“We can’t stay hidden away forever, there will be tough decisions… but for now we will keep on going and hope things start improving soon.”
Donna Brown tells her story about the highs and lows of life in ‘lockdown’ with her son Reece (6) with CLN2.
It’s been the best of times it’s been the worst of times…..
Schools closed their doors on 18th March, and on 20th March we said goodbye to my sister (Reece’s auntie) who sadly passed away after a short illness, not Covid related. We are grateful that Margaret’s funeral was the last big one in Inverness before restrictions were put in place so we were able to have a proper send off and Margaret would have loved that. A week later my niece gave birth to a beautiful girl Rose who we have yet to meet.
Life in lockdown
For the most part we have been making the absolute best of this time and enjoying not having appointments, meetings and outside interference. Win the past we have had quite a strained relationship with many involved in Reece’s care so not having to deal with them has been a breath of fresh air and life has been much more chilled out.
We have filled Reece’s time with activities like baking, arts and crafts, lots of music and singing, playing with giant bubbles and being out in the garden.
Reece’s school, St Clements, have been incredible. They sent home some bits from school that Reece loves. They keep in contact with phone calls and texts to check how things are going. They even sent Reece a beautiful handmade card with a lovely poem inside. We did a Zoom session and although Reece seemed quite bewildered by it all it was so nice for Reece to hear his teacher Sandy’s voice. Reece has a wonderful bond with all the PSAs, in particular Flora, and when Reece heard her voice he got so excited.
We have also done Zoom music sessions with CHAS Rachel House, who have started a virtual hospice for families who are unable to attend. It’s been so good to keep in touch with them as we are missing our visits.
Our hospital appointments have been done through video calls which are fantastic and so much easier than trailing all the way to the hospital so I think we will see some positive changes as to how appointments are done in future. Obviously there will be times when you will need to be seen in person, but I’m sure many appointments will be done via video call.
Impacting the whole family
We have been very lucky and have had no difficulty getting online shopping slots. It’s the plus side to Reece being up through the night – 3am is the perfect time to do your shopping. And Reece’s big sister Courtney has been a star picking up anything we have needed and doing doorstep drops.
Reece’s sisters Courtney and Alex are finding it difficult. Alex has been home all throughout this and has found it difficult when Reece has been having bad days, and there have been a few. Courtney is missing spending time with us all. She’s desperate for some cuddles with Reece.
Unclear way ahead
Now lockdown restrictions are being lifted, and we don’t really know what’s happening with the shielding groups, and we are getting slightly fed up. We are missing family and friends. Reece is desperately missing school and respite. We hear so much about mental health but physically it’s demanding caring for Reece and not having a break. I am lucky that Alex is a massive help and incredible with Reece. We have no idea when respite will start again.
We cannot stay hidden away forever as this virus isn’t going anywhere. There will be tough decisions to be made such as whether Reece goes back to school or not, but for now we will just keep on going and hope that things start improving soon.
We are so grateful to those who have checked in on us during this strange time. We are thankful that we have so far made it through, healthy. We are so looking forward to being able to get out and meet up with our loved ones and have some cuddles with our beautiful baby Rose.
And for Reece to be able to get back to all things that he enjoys.