How much can a weekend hold?

Daisy's are our Silver
Buttercups our gold
This is all the treasure
We can ever hold.

That was a hymn I remember singing at school when I was around 7 years old. I speaks of the treasures God has given us in nature and how we aspire to be as pure and as beauiful in God's eyes as those treasures.

There is another chorus ha ha a special meaning to me...

All His jewels Precious Jewels
His loved and his own!

I am tired and weary righ now and afraid I cannot remember the words in the right order but it speaks of little children being the jewels in Christs crown. This was a chorus my Mum sang to us over the phone when we rang to tell my parents that Luke had died. it is a chorus I can hear my Mum singing whenever my heart aches so hard it is in danger of breaking! It is also a chorus I can sing to myself in times of rejoicing and relying on my Lord and Saviour totally.

On Saturday evening as I lisetned to my youngest son give his testomony of how he loved he Lord Jesus, trusted in him and wanted to follow Him through the waters of Baptism my heart was bursting and I watched a Jewel shining in Christs crown! You can see the sparkle of my jewel as he came up from the water...his smile says it all doesn't it?

Saturday was special for other reasons too Tia came to visit...always special, Caroline came too and it was lovely to spend time with them both and the girls....dont the children all look so like sparkling jewels! they polish up very well dont you think?

My parents have been staying with us since Tuesday too....Joshua specificaly asked Nic if he could be baptised the Weekend Grandma and Grandad were here...and it was especally special that my Dad was able to asist Nic in the Baptistry. it has been so good to see my parents again as the last time we were together was December 2006.

Sunday dawned rather too early in this house! Eve had gone to bed as soon as we got home after the baptism on Saturday...she had enjoyed being the centre of attention with her adoring public at Church and seemed very weary so I put her to bed with feed pump and telly on! Unfortunately i dont think My Friends Tigger and Pooh held her attenton for too long and she fell asleep rather early for her....which of course meant that by 4 am she was ready to start Sunday...a around the same unearthly hour Rosie was making sounds too....I managed to ignore them both for almost an hour before I abandoned hope of sleep and went to settle them again. Rosie was twitchy and grumpy but did settle back unde her duvet and looked like she may go back to sleepish...Eve giggled when I spoke to her so i trued her over and said sleep time and crawled back to my temporary bed in the Sensory room. (very good hiding place from the kids!)
i managed another few shor bursts before giving up on sleep for the night and got up! Met Mum and Dad in th ekitchen doorwar and managed a cup of coffee before releasing ROsie from her bed. It did not take long for her reason for misery to be made known! Lots of fitting going on unable to keep upright and coughing/sneezing like crazy! Hey Ho! Medication administered she evenually settled for a snuggle on Grandma's knee which left me free o deal with Eve whose problem was much easier to resolve wth a clean nappie and a pack of wet wipes!

Rosie has continued to fit throughout the day, we had arranged to visit the Church we pent a few weeks with last year this morning and then Tia was coming back for lunch...we had to make a hasty departure after Church as Rosie was fitting for the last ten minutes! She recovered somewhat in the car wth airconditionng and music! but once home again it was obvious she was not really well. Eventually she settled in bed and slept. Eve too went back to bed and slept the afternoon this made Lunch time much easier...Tia and her girls enjoyed the company of the other children and we had some adult time too.

All too soon it was time for Tia to leave and for us to head off to the children's hospice. Rosie still fitting on and off and Jonathan looking rather weary! It felt strange to be laving them behind when they both looked so fragile! Life tok a complicated turn when we discovered that the doctors letter specifying Rosie's drugs did not give enough detail on one of them...we rang children's ward to ask them to fax through the detailed information and a dosage for one of Jonathans. when half an hour later the fax had still not come through, I rang again...apparantly rosie's notes were not where they were recorded to be and had taken some complex tracking down...Jonathan's were appparantly..and I quote:-

Locked in the antenatal clinic as he has an appointment coming up!

The fax did come through evntually and we were free to leave! the journey home was broken with a stop for food...lovly pub on the Leicester/lincolnshire Border....food was great but we were all tired by now and longing to get home.
Thankfully the rest of the journey was unevenful and we arrived home at 10.15 children in bed and now it's time for me!

tomorrow is our 3rd stage review panel into our complaint against Social Services Children with disabilities team and their par in our Disabled Facilities Grant fiasco! I would really apreciate prayer for this. It is so important we get the right adaptations done on our house, we are not meeting Rosie's or Jonathan's needs adequately, and i dont know how long i can go one with Rosie and no adaptations.

I do not know what the future holds but I am glad I know who holds the future!