Two and half years ago I left the profession I spent years studying and training for, and the career I had built over the last two decades. When as a heavily pregnant woman I waddled down the stairs from my office, I thought I’d be back at my day job in six months or so, hopefully finding a happy balance between being a new mum and a commercial dispute resolution lawyer. I knew it would be challenging, but nothing prepared me for what was about to happen.
When my daughter Freya was born, it became more or less immediately clear that she was not going to be a textbook baby. First of all, she was born without a pulse. Secondly, her jaw was incredibly recessed, hardly visible at all. She came around after four rounds of chest compressions and was whisked away to NICU—and I knew our lives would never be the same again.
Being a Caregiver
Fast forward to present and I sit on my bed typing, whilst Freya sleeps next door with a pediatric nurse looking after her. She has a tracheostomy and uses a ventilator overnight. She is fed through a little plastic tube in her tummy and bears scars around her jaw line from numerous operations she has had to date.
And she is the fiercest little creature I know, ruling our household with her small yet powerful iron fist. Her medical issues are complex, but against all odds she has persevered and is meeting most of her milestones like a typical toddler.
Whereas I am blessed with having a supportive partner (the breadwinner and a very hands-on daddy-extraordinaire) and help by way of homecare nurses, the fact remains that the lion’s share of caregiving falls onto my lap. Realistically, I am nowhere near able to return to work. I have swapped Court rooms to being not only a stay-at-home mum, but Freya’s primary caregiver.
In my past, as a career woman, I did not particularly think about caregivers, and to be honest, I probably—mistakenly I must add—would have not thought it a particularly hard way of living. Now having lived it, I could have never imagined how complicated being a caregiver is. In order to master it you need not only be good at a few things—you need to become a jack-of-all-trades.
Take, for example, the medical side of it. There is a lot of mundane stuff like setting up tube feeds, but parent-carers at home are increasingly carrying out complicated medical procedures, from administering total parenteral feeding to emergency tracheostomy changes to performing CPR to the highest level. They read articles and books on their kids’ conditions and spend hours chatting to professionals and other parents. They try to get their heads around complex medical conditions to find anything that could help to make their children’s lives just a bit better. They do endless hours of various therapies at home, from physio exercises to teaching their kids sign languages, to spending hours practicing taking smallest of bites of food and sips of water to teach kids eat (or at least not being so afraid of having their mouths touched). They are the experts in their kids’ conditions, their children’s nurses, the physios, the dietitians, the speech and language therapists, all rolled in one.
They have big calendars on the wall and white boards with numbers written on to make sure that they keep on top of all the appointments with different medical teams, therapy sessions, and deliveries from medical suppliers. They negotiate with nursing agencies and respite providers and chase up any loose ends. They are excellent at packing up for hospital appointments, and manage to travel to hospitals with a carful of medical equipment keeping their special little people alive, occasionally pulling over to carry out life-maintaining medical procedures. They are their children’s personal assistants, managers, porters, and ambulance crew members all rolled in one.
They spend hours fighting to get the right services in place for their kids, whether it is enough nursing hours, safe homes, respite, or even access to education. They research what their rights are and burn the midnight oil reading complicated legal texts. They spend hours writing emails, putting in complaints, even attending tribunals, to enforce those rights. They attend public meetings, meet with politicians, campaign, and start petitions. They are their child’s advocates, lawyers, campaigners, and lobbyists all rolled into one.
So you see, being a caregiver is so much more than feeding and changing. It’s challenging and hard, but it is also rewarding, and at its best filled with moments of love and joy. The hours are awful and the pay, in monetary terms, is bad, but few of us adore our workplace bosses as much as those looking after loved ones. Above all it is a labor of love, and that is what motivates me to do my job as a parent-carer the best I can.