I have 17 years of experience as my son, Daniel, was found to have Spinal Muscular Atrophy (SMA) soon after he was born. The condition is genetic and rare and, at the time he was diagnosed, the prognosis was bleak because children who were diagnosed before their first birthday were considered unlikely to live past the age of two.
To say the diagnosis was a shock is an understatement. I was still a relatively young first-time mum without family support trying to figure out how to be a good parent and suddenly I was faced with a steep learning curve of understanding the condition and management of it, while dealing with the emotions of a very real prospect of losing our son to it.
Being the person I am, I was reading anything and everything about the condition, from personal stories to scientific and medical articles. Filling my head with details of neurology and survival of motor neuron (SMN) proteins, medical studies being conducted without success, and heart-breaking experiences of children’s lives being lost. I was looking after Daniel when he was awake and sitting in front of my computer looking for information about SMA when he was asleep.
I’m an analyst and a problem solver by nature, but the condition was not something I could resolve, so my head was on constant overdrive trying to reach a solution that was not in my gift to find.
I made the decision to return to work after the maternity leave because I had to. It was a necessity not only because of the financial reasons (of which there are many, increased by having a child with special needs) but because I had to be in an environment where I was able to control the issues I was dealing with. This gave me time to focus on ordinary tasks I could manage; it gave me a space where I was just Susanna working as part of a team and my mind was not sinking into despair with no way out.
However, managing work at the same time as meeting your child’s medical needs outside of it is not easy. Before my working day started, I would be up hours before helping Daniel get set for the day ahead. For an ordinary parent of a 17-year-old, this would mean prodding them out of the bed. But for us, this involves doing everything for him, starting from disconnecting him from his overnight ventilator and doing his chest physio routine, to hoisting him into his chair and giving him his medication and morning feed via his gastrostomy.
In addition to attending work meetings, there’s a long list of medical appointments, social care and education meetings. And when I’m not typing work emails during working hours, I’d be filling in applications and education, health and care plan (EHCP) forms and fighting plans to close a Children’s Specialist Medical centre that saved Daniel’s life years before.
The lack of sleep has been chronic – as Daniel is not able to move, he needs to be repositioned by an adult overnight and this can happen anywhere between four and 12 times a night. Luckily, we’ve been allocated a team of two carers who help, but if Daniel has a mild cold we need to step in as the repositioning is accompanied by the treatment of nebulisers and intensive chest physio that we need to do. Any chest infection will cause him to be in a high-dependency unit in a hospital and we cannot leave him because we know him and his condition. We know when his heart rate is too high or his O2 is too low and when and how to do the treatments he needs.
SMA is a condition that only impacts the neurons and muscles in the body. In his mind, Daniel is a regular teenager with dreams and hopes for his future that has varied from being a firefighter to going to university and becoming an accountant or a stockbroker. As he has got older, he has also learned about his condition and is realistic about what he may be facing. He will have to have a conversation with his medical team about what he wants to happen if he stopped breathing and our recent lively Sunday lunch conversation turned sombre when he laconically commented on the fact that statistically he would be dead before anyone else.
I know it’s a fact but hearing him say it was difficult to handle.
In addition to dealing with the emotions that go with looking after someone who is severely disabled, I’m consumed by the constant feeling of not being or doing enough. Be it at home or at work, with my children, my friends or with my colleagues. And when you in yourself feel that you’re not enough, it’s very easy to believe that others will hold the same point of view.
Although being my son’s carer is the most rewarding role I’ve ever had, it’s demanding, both physically and mentally. It takes much of the time that I have, and large portions of the holidays I’ve had during the years have been spent in hospitals or on other appointments that we must attend.
The recent introduction of the Carer’s Policy at RSA offers relief for colleagues like me, as it guards a proportion of our holiday allocation for what it’s meant for: time to be with the family. But, more than this, for me, as a working carer, it means that my situation is being recognised and that the company I work for is doing something for us to make it a little bit better and a little bit easier. And I truly value RSA for that.