Tag: rare disease

Her worst seizure week ever 🥺

I keep thinking, “Right. Today is going to be better than yesterday.” Then it isn’t. To give you a bit of context of “normal” seizures for Eloise: Worst seizure control time (pre correct meds): December 2021 — 51 seizures Best seizure control time: May-July 2022 — 1 seizure total August — 12 seizures September (she... Continue Reading →

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No rest for the weary

Man it’s been a rough season around here. The good news, I hope, is that it’s just a season. I had planned to write about our shorter-than-expected long Tartu hospital stay. But that plan got derailed yesterday when seizures started. But let’s give you a little background. A few weeks ago (after that weekend of... Continue Reading →

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Two sides of the same coin

While training to be a counselor, a friend once said he learned never to assume you know what emotion someone has about an event. "Maybe a woman just lost her long time husband and you think, 'Gosh, I'm sorry, that must have been tough.' But you never know. Maybe he was a violent alcoholic and so her reaction was actually, 'Thank God he's gone. I'm finally free!'" So when you watch this video of Eloise, do you feel pity? Excitement? Or maybe even anger and frustration?

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I’m not the mom I’d envisioned

Sometime during my years growing from a child into an adult, I internalized the idea that I was never doing enough. Besides that -- I decided back then -- whatever I did do was never good enough. If I had a school project, it couldn't just be "good enough," it needed to be over-the-top amazing.... Continue Reading →

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58 weeks: Finally some relief

All over the Western world we're experiencing a bit of collective grief. It's sad and weird and all kinds of things living in the middle of a country being invaded to the south of us. But life must go on. And, it feels weird to say it, but this week has been a breath of fresh air for us -- when it comes to Eloise.

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