Growing Up: How we managed family life and epilepsy

Hi again! Today I wanted to share with you just a bit about how my family has managed my epilepsy. I'm really fortunate in that my experience of family and epilepsy has been a really positive one and I know that isn't always the case. With that in mind, I just wanted to give a disclaimer that I am only talking from my own personal experience. I am incredibly blessed that God gave me a really supportive family. Both my parents, my two older brothers and more extended family have been amazing in helping me accomplish anything I choose and encouraging me. This is probably largely due to my parents, deciding when I was diagnosed that my epilepsy would never hold us back from anything we wanted to do as a family and I think this decision shaped me significantly. Helped along by my mum's nursing background and sheer determination, there was always an answer for everything. Things might need to be adjusted along the way, but she can figure out a way to make just about anything safe for me to do despite my epilepsy. (This is helped by the fact that while I was growing up, I mainly had cluster pattern seizures. I'd be seizure-free for the majority of the time but cyclically I would have 24-48 hours of seizing.)

My parents and the way they managed day to day family life with a child with epilepsy is what I'm going to spend most of my time talking about, but one of the ways they managed was that they didn't do it alone. I want to spend some time talking about a few people and some of the ways they supported my parents looking after me as I was growing up. Starting with probably the two most important yet reluctant helpers. My brothers are legends and would regularly help look after me on my bad days. They patiently put up with me waking them up in the middle of the night seizing. They would have to run to make sure I wasn't injuring myself if I was left with them. When I was particularly bad, they didn't leave me and that would inevitably lead to kids' films or movie musicals. They probably had things they'd much rather be doing but they still did it. They've pulled me out of the water when I started having a seizure whilst swimming, and they've patiently stayed while I've screamed and cried at my absolute worst. But even doing that they didn't treat me differently. I was annoying, as a little sister should be! We drove our parents mad causing mayhem and arguing. Blaming each other when we got into trouble and having fun, causing chaos when given the opportunity. They helped look after me in so many ways that go beyond standard siblingship and yet they never made me feel more or less than their pest of a baby sister which is exactly what I was!

My Grandparents were also awesome support to my parents in looking after me. I was fortunate that throughout the majority of my childhood my Granny was retired and then my Grandad was semi-retired for a chunk of my teens as well. This meant that if I was having a bad day in terms of my seizures, and neither of my parents was able to take time off of work, at least one of them would do the trip to come and look after me. This was a three-hour round trip for them but they did it anyway. And sometimes they'd take me back and keep me for a few days or even a week! And even though I was feeling rubbish on those days, I still have really fond memories of some of those days; Like teaching my Granny how to bowl on a Nintendo Wii, sharing some of my favourite films with my Grandad, and being incredibly indignant when he jokingly referred to them as "drivel". I'm so grateful that they were willing to do all they did for me to help look after me when I was having a bad day.

My parents massively encouraged me to be a normal kid as much as possible. I was allowed to have swimming lessons and absolutely loved it! I just had to have one to one supervision in the water. I was allowed to have sleepovers at friend's houses, but I and parents had to be clued into what medication I needed and when. They really encouraged me to live my life as normally as possible but trying to balance that with keeping me safe. I don't remember life being complicated before I was about 6. Part of that is because I was oblivious, but also my mum worked from home. When my mum went back to work when I was having clusters of seizures life became a bit more of a juggling act. One of my parents would have to work from home and as I got older I started feeling more guilty and responsible for this. Despite reassurances from my parents, I felt like an inconvenience, particularly in secondary school. I started fearing and avoiding going to teachers or the school nurse until absolutely necessary because you mention the word "twitchy" (my word for myoclonic jerks) to them and they'll immediately be on the phone to my parents to come and pick me up, even if I didn't really need it. But my parents never treated me like the inconvenience I felt like. They didn't mind juggling work and minding me, no matter how hard. They didn't complain if I needed to wake them up at 3 am when I couldn't sleep because I was close to a seizure and distressed about it. Even staying up with me all night if I had a sleeping EEG (specific brain scan) the next day. They dealt with the side effects of medications, hospital stays, and helped me non judgementally when I was struggling with independence or not being able to take part in things because of my seizures. As a family, we sat down at a table to eat every evening. My parents gave me the ability to do the same and got me a chair with a back when I didn't feel safe on the stools we had. My mum didn't judge me when even as a young adult I couldn't feed myself because I was too twitchy to do it and was becoming distressed by it. They encouraged me to find ways to make myself feel as safe as possible when I was having a cluster. Things like staying on duvets on the floor so I can't fall and drinking from special cups.

My whole family has been a model of compassion for me throughout my life. They let me adventure, explore, and try to keep up with my brothers! (There was no way I could!) They let me try anyway and I will forever be grateful for the amount of freedom I was allowed whilst keeping me safe. I believe God gave me the family he did because it was the family I needed. He gave me a nurse mum who wouldn't panic when things went wrong with medication changes and who knew the people to go to when we couldn't get the help we needed. He gave me a dad who could sleep through just about anything so that he could stay in hospital with me and get some sleep. God has proved again and again his providence and sovereignty with the people he has placed in my life and the timing of it. 

Family life was never defined by my epilepsy. We dealt with it and enjoyed it despite it, and that's the way I loved it!