The Cold, The Trips and The Clicks

Tilly continued to battle with her tummy bug last week-end and so spent the week-end drifting and dozing, waking occasionally and, thankfully, showing slight signs of improvement. Jessica came and helped me bath and wash Tilly’s hair on Saturday morning, instead of helping with the swimming, and remarked how horrible it was to have Tilly so quiet. Candice, however, thanks to Daddie being able to hold the fort with Tilly, was able to carry on with her usual activities of Chess and rowing, and even brought home a trophy from the Staffordshire Chess Challenge as U14 Girls Winner. What a Star! It made me realise how exceptionally hard it must be for one parent families when one child is unwell – I guess that life can come to a standstill, especially if there is an additional need.


Rolf stayed with Tilly on Monday so that I could go along to the Treetops Carers’ Support Session which was great. I always love going to the Hospice and feel immediately enveloped in love, care and energy as soon as I step over the doorstep. It’s always a very mixed group of staff, volunteers and carers and the conversation is always vibrant, emotional and helpful. I was able to chat to a Mum going off on Caudwell Children’s Destination Dreams, and it was wonderful to relive the excitement and give advice on an experience that we shall treasure forever. I also learnt that a member of her family has a child recently diagnosed with Spinal Muscular Atrophy, and so we exchanged details with a view to me meeting up with them and seeing what I can do to help. My blood runs cold as I remember our experiences at Tilly’s diagnosis, so let’s hope that I can manage to bring comfort to them at this excruciating time.

Learning, of course, is an ongoing process, and I always learn something new when I talk to other parents and carers of children with disability, and love being able to occasionally pass on a 'gem' that will really make a difference. These days I love to hear the opinions and perspectives of young adults who live with disability as their unique and personal insight into living with disability can do so much to help us along our way. I appreciate that as much as I might try to really understand how Tilly feels, my views are only perceived ideas based on what Tilly says and does. As Tilly progresses, she might well be less likely to share her thoughts with me so I do appreciate and welcome the thoughts and feelings of others who have already 'been there, done that and got the t-shirt!' I also expect that Tilly will go her own sweet way, but every little helps when it comes to parenting.



Before getting back to Rolf and Tilly I gave a guided tour of Treetops to a GP in training and I felt very proud to show him around all the magnificent facilities on offer. He was certainly extremely impressed and remarked on the incredible sense of community and camaraderie he could feel. I think it is very often the case that people think that children’s hospices must always be very sad and tragic places, but this couldn’t be further from the truth at Treetops.

It was good to see that Tilly was very much on the mend and had spent the morning making flapjacks with Daddie. It was a great pleasure to send Tilly off to school on Tuesday morning and I was able to go along to the Caudwell Children’s offices and try and lend a hand with whatever was going on. I love being with the Caudwell Children Team, and always leave feeling really ‘charged up’ as they are so dynamic in their approach.


The ‘Airways’ Team came by and adjusted Tilly’s ventilator as a recent sleep study showed that more support was required when she ‘dipped’ in her oxygen levels overnight. I was then treated to a super night’s sleep Sue from the Team came and did a night sit.

It was wonderful to be able to accompany Tilly on a Geography Field Trip to Carsington Water, near Ashbourne. We travelled in the accessible mini-bus with a few other children and the majority of the classes went on a coach. It was cheaper to the travel this way as coach companies are entitled to charge a premium for their wheelchair accessible vehicles. I can’t believe that this is quite legal these days, but apparently it is, which is quite remarkable. The extra cost for Tilly to travel with the rest of her schoolmates on the coach would have been £90.00 on this occasion. In her First School there was an additional charge of £40 every time Tilly travelled on a coach.

However, we did have a super time pond-dipping, sketching, examining habitats, all of which was fully accessible for Tilly. The major challenge was the cold as Tilly’s hands became so cold that she couldn’t drive or hold a pencil. This is a constant winter problem as Tilly finds wearing gloves so difficult as her finger-tip controlled joy-stick is so sensitive. The closest we come is cotton, finger-less gloves which do help a bit, especially with those little sachets of hot crystals fixed to the palm of her hand.

It was great to see Tilly back in the pool again, but once again, Tilly struggled to stay warm as the water temperature was low. We’ve tried wet-suits but they do restrict Tilly’s limited movements, which in turn, doesn’t help stay warm. I’ll have to look into what’s available this season.

Tilly has pedalled for up to an hour nearly every day on her exercise machine which
is brilliant, as she is not only getting fit, but whizzing through her reading books.

Poor Candice got a shock at Church this week when she was called up, unexpectedly, to do the first reading which just happened to contain many difficult to pronounce place names. Normally we’ve practised the reading during the week, but for some reason, we had not noticed that it was Candice’s turn. Candice walked slowly to the lectern, skimming the words on the way, those who’d noticed she’d been caught short offered up a prayer and I held my breath. No need to worry – Candice read like a dream, and was heartily congratulated by all for her achievement. Bless her, and to think that Candice had received speech and language therapy in her early years to help manage a stammer.


The rest of the week-end was spent packing and preparing for Candice going off to Outdoor Pursuits Trip with School. Candice is so excited and I’m sure will get one hundred per cent of all the amazing activities on offer. Rolf and I are missing her already, and Tilly would like Candice to ring us every night and read us some Harry Potter!.


I so wish I was going along too, but I might just get a chance when it is Tilly’s turn as we did have some fun when we went on such a trip with the First School



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Many thanks,every click will help.