We are Holly and Kate – two mummies who have a daughter called Scout. We both have health problems that make parenting harder than normal. We all know parenting is tough, but when you throw chronic pain and chronic illness into the mix then it means life is haaaaaard with a little baby. Even a baby as super chill as Scout.
So what’s up with you?
Kate: I have a condition called Elhers Danlos Syndrome which is kind of like arthritis. It means that I have chronic pain in almost all my joints so I’m in pain all the time, but when I do too much of something (like sitting, standing, walking, holding things) then the pain gets really bad. It means I have to use a wheelchair when I’m doing any walking for longer than 5 minutes.
This impacts on my parenting because it means I have real problems holding Scout, carrying her anywhere, soothing her by walking around with her… or anything like that! It’s really hard but this is one of the reasons for starting the blog, to talk about these problems and see if anyone has any good suggestions for me!
Holly: When I was 19 I was diagnosed with end-stage kidney failure (I had been ill for a while before then but no one picked up on it for a long time until I eventually got so ill I ended up in Intensive Care while on holiday in America). I was immediately put on dialysis and put on the waiting list for a kidney transplant. I waited five long years until a friend of mine miraculously turned out to be a match (none of my family were) and I have now had Kasper, my reliable little kidney, for eight years. I am generally well but I have to take tablets every day that suppress my immune system so I get ill very easily and it also mean I get tired a lot more than ‘normal’ people do. I also am a regular at my hospital as they like to keep their eyes on Kasper to make sure he is doing his job properly.
Do you guys work?
Yes we do! We are both television producers and Holly is a very talented photographer too (it’s true, despite how biased I am). We run a production company (markthreemedia.com) which has a big focus on disability and disability issues. I’m working as much as I can at the moment (this is Kate by the way) but also balancing wanting to spend time with Scout and Holly and not making myself poorly by doing too much. It’s a delicate balance! Holly is generally on maternity leave but she likes to keep her nose in the business stuff too. Plus when she gets interesting jobs she will do them.
And Scout? At the time of writing Scout loves swimming, sitting up and playing, pears, bath time, the Okey Cokey, standing up, watching big kids and the swings.