Managing parenting responsibilities after stroke
Strokes are life-changing events. In my situation, my son (Oscar) was six-month-old after my stroke happened, consequently can't compare what having a stroke would be if you weren't a parent. But for me, having a family gave goals, motivation and direction for rehab.
Oscar cannot remember my stroke - fortunately - but he is four years old now, and he is asking lot of questions about my health and trying to process why I am different to other dads.
Dad... why your hand is not working?'
'Dad... why are you can't run fast?'
'Dad... why are you confusing shoes and socks'?'
'Dad... why are others dad's at work and you are not? '
This questions are so innocent and - sometimes beautiful - and not all questions are negative. Often he boasts about how lucky he is to have a dad who is around a lot.
And, I say 'fortunately' because other stroke survivor's kids - are possibly toddlers or adolescent-age and they witnessed the changes - eg. memory, physical, communication and personality changes etc. With Oscar being so young, the 'Dad' he knows now, post-stroke, is 'normal'... it's the only version of me that he's ever known. I know that Oscar is very lucky to even have a father, but I am conscious of the impact of me having had a stroke on him, especially as he grows up. For example with his ongoing education, my frustration is not able to help to with homework, Maths or English problems as he gets older. My stroke was not affected by my intellect, but my communication is definitely affecting by aphasia, and I may not be able to be as helpful with homework. But I am sure I will find ways to help him.
In the hospital and throughout my rehab, my therapists were amazing and they understood that my goals were mainly centered around trying to be more independent with Oscar and developing and improving my relationship with him. In speech therapy, I nursery rhymes so I could practice with Oscar. My therapists also spent a long time picking out the best books for me to read out loud with Oscar to ensure they were achievable and still challenging me to improve and learn whilst also being age-appropriate.
My Occupational Therapists spent many hours with me teaching me how to prepare foods that Oscar liked, getting him in and out of his cot, high chair and pram, as well as how to pick him up off the floor with one hand. My physiotherapists helped me to walk unaided so I had a free hand to play with Oscar. They also taught me how to get on the floor (and off it) so that I could comfortably play with him on his level.
Rehab therefore, was not only about me improving my relationship with Oscar - and improving my physical and mental abilities (eg speaking, walking, driving etc) - it was also crucial in my overall relationship with my wife, as I could help care for Oscar independently, freeing up her time to do other things.
Before my stroke, I was not affected by fatigue. I was working full time with the computers (desk job) and my spare time - aside parenting responsibilities - I was watching movies, reading, TV shows, concerts, sports etc - normal stuff. But my post-stroke life is different now. My fatigue is improving, but I suffer from tiredness. I am still reading books, watching sporting events, TV shows and movies, but far less frequently. For example, I watched the Star Wars movie last year (in the cinema). I loved it, but I was very tired for two days after.
After taking the time to read books, talk to therapists, talking to school teachers and information available online, has helped me to be more aware and understanding of the brain and 'critical period' of development of the brain and plasticity. Hence, my approach to parenting is different from my pre-stroke years - I think - and my experiences having survived a stroke, I have a little bit of insight about development of kids' brains and fatigue. Eg. Oscar is more tired after watching TV and I also more tired after watching TV, so we try limit screen time as much as possible.
Throughout my recovery process the most important thing was understanding my limitations as it not only put me at risk - and also my son. As much as I wanted more than anything to be completely independent with Oscar, I always needed to be realistic about whether a situation was safe or not. For example, crossing roads, going swimming, going camping, going to the footy, driving at night etc.
This forced me to really break down my overall goals and focus on achieving the smaller ones first. Loz has never hesitated in supporting my independence, but has also never backed away from telling me that there was something that I couldn't do. Parenting is a partnership, and whilst it hurt to hear her say she didn't think I could do something, she was always my biggest advocate and supporter in finding a way to make sure I could learn to do it.
It was been challenging that I couldn't do everything that other fathers could do with their kids, but I have never felt I have missed out on doing things with Oscar. Loz and I troubleshoot ways to make sure I can still participate. Sometimes Loz would need to come with me, or sometimes grandparents and other family members would come along. We often paired up activities with other dads and their kids so they could assist when necessary. I really am lucky to have such an awesome network of people I can count on who are always willing to help me out.
It is difficult to quantify my approach to parenting responsibilities, because four years ago, I was a novice (eg Oscar was a baby) and I am still learning about parenting. But the second baby - due next month!! - I hopefully will be more prepared - in saying that, I will be lot of unknown for my capabilities with working one hand and my disability. I am not worried - on the contrary - I am very excited...
After my stroke, I have lot of perspective. I am still keen to learn and I am still motivated, this is where my family and having a family - in general - has been the biggest positive in assisting me in getting to where I am today. Regardless of having had a stroke, my priority hasn't changed: I want to be a good father.
I also feel that after having a stroke, and missing out on so much time with Oscar has made me cherish the time I have with him now. While I was in hospital I missed out on a lot of things that I may not have valued pre-stroke. Every bath time, story time, early wake up is something I thank god every day I can be there to enjoy with him, and with my family.
It is cliched comment, but Professor Peter Hwang (with help from other doctors) saved my life in the Alfred Hospital - literally. But Oscar also saved my life too. He is my motivation and inspiration for getting better, and I am forever grateful for him.