When the Covid 19 crisis began, I, along with other Camp Simcha colleagues was working flat out to support families with seriously ill children. In my role running therapeutic art sessions for ill children and their siblings, I was sending out arts and crafts packs so that children could still do their arts at home and have virtual sessions with me to keep them feeling connected and entertained at such a difficult time. With many of the families we support having very vulnerable children, Coronavirus has been terrifying and isolating. Then I became one of those terrified and isolated family members needing support.
My son suffers with ulcerative colitis in a particularly severe form, which can be life-threatening if not managed. During a flare-up he needs morphine for the pain and 24-hour care with heavy-duty drugs to manage the condition. A few weeks into lockdown he had a very bad flare up.
Things deteriorated to the point where he had to be admitted into hospital, where he was kept in isolation for nearly four weeks and treated with the same kinds of drugs used for leukaemia and organ transplants.
I was the only person allowed to be in the hospital with him and, as a single mum, there was no respite. This was where Camp Simcha came in.
The hospital transports they provided helped me to quickly go back and forth, and the food they sent in was a lifesaver. For my son it was the books and games that Camp Simcha provided which helped keep his spirits up. When no-one can come to visit the days seem endless but the excitement of going online and choosing some books and then the lift each time one arrived was a great distraction from the pain and everything he was going through. When we got home Camp Simcha sent in meals for me, so all I had to think about was his specific food requirements and his needs – which obviously was my priority.
Thankfully my son’s condition has stabilised now, but he is still in pain and on drugs which suppress his immune system while we wait to try a new treatment. This means he has to be very careful so we are shielding and that has felt very isolating for both of us. Throughout all of it, Camp Simcha has sent in gifts and treats to keep him entertained and to make us feel cared for… baking kits, a pampering box, a picnic pack … it may not sound like much but when you cannot even leave your home to get a coffee, it means a lot. It makes you feel lifted and supported and, most importantly, it makes you feel like you are not alone.
I have now been on both sides of Camp Simcha’s support – as a provider and then someone needing their help. Until you have a sick child yourself you do not understand the enormity of how it feels and you don’t realise the psychological impact of that illness on your child.
Our friends have been great but with Camp Simcha it is different. You know that you can always call on them and whatever the problem they will find a way to help.