Dee is Mum to her little girl Tilly who is five. Tilly has Rett Syndrome. Her mum describes her as: “Sassy, funny, strong, determined, resilient and very sociable. Rett is only part of who she is.”
In this blog Dee shares how she manages to cope with day to day life caring for her beloved daughter Tilly.
Back when Tilly was diagnosed
When I first had therapy after Tilly’s diagnosis in 2018 I was told that in the years following Tilly’s diagnosis I didn’t cope well with the strain and significant stress and took comfort in unhealthy coping mechanisms. I was eating too much, and trying to do too much. To avoid all the difficult feelings. There were so many of them.
Those words then came back to me as I navigated a return to work after five months off in November A period of time that had seen me resuscitate Tilly, who then had an emergency NG tube, a permanent feeding tube, a broken leg, a house move to somewhere we could adapt and the 24-hour care and hardly any respite at all. I was exhausted.
I stood in the kitchen after a conversation with my sister that had resulted in me telling her just how overwhelming it all was and the words came back to me: “It’s a marathon not a sprint.” I knew then in that moment that things needed to change for me to sustain work and home without having a complete mental breakdown.
Taking comfort in listening to others
I stumbled across a podcast with Fearne Cotton and Dr Rangan Chatterjee about how to cope with life and the stresses and strains. It was liberating and so I spent one Friday doing things that I felt would help me.
I bought an A2 sheet of paper from Hobbycraft (that by sheer coincidence support Together for Short Lives) and I typed up the coping strategies my therapist gave me in 2018 when Tilly was diagnosed.
When I have thoughts that I feel I can’t cope I write down the for and against. Facts not feelings and having it in black and white you realise they’re feelings not actual facts. Having a visual reminder on the wall helps me.
I went in search of Dr Chatterjee’s book in my local library. I read something interesting to schedule your entire day in blocks. It sounds crazy but actually, it works, because you have allocated blocks of time you don’t feel so overwhelmed about things. It releases your mind from a constant loop.
I am not saying it will work for everyone but it has helped me a bit.
Going back to work
I also realised I need work for a distraction from Rett Syndrome and the seriousness of my personal life. Work takes your head somewhere else and if you can do it, I recommend it. I know I’m lucky I have a job I enjoy and hugely supportive employers who are flexible and understanding. That should be a right but I know it isn’t.
I read a statistic in a book the other day saying 84% of mother’s of disabled children don’t work. I think that’s staggering, unsurprising, but massively frustrating because I see how it happens. I see how the never-ending list means working is impossible. I feel passionately that we need to think creatively about how we help those parents that want to work but feel unable to because your mental health suffers if your brain isn’t going anywhere else. Well in my opinion it does anyway.
Living as healthy as possible
I also realised for me I can’t drink alcohol, it affects me too significantly. Maybe an occasional glass but that it is. Otherwise I wake up in the night having panic attacks, going all over the “What ifs”, and let’s be honest daytime is challenging enough without sleep being disrupted.
I read that it’s helpful to find what you would do when you are at your lowest motivational level. For me that is 15 minutes of meditation on an app. No matter how bad I feel I always, always do that. And it does help. On better days I also do some yoga on YouTube, brilliant for calming the nervous system, just 30 minutes on the carpet. Or I do an online yoga Zoom class, if I have more energy. The point is moving, and doing something that shifts the energy.
That is more crucial for us parents of children with complex needs than anyone, because without self-care how can we be there for our children, or show up for work, life, any of the important stuff for your child.
If you can make time, try
It is so easy to think we don’t have time, but if you schedule your day, I have found you can carve 5-10 minutes out. I realised that once Tilly got to four, how significant her needs are and will be for evermore.
That watershed moment for me made me realise I had to make changes to my lifestyle to take care of myself, around eating, exercise, stress, what my triggers are, how social media can be triggering for my anxiety, and how accessing help and support from charities such as Together for Short Lives and Rett UK is so important because you are speaking to people who understand.
You can balance life, I feel, but only with a structure around you and self-care, which isn’t a luxury, but quite frankly an essential requirement.