Hospice Care, Time for Joshua and Christina.

Rosie and Eve have been booked into the Hospice for this week since late Summer. We have been looking forward to some time of...our first break since April so much needed. Our Aim was to give totally of ourselves to Joshua and Christina. Life has been tough on them for a number of months now, all of the issues we deal with have impact on them. Just the very fact that at times we are exhausted in every sense by concerns we have about health, school, building, living issues, money issues, Solicitors etc etc mean we have less energy and time and inclination if I am honest, to actually "be there" for them. They rarely give us any indication they resent any of it, but there have been tell tale signs building that they really are suffering.
So Tuesday morning saw us manically packing and sorting drugs and organising equipment to head off to the Hospice. Full of anticipation of a happy hand over and then 3 days of enjoying time with Joshua and Christina.

Things never quite happen how we plan them do they? We are always so grateful to the Hospice for the respite they give us. 10 nights a year respite from all the caring duties, respite from sleeping with one ear open, respite from being up several times a night dealing with issues of girls needing us, needing our attention, or needing medical intervention or some other need. A chance to sleep, relax, do things that are difficult with wheelchair kids in tow. However there are sometimes when thigns dont go smoothly, we have on occasion been frustrated by things that may happen, lapses of care, lapses of attention, things not done how we would prefer. This time though it has left me feeling insecure about the care on offer to one of my girls. Something that is uite a necessity, something that could mean she becomes unecessarily unwell, and worse case scenario could be much more serious. This is an aspect of care that everyone at school has been successfully trained in, something all the carers we employ have been trained in, and something my 11 year old daughter manages with no difficulty. Yet the trained nurses and staff at the Children's Hospice are not able to perform. My Daughter it would seem is too sick for Hospice care! I was told in no uncertain terms if I didnt like it then I could take her with me!
What do I do? There is a small chance this could be catastrophic, there is a good chance this could lead to her becoming more unwell over a period of time, there is every cahnce it will cause her unecessary discmfort.
Yet I decided after an angry outburst that I had at this point to put Joshua and Christina's needs first. They have to come first sometimes, this is the only chance we have to do that. If we reject the care on offer we reject any chance of any time off. In order to be the best parent I can be I need time out! So with much prayer we have left them there. Praying God will keep her safe. He has her in the palm of His hand despite the Hospice rules to not meet her needs!

So we headed off, away from everything but the most persistant callers who eventually get diverted to my mobile. We have had a couple of calls but nothing to spoil our time out! I have out our above mentioned fears to one side and stepped out in faith to enjoy time with Joshua and Christina doing things they like to do.

This morning we woke properly at 7.15...having had a little wake up at 4, we are not used to sleeping through the night! But waking at 7.15 we managed a coffee, a shower each, and dressed and down for breakfast at 8. Then we were orgnaised and ready to leave the house before 8.45....amazing! We arrived at Middlebrooke Retail Centre before 9am and were rather frustrated to discover most of the shops didnt open till 9.30...it was cold but not wet so we wandered slowly and found Boots open! A wander around there and then along the rows of shops popping into anything the children fancied...we discovered a Toy Shop and a wonderful Dinasaur Sit on Toy that Rosie would love....I didnt uite manage to persude David to part with £150 for it though....not quite sure why? We also saw some nice interactive sensory things that both girls would love but actually forgot about them by th etime we had looked round and investigated other things, Never mind we may make our way back there tomorrow. We then ended up seeking refuge from the bitter wind in the bowling alley...David and the children enjoyed two games of bowling whilst I rested my sore feet and knees. I was missing the support offered by a wheelchair to push. Thankfully Asda our next port of call had mobility scooter baskets! Phew!
We did a little more browsing before heading to the cinema for Chirstina to choose a film to watch. We had thought she had a choice of 4 but apparantly that was not so and the only choice for today was Up! It was a pleasant film to watch...gave my feet and legs another couple of hours rest too! I was seriously flagging by this time! It was billed as Hillariously Funny but I actually found parts of it extremely sad....I suppose the kids missed those deeper moments of truth. It wsa good though and all ended reasonably happily.
We then headed back to the bus, a slight mishap on the way as Christina discovered she had lost her purse...she and Joshua wandered back to look for it and thankfully found it.
We then drove round to Tesco Extra for something to eat before heading back to the B and B.
Homework tackled a while and then a relax with TV and Computer.
I think a good time was had by all. My Computer time this evening revealed a good friend has saved Rosie from Bad Mummy Moments and supplied her with some pyjamas! Thanks Kate! Another Email tells me Veg and the Pat dog have seen Eve and she looks happy and contented.
So I am off to bed and hopefully another nights sleep.
David is watching football and the kids are hopefully settling down.
So tomorrow is another aday and plans afoot!
Your prayers for our recharging of batteries this break would be much appreciated as would prayer for protection for the girls at the Hospice and Jonathan with his carer. Iris slipped and fell on our decking this morning so prayers that she is Ok will also be much appreciated.
Thanks
Tina