Parenting children when you’re ill as many know is a nightmare but parenting children when you have a lifelong condition or disability requires a whole new outlook that sadly, in this country, is vastly misunderstood, irrationally judged and comes under prejudicial attack frequently. Despite the support systems that are available for those with a disability, the scrutiny of uninformed bystanders and critics (often those without any medical background) can often make the ride rougher than it needs to be. But critically, over all the odds, parenting with a disability does not stop the parent from being a capable, loving parent and there are many positive aspects that arise as a result.
I was diagnosed with autonomic dysfunction with postural orthostatic tachycardia syndrome and hemiplegic migraine in 2008. In a nutshell this is what we refer to as my “dizzy lizzy” syndrome meaning I can faint frequently, am racked with fatigue among other complications and need to endure a pretty sedentary life to avoid symptoms exacerbating. Within the first year of being diagnosed and coming to terms with this hidden disability my husband asked for a divorce and within that short time frame I was left with four children to bring up myself. In the first year alone, they had to get through not only the devastating reality of their parents separating but also the ordeal of seeing their mother in critical care units, some miles away from where we lived, and a massive change in lifestyle at home. I also had to surrender my driving licence for the first two years which led to a move from the family home in the country to a smaller rented house in the town. The children couldn’t do many of the things they had wanted to do because of my mobility issues and the lack of good public transport locally and the economic deprivation that came about on the back of the divorce and disability. I couldn’t get done many of the jobs at home that used to be done without fuss or bother let alone work and for the first considerable number of months I received no support for the children financially from their father. So basically there was a monumental shift in the way I had always parented the children in terms of getting things done, mobilisation, available income and overall inclusiveness and involvement generally. My disability, albeit a hidden one, came at a huge cost – it cost me my marriage, my home and my income but it wasn’t all about costs.
However, it also created in me (and the children) a colossal change in the way we viewed the world. Instead of focussing on what I couldn’t now do, I focussed on what each us could do and in particular helped the children to become more self-aware and essentially work to each of their strengths and intrinsic abilities and play to them. The children at the time were 9, 11, 13 and 14 years of age; the oldest of which was starting her all-important GCSE courses. It could well have been a make or break scenario but the adjustment in the way we operated and saw the world effectively changed the tide. We literally hit our own R>E>S>E>T button and the pathway to an effective future for the children presented itself despite the continuation of my own personal problems. The children became more resourceful and open minded. None of us liked the intrusion by several authorities into our home in terms of financial assessment and assistance and general checks, and we were all made abundantly aware of the stigma that surrounded the position we were in. At school my daughter was bullied by another girl for the fact her mother was on disability benefits and ridiculed by a music teacher when she herself became ill with another condition which affected her ability to play her flute with the aforesaid teacher somehow linking her problems to mine! However, despite this, the new perceptive view of the world and signing up to a life that allowed for other’s opinions without necessarily feeling obliged to subscribe to them opened the doorway to a deeper understanding of what was important to each of us, collectively and individually. It also promoted the values of respect and responsibility with compassion and love which are the cornerstones now of our family mantra. From this the children went on to work together as a team, to nurture each other and then to achieve higher grades at school and grab more opportunities and still do today.
I may still be confined by my condition and still subjected to the world of prejudice, bias and discrimination but I have come to realize this is a problem for the world, and individuals, to sort and not one I can alter single-handedly . However, I know now that I can play to my strengths in terms of parenting the children to help them to the best of my ability. The children, consequently, have benefited (and continue to do so) from the adversities we have faced together as a result of my condition. Yes, it has been life changing but to a greater extent it has added a dimension to their lives that has given each of us new perspectives, new approaches and a new resolve. For disability has strangely enough enabled each of us inherently and as a family despite the disabling effects physically.