Being a mum of two disabled children
by Daisy’s Mum, Young Healthwatch Volunteer
Being a mum of not just one but two disabled children is not without its challenges. Constant medical appointments, hospital trips, ordering of medications, the endless list goes on and on. When my youngest Molly was born with a syndrome called Crouzon to say I was shocked was an understatement. Little did I know there were major head surgeries ahead where I nearly lost her, a tracheostomy to help her breathe, more major head surgeries, ICP monitoring, shunt inserted into her brain to drain excess fluid, amongst many other procedures, scans and operations. I chose back then not to fall to bits sobbing as I knew that wouldn’t change a thing but it would harm my mental health a lot.
So I chose to investigate everything arming myself with the medical terminology and as much information I can to aid my daughters ongoing well being. I can’t deny there has been a lot of very worrying periods but throughout it all I’ve told myself I just have to get on with it. It’s one of the things I gifted my children the ability to take what’s happened to them and “just get on with it”.
I got Molly through a lot of her major head surgeries, when my middle daughter Daisy was diagnosed with epilepsy. 2 years on my marriage broke down and I found myself the single parent of 2 disabled children. This was initially tough, I didn’t really believe I could do it, but I reminded myself of my own mantra of just get on with it, which I did.
Daisy’s epilepsy soon took over as being more intense as Molly’s operations and interventions slowed down. Molly will need further surgeries at some point, but is currently doing okay. Daisy’s seizures have got worse where she’s having up to 60 different seizures a day. Her condition is very hard to manage but she’s studying for her A levels and getting on with it as I taught her to do.
I can’t deny some days I’d love to run away, but my girls are a gift and nothing’s easy in life, so I treasure them and I believe I have them because they have me to fight for them and help them through all their adversities that their conditions throw at them. I’m so proud of them and love them both with all my heart. They are two very special girls and I’m proud to be their mum.