When I started my career after university in a busy London PR agency, I soon became acquainted with the Sundy Night Blues. That feeling that starts to creep in at around 1pm on Sunday and, by the time the perky theme tune of the Antiques Roadshow strikes up, has enveloped you, tainting the precious last few hours of the weekend.
Many people I know still get that feeling now. Wishing the week away and celebrating the weekend is very much part of small talk; ‘At least it’s Friday’ / ‘Back to work / school tomorrow – sigh’, ‘Nearly halfway through…’ etc.
This is one of the ways in which I find myself feeling unseen as a parent carer. Most people, apart from those very close to our family, still assume it’s the same for us. This is not their fault. They couldn’t possibly know that weekends mean no night care, often no respite (although we do have enabling days), and no on-call medical team that know our child.
Mornings normally start between 5 and 6 for us, if it’s been a good night. If it’s been a bad one, one of us could have been up from midnight and the other will take over around 4.30. Today we were in bed at 6.30 and all was quiet. It felt like an unbelievable luxury. Thanks to our body clocks we were both wide awake and reading, which felt like a total treat.
In the week, there is time for rest after an early morning. The school car comes to pick up our daughter at 8.30 and then we go to work, or get on with household chores if it’s the end of the week when I am not at my job.
Work for us is respite. It really is.
I’m not saying this for effect or to demonstrate how tough our lives are, but we are both lucky enough to have creative jobs, working with great people, and both our jobs have nothing to do with the world of childhood disability.
When our daughter’s seizures are bad or we are living on the edge of another hospital admission, I get the Friday Night Terrors, knowing that over the weekend, although there is an emergency care team about 5 minutes from our house (forever grateful that we live around the corner from a hospital), our daughter’s team are not there.
I cannot contact her epilepsy nurse for advice, or email back and forth with her consultant. Once, an emergency doctor in resus had never heard of a VNS (Vagus Nerve Stimulator – an increasingly common treatment for drug resistant epilepsies). In the past, the resus team have had to call her consultant at home for advice as her epilepsy is so complex.
In crisis times this makes weekends feel very exposing and scary.
On Mondays, I genuinely feel my shoulders drop as I can feel the weight of responsibility lift. When our daughter is at school, the pressure on us to be next to her at all time, watch and monitor her every move (both to prevent her from doing something dangerous, or to alert us to a seizure), is gone. Her care team are back in the office and services are around to talk to. I can move all of the care and admin forward as people who hold the key to our support are at their desks.
It’s now the Easter holidays and, while I find myself excited to be spending more time with my little girl (she is gorgeous and amazing), I know I will stumble out the other side with jelly legs, completely depleted of emotional and physical energy.
I am currently working on launching a campaign for special schools to be given funding to provide flexible in-built holiday provision as needed throughout school holidays. Any current provision, where it exists, is often patchy and inconsistent. I am hoping that if, one day, we could see something like this rolled out, we may reduce those pre-holiday Friday Night Blues just a little for parent carers that experience it.