What is a Carer?
It dawned on me this morning, as I had to get my daughter up for school, having completed the care plan……. meds, fed, dressed and me also, that when our kids are going through tough times it doesn’t just affect us. I should, at this time, point out this role is NOT normally mine in the morning as we have a care team at home during the week.
Looking back to last week, I found my daughter in a situation I would not like repeated, I have struggled since with the image in my mind and the fragility of our kids living with this beast – CDKL5 disorder. You see last week was half term from school and this week she had to return. The first day I “forgot” and how I “forgot” I don’t know as it has somehow been imprinted on my mind, to communicate the situation of last week to the school staff. After her first day back a note came back in the communication book “were you using her splints in the holidays”, it hit me, “splints?” they were the last thing on my mind. In a bid to bring the school up to date I set about to communicate the events of last week her communication book, but merely having described some of the event, I cut the commentary short and wrote perhaps the school nurse should call me. Later that morning I had a call, “you wanted to speak to me”, Yes I replied about what happened, “what happened?” she didn’t know. I am not going to go into detail here, but it struck me that actually what I had been communicating in written form sounded really bad, perhaps the teaching staff couldn’t bring themselves to describe it without knowing the full facts after all it wasn’t good, and if it upset me if would have upset them I would imagine as she spends at least 30 hours a week in their care.
Going back to this morning, I was running late by the time my daughter came out of her long absence seizure and although I hadn’t planned on putting her on the school bus, I had to. I communicated to Mr P, the driver who has known her since she was 3, some 8 years now “she’s had a long absence seizure, and hasn’t eaten anything” his reply “oh bless her” said with such sincerity. I drove to work thinking on his reaction, after all no seizure is good, I began to realised there are so many people that come into contact with our children whether they are at school or nursery, or day services when they are adults, these people spend a lot of time with our kids therefore when our kids are unwell it must have some kind of impact on those working with them day in and day out, at least I would hope it would.
This week is carer’s week. I think it is easy to forget the impact of our kids health on not only their caregivers but also transport staff; teaching staff and even nursing staff. Yesterday a call from the community nurse who was concerned about my daughter demonstrated that.
So I wanted to dedicate this post, to all those informal, formal carers, and point out that carers coming in many shapes – even down to the driver of the school bus, to the teachers, teaching assistants and even school and community nurses who have a vital role in ensuring the safety of our kids.
You are amazing, and I realise that some of our pain with living with a child with a complex and rare disorder DOES impact on you too.