4 minute read
The art of creativity by Annie Dewhurst
from Rarity Life Issue 02
by Rarity Life
Article and illustrations for Rarity Life by Annie Dewhurst
I’ve always felt that doing something creative can be incredibly cathartic, regardless of the end product. As a mum to a child with a rare genetic condition ‘me’ time, time alone to do something ‘arty’ or potter about, is very much treasured. However, as many in the rare community will attest, life can be unpredictable and plans may have to be abandoned when things go awry. My daughter, Hannah, has a very rare genetic condition called Cornelia de Lange Syndrome (or CdLS for short). Hannah received her diagnosis as a baby, quite a number of anomalies were identified early on including a cleft palate, a heart condition and skeletal differences. Life was busy! But when it eventually settled down a little, I began blogging about our life. The main purpose being to reach out to others just starting out on their own CdLS journey, as when Hannah was first diagnosed, there were various research papers on the internet, but no information that I could find which actually talked about life with the condition.
The blog then expanded onto social media (Facebook predominantly) and in a wild moment (what WAS I thinking? What was I drinking?) I announced that I would write a book about our life. Again, in the hope that it would help others just starting out on their own journeys and to raise some much needed general awareness. Fitting this in would be a challenge, especially as I’m not a fan of writing in the evenings…and weekends/school holidays etc would be out too. The book still isn’t finished, despite writing 83k words; much (too much) procrastination, illnesses, other responsibilities and one mojo lost, has scuppered completion. But it will get done, eventually. And, of course, none of us could’ve ever anticipated what 2020 brought us all.
Illustrations for Rarity Life by Annie Dewhurst
Everything went on hold. So it was pens down (laptop, actually) and all hands on deck to focus on keeping my child safe and happy 24/7. What spare time was afforded me, just to keep me ever so slightly sane, I veered away from the words and got a tad carried away doodling on Hannah’s ipad, with the intention of eventually adding some to the book. However, I did so many, I ended up with a book of doodles, and ‘The (little) Book of Broccoli’ was born. Fabulous feedback received suggested the book resonates not just with parents of children with CdLS, but also others on their own different journey. In addition, I have been contacted by professionals working with children with disabilities and their families who have found the book insightful. It’s made a difference. So I couldn’t ask for more.
Illustrations for Rarity Life by Annie Dewhurst
The doodles are basic (I’d never get a job in sales, would I?) and, not being particularly tech savvy, it took me a while to learn how to ‘draw’ on an ipad, however, the book shares some of our journey and personal experiences - some light-hearted, some good, some not so - of living with and loving an extra-ordinary, broccoli loving child, who happens to have CdLS. As with many things, with practice, we can improve. And I’d like to think that my doodles have improved somewhat since I started out. Having that little time here and there to be creative gives me great pleasure, it’s also a way of venting, and pairing it up with spreading more rare disease awareness, feels like a bonus. Whilst I eagerly await my mojo returning *puts hands together in prayer * and continue to procrastinate about The Big Book of Broccoli and/or deal with whatever life chooses to throw my way, I’m working on some more doodles for another book.
I’ll leave you with a quote from Kurt Vonnegut that I stumbled across recently and which I think is apt;
I hope you, dear reader, have something in your life, for yourself, that makes your soul grow too.
Written by Annie Dewhurst.
What is CdLS ?
CdLS affects between 1 in 10,000 to 30,000 live births and is present at birth. There is no ‘cure’ and it can affect many parts of the body. Individuals may display physical, intellectual and behavioural characteristics. However, it can be widely variable and not all people with the condition will show all of the aspects. Hannah also has a formal diagnosis of autism. You can find out more about CdLS at www.cdls.org.uk.
