The Little things in Life

Life has taken some twists and turns of late. Bright spots and seemingly bottomless pits of despair. There have been Diamonds in the Oftimes significant dust.

I think I mentioned a bouquet of flowers on my Birthday, these were followed by flowers from Davd and the children on Mothers Day and then another gorgeous display of spring and early Summer blooms from Tia and the Girls...to bring some spring sunshine into our lives, They certainly did.

I had lunch with a close friend and she brought me a little box all tied up with red ribbon and covered in beutiful glitter with a lovely note. Telling me it was filled with love!

These thoughtful presents remind me that I matter to lots of people. Thank you you know who you are!

Saturday just gone sunshine flooded our house as Sarah returning from University for her Easter break returned to work! Rosie was VERY pleased to see her. They spent much time snuggled together or Rosie pushing Sarah into the exact place she wanted her, there was some frustration and agitation from Rosie at times which I am sure was her way of saying, " do you still love me when I am not so nice to you?" The answer was a resounding YES!

Sunday Morning Rosie was delighted to find Sarah was still around and they had a lovely morning dishing out Hymn Books and sharing the joy of life with the congragation before going off to the Sunday School class with Rosie firmly wrapped around Sarah! They enjoyed smells and sounds alongside the story of the morning. Rosie was still wraped around Sarah when I went to fetch her after our service ended.

These happy brighter moments were interspersed alongside an increasing need for suction with Eve, lots and lots of secretions and lots of dropping of SATS, interestingly the heart rate that has been increasingly high over recent months has gone back to fluctuating from 55 to 175 and occasionally higher. Nothing seems to precipitate a rise or fall but both are as alarming as the other.

Night times have been interspersed with monitors alarming. My sleep has been incresingly restless with dreams of various scenarios around death and resusitation plans. Our yearning to get this matter resolved and in writing so we can be assured of the support and comfort of the Hospice around that time is increasing and increasingly frustrated. We have no spoken with the respiratologist who is aiming to get a conference togerther with all eve's consultants and us to ensure we can have a legal document that will support us even in the case of sudden death.

During the conversation with the respiratologist we were able to hasten along the plans for the Night Time Ventilator for Eve. As a result of that and a couple of other significant conversations I have today taken a call from the respiratory nurse who is coming tomorrow! Now hoping I can get at least one carer here at the same time. I am so hoping for an improvement for Eve from this, all prayer gratefuly recieved.

Also today we have had a visit from Rosie and Eve;s Social Workers. At last we have two Social Workers who are really iterested in both the children and us and stive to ensure all needs are met in the meeting of Rosie and eve's needs. They really are interested in the family as a whole and never look down on us or riddicule us for our fears and concerns. It is a real breath of fresh air. During the conversations one of the mentioned a holiday place for families with chidlren with Special needs and they are going to put us forward for a nomination for a break there. it sounds lovely.

We had to go through Rosie's needs and aspirations as a start on her Assessment for personal budget, as she turns 18 in May everything changes. Thankfully we have a transitions scheme here and her SW will keep her on until 25. One bright spot in an uncertain future. There was talk about what the personal budget can provide for and we were left with a document to read about the Supported Living Schemes. I have to say it is all a load of Gobble de Gook! it uses lots of politically correct jargon that i terms of Rosie has absolutely no meaning whatsoever! I really am totally clueless as to how it will impact on her and us at all.

There is progress happening in our house. The Staircase has been painted although the pipework not boxed in as the first nail went through the pipework. Pipe was mended within a couple of hours via a trip to B and Q but not tried again since.

DAvid is now progressing along the hallway outside Eve's room and towards the lift area. It is begining to look like a home now...if only I could learn to be a better houswife!

TOday started with a frustration with the school transport. Apparantly they are now not allowed to get to the school before 8.55 am. School day is supposed to start at 8.50. So for chidlren to be offloaded from bus and in class ready to start the day they need to be there by 8.45 I would say. For them to arrive not before 8.55 it means that the bus wont arrive her until 8.30 which means that we are then in a dilemma of Joshua and Christina being late to school or one of us lone with both girls and Jonathan until the bus arrives. For days when we have long distance hospital appointments that becomes an even bigger problem.
There was then a brighter moment when David came home, having been to B and Q for some wallpaper, with a discount card for the Over 60s Club! He was quite bemused!
But far too chuffed with the discount to be too insulted! The best of it is he had to show his driving license as ID and that has his date of birth on!

Yahoo just got a MSN mesage carer can come tomorrow!
So now need to tidy up a bit and think of something to eat tonight!
I promise that photo blog will follow when I am less exhausted!