Kate’s story: Parenting in lockdown
3 April 2020
Aside from my general worries about the state of the world right now, as a parent of a child living with a spinal cord injury (and also one other without), I am experiencing a huge range of emotions about the Coronavirus pandemic, many negative, but also some surprisingly positive.
On the one hand, of course, I am on extra high alert with regards to my son’s, health. He has an incomplete T12 level injury, so thankfully his lung and cardiovascular function are very good. The virus seems to be sparing the younger population, but I still worry about anything which might make him more vulnerable to this unknown disease. In his case there is also the possibility that he has an undiagnosed immune deficiency. This adds another layer of apprehension about exposing him to infection. Managing anxiety related to his health is something that I have struggled with, and even more so right now.
I’m worried about him missing his physiotherapy. To keep my son in the best shape possible, he undertakes physiotherapy at school and at a physiotherapy centre too, but now he is missing both. We’re lucky we have some equipment at home, but he is still missing treatments that I can’t help him with. As we have no idea when we will be able to return to the centre the burden of care falls on me. That said, he’s certainly enjoying the respite!
One thing that has helped me though is being introduced to a parents Facebook group who are also doing home physio because of the virus. It’s a really supportive environment as we are all in the same boat wondering about whether we are doing more harm than good! It looks like we may also be able to start some virtual services through my son’s therapy centre, which would be most welcome.
On the whole I feel largely very good about the isolation (although we are only two weeks in!) I’m encouraged by the acts of kindness and community spirit we are seeing, particularly in relation to ‘vulnerable’ groups. I do think that parents of children with spinal cord injuries, or any chronic health condition for that matter, are perhaps more capable of dealing with this pandemic. This could be because we have already faced extreme adversity when it comes to health and social isolation. We have had to learn how to deal with what we take for granted suddenly being taken away. We have had to think about the health and safety of our children every day, deal with shortages of appropriate healthcare for them, and have experienced both social and physical isolation as a result of our children’s injuries.
Having the children at home has certainly been a juggling act, particularly as I am working from home, but it has also been really fun. It’s lovely spending more time with the boys, something we always hold extra dear since we nearly lost our son 5 years ago due to the illness that caused his spinal cord injury. We still manage to work therapy into the new routine, and his school work has been a welcome time-occupier!
We are fortunate that our son is becoming increasingly independent. We’ve been using this time as an opportunity to encourage him (and his brother) to take on more self-care tasks. They are both helping around the house more and becoming more self-sufficient, which I see as empowering them both.
I have also been trying to stay social via technology. Like many others this has helped me immensely. Video chatting our extended family, and my son’s therapists has been great. Our son is also calling his friends. I would really encourage parents to connect and share more with their close family and friend as well as the larger spinal cord injury community right now. Knowing we are all out there and having similar challenges, worries – and solutions — can be so helpful and rewarding.
Finally, looking after myself often falls to the bottom of the list. However, I am making sure to take my fair share of baths and I am enjoying getting back into the garden. These are my go-to stress busters. I must admit I am enjoying taking a break from the non-stop parade of school runs, doctor’s appointments, therapy, playdates, sports and clubs. While they are equally missed, what we have learned from past trials and from this new one is to always look on the bright side and enjoy what we have right now — each other.