aware of her name etc as it was never told to them after she was born due to the circumstances... The head teacher also told me that the funds from this year's Harvest assemblies from our school and our federation school are going to Bea's hospice. That made me smile 
What hasn't made me smile is the electricity crisis we are currently enduring! Our electricity went off on Sunday night and we had to plug into our neighbour's supply, but the fault hasn't been fixed and they've now had to dig up the roads and turn off hundreds of houses in our vicinity. So they've brought out the most noisy generator you can imagine, just to power our house for Beatrice's oxygen! I feel terribly guilty, the neighbours have no electricity and won't be able to sleep for the noise. I've already had one neighbour come over and ask me to boil her kettle for her! They said they'll have to wake me up at 2am to tell me if they are keeping us on the generator or switiching us over to the mains, bacuse the switch over takes 10 minutes, meaning I will need to put Beatrice onto her emergency cylinder.
Talking of oxygen cylindres... In France, BEatrice adopted two new names- Operation Baby Blue and 50 Shades of Purple, due to the fact that we were supplied witha couple of duff cylinders that leaked O2, meaning Beatrice de-sated rapidly and frequently. On the whole it was all ok, apart from having to lug huge tanks about as they didn't give us portable ones. However, on the plane on the way home, the regulator kept falling out of the tank, leakng O2 and I realised we didn't have enough to get us back to England. Added to that Beatrice had gone very grey... So, we had to go on the plane's emergency supply and the fire brigade were called to meet us at Stansted from the plane to get her on their supply and rush us through arrivals where dh was waiting with a functioning, full cylinder, as previously arranged. Bea got some ribbing about being a queue jumper... 
I've probably forgotten lots I wanted to share, so if I come back with dribs and drabs, please forgive me!