Something inside so strong (a blog for Rare Chromosome Disorder Awareness Week)

Helen Burness - 12 Jun 17

This will be my third awareness week that I have celebrated as the proud parent of a unique child. My daughter Marigold was diagnosed at 3 months old with trisomy 3q11 mosaicism, a unique genetic condition. I recall watching awareness week from the sidelines the first time back in 2014, exactly three years ago. Fresh on the back of Marigold’s diagnosis and a week in hospital after a major apnea attack and every test under the sun, I was still in shock and feeling very dark and isolated. I watched people celebrating their children on the Unique FaceBook Café page and thought how brave they must be, how strong they must be, to be so celebratory in the face of such challenges.

But a lot changes in a year. By our second awareness week, I had started writing www.measuringthemarigold.com. Buoyed by the stories I saw every day on Unique, I wanted to put Marigold’s story out there, to give hope to other parents facing unique genetic diagnoses, to show them the beauty and joy in raising a unique child

In 2017, Marigold is a fairly well-known face in the Unique community. Her blogs sometimes feature in the newsletter, my husband ran the London marathon 2016 for Unique and had both press and TV coverage (he is still dining out on this by the way.)  We are as out and loud and proud about our daughter as can be, about both the highlights and the challenges. It has been such an incredible journey. A hard one at times, not one I was ever expecting to make, but one that enriches all of our lives.

So when faced with writing a blog this awareness week, as ever, I struggled with what it should be about. There is so much I could write on. Life with Marigold is such a rich tapestry of unbelievable highs, accompanied by worries and sometimes sadness. Not about her, never about her, but about the world around her. As the saying goes, I would not change her for the world…but I would change the world for her. I continue to learn about her, about other children like her, to meet amazing, inspirational people, friends for life….and on the flip side I am often very tired, stressed and worried about her future. The journey continues. So I thought in celebration of Chromosome Disorder Awareness Week 2017 I might reveal some of the things I heave learnt and that have helped me on my journey so far.

(NB, I do this with respect for everyone’s own, very personal journey. This isn’t a glossy mag style ‘The Top Ten Things You Need To Know About Being A SEN Mum!” or similar, just some things that have helped me these past three years.

Find your tribe. For me, the Unique community has been a lifeline. Through their FaceBook Café, I met virtual friends such our little 3q Baby group, and we are often in touch to share highs, lows and to panic about respiratory conditions. I have met real life people as well. Friends who are not only on similar journeys with their own children, but enrich my life in other ways, like converting me to weekly yoga, or obligingly dressing up in a rara skirt for my 40^th birthday party (80s theme, to be clear). There are other friends who just “get it”, who will always lend me a sympathetic ear….or get me very drunk on leftover Christmas brandy and flat Diet Coke after a traumatic hospital admission. Find your tribe, online, in real life, through groups or classes and connect with them often so you feel supported and less isolated.

And this leads me nicely on to number 2.

I’m sticking with you – cos I’m made out of glue. When you find those people who understand you and your child, who speak your language, who will support you and you can be yourself with in both the good times and bad – friends, nannies, specialists, teachers, therapists – treat them real good and never let them go! And I hope those very important people in our life know who they are.

Comparisons – a sure route to madness. It is human nature to compare and virtually impossible not to compare our children to others. My hardest moments are when I try to compare Marigold to other children her age. The hardest reports to read are those that benchmark her against an age scale. You can’t compare your unique child who is doing everything according to their own timeline. When falling down the rabbit hole of comparisons, pull yourself out by remembering something amazing your child is doing that they weren’t doing six months ago, (Husband must get full marks for being very good at this strategy.)

Celebrate good times, come on! I struggle with this one. It is a well-documented phenomenon among unique parents that almost soon as you comment that your child has not been ill / is doing well, you will be tripped up by a hospital admission or health bombshell. But it is so important when something amazing happens to take the time to remember how far they have come and what an achievement it is. Share it with your tribe, share it with the people who understand and enjoy the celebration before moving on to the next worry.

