Its a Thursday in June, quite recent. We are driving along our long, bumpy road to home and my mobile rings. Its from Abbeys’ school. That’s strange, they only ring when something is wrong with Abbey…and she is driving along with us in the back of our ‘bread van’.
I think it must be one of the nurses wanting some updated information.
No, it is Abbeys’ truly, amazing teacher ringing to let me know that Abbey should not come to school tomorrow because she wont be there, her Teacher Aid is on holidays and there are 2 new replacement teachers. The replacement teachers don’t know Abbey.
So that sounds a bit strange, doesn’t it? They don’t KNOW Abbey?
It doesn’t mean they don’t know who she is, or that they couldn’t provide an education for her. They are amazing at Abbeys school. Abbey loves it there.
What it means, is that Abbeys seizures are so abnormal, unpredictable, often and just plain weird, that if you don’t know about her condition in some in-depth detail and experience, you can’t care for her. You do not know what to expect and in majority of cases new carers panic and we end up on the Emergency Department..
This is the one place we avoid on a daily basis. You see, Abbey has CDKL5 encephalopathy. Its a gene mutation that causes lots of weird and wonderful things. We stay away from the ED as the doctors and nurses cannot understand or even begin to grapple what her condition involves. We actually have to say, just call her Neurologist for what we need to do, or to give permission for us to go home. Most of the time if we do end up in ED, its either because someone does not know her, or she is really, really sick.
Every time we go to the ED, we just come home again after a few hours as no one can do anything. Its normal for us.
So her teaching calling to say, don’t send her to school tomorrow, as the new teachers don’t know her, presents to us a new kind of normal. We could get angry, sorrowful or even sad about not being able to send our daughter to school due to her medical conditions. The strangeness of her condition. And do you know what, it really sucks, especially for Abbey.
Our kind of normal is always changing. Always evolving. What it is evolving into, is a topic for another blog. One phone call, changed how we manage Abbey and school attendance now. Its a few weeks later, since that call, and well her seizures are just mad and we get to have her home more often. We get the cuddles, not her teachers.
Life is not bland, its challenging and at times annoying.
Tennille, Abbeys mum