What matters

This is not the post I had planned to write.

Last Monday, my daughter (who is epileptic) had a seven minute seizure on the way to school. We knew her seizures were escalating, but we expected a simple increase in medication, approved by her neurologist via email, would resolve them (as has happened in the past). Instead, with seizures occurring every fifteen minutes, we spent the week in hospital. Two hospitals, a team of neurologists including two professors, four medications, 48 hours on an EEG, and five days later she was stable enough to return home. Lots of follow-up needed, still having about 30 seizures a day, but home.

The temporality of hospitals is curious. There are few other places that combine numbing boredom and anxious panic. Day and night are no longer relevant. Exhaustion is constant. The nurses, volunteers, teachers and clown doctors deserve all the love. (And my heart goes out to all the children and parents who are struggling more than us). In our enforced closeness, my daughter’s good humour was inspiring. I am thankful for a partner who shared shifts, family and friends who visited, sent gifts (beautiful animal-shaped balloons!), care packages, texts, emails and meals, provided childcare for the four year old and offered distractions. I am indebted to colleagues who took up my slack at work, by giving lectures, preparing workshops, proofreading articles (and those are just the things I remember off the top of my head — I haven’t yet braved my calendar). My daughter is at work with me today and she approved this post.

I am writing this hot on the heels of posts about busyness. The list of what I haven’t done is endless. Emails from work continue to arrive. Deadlines stretch and snap. Work is not so important; it doesn’t matter as much as it did a week ago.

9 thoughts on “What matters

  1. Agnes thank you for sharing and for reminding us all of ‘what really matters’. I hope the powers that be read and see this post and connect with just what really matters to all of us captured by this relentless machine. Sending you much love and kindness and may you hold onto only that which matters…the love of your family and their need for you.

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  2. Agnes, I’m so sorry to hear this – what a terrible time. Please give my love to Harriet and all the family. So sorry I couldn’t be there for you to help out. Lots of love xxx

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  3. Sending warm and fuzzies in your direction. Your good sense and good humour will see you through this. Work will always be there, family is what counts.

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  4. My daughter has epilepsy, too. I’ve done my share of commuting from hospital to campus–and trying not to fume when my colleagues complain about trivial things! This expresses so many of my own thoughts. Thank you for sharing, and I hope the new meds work well!

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  5. Warmest wishes for your daughter’s recovery, and return to everyday life. As you say, illness and other threats to life bring what is most important into sharp focus, and all else just falls away. How to keep hold of the preciousness of life and love, when all is restored, and you are back with your calender, that is the challenge – as you have been discussing.

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  8. Lovely post. I hope your daughter’s condition has settled down again to something manageable.

    I have spent a lot of time in hospitals over the last ten years, mainly with ageing parents, and I have come to realised there’s something called “hospital time” and it bears no relation at all to “real” or “outside” time. It can be frustrating but once you realise that’s how it is you just settle into it and go with the flow (except when you don’t, that is!)

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