Out and proud may not be for everyone. Everyone’s journey with a unique child is very different. I feel lucky in so much as although ours has challenges, I still have the energy to write about our life, our experiences and I find great strength in doing this. I will always let people know about Marigold’s condition up front to save any awkward tumbleweed moments when they ask why she is not doing X,Y and Z aged three. And in three years I have only ever encountered genuine interest and a desire to know more about the word of rare and unique genetic conditions when I do so. (Of course, you will always get the occasional ill thought-out comment, but this is just par for the course!) So much discrimination is due to ignorance, so I hope I am playing a part in changing perceptions by doing this. An approach as I say, that I recognize and respect is not for everyone.

Because you’re worth it.  When your life is consumed with multiple hospital appointments, therapies, admissions, writing PHD style documents to get your child funding etc., it is so important to try to stay sane by looking after yourself in all those really boring ways that everyone goes on about but actually work: sleep, diet, exercise and avoiding things that send you crazy. Being from the school of medicating all things good and bad with BOOZE, this remains a huge learning curve for me, but by introducing small changes to my life, less wine, less sugar, healthy diet (although not when in France when it is acceptable to eat entire baguette a day) moderate caffeine, early nights, yoga, swimming, jogging….I hate myself for writing it but it helps so much to keep your mind strong and positive. Because a week long hospital admission on the back of a drunken 3am finish after your 40^th birthday is just NOT worth it!

*NB – it is also important, for me as a former party girl anyway, to enjoy the occasional fall off the rails and to not feel bad about that. Everyone needs a release.

A brief political interlude. I’ll keep this one short. School funding is politics. Free healthcare is politics. Social care and services is politics. If you claim DLA or carer’s allowance, if you have child who needs specialist schooling, support in mainstream school, who is regularly in hospital, who has to access services, who may one day need to claim their own benefits, read up on every political party’s policies and support one who will do the best for your child and your family. The end.

Something inside so strong. It’s ok to feel fed up, frustrated and upset. When the going gets tough, as someone once said to me, let yourself fall and the people who love you will catch you. And similarly when you do have the strength, it is so important to lend it to other people who might need it at that time. I promise you that more often than not, you will get it back.

You’re the inspiration. For three years now, my life has been about looking for inspiration. When I need a lift, I will actively seek out something to inspire me. Reading stories out there in our Unique community never fail to move me. I turn to other people’s blogs, documentaries, articles, films, follow social feeds…we are so lucky to live in a world where content like this is easily shared and accessible. I think as well about other people I know who are overcoming their own life challenges with strength and humour and I take inspiration from them. At the moment, I love this video from Sign Out Loud, Labi Siffre’s “Something Inside So Strong” signed in Makaton. Such a special song on so many levels for our unique children and all they manage to achieve, and for their parents in the fantastic job they all do. I dedicate this song to all of you and send you all the inspiration and strength you need to see you through this next year.

www.rarechromo.co.uk – Unique is a charity whose mission is to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder and to raise public awareness. We could not have survived these past three years without them. If you would like to donate during awareness week, you can do so on the following link: http://www.rarechromo.co.uk/html/DonateNow.asp

Sign Out Loud is an active and fun session to inspire others to embrace signing so that they are learning at the same time as listening to and enjoying some of their favourite songs. Sign Out Loud is run by Makaton Tutors Sally Featon, Lecturer and Makaton Regional Tutor and Kate McCallum, an expert in the AAC field who has been signing with Makaton since she was 7. You can join Sign Out Loud’s FaceBook page on https://www.facebook.com/SignoutloudLC/ and follow them on Twitter on @SignOutLoudLC. Contact sallyfeaton@gmail.com for information on Makaton workshops.

Helen Burness

Helen is many things: 80's enthusiast, die hard Inspector Morse fan, marketing consultant, frustrated writer but above all, devoted wife and mother to two beautiful children. Her daughter Marigold was born with a unique genetic condition, trisomy 3q11 mosaicim and it is through her experiences with Marigold that Helen has found her voice as a blogger. Helen writes to raise awareness and promote understanding of those affected by rare genetic conditions and to show the world that there is beauty and hope to be found in a genetic diagnosis. Helen lives in South London with her husband and rock Sunil, her 7 year old son Harrison (who also deserves airtime for being the best big brother in the world) and of course, the wonderful Marigold herself.

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