A blog by Duchenne Dad, Darren
Well, CV19 is here, so what do we do about it, how will we fill our time, how do we alleviate the boredom of self isolation?
It’s a great question, a question we have seen posted on all media sites and even a quote we have said to ourselves, however, when we said it to ourselves, we instantly found out 101 things we could do to fill our time, maybe not productively, but certainly thing that would pass time.
It has to be said that the internet, phones, tablets computers, certainly will fill most of the voids as they tend to in most family’s households, I guess we will all catch up on the box set that keeps getting put off, or the film you just never have time to watch because we are all so busy.
Spending time
One thing CV19 has brought is time, time to stop and think, time to share thoughts with each other, time to listen, I’m mean really listen, instead of partial listening as you are busy doing other things as well as trying to listen. CV19 has brought conversation, debate and the chance to see others’ perspectives, this has ranged from the CV19 itself or how others are coping to how we are best placed to cope.
The media is certainly whipping up a frenzy, not all of it good, but the heartfelt stories from around the globe bring comfort to worrying times.
Tackling the practicalities
Our primary concerns are with James and his mum, both who fall in the vulnerable category. Keeping them safe is my first priority, distance from others, cleanliness, of ourselves, our surroundings. The supply of essential items is another priority, food in particular, seeing the shops looking empty is alarming but I find if I’m up early enough we can still, with the help of supermarkets we get enough supplies to last a few days until the next shopping journey.
Although even this is becoming more worrying, the desperation on people’s faces tell it all, also regular medicines that suddenly have become short supply, give another shot of insecurity, although to date we have all that we need, fingers crossed this remains the same.
I’m sure like us your family have uncertainty in many different areas, many questions never really get answered, but I think to remain informed is paramount to remaining calm and decisive in times of doubt, reading the updates on the Duchenne websites are useful, listening to the news (at least once a day) to get the latest updates, at least give you the latest position and how you can adjust to suit everyone in your household.
Thinking differently
We have taken a calm and pragmatic approach to CV19, we are going to take the time given to all of us to make the best of the situation, spend time doing all the things we never got to do before, because we were too busy. We now play games more, we talk more, we go out to the park more, we eat together more, we exercise James more, in fact when I think about all of the positives CV19 gives us, it’s certainly outweighs the negatives. I don’t mean that flippantly, I just mean the negatives, are what they are, so if we work and think around the negatives as a family or community, we are left with the positives that brings.
Think positively, think, “I can” not “I can’t” or I don’t know how!! As a family we can work anything out. CV19 will be a thing of the past, our family will always talk about this in years to come, we are determined to make our experience and history a positive one, survival stories are some of the best stories, make sure your family like ours makes this time a positive time together.
Big love to you and yours, from us and ours
Further information
- Write a blog and send it to lynnette@actionduchenne.org to share your story
- COVID-19 advice for the Duchenne community
- How you can help
- Resilience and coping presentation
- Take part in virtual event
Supporting families – Lynnette’s perspective
