Monday, 19 July 2010

A Comendation for Tilly

It has been a remarkable time. We met with Tilly's new Physio - Margaret - and it was with great joy that I saw Tilly standing again in her marvellous wheelchair after a break of about ten weeks following surgery. There is no sight like it, and I can only imagine how it must feel for Tilly. Naturally, life is a compromise, and if Tilly is to stand up every morning before school, then she must forgo the luxury of feeding herself, as the arm supports do not function so well in the standing mode, and Tilly is unable to swallow so effectively either. Life is a balance, and in my opinion standing for Tilly is, has and always shall be, paramount.

There has been feverish activity this last week with the final touches being added to "Tilly Smiles". We were honoured with a visit from Hilary and Doug from the Jennifer Trust for Spinal Muscular Atrophy to the offices of the Caudwell Children where Simon from the Design Team worked with us to get Tilly's book ready for the Conference next week. Tilly has worked alongside us all the way and we are tingling at the prospect of actually seeing the "real thing". We should have some copies to take the the annual JTSMA Conference to gauge interest and think about how many more to print. Every penny made will go to the Jennifer Trust, so we really hope that it will be well received. Time will tell.

We had an extraordinary Guides' Meeting this week as it was held at Rudyard Lake so that the Guides could participate in paddling Bell Boats with Rudyard Sailability. Little did Tilly know that it was also the perfect opportunity for her to be presented with a prestigious national Girlguiding medal - The Blue Star of Merit. The evening sun shone as Tilly was stunned to be awarded such an honour - in her words, "a real medal - like I was in the army". Tilly was chosen for this tribute because Tilly has shown that she can overcome her medical challenges and is always smiling and never moans! Also the Girlguiding Association acknowledges Tilly's role as Ambassador for the Caudwell Children. Tilly is now also the proud owner of Bear No. 2 of only 100 Centenary Girlguiding Bears in the world. Tilly has decided to call her Bear "Bailey" in memory of her Snowy Owl who made Tilly's Brownie Adventure so special.

However, we had much more to experience that special night as we took to the water and found ourselves caught in the middle of what can only be described as a tropical thunder and lightening storm. We were absolutely drenched! The Brownies and Guides sang their hearts out! It was night we shall never forget!

I did my "Talk" the next morning for the new recruits to the HomeStart programme. It is always a pleasure to deliver this session as I was lucky enough to have been blessed with Linda, a HomeStart Volunteer, who transformed our journey through this parallel universe beyond belief. It is quite difficult to imagine how two hours a week can literally transform a families experience - but I believe that we are living proof that it can happen.

Tilly's chair posed a challenge for us this week as the standing function had resulted in the leg rest being frozen in the raised position. Resolving this problem is a challenge as Tilly is wholly reliant upon her chair and is unable just to leave it with the engineers to fix. Tilly's back-up electric chair is unserviceable so consequently, Tilly drove around with her leg out in front whilst a new part was sent for. Unfortunately, Tilly managed to sustain a foot injury whilst she played with her friend after school. An x-ray shows that no bone is broken (Thank God) and we are treating Tilly for a severe sprain! Rolf took the chair to be fixed the next day and fortunately the part was in the shop and Tilly is now back up and rolling - but not standing yet as we need the swelling to go down! Hey! Hoh!

It was great to see Tilly back in the pool again as I'm convinced it is the best exercise she can get. The only snag is that I have to lift Tilly from her chair to the shower-chair and then on to the pool hoist. Tilly cried as I obviously hurt her during the transfer. I am exploring the possibilities of taking Tilly to swim in the special schools locally as the municipal pool really cannot cater for Tilly's needs.

Candice went off for a magical day with the Treetops Siblings Group to Blackpool. I am so pleased that Treetops dedicate such quality time to such a special group of young people who also live with disability, even if it is 'once removed'.

Tilly and I went to "Primarni" and Tilly came home clutching yet another pair, (two pairs, actually) of shoes. It breaks my heart that Tilly's heart's desire is footwear as she spends most of her life in splints and her feet are doing their level best to turn right over. However, we can still manage to wriggle Tilly's little feet into the latest creations at a price we can afford so that's great for the time being.

Tilly had her second piano lesson using her arm supports and loved every note. It must be a great feeling for Tilly to actually hear the fruits of her labours after years of practising. Fleur, Tilly's teacher, is looking into an accessible examination centre!

As a purely 'comb and tissue paper' musician, I feel another gong coming on!

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