Wednesday, 7 April 2010

Long lost friends

What a joy to be on holiday and not have to get up at the crack of sparrows and do the mad movies dash to get to school on time – it makes going to bed such a pleasure knowing that this pressure is off.
Following a lovely Good Friday Service, complete with hot cross buns, the girls and I turned our minds to the Easter Garden that we were charged with creating to decorate the Children’s window. Floral art is definitely not our forte, but amazingly we really got into it and with the help of some extra thick moss scraped off a stone wall; an upturned broken flower pot; an Easter egg shaped stone and an Easter bouquet from One-Stop our Easter garden emerged. Candice and I carefully transported it down to the Church and we managed not to roll it around the back of the vehicle as we did our ‘Harvest’ offering. Mission accomplished!
Tilly’s Saturday morning swimming lesson was a challenge as Tilly had lost her confidence to swim on her tummy as she had missed a couple of sessions. This is very often the case when Tilly has a break from an activity – we’re just wondering how she is going to be when she gets back into sailing. Last year it took weeks to get her back to sailing confidently again, but fingers crossed it will be easier for her this season. None of this is surprising as it must take such a great deal of courage to carry out such tasks when you are so vulnerable, Tilly’s bravery never ceases to amaze me.
We went straight from swimming into Hanley shopping centre where we enjoyed a jacket-potato lunch which was made all the more delicious with Tilly using her amazing arm support. We then signed in at M&S to help with a Caudwell Children bag pack in their food hall. This is always such a pleasure as the cashiers are so friendly and the customers are so grateful to be helped and so generous with their donations. Once again, this experience was all the more delightful because Tilly used her arm support and was able to help pack the bags. I’m sure that between us we made a veritable fortune for Caudwell Children judging by the weight of the collection tins.
Joy of joys! We found a ball gown for Tilly. This is a great weight off my mind and all we need do now is attach a bit of Tilly-bling to personalise it. I’m on the hunt for stick-on diamante for Tilly’s chair as Tilly is expecting great things on her powerchair when she wakes up after the proposed surgery at the end of the month. No pressure there then! The surgery is actually starting to take up a lot of Tilly’s thoughts these days, so I do hope that she is lucky enough to have it done this time and it can be put behind her.
The Easter Sunday service was extra special because Tilly came out of her chair and sat in the pew between me and Candice, all snugly and warm. The Church was filled with flowers and joy and our Easter Garden looked just fine – we got away with it!
We dashed home hoping that the Easter Bunny had been and left an Easter Egg Hunt for the girls to follow. Rolf had worked his magic and devised a tricky trail filled with mind-bending clues leading to a huge chocolate Staffordshire hoard. This year Tilly declared that there isn’t a real Easter Bunny, but the spirit of the Easter Bunny lives inside Daddie! I’ll settle for that as it’s actually quite true.
Candice and I swept up a mountain of leaves and chopped back loads of deadwood in the garden on Sunday afternoon which was very therapeutic, and made a huge difference to how we look. Tilly bobbed out a few times to join in, but we’ve yet to find a good way of including her into such jobs. I’m sure there will be opportunities when Daddie starts planting seeds ready for his veg plot as this will require a lighter touch.
Daddie created a mouth-watering roast turkey meal for Easter Sunday, rounded off with Easter Eggs, which was divine. We then all piled onto the settee to watch the hunt for Dorothy accompanied by yet more Easter eggs! Bliss!
We had a wonderful Bank Holiday Monday day out with friends to Blackbrook Zoological Gardens. It was certainly bracing, but very beautiful and we managed to find a bird ‘hide’ in which to hide from the cold wind and enjoy our picnic. The girls scampered along the wheelchair friendly pathways gathering up clues and ended up going home with yet more Easter eggs.
We got home to find that Rolf had spent the day sorting out the guest rooms, making lamb hot-pot for tea and scaling a mountain of ironing! Just love that man!
Candice had her friend to ‘sleepover’ with us, complete with DVD in bed and a midnight feast! Tilly is already planning her turn, but we did stay up late and watch one of the finals of Masterchef whilst the girls were upstairs in Candice’s room. We should definitely go for a bungalow for our next house – access all areas!
