Comfort in creativity

Back in the autumn of 2016, I was invited to attend a parents workshop. All I knew was that it involved textiles-quilting, and an exploration of our thoughts and feelings regarding our daughters’ infertility.

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.

A whopping 7cm!

We knew that G had grown - her aged 3 school trousers had suddenly become ankle swingers, and her smallest size school T-shirts were quickly morphing into cropped tops, but we didn't quite realise just HOW much she'd grown.

So when we attended G's endocrine appointment several weeks ago, we were astounded to find out that not only had she grown nearly 7cm in 7 months, but she had jumped a centile on the growth charts too. To put that in to context - G had a period of 16 months (or thereabout) where she only grew around 8cm. This infact was the period of slow growth that triggered the start of her growth hormone injection. 

HOW AMAZING.

We are so lucky that G can receive this treatment. Sure she still has a grumble about her daily injection, and the breakthrough of not needing a numbing ice cube was only short lived, but she is still a trooper. She's more than that...SHE'S AMAZING.

A difficult topic of conversation

One aspect of Turner Syndrome that I am still to get my head around, is the lack of functioning ovaries, which sadly for most means not being able to create and carry a biological child. This is still a subject that G has little to no understanding of, and is something that we want to drip feed to her sooner rather than later. I'm currently researching stories and books to give rise to such discussions.

Last year I was lucky enough to partake in a textiles project which aimed to give a voice to mothers of girls with Turner Syndrome, and specifically voice our views on infertility. What a fantastic day, and what a beautiful project. The quilt that was produced was a masterpiece. It spoke a thousand words. I can't wait to write a blog about this. Watch this space.  

Conference

I can't believe that I haven't blogged about the TSSS 2017 conference! What an incredible, informative, heart-warming weekend it was. From the uplifting performances at the Saturday night Ball, to the mum's heart-to-heart where we could pour out our deepest thoughts and worries. Lay our souls bare. And every one in the room knows exactly how you feel. Every. Single. One. 

G didn't cope quite so well with the weekend. Over-excited, over-tired, over-stimulated and totally out-of-routine was our girl. It was melt-down central. (Gosh it's hyphen central too!). That said, it was worth it. She had a ball. And what we get out of it, as a family, is well worth the  tears and tantrums! Plus some of my favourite people were at conference. Miss you already xx

A HUGE thank you goes out to Arlene, Carlene, everyone at the society and the guest speakers. I learn more in one weekend than I do throughout the rest of the year or from any other health professional. 

Appointments

Ears and eyes - check. Back in six months time.

Endocrine - check. Back in six months. Although a referral to a large children's hospital, who offer a dedicated Turner Syndrome clinic, is hopefully on the cards. Daily growth hormone increased slightly. 

No appointments before Christmas now - CHECK!

School

This year was the first time that I viewed the count down to half term in a totally different light. Normally, as a teacher I am willing the next holiday to make an appearance quick sharp. HECK we teachers have an actual countdown, usually in our diaries, and from the first day of term!
Whereas come October I was secretly hoping to skip half term. G needs routine, loves school, and without either she could potentially have been a handful... That said, G was in desperate need of a break. As of September, her immune system seemed to take a leave of absence, so a week at home was necessary for medicinal purposes.

In actual fact I LOVED my week with my biggest babe. I hadn't realised just how much I had missed her since she started school. We had lots of fun, baked cakes, played in the park, and shared cugs and kisses with baby H. 

G has settled in to school really well, and loves sharing her daily learning with us. The school have been incredibly supportive of any needs that arise due to  her Turner Syndrome. 

A report from the occupational therapist regarding some of her struggles (fine motor skills, concentration, sensory processing disorder), along with their own observations and our input have resulted in G receiving the support that she needs. We were also pleased to learn that school share similar views to us with respect to G displaying traits of Attention Deficit Hyperactivity Disorder (ADHD). She definitely ticks the boxes for the three main aspects - hyperactive, impulsive and inattentive. As this can fall under the umbrella of Turner Syndrome, no EXTRA diagnosis is needed, and again the school are putting measures in place to aid G. Granted, not much support is required yet, but they are willing to do the leg work as and when it is needed.
Happy G, happy mummy and daddy!
Mental note for mummy-stop it with the 'sit still and concentrate'... 

In other news...

I'm sure I had other news?! My brain doesn't work any more! I'll update this section as and when some of my brain cells start to function again.... I did eat a mince pie, tune my DAB radio to Xmas Magic, and watch some Christmas adverts today. Bet you wanted to know that important info didn't you!

