Kate is in a bit of an episode. It’s not a full blown episode – that would be the extreme fatigue, lethargy, vomiting, irritability, pain etc. etc. But she has other episodes that I describe as ‘mild’ or ‘moderate’. Their scale of severity is less, but there are still symptoms that affect her day to day functioning that can be difficult to manage.
So we are in a bit of an episode. Kate is ‘shaky’ and unstable with her walking. This morning she fell down a few steps at the bottom of the stairs simply because her legs would not cooperate. She fatigues easily and this is mostly a problem at home in the evening when she just can’t handle her day any longer – no more stimulation please -but it is not yet time for bed. It is also posing a lot of problems at school. Her educational assistant has called me or written a note in her communication book 4 out of the last 5 school days to report Kate as being ‘difficult to manage’, ‘not engaged’, ‘tired’, ‘unable to complete her regular tasks’. She’s even used the word ‘regressing’. Basically Kate is either lying on the floor or crying. All of these things get my attention and make me worried. And so the strategizing begins…
Are we entering a full blown episode? If so, is my life organized enough to handle days at CHEO? Should I call and give them a heads up? Is there something I should be doing to support Kate better? Maybe she should not go to school? Maybe school is over-reacting? What if Kate picks up a bug from school while she is in a mild episode?
The unpredictability of Kate is one of the most challenging aspects of her disease. Medically and developmentally there is simply no day to day predictability about how she will be. It makes ‘life’ planning almost impossible. I wonder how many families of special needs children and medically fragile children ‘life plan’. Have they found a way to make it work? Do they live day to day, and moment to moment? What do they do with those magazine articles that espouse ‘living for the moment’? Do they laugh at them like I do and think ‘wow, if you only knew’. I think special needs parents would have a lot to say to that ‘living in the moment’ life coach or self help author.
Just when you think you’ve got it, you’re on track, there is predictability or at least things are ‘under control’…and you start to consider a return to work, maybe a weekend away, or a dinner out…it all falls apart again, or at the least a ‘pea is put under the mattress’, or a ‘wrench thrown into your plans’.
And this is what it is. This is how it is. And if you are a planner, a list maker, someone who likes to know what is happening day to day – maybe even week to week, it can be very stressful and you need to quickly adapt and become a ‘living in the moment’ person.
When I begin to think long term about anything, or start to think I can make some plans because Kate’s health has been stable, the universe decides to remind me of my place in this world and slaps my hand.
I am secretly plotting a possible return to work – formal work – you know, the 9-5 paid stuff (as opposed to the highly skilled, challenging and absolutely unpaid work I do now). I have shelved any aspirations for my career. ‘Tanked’ is the word I use for that. It’s just not possible being Kate’s mom. But for our family’s financial health, a return to work would be a good thing.
And then weeks like this happen. Where Kate is not ‘sick’, but she’s unwell. Where she can’t handle a typical day. Where her needs are above and beyond what those around her can help her with. And I wonder, “Why do I bother to plan. And what is the new plan?”