What do you Doodle every day?

One thing I used to find it very hard to reconcile in my head was how parents of children with disabilities would talk, on one hand, about how their child had brought joy, happiness and newfound serenity and appreciation to their lives while also recounting tales of terrifying hardship, exhaustion and worry. To me, it just didn’t add up.

Surely they are over-compensating for their grief and stress, I thought. It must be that, right, because raising a disabled child must be impossibly difficult and it can’t actually be possible to wake up in the morning happy, can it? How is it possible to live with knee-buckling fear every day but also have the energy and determination to push on with life, and to find within it inspiration, fun and laughter?

Last week I came across this article by Lisa Belkin in the Huffington Post about a mum of a child not dissimilar to Orange. Not knowing how to communicate to the world just exactly what her life as carer of her disabled son involved, she took coloured pens to paper and drew a map. Tellingly, Cristin Lind says of her care map that “Sometimes you can’t see your life until you step away and look”. Like most mums of children with disabilities, and often even more so the undiagnosed, Cristin is spinning more plates and juggling more balls than one human being can really manage.

Poring over her map and nodding in recognition, I started to think about how I might communicate what life is like caring for Orange, using images as well as words. Words have always been my default mode but sometimes, just sometimes, I like to indulge in the odd doodle too.

So this evening I snuck into the craft cupboard and sat down at the table with a piece of A4 card and The Beep’s set of Gruffalo colouring pencils (ssshhh…), and scribbled away until this happened.

Everyone’s experience of raising a child with disabilities is different, of course. And ours will change as the weeks, months and years pass, just as it does for any parent. But looking at this page crammed to the edges with what currently makes up our daily experience of life is both overwhelming and immensely satisfying. It is true to the moment. I think (at least I hope) that it communicates, better than my own words perhaps ever could, that life with our child with disabilities is both difficult and delightful, to varying degrees, and why I now completely understand when parents with disabled children often talk of feeling a gentle fulfilment with life, while also managing a to-do list that would make even the most organised and efficient of folk wince around the edges.

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15 Comments

  1. M January 23, 2013 / 2:49 pm

    This is really amazing. Super mum. Orange and the rest of your family have inspired a stranger who stumbled across your blog completely accidentally. All best, Millie x

  2. Mavis Cruet January 24, 2013 / 4:24 pm

    Thanks Millie, it's always lovely to hear that someone's found and is enjoying this blog xx

  3. Patti January 24, 2013 / 5:34 pm

    Wonderful doodle! Looks extremely familiar to me… my daughter is 16 now, with a complicated and rare genetic syndrome. I'm an artist, so I LOVE any kind of graphic representation of “reality” (whatever that is):).

  4. Michelle Daly January 27, 2013 / 10:29 am

    Wow, that's amazing; a real work of art and kind of sad, too.
    My daughter is almost 48 so we could never fit our journey onto a map – I wrote a book instead, which was very cathartic! 🙂

  5. Rachel Goswell February 3, 2013 / 6:17 pm

    What a great post. Your doodle is such a good representation . Mine would be similar in a few areas. Nice to find your blog x

  6. Mavis Cruet February 3, 2013 / 9:53 pm

    Thanks for all the comments. Took it out of me a bit, emotionally, doing that illustration. Seeing everything all on one page is quite something. Helpful, but challenging, IYSWIM.

  7. Lauren February 8, 2013 / 1:38 pm

    We are delighted to let you know that this post has been nominated in the ‘Most Informative’ post category of the SWAN UK Blog Post Awards (aka The ‘SWANS’)

    Be sure to pop over to the SWAN UK website to grab some badges for these categories to encourage your other readers to also vote for you – make sure you let them know which specific posts have been nominated!

    If you tweet the SWAN UK twitter account using the #SWANS hashtag with the URL of your blog posts and the category you have been nominated for we will retweet it for you and hopefully get you some new readers.

    Good luck!

    http://www.undiagnosed.org.uk

  8. Anne Hawkes February 28, 2013 / 11:34 pm

    I love this idea and keep coming back to look at it! I have voted for you in the Swans – good luck xx

  9. Looking for Blue Sky March 15, 2013 / 7:06 pm

    That's absolutely wonderful,I'd love to be able to create something like that for my daughter and well done for getting to the final of the SWANS

  10. teamaidan March 18, 2013 / 3:30 pm

    I love this graphic. So true and yes, the weird balance btw living with fear and being motivated to push on with life is something else. Thanks for sharing. Heather

  11. Hayley Goleniowska April 3, 2013 / 11:20 pm

    Beautiful and wonderful. Something we should all do to focus on our children and fremind ourselves of what its all about.
    Downs Side Up

  12. Mavis Cruet April 5, 2013 / 8:11 pm

    Thanks Hayley, I found it immensely helpful in just getting a picture of everything Orange related that was crowding my mind and taking up thinking space. Giving it all a visual identity and emptying it out onto a page clarified the important things, somehow. I recommend it!

  13. Mavis Cruet April 5, 2013 / 8:12 pm

    Thanks everyone for the lovely comments and the votes for SWAN UK Blog Awards, it means a huge amount to me, much love xx

  14. Renata April 8, 2013 / 8:27 pm

    I love this it's such a good idea and so full of meaning. It would be interesting to do another one in 5 years to see how it changed. I'm really glad this is a finalist in the SWAN blog post awards. I thought you would want to know that the winners will be announced on 13th April at 2pm as part of our Undiagnosed Children's Awareness Day. Keep an eye on the SWAN UK blog or twitter where I will announce using @SWAN_UK and @RenataBplus3 … GOOD LUCK!

  15. Mavis Cruet April 9, 2013 / 11:37 am

    Thanks Renata 🙂 I've just noticed I've coloured in two staircases in the doodle in black. Staircases are obviously an issue. Hoping that will have changed in 5 years! Looking forward to Saturday! x

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