Dan is Dad to Elisa who died in January 2023. In this special blog he shares what life is like as a parent to a disabled child, and what Father’s Day will be like this year without his daughter.
I was asked to write this blog post and talk a little about being a father to a medically complex disabled child. With Father’s Day coming up I thought a lot about previous years and what we had done as a family on Father’s Day.
For Father’s Day in 2022, Elisa was in hospital, and I was with her. So that day I had toast and jam for breakfast, did morning handover with the day staff and then doctor’s rounds. The year before, was pretty much the same. And also, the year before that.
That is part of being a father to a medically complex disabled child. And probably not the worst part.
There are traditional types of fatherly roles, roles that we would have seen our own fathers perform. With Father’s Day we celebrate these roles. What makes being the father to a disabled child different? Beyond all the traditional values of love, compassion, protection and sacrifice, is the complexity of what we must do to achieve these seemingly simple things. We manage day to day medications, feeds, appointments, and emergencies that come up. All these extended roles must be completed in addition to being a father. They can of course be completed with love and tenderness, though often they are cold and medical.
Trying to balance this with work, relationships and other children can be challenging. As father’s we are seen as the traditional provider for the family, working full time and having only the weekends for family time. But with a medically complex child fulfilling that role becomes harder and harder and can be very destructive to both yourself and also your relationships. For me it was a struggle being able to perform my job effectively and not feel guilt for letting down work colleagues if I wasn’t doing my best work. The same was true of my relationship with my wife and our other daughter. I couldn’t see how I could do all these things and still look after myself. So I left my job as an IT Analyst and with that I became a different type of father. A stay-at-home father and Elisa’s primary carer.
Within weeks of doing this Elisa became ill and was hospitalised for three months. I was there for every moment, through PICU, HDU and transition to home. I can’t imagine being that involved if I had still been working full time.
This wasn’t a one-off: Christmas 2021 we exchanged presents in the car park beneath Ronald MacDonald House at Southampton Hospital, Elisa was in hospital and due to Covid restrictions visiting on the wards was limited. We had to adapt. We’ve had birthdays nearly always at home, small family gatherings, with everyone knowing that everything could be cancelled at the last minute depending on Elisa’s needs.
I spent one birthday on an ambulance being transferred from Poole Hospital to Southampton Hospital. We adjusted to this life and find that now it is commonplace for us to spend more time at home and miss events and parties. We never give any firm commitments to invitations and those close to us understand why. This wasn’t always the way. When Elisa was a toddler, people would often be frustrated by us cancelling arrangements at the last minute. It took a while for us all to adjust to this way of life.
Being this kind of father was the role I felt better suited to. I found myself more comfortable with being a father to a disabled child. And I found it helped me become a better parent to my youngest daughter. If anyone had the chance to watch ‘Best Interests’ on BBC1 you see a little of the struggle of being a working father, dealing with big emotional moments, weighty decisions and then the feeling of being absent when it matters.
On 4 January this year Elisa died, peacefully, at Naomi House Hospice and this year Father’s Day will again be different. It will be the first time in three years that I have been at home for Father’s Day. And it will be the first time in 10 years that I haven’t celebrated it with Elisa.