Now, without wishing to offend, quilting (or my narrow-minded view of what this entailed) was far from the top of my ‘to-do’ list! However the location of the workshop was close to home, and a handful of mothers from the best ever extended family would also be joining. I was sold. Dubious, but sold.
On the Afternoon of the workshop I travelled the 20 or so miles to mamma C’s house, had a mild anxiety attack mid journey (that darn roundabout wasn’t fit to be called a roundabout-you should have to take a test to navigate that monstrosity!), but arrived raring to go.
I was instantly made to feel at ease, especially upon seeing several familiar faces from the Turner Syndrome family. That plus my pain-in-the-rear food intolerances had been more than catered for. So it was tea, sandwiches and cake aplenty. After some brief catch ups and some new introductions, we settled down with anticipation of what was to come.
So what exactly was to come, and why?
Whilst sipping tea and eating cake, Amanda Clayton and Dr Jacqueline Collin were introduced to us. Some years earlier whilst Dr Collin was researching her PhD thesis, she had been moved by the sadness experienced by mothers of girls with Turner Syndrome - more specifically regarding their daughter’s fertility.
So as a result, the collaboration between Amanda - a fine artist, and Jacqueline (and Kings College) was born. They were keen, via the arts, to give a voice to mothers of daughters with threatened fertility. To me and others like me. In addition to this, they wanted to create a tool that would aid the future teaching of medical students. Textbooks, perhaps the Internet even, only really give a one dimensional view of Turner Syndrome. Of any chromosomal abnormality. But what about the emotional aspect?
During the afternoon we were tasked with each creating a square, or a patchwork of squares, that would be assembled as part of a multi-layered quilt. A narrative quilt.
I still was unsure of what was expected, and what would be produced by the artist Amanda. I guess in my mind I was thinking of a classic quilt. Single layer, patterned, warm, cover the knees on a cold Winter's day!! How could that be a narrative? A teaching tool? How could it be emotive? Therapeutic?!
All in all we spent around 4 hours together that afternoon. Sharing stories, sewing, drinking tea, and after a little time, pouring our hearts out. Our fears and frustrations, but also our hopes and dreams for our incredible girls.
By the time the afternoon had concluded, I had created a square containing broken heart with stitching binding the two sides of the heart back together. I had contributed several personal thoughts which was happy to share on the quilt, and one thought which I had asked to be concealed. Purple was my chosen colour for the final stitching. I then entrusted my inner most thoughts in tangible form, to Amanda. She would do what she does best-create beautiful artwork.
But I was still clueless as to how I envisaged the end product...
Fast forward to October 2017, a little over a year after the workshop, and I finally got to see the narrative quilt in all it’s glory at the annual Turner Syndrome Conference....
WOW. I was blown away. It was so far removed from what I had imagined. I was almost embarrassed at my total ignorance surrounding textiles work. The material edges were raw and somewhat unfinished. Much like the raw emotion. The layers, the depth, go some way as to reveal the complexity of the condition. The cold hard medical facts on one side of the quilt to me represented the information you are first given with a TS diagnosis. The ‘textbook’ stuff. With the flip side of the coin (or in this case the quilt) being the personal story. Each layer a different story. No two stories or girls or families the same.
I had never imagined in my wildest dreams that a piece of textile work could be so stunning. So emotional. But then I guess I had a vested interested in this art work. Part of this was my own raw emotion. It was about my beautiful miracle. My little G.
Since the completion of the quilt, it was entered into the International Festival of Quilts fine arts competition and shortlisted as one of the top 20 entries. It has also been displayed in numerous venues and has triggered many emotional responses.
Further to that, it has been used as a teaching tool, and a way of initiating conversations about this very delicate issue. Threatened fertility in girls with Turner Syndrome.
You’ll notice that I started this blog post using the word infertility, yet ended it with threatened fertility. TOne thing I have learnt through this project, and as being part of the TS family is that infertility isn’t a word that is liked or used by many . It’s cold. Clinical. But not only that, it’s not the case for EVERY women with turner Syndrome. The term threatened fertility encompasses all with TS-some women with the mosaic form of Turner Syndrome (only partial deletion of the second X chromosome) may not face the same fertility issues.
So what was the outcome for me on a personal level? I’ve long been a convert to the therapy of the arts-predominantly music. My beloved piano has helped me through untold difficult times. But I would have never considered myself artistic in the textiles sense and I certainly didn't imagine that I'd enjoy such a project.
However for me as one of a small group of mothers to the most amazing, resilient, and caring girls, I found my voice that September day. I found comfort in creativity. And I hope that my own daughter will have the opportunity to do the same one day.
~
Credit to Amanda J Clayton for the photographs.
Heartfelt thanks goes to Mandy and Jacquie for facilitating this project-Jacquie for your desire to explore a subject so close to our hearts and Mandy for turning it in to something truly wonderful.
Love to my fellow Turner Syndrome mothers (and fathers)
And my heart goes out to my inspirational little firecracker-little G. I adore you.
So beautifully written it was a quite remarkable day, it touched us all. I am so proud to have been a part of this amazing project.xxx
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