One of the really hard things about living with my daughter’s Anorexia is the not knowing what will happen day to day, each week, months or even years ahead. I had to make the enormously difficult decision to cancel a planned teaching trip to Bernina India because in January she could be at the same stage, in hospital or hopefully maybe in recovery but there is just no way of knowing.
I have to confess that I am finding it difficult not to be “busy”, trying to fit as many multiple projects and thoughts into 24 hours as I possibly can. All of my work is suspended apart from customer quilts that I can fit in when convenient. I do not have the luxury of time to continue with my Rainbow Warli quilt at present but I am trying to do a few little sewing projects to retain my sanity. I made a small bag for the Elna Lotus plug, shortened some trousers, completed a small customer quilt and found myself becoming an Art Therapist rather than an Artist.
I have been providing opportunities for my daughter to create in my workshop as a distraction from her mental torment. We have had a go at soy wax candle making, vegan food covers, bunting and screen-printed a duvet cover. We also put together an IKEA Raskog trolley to organise some of her art materials as she hopes to be allowed to study Higher Art even though she is not well enough to attend school which resumes this week.
The team at CAMHS (Child & Adult Mental Health Service) has insisted that she should be told her weight at every session twice a week but I think she should be weighed blind since this fixation is a major stumbling block in convincing her to eat to improve her health. The CAMHS service does not provide any counselling until some weight gain has been achieved but she has started to see a private therapist just to help calm her mind and provide some relaxation techniques so she may be able to shut down some of the Anorexia some of the time.
I suspended my daily vlog snippets because I did not have any work to report on and I found it difficult to come up with any silly or quirky comments of my day. Consequently I was spending less time checking in on social media so it was not until I received a message from my friend, Kay that I discovered that Iconoclast had won “Best in Country – UK” at the World Quilt Show. I was delighted and it was a lovely boost to my confidence, particularly when the quilt seemed to have underwhelmed judges in the UK. I had so many wonderful congratulatory messages and it reminded me that it is actually a very nice quilt that took me a long time to complete:)
By this time on a Sunday evening I would normally review what I hoped to achieve in the week ahead but in my new role the priority is to make a note of appointments and work out what sort of soup to attempt each evening. Thinking positively, at least she is still at home with me where I can only try my best to keep her going mentally and physically.
Life is far from normal at present – it is challenging trying to not make everything about my daughter’s struggle with Anorexia. We are attending medical appointments at least twice a week in a desperate attempt to keep her out of hospital. Normally an ill child should be getting well in hospital but in the case of this illness that could be the worst thing. It could mean being sent to a secure unit away from home with limited family visits and fed forcibly under sedation without taking into account my daughter’s strict vegan diet.
We had to attend a session where the family had to go through the motions of having a meal that she would not eat and became very distressed. The family based treatment is to make insist that the child eats 3 normal meals a day plus 3 snacks when they want to eat nothing at all. I am finding it frustrating that counselling is not recommended until weight is restored so we are unable to break the cycle of becoming increasingly unwell and the illness means that she cannot think rationally. She is freaked out every time she is told her weight and feels compelled to eat even less and exercise even more.
It is emotionally exhausting watching a child suffer and knowing that the only medicine is food which she cannot allow herself to eat. She is suffering from fatigue, hypothermia, low blood sugar, low blood pressure, low white blood cell count and it is amazing that she is even able to function at all.
I have been trying to make soup that she will eat and it is a triumph if she will eat a few teaspoons. My older daughter and I have been trying to distract her with activities including making a dress from an old shirt, wax food wraps, artwork and even patchwork. We have to approach each new day as a new one and hope that our strong will can break the deadlock.
Life is a long way from normal – everything is on hold. My family and friends worry that they cannot do anything to help but just hearing that they care is enough to give me the strength and courage to keep going. I simply have no alternative.
I set off from Norwich to Birmingham thinking that the trip would take 3 hours but roadworks and heavy rain delayed me. Notwithstanding, we cracked on with setting up 6 long-arm machines in a classroom and 4 more on the main stand. It was a huge job but the team worked really hard and I was ready to start teaching on Wednesday afternoon.
My classes all went really well with just 6 students, each with their own machine. My classes were designed so that there was more than enough to do, even for the most capable pupil. It was an opportunity for the students to try out all sorts of templates, and experiment with stitch regulator or manual free-motion designs. There was not really any chance to add colour to the “How to Eat an Elephant” piece because there would not be time for paint to dry but at least the students could see the possibilities and learn some new tips. There was a bit of a panic for my twilight class when it was discovered that all of the master templates had been taken away by the morning pupils in error and I could not get any photocopies made. I had to think on my feet, give the pupils other exercises to do while each one traced the image straight off the sample quilt.
I had to “wing-it” through a Facebook-Live demo using a crackly headset microphone but I managed to keep quilting and talking for a good 40 minutes! This can be found on the Bernina UK Facebook page. Other demos were given by the talented, improv quilter, Nicholas Ball, (see his Judges’ Choice quilt below) Philippa Naylor, Sarah Ashford, Janice Gunner and Amanda Murphy.
I did not manage to find time for much of a look at the show other than to see the winners and whizz past the others. There were some beautiful quilts this year. My Warli quilt was on the end of a row in good light and looked respectable, especially as it was never designed as a competitive entry. I was fascinated by India Flint’s eco-dyeing exhibition. This collection was made using rusted, wrapped objects which were displayed alongside the finished textiles.
During the entire time that I was there I had to mask how worried I was about my youngest daughter’s Anorexia which had escalated to a critical point where she refused to eat anything at all. My older daughter and dear friend tried very hard to keep her going but it was clear that I needed to head home to take over her care. Fortunately, my teaching commitments were complete by Friday night so I headed home on Saturday, feeling guilty that I was not working at the show and equally guilty for being away from home.
I realised that I was totally naive when the illness was first diagnosed. I had no idea how quickly it would take hold and take over my daughter’s every decision regarding her well-being. I have heard horror stories from other parents on the type and duration of treatment and do not feel at all prepared for the struggle ahead which could even last years. I will have to become her full time carer and must hope that I will be able to quilt some of the time as my therapy. We have an important appointment today which may determine whether she should be hospitalised so we are all on tenterhooks to see what happens next.