Written by Rachael Hoskin

I was 34 years old when I suffered a left sided ischemic cerebellar stroke. Quite fortuitously, I had my stroke sitting next to my youngest child’s bed in the children’s hospital. Our son, two years old at the time, has a rare neurological condition which meant he has spent a lot of time in hospital. It was during one of his long inpatient stints where I suddenly lost all feeling in the right side of my body. Miraculously, a nurse entered the room at that very moment and recognised my stroke signs. Within minutes I was whisked off by ambulance to the adjacent hospital where I was later diagnosed with stroke caused by bilateral vertebral artery dissection (tearing of both the arteries at the back of my neck). The likely cause of my artery dissection being injury to my neck during the weeks I had spent sleeping uncomfortably next to my son in hospital, refusing to go home, refusing to leave him. Which, ironically, put me in a position where I was hospitalised and forced to leave him, as well as my other two children.

While my stroke was physically small, for my family it was devastating. I went from being independent, to needing to rely on others, struggling with my mobility, and at times being unable to look after my own children - two of whom have special needs. I spent around six months on crutches and had trouble using my right hand. I suffered crippling fatigue, unrelenting migraines and vertigo as well as some cognitive deficits. Suddenly I couldn’t drive, walk far, or look after my family the way I did before my stroke. In a split second I went from the carer to the one who needed to be cared for and it was a huge adjustment to make.

But it wasn’t just the physical deficits I struggled with. Like many survivors, I felt a whole spectrum of emotions following my stroke. Whilst I felt immense gratitude for being alive, and for not being left with more severe deficits, I also felt tremendous guilt. Guilt that I couldn’t be there for my children the way I used to be. Guilt for spending a lot of time away from my children. I missed school events, activities and the in’s and out’s of daily life. FaceTime and phone calls was no substitute for real life hugs. My children missed me and I missed them terribly. But when I did come home I felt overwhelmed with the noise and chaos of family life. I experienced depression, isolation and loneliness, I didn’t know anyone my age who had suffered a stroke. I dealt with trauma and PTSD. I felt like a burden and I became frustrated and angry with my body for letting me and my family down. I felt grief for the person I used to be.

But one of the hardest things I experienced was trying to balance my recovery needs with the needs of my young children - especially considering my son’s ongoing medical issues, and my daughters Autism. My instinct as a mother was to put my children first, but I quickly learned that when I pushed myself too hard I would often set my recovery back. My stroke recovery became a precarious balancing act where we often had to make almost impossible decisions. Suddenly I as in a position where I needed to heavily consider my own health and wellbeing as well as my children’s physical, emotion and social needs. Sometimes my needs and my children’s needs were in direct competition. Who do we prioritise? Which appointment is more important? When do I push myself and when do I take a step back? Often there was no easy answer.

One of the hardest decisions we had to make involved involved my youngest son’s medical care. A few months after my stroke he was scheduled to have a major surgery done. The surgery would massively improve his quality of life, and we had been waiting for some time. But, it would also require time in hospital and recovery. At that point I was still on crutches and suffering severe fatigue and migraines. My husband and I made the agonising decision to delay our son’s surgery for a few months, as we knew it would be incredibly difficult to support his post surgery recovery at that point in time. I remember feeling so much guilt knowing that my son would have to wait longer for relief, and it felt wrong as a parent to be putting myself first. But looking back I see that this was absolutely the right decision. When my son did finally have his surgery he suffered serious complications and spent extra time in hospital. At that point I was in a much better place physically to care for him when he needed it.

Finding the balance between my own recovery needs and the needs of my children is still something I struggle with everyday. But in the two years since my stroke taught I have learned four valuable lessons.

Ask for and accept help when its offered. Like many, historically I would do anything to avoid asking for help, even under extreme circumstances. But my stroke recovery taught me that sometimes I needed to put my pride aside and ask for and accept help for the sake of my family. I found that often people wanted to help but didn’t know how. I struggled to respond when people asked, in general terms, how they could help because I wasn’t sure what they would be willing to help with. I didn’t want to be a burden or put people in a difficult position. Instead I found it best to be specific when asking for help, for example; “Would you able to drive me to my neurology appointment on Thursday”. Likewise, when people offered a specific form of assistance I would take them up on it, without guilt, because people will not offer what they aren’t genuinely wiling to do. For example, I had a neighbour offer to do my weeding, and a friend offer to make my family a meal. Once I had support with the practical and logistical issues following stroke I could focus more on my children and on my recovery.

Comparisons aren’t helpful. Although it was hard (and still something I struggle with every day!) I learned that there was no point in comparing myself to other parents, or even to my past self. Dwelling on what I couldn’t currently do with my children just led to guilt and frustration. Instead I try to focus on the things I CAN do. I’m honest with my children in regards to my current physical and cognitive capabilities and together we adjust my parenting accordingly. For example, although I couldn’t do the school run, or walk them to the park I could still read stories, watch movies and do jigsaws with my children. We could sit together and talk, and I could watch them play outside. I could still spend quality time with my kids, it just looked a little different than it used to.

Recovery is my responsibility as a parent. Importantly, I realised that whilst I have a responsibility as a parent for my children, I also have a responsibility to myself so I can be there for my children, in the best capacity, for many years to come. Sometimes I pushed myself too hard too soon, only to end up bedridden again with fatigue and migraines, or back on crutches, which negatively impacted the whole family. With every step backwards I felt more frustrated, more guilty, and more depressed, and it was hard on my children. Stroke recovery is a marathon not a sprint, and my recovery is a long term investment for our family. In order to give myself the best chance of recovery sometimes I had to say no to the little things, and take small amounts of time to rest, so I could be there for the bigger things. I also realised that by looking my own needs I was modelling to my children the importance of self care as a necessary and important life skill to my children. I was teaching them that it was ok to ask for help, to say no, and to rest when needed.

‍Children are resilient. Above all, I learned that despite everything, my children were ok. In the weeks and months after my stroke, my family were in an almost impossible situation where I was in one hospital, my son was in another, and we had two other children at home. My husband couldn’t afford to take much time off work which meant our youngest spent most of his days alone in hospital. I worried and fretted from my own hospital bed across the road. Before my stroke I couldn’t have contemplated leaving a two year old in hospital alone - I didn’t even like leaving him for the 20 minutes it took to grab a coffee. But when we had no other option I realised he was ok. We are ever grateful for the nurses who did an amazing job of looking after my son and keeping him entertained, and to our family who visited him whenever they could. My children readily accepted and adjusted to our family situation, as children do, and I realised that they were going to be ok.

Finding the balance between parenting and stroke recovery is still something I personally muddle through each day, as a family, trying to find that elusive balance. Every situation is different and I believe there is no right or wrong way to try and navigate stroke recovery as a parent.

But whenever I feel guilty for prioritising my own needs I remember the day I had my stroke. I remember the exhaustion I felt. The vicious headache. How I hadn’t slept properly or left my child’s side in hospital for weeks. I remember how I had chronically neglected my own basic needs - eating properly, resting, showering - to be there 100% for my child, only to end up in a position where I could no longer physically care for my children for an extended period of time. I often wonder whether I would have suffered an artery dissection and stroke had I looked after my own wellbeing and accepted help a little more during that time period. While I will never know the answer to that question, my stroke has taught me how important it is to look after ourselves as parents - for the sake of our children.