Sunday, 27 February 2011

Parties and Politics

The girls have celebrated their eleventh and thirteenth birthdays and Rolfie and I have entered our fourteenth year of marriage.  He always says, "It seems like only yesterday," and follows with a wry smile, "I wish it was tomorrow, I'd cancel it!"  Such a charmer!

Tilly's Birthday Breakfast
 Candice created an amazing "Twilight" themed party, complete with a range of the various blood groups as a drinks option!  It was a blood-curdling success.

Fit for a Vampire?

The scene is set
 Tilly decided that she'd lend a hand in the kitchen, and once again her magic arm supports came up trumps.

Tilly in training

Good enough to eat!

 Since our last visit to Blogsville we've had an interesting experience that seemed to confirm just where on the 'Press-ometer' children with disabilities rate.  You may, or may not, remember the headline news of a little girl in Bristol whose Mummy was going to have to put her into residential care because of the latest cuts to her home care package?  Vaguely?  It was astonishing to track how the story was growing in magnitude, consuming acres of column inches and air time.  It seemed that 'the genie was out of the bottle' and that the Government, in these financially stretched times, were going to have to seriously consider the plight of families struggling to care for their children with disabilities at home.

As the Press coverage swelled, we were invited to do a piece to camera by a national news company.  With the generous cooperation of the Staff and Pupils, a piece about children with disabilities was filmed at Tilly's school.  However, just as the the report was being sent to the Editor, the Shadow Chancellor announced his resignation and the whole story just disappeared.   The genie was sucked back into the bottle, with the cork rammed into place, with the Government, no doubt, heaving huge sighs of relief, and toasting the marvellous timing of the opposition's announcement.   The next day ex- Prime Minister Tony Blair was the headline act at the Iraq Inquiry, and so our story was buried forever.   A sign of the times, or has it always been so?  May be next time if the 'genie is let out of the bottle' we jam the cork on pronto! 

On to more positive outcomes, Tilly attended a Family Fun Day locally and had the opportunity to have another try of Boccia and New-Age Curling.  Tilly played against other power-chair users, Caudwell Children Volunteers and Sally, her morning helper.  They were all close-run matches needing skill and concentration with real challenge and a competitive spirit.  Tilly is hooked and I will be looking into getting Tilly more involved, and the possibility of introducing these sports into school. 

Tilly also 'Reached for the Stars' using her arm support s in a Cheerleading session and also tried out yoga which she loved, and knowing how good it will be for her, we'll have to see if we can shoe-horn a session in somewhere in the week.  I wonder if other parents feel guilty, like me, that they could be doing more exercise/physio for their children?  Could just do with an extra day in the week, or a few more hours in a day perhaps?

So where are we now?  Tilly and Candice are safely snuggled in the sensory room, watching a DVD under the watchful eye of Nick, with a selection of chocolate goodies within reach.  They spent the afternoon at the Trentham Gardens' circus whilst I luxuriated in the spring-like sunshine with a cappuchino and the newspaper.  Last night Tilly delighted in taking Bertie the Daschund for a walk.  Along with meeting up with special friends; catching up on Harry Potter, the girls have honed their singing skills on the karaoke machine.  Their days have been filled with fun, joy and love, complimented by fabulously home-cooked meals and midnight feasts.  We are at Treetops - the Donna Louise Children's Hospice - for the half term school holidays.  Bliss!

We always look forward to our respite visits to Treetops, but this one was especially welcome as Tilly has been battling a very nasty chesty infection.  It all started with a vicious vertigo attack on the way to the school disco.  Tilly was sparkling from head to toe, and within seconds found herself looping that dreadful loop and fit for nothing.  We dropped off her friends to hit the dance-floor and we crawled back home with Tilly's teacher kindly holding Tilly's head as still as possible.  Poor Tilly had been planning this evening for weeks and I knew she was bitterly disappointed.  She broke my heart as I witnessed one solitary tear roll down her sparkling cheek.  Such a swizz!

In spite of galloping temperatures and waves of nausea Tilly worked around the clock to keep her chest as clear as possible.  We were really blessed to have Allie, Tilly's PA, who came every morning to help get Tilly up and manage her secretions.  It must have been a steep learning curve for Allie, who was on holiday cover, but she rose to the challenge magnificently - we wouldn't have managed without her.  The 'shaker-maker' (hyek oscillator), nebuliser, cough-assist and suction unit were in constant use.  Tilly was brilliant and was so brave she made me cry, but also made me concerned that she was working so hard that she would exhaust herself and suffer a respiratory collapse. 

Fighting Infection

There were also a few moments when 'my finger was over the nine', when I suffered a crisis of confidence and worried that we needed some hospital intervention.  Daddie was right beside us and reassured us that Tilly was 'holding her own' and we needn't panic.  We do have a good equipment at home, but it is also difficult to know when you're moving 'out of your depth.'  I have since learned that there is a 'hospital at home' team that I can contact next time for reassurance and guidance. The trouble is that when you're in this episode it is difficult to know what day or time it is, and it is only after the event that you remember all the folk that you could have called upon for help.  Since we've put our heads back above the parapet there has been a chorus of "why didn't you call me?"

Tilly said that this time Treetops is really like the paradise island that we have been looking for on our frightening sea voyage - a wonderful place where we will be loved and cared for and can recharge our batteries ready for when we next set sail on our journey.  Bless her - for an eleven year old she so 'gets it!" 

The only sad thing, of course, is that we have left Daddie at home, 'one more time with feeling', holding the fort at our B&B.  He has been such a Star during Tilly's illness, keeping Candice on track with all her activities; running the business and amazingly he has also embarked on the winter renovation and redecoration of the property.  What with that, doing all the ironing; creating amazing meals and making sure that we celebrated Valentines Day; I am seriously considering keeping him on!

Whilst Daddie has the space to get on with his jobs,  Treetops has give me the golden opportunity to do my Trustee Training for Caudwell Children whilst the girls are having such fun.  I have been able to go in to the Caudwell Children's office every day and have an induction session with all the different departments.  It has been excellent and confirms my belief that they are all highly motivated individuals, completely committed to working in a dynamic team, with the sole outcome of enriching the lives of families who live with children with disabilities.  I now have a better understanding of the structure of the Charity and feel really excited to be part of such an energised organisation as they move forward into exciting new territory.

Caudwell Children are looking for 10,000 friends to sign up with them on facebook so please take a few moments to follow the link and help them reach their target!/pages/Caudwell-Children/39799067464


Millie said...

Awww just read your blog. Glad Tilly is feeling better and had a fun holiday :)
Yoga is really good aswell :) xx

bonnie said...

I'm glad too. lots of love. take care of yourself. And Happy belated birthday!!!!!!!