Leonie and Lucille’s story: Our Family

2 March 2017

Children and young people, Family

We were introduced to Back Up during our first whirlwind stay at the National Spinal Injuries Centre, Stoke Mandeville. My mind was unable to process much of that upheaval period so soon after the accident despite the repetition and familiarity of each day. So whilst we appreciated Wacky Wednesday fun – a monthly cooking evening organised by Back Up for the children on the ward and their families – we weren’t really sure what to say or enquire about and it all sort of passed us by. The leaflets were carefully pocketed however, because of the enticing Skiing and Multi Activity courses they described, that had planted precious seeds for the future.

Following Lucille’s rehabilitation, the hospital teaching staff were quite persistent about contacting Back Up to assist Lucille as she settled back into school. During her first weeks, Lucille was very uncomfortable with being such a celebrity and being asked so many questions about her wheelchair and spinal cord injury. But Sophie, who has a spinal cord injury and is one of Back Up’s School Advocates, came in to do a presentation for staff and students. It served wonderfully to explain the key points about Lucille’s injury and stem the flow of curiosity. Even more importantly, it established wheelchair etiquette. Lucille will forever thank Sophie for stopping people from trying to push her chair and always offering their help. Lucille is glad to be able to ask for help when she needs it, exactly like everybody else.

There was a key moment for me during the presentation when Sophie mentioned the statistic about the number of people with spinal cord injury living in the UK. At that very moment, Lucille cheered. She instinctively regarded it as a positive thing that there were more people like her. It was almost like a club she was proud to be a member of – ignoring any thought of whether she’d rather not be in it, as that’s not the point!

There is no purpose in dwelling on an alternative life, but it’s very important to embrace the good of what is in yours, including Back Up solidarity. That cheer taught me so much about acceptance, and that instant bond with Sophie sealed the deal for Lucille – she now associates very good things and friends with Back Up and is always excited to hear of upcoming events like the Back Up Festival coming this August. She asked me, “will there be dancing?”

I was a little ahead of Lucille in that wholehearted endorsement for Back Up, as shortly before her return to school, I had contacted the Family Mentoring service when feeling quite desperate. The recommendation had been made several times, but with my social graces still shattered, communication was pretty minimal, and the strength to reach out to new people eluded me. My own grief for our more carefree life was still overwhelming. I felt so lost in the new world of ordering unknown equipment, dealing with bodily functions, needing to be forever vigilant and yet acutely aware this was now our everyday life. I knew we would cope, we just needed some happy times ahead as a family, but even a motivating thought like a family holiday brought its own worries and questions.

I contacted Charlie, Back Up’s Family Mentoring Coordinator, but was a bit stumped by her request for a focus point and stipulation of ten sessions. Did I have a coherent question to ask a mentor? Didn’t I simply want to be helped? Would mentoring mean tears and stories of woe? I felt confused, but somehow, thankfully, I instinctively trusted Charlie and the process.

I was paired up with Sarah and firstly there was an exchange of stories. I did wonder at that point if we had shared enough similar experiences: shouldn’t she have a daughter injured at the same age, the same way and be able to relate to everything I was wondering about? It turned out the key was humanity, kindness and understanding, immeasurably enhanced by valuable knowledge, experience and practical advice.

I can honestly say I owe Sarah more than she will ever know. Through the conversations with her and her excellent guidance, I was able to transform into a manager of my daughter’s care needs. I use that word on purpose, as it exemplifies the components needed: planning, resources, time allocation, but carefully carried out, as Lucille is of course primarily my daughter and doesn’t need a manager – rather it’s her care requirements caused by her injury that need managing. Sarah also recommended lists for everything: going out, travelling, hospital stays, supplies, medication, routines – everything! Those lists became a picture-filled routines booklet that is such a helpful guide to anyone working or interacting with Lucille, not least for Lucille herself: she knows all about herself, and has an easy way to explain it to anyone who needs to know. By organising it all, it made it possible to delegate and – more importantly – to distinguish between my personal assistant role and my role as a mother.

What’s also very meaningful is the confidence this direction has given all of us for the future. Lucille can already see how the booklet maps out her routines, giving her a sense of ownership while being assisted. It was very powerful for illustrating to the school that complex balance of what Lucille can do, what she can try, and what she would like to learn next – no wrapping in cotton wool in her peer environment when not needed! I often wish the booklet could automatically update, but other times it’s great to be so organic and know that a spirited girl can never be summarised in eight A4 pages.

What really blossomed throughout the mentoring sessions was my confidence. I write that cautiously, as I don’t want to sound pompous, but I trust that those reading this article will understand how frightening the plunge into the spinal cord injury world is at first and that everyone in it has a metamorphosis ahead. By everyone I not only mean the injured person, but also their family and friends. You don’t need to measure or compare the magnitude of each person’s adaptation, just know that everyone has their own individual challenges.

We are very lucky to have Back Up, who put everything in place for those metamorphoses to be positive. I guess the difficult part is timing as it’s such a personal journey. Lucille identified a personal champion in Sophie, and I think that bond to the charity will only grow for all of us. I wasn’t ready for any of it during the Wacky Wednesdays, but still appreciated that Back Up was there at the beginning. They gave us the first nudge, the first sense of being in this together, of not being alone. Wanting to be part of it just took us a while.

To find out more about Family Mentoring click here or you can contact our Family Mentoring Coordinator Charlie (Charlief@backuptrust.org.uk) or ring her on 020 8875 6763. If you want to learn more about our services for children and young people click here or email our U18s Services Manager Ella (Ella@backuptrust.org.uk) or call her on 020 8875 6764.