I always get a “Friday Feeling” even though I don’t have a regular weekday job, and last Friday was extra special because we had extra special visitors. Rolf’s brother, his wife and their two-and-a-half year old grand-daughter came down from Yorkshire to deliver Christmas gifts and have a catch-up. It was heaven! It was great to see Rolf chatting with his brother, and I certainly value the sincere friendship and understanding of my sister-in-law. I so wish that we lived closer to our families as they are wonderful friends.
After Chess and swimming on Friday we rushed home to meet Sue from the Children’s Airways Support Team who had come to be with the girls whilst Rolf and I went out to dinner with friends. The girls were thrilled to spot their friend Natasha Wood doing a Fame number for Children in Need. Natasha is a great role model for us as she lives with SMA and is a successful ‘sit-down, roll-on’ comedian, who also presents on The One Show. People like Natasha are beacons showing us the way.
Unfortunately, Rolf did not feel equal to socialising and decided to stay home with the girls and Sue. My hectic schedule of the week had rendered him rather downhearted. It made me feel very low as life loses its sparkle if Daddy is down.
My beautiful friends scooped me up and I was welcomed into their warm, candle-lit home and served the most delicious supper with fine wines. We had weeks of news to catch up on and the hours rushed by. I was delivered home at midnight with the girls all safely tucked up in bed and Rolf waiting up. I had had a perfect evening; all that was missing was Rolf. I missed him.
Saturday was a special treat for Candice. The Treetops’ Sibling Group had arranged a day out for a group of youngsters whose brother or sister is a user of the Donna Louise Hospice. They went to the cinema, then to Frankie and Bennies for lunch and then bowling. Even more special, it was a reunion for the group who had been to the Children’s Adventure Farm Trust Holiday that had been arranged by the Hospice. Candice was thrilled and had been looking forward to this day for ages.
It is so heartening that places like Treetops take such care of these children as the journey that a sibling takes through the ‘World of Special Needs’ can be extremely hazardous. For a long time Candice wished that she too could have Tilly’s condition, longed for a wheelchair and stays in hospital with Mummy. Candice has long since passed this stage, but does have a carer’s role at home attending to many of Tilly’s needs, and she does notice that people often speak to Tilly and ignore her. We do talk about the situation and ensure that Candice has lots of activities in her own right, and we try not to overload her with Tilly’s care. We also look on the bright side and say what an interesting life that we do have with Tilly. However, it is a serious issue and we are very lucky that we have Rolf to keep an eye on all of Candice’s needs whilst Tilly and I may be out of the picture. “That’s what Daddies are for” is how Rolf sees it.
Tilly spent all of Saturday in the company of her beloved Hannah Montana, watching endless repeats of her favourite programmes. It was good to see Tilly taking it easy for a change, giving herself time to get over her slight cold. Tilly did, however, have an unexpected significant choking episode which required use of her cough machine and suction unit. I shuddered at the thought of being on the coach last week for six hours without any such support, and wondered how we would have coped. I offered up a prayer of thanks.
Saturday night saw the welcome return of ‘tea, like a proper family for once’, with ‘Strictly’ and ‘X Factor’. More importantly Rolf’s gloom had lifted, and Daddy was back! The chicken fajitas were excellent and the impressions sublime. A sense of tranquillity, within the chaos, had returned chez Tilly.
Sunday was a lovely lazy day made up of going to Church, piano and making the Christmas pudding. The girls love this job. This year Tilly used her arm supports to stir the mixture which was super. The girls spent the rest of the day writing their Christmas list for Santa and made a start on their Christmas cards. They are both now starting to feel more ‘Christmassy’. I guess Rolf and I must now make a start!
Rolf’s Sunday Roast was the toast of the evening, along with the news that Jedward had been voted off ‘X Factor’!
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