At home with Daisy, Martha & Nora

As parents of a young child with Rett Syndrome, we are familiar with feelings of uncertainty and fears about our daughter’s health but I never imagined we would find ourselves where we are today. The 5 of us have been self isolating for a week and the growing number of cases of Covid-19 only adds to our anxieties about what might be around the corner for Daisy and the rest of our family.

What differs from our usual worries around Daisy’s health and the impact it has on our day to day lives, is that everyone around us is also gravely affected. What I’ve found interesting is that many of the difficulties that the spread of the virus has presented for others are similar experiences that we, as parents of a disabled child, have faced for years. Social isolation, cancelled plans, no holidays, heightened anxiety, sleepless nights; these are all experiences that have sadly become our normal.

In many ways, we are far better equipped to deal with this crisis than many of our ‘normal’ friends, as crisis mode is often our normal.

So how are we managing locked down with 3 children with completely different needs? The days are long and tiring and it’s a huge challenge to manage all of Daisy’s care without the support of her carer and the respite of weekdays at school.

We started this week with a plan of activities, which went out the window incredibly quickly. We have a 1 year old who shouts a lot and our other 5 year old has more energy than any person I have ever met, so it’s a big task to keep everyone occupied and entertained each day.

We have scrapped The Body Coach’s PE lesson for a daily disco and school work now only happens if the participants are eager and willing. My priority (other than just getting through each day) is making sure the girls feel safe and happy, and that has meant slowing down a bit and lowering our expectations. We’re likely to be stuck in our house for quite some time so I’m glad I went out and panic bought craft activities as they are proving more useful than stockpiles of loo roll.

by Emily Marsden, Mother to Daisy.

At home with Emilia

We took Emilia out of Nursery last week, 6 days before lockdown. I work part time at our company and my hours are flexible so we are very lucky that we don’t have to worry about childcare. Then the lockdown came and now we are all at home. 

I’m not going to lie, the thought of being at home 24 hours a day with Emilia for the foreseeable is exhausting. Emilia isn’t mobile or able to transition between movements so needs help to get about. She needs to be spoon fed and has trouble with controlling her breathing, which can bring all of our anxieties to the forefront.  With no respite it’s going to be really, really difficult. 

However, Emilia is high risk. If she gets this virus, there is a big chance there will be complications.  Her health is priority.  We will manage, we always have. 

We will take our daily walk and think up things to keep us all entertained. Trying to minimise Emilia’s screen time will be the biggest challenge and sometimes it is just easier to let her watch as much Ben and Holly or Peppa as she wants. This is our respite. 

However, I’m trying to think of this lockdown in another way. I’m hoping it will help us reconnect as a family without the pressures of work and the daily routine. 

I’m not the best at thinking up ways to entertain Emilia but now I really need to get my brain in gear. I have bought a big jar full of crafting bits and bobs, I’m turning our dining room table into a table tennis table as I know Emilia will love this, even if it’s just watching us play. We are clearing out the greenhouse to hopefully try and grow some fruit (Emilia loves strawberries). We are lucky enough to have a garden, so when the weather is good, we can be outside as much as possible.

So, yes the next few months will be challenging, but we will support each other in getting through it. Staying healthy is what’s important now.

by Stephanie Wood, Mother to Emilia