LOVE YOU FOREVER AND ALWAYS LITTLE G

When did we last have our boiler checked?

Nope that wasn't a question from hubby to myself, or vica versa. It was infact the topic of conversation initiated by G during Sunday lunch this weekend!
I'm sure sometimes that she is four going on forty....

She also declared during one of our numerous car journeys that when people fall out they should just say sorry at exactly the same time and go back to being friends.
When did she get so grown up? So wise? So anxious about the state of our boiler!!
When she needs or wants something, such as a new car seat, she asks if we'll have enough money left over from daddy's wages. Even offering to use her own money. When did she become so thoughtful?

Often we forget that our mini babes are like sponges, they soak up everything around them. The good, the bad, and the rest.

I THINK I'D RATHER STAY AT HOME WITH YOU AND H TODAY....
Oh babe, school doesn't work like that, you can't just pick and choose!
Four weeks in and she's loving school. But she's shattered. She's caught every germ going, doesn't have the greatest attendance rate already and has even had a brief stint in hospital. It sure is knocking the stuffing out of her.

CONFERENCE TIME!!
It's nearly upon us, the annual visit to the best gig in town-the annual Turner Syndrome Support Society conference. I know I say it every year, but it's the one place I (as a TS mum) feel truly at home. We are looking forward to an action packed couple of days, though perhaps not so much looking forward to hours and hours on the M6 with a young baby.

APPOINTMENT UPDATE
So the eagerly awaited endocrine appointment to asses the impact of her growth hormone was, wait for it, cancelled. Hmm. Can't be helped I guess! Now to chase up a replacement appointment.

Physiotherapy was more successful-firstly it wasn't  cancelled, and secondly she doesn't need physio!! Her initial assessment led to some rather surprising results: no balance or coordination issues, good muscle tone, surprising physical strength and good body control. Who'd have thought? She's the clumsiest child going!

Tomorrow sees G attend an hour long occupational therapy assessment. A number of issues to be explored include:
Taste and texture, sensitivity to noise, sensitity to clothing and labels, fine motor skills, mini obsessions, need for routine.... the list is endless, and may amount to something, or nothing.

As always we are so blessed with the care we get from the NHS. Recently I saw a US Turner syndrome post regarding the cost of growth hormone in the US... nearly 26,000 dollars for ten months worth of hormone. MAN ALIVE how lucky we are to get the ESSENTIALS for our girls on the NHS. 

And on that note it's time for me and H to run-G's harvest festival service commences in 30 minutes and I'm a total stress head when it comes to school mum related activities (primarily getting there on time and parking!). 

Tomorrow marks the first day of...

.....G being off sick from school. GUTTED. 

This past week my social media has been flooded with first day pictures. And tomorrow I'd have joined the brigade of proud parents by showing off our girl on her first day of big school (remembering of course to take internet safety into account!).
However.....it's that time of year where our babe starts to pick up whatever germs are doing the rounds. Result? Mummy having to call in sick for her. On her FIRST day.

Some sort of upper respiratory virus and a urinary tract infection are the culprits of G's ridiculously high (40 degree +) temperature. In true G style, it all came on suddenly and when usual 9-5 GP services are non operational. Thank goodness for our local walk in centre, they are amazing.
Hopefully after a couple of doses of antibiotics and some much needed rest, she'll be able to start on Tuesday or Wednesday.

Poor sausage, she has been counting down for literally the past 63 days (tick chart and all). I'd even had to experiment with stain remover on her new uniform due to her insistence on roleplaying her first week of school. It has been a long summer holiday!

In other news:

We've a frenzy of appointments coming up.... eyes (to further assess G's short sightedness), ears (only one infection in the past year!!), physio assessment (balance and coordination issues), occupational therapy assessment (sensory issues) and the much anticipated first growth check with the endocrinologist.
Can you believe it's been nearly six months since we embarked on the daily growth injection journey?! Our first significant milestone in our walk with Turner Syndrome. Daily injections are now a part of G's routine, and we've even managed to knock the daily reward sweet on the head too. Our babe continues to amaze us on a daily basis.

The countdown is on-Annual Turner Syndrome Conferenc commences in 25 days....Can.Not.Wait! Old friends, new friends, giggles, tears, food, dancing, AMAZING workshops and guest speakers, and for one weekend only a chance to feel like we are with people who have walked our walk. People who 'get' us, and G.

So that's another round-up complete. Fingers crossed for a slightly delayed but nonetheless amazing start to her first academic year at infant school. This was a day that at one point I wasn't even sure we'd ever experience. Our little miracle!