Friday, 23 October 2009


Thursday was the day for good news. The postponement of Tilly’s operation was a great relief. Then we heard that Tilly’s infusion, that she was to have intravenously every three months, over three days, lasting four hours has been changed to once every six months, lasting half an hour. I’m sure I saw Tilly’s chair leave the floor and her wheels click together in triumph! It will mean a train ride to Birmingham Children’s Hospital as a day patient, and then Tilly plans on ‘hitting those shops!” What a bargain! It is interesting psychology that Tilly had to endure the three day, four hour, quarterly infusions to be so thrilled at only having one for half an hour every six months!

The same sort of psychology applied on February 14th 2001 when were told that Tilly had Spinal Muscular Atrophy. Whilst waiting for two days to see the Consultant in Manchester to assess the severity of Tilly’s condition, Rolf and I were convinced that Tilly had the most severe form, Type 1, which came with a dire prognosis. We were destroyed. We simply collapsed physically and emotionally and my big brother Paul hitch-hiked from Wales to support us and get us to the appointment. We were dazed and confused with our heads down, when an unforgettable Irish voice said “Tilly’s a fine ‘Type 2’, so she is!” I remember being amazed and asked, “Can we keep her?” The same Irish brogue said, “Sure you can, and you’ll need a powered wheelchair for independent mobility and nothing less than mainstream education”.

Well, I don’t remember much else at that meeting except the unbelievable joy at the miracle of being able to ‘keep’ Tilly. What should have been devastating news, that our little girl had Type 2 SMA and would be seriously disabled all her life was like music, because we could keep her. Nothing else mattered. We danced out of there, holding tight on to our baby, honoured to be given the privilege of giving her and her sister the most magical lives possible. Two days earlier Rolf’s Valentine’s present was a small picture frame, and I’d written on the blank insert “We Can Do It!” Now, although I knew it would be challenging, I believed that we could.

Back to Thursday and Tilly’s wheel-clicking, and Ellen, Tilly’s Carer and Becky, BBC Radio Stoke’s Reporter arrived at 1600. It was great to have a catch-up. Candice had had a reprieve from hockey so she was home for a change on a Thursday and able to squash in a bit of homework before flying off to dancing lessons. The girls watched Masterchef, which has become a firm favourite for Tilly during her recent spell at home. Rolf does great impressions and so there is not a meal now that goes by without comments by ‘Michel Roux Jr' or 'Greg Wallace'.

Rolf and Candice came back from ballet with Candice looking full of cold. I can’t wait for the holiday for Candice to be able to recharge her batteries. The evening ended with ‘pizza on the couch’ and vague memories of Masterchef whilst I slipped into unconsciousness around 10pm.

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