Unplanned planning

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?”

Julie

7 Comments

  1. I understand. We have a child in JK is who has undiagnosed neurology condition leading to what was a global developmental delay, but is now a variety of developmental delays. His needs are not as great as Kate’s but they are there, and need managing. When he started school he didn’t just get a cold, he pneumonia. We find fatigue the hardest part to manage and explain to other people.

    To make it work I work a non-traditional job that allows me to work Wed-Sat. It means I have Monday & Tuesday to deal with appointments, therapies and the fall out from the start of the school week. There are jobs out there that can work for families that need the flexbility. Have faith.

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    1. I have a possible part time position at my former full time job. It looks interesting. It is stable and won’t require me to ‘look’ for work as a contractor would (such as I am doing now). Maybe I’m not supposed to work – maybe that is the cosmic message I am missing here.
      So happy you wrote in. We all have so many shared experiences to tell one another and hearing about what you all have experiences helps me learn how to cope better.

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  2. I am sitting at CHEO living the life right now. We’ve been here in and out for 14 yrs ( my son is 14) We LIVE day to day and moment to moment…and when the High School teacher asked me to plan for his stream of education it was one of the hardest school decisions ever…planning far ahead. In the end and like every challenge that presents itself – it is just a decision and then another and all of them can be re-assessed and decided differently.

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    1. A little LOL Kim. That was one of the conversations today, ‘what to do with Kate at school’ longer term stream/plan. I think the movement is afoot to put her into a non-mainstream class. Not sure how I feel about this. But I see the logic. Particularly this week.

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  3. Oh Julie, you get it exactly right each time! Ellie’s needs are different than Kate’s but complex and extremely rare as well. I’m sure it sounds very weird to some but whenever Ellie seems to be in a rare place of doing well for her, I get nervous because there always seems to be a crash around the corner. As for paid work, it seems unreachable…but perhaps in the end it will be best (for me& my family).

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  4. One of the toughest lessons to acquire in all of this is the art of surrender, isn’t it? We eventually laughed in the face of it. My mother used to panic when I would even breathe an expression of excitement for an upcoming dinner date or evening out. She would say in hushed tones, “Don’t say it as you know what always happens.” It is freakishly accurate that just when you make a plan, some crisis arises and once again plans must be changed or cancelled………but I still make plans. I still go away even with the threat of losing her while I am gone. I am determined to live this life as best as I can under the circumstances and some times I even flip the “gods” the bird. Just because.

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