Tuesday was very chaotic with a full breakfast service for the guests; bacon butties for the girlies; Rolf needing to disappear promptly to deliver Tilly’s chair for its service; stores needing to be replenished; a room needing to be ready by mid-day and a visit from the man from the Council to measure up for Tilly’s proposed new roll-in shower! To add a bit of challenge to the mix Tilly’s back-up powered wheelchair had no power and refused to be charged so Tilly spent the first half of the day being pushed around in this monstrous machine which was tipping her forward as the ‘tilting space’ function is only possible with power. We transferred Tilly to the settee but this did little to help her get comfortable and her lower back started to ache. Daddie came back at lunchtime with a folding manual wheelchair that he’d purchased locally. This was greeted with great joy as Tilly has always wondered if she could self-propel. Tilly did manage a couple of inches back and forth, but generally thinks that battery is her best way forward!
We discussed how it felt not to be ‘independently mobile’, a phrase that we have so often used and now fully experienced. Tilly found that the day had not only been really uncomfortable, verging on painful without her chair, but also she felt as if she’d lost all her ‘power’. Daddie rushed off to collect Tilly’s serviced chair and it was certainly welcomed like a long lost best buddie. Tilly decided that her independent mobility ranks as one of the greatest gifts of all!
I welcomed back Pauline, Tilly’s helper from Crossroads, like a long lost friend after the Easter holiday. We washed Tilly’s hair in the bath and discussed the wonders that a new roll-in shower will bring one day.
As I snuggled down to snooze after this rather busy day there was another long lost friend to welcome as, once again, I’d forgotten to remember that Sue from the Children’s Airway Service was coming to sit with Tilly overnight! What a treat. We had our usual chin-wag and then I skipped up to bed and slept right through knowing that Sue was just outside Tilly’s door should she be needed.
Woke up with batteries once again fully charged and Candice and I made our way to the Lake to support an Aiming High for Disabled Children activity day with Rudyard Sailability. Tilly stayed home with Daddie as she had to be lunched and ready to roll for her new dance class in the afternoon. It was uplifting to see ten young people experiencing the wonders of Rudyard Lake – sailing, paddling and cruising. It was fabulous to see Candice seemingly so effortlessly leap back into a sailing boat and whirl out to explore the Lake with a young person onboard. Candice does this so selflessly and so graciously – I am so pleased with all that she does and I can see how enriching an experience it is for her.
Tilly has spent an enriching afternoon in a dance workshop at Regent Theatre. Dancing is one of Tilly’s passions and she has loved being part of this special monthly group. It’s so good to see Tilly dancing so independently using her powerchair and arm supports rather than her mobile hoist and sling which does require another person to move it around. I was invited to join in but Tilly has banished me to this outer chamber so that she can fully embrace the spirit of the dance without Mummy putting in her pennyworth! Wonderful – I wouldn’t want it any other way!

1 comment:

bonnie said...

I know exactly what Tilly means about new chairs. Honestly, they become like old friends, and an extension of you, and then all of a sudden, you are ousted from your 'old faithful' and expected to get comfortable in 'an imposter'. It just doesn't happen. By the way, which is her back up chair? Still the Spectra from way back?
Also, i'm exactly the same with when I haven't done something for ages, I totally lose my confidence, and the thought of doing it again, EVER fills me with dread.
Glad you're all sorted with the ball, I thought it was on the fourteenth? But I recieved my invitation to the race night online today, adn that's on the fourteenth, so it can't be. Must be my mistake. to be honest, I feel lately, as thought I've got dates coming out of my ears, and it's making me ever more forgetfull, which is of course, TOTALLY the wrong way round, but Ce la Vie!And finally, re: your request to find a profile pic for facebook, if you log in and go on the caudwell's page, and go in thier albums, there's a beautiful one of all of you on stage with John, the first year one of Tilly's creations was auctioned. That'd be nice.
Ok take care;
Love Bonnie.