All over the Western world we’re experiencing a bit of collective grief.
Let’s talk about Ukraine first
I think many of us in Estonia feel helpless. We donate objects, we give time, we offer money. We post and re-post on social media. We wonder if we, too, should start planning for what we will do if Russia invades us. But it doesn’t feel like enough. We could be doing more, right? Something is wrong with us if we are enjoying life while others are suffering, right?
So we feel stuck. It can feel wrong to live a daily life or to try to find joy in things when there are such terrible atrocities happening right now. But, somehow, we must.
I saw a beautiful quote yesterday from C.S. Lewis in 1948 that I’ll paste here.
“In one way we think a great deal too much of the atomic bomb. ‘How are we to live in an atomic age?’ I am tempted to reply: ‘Why, as you would have lived in the sixteenth century when the plague visited London almost every year, or as you would have lived in a Viking age when raiders from Scandinavia might land and cut your throat any night; or indeed, as you are already living in an age of cancer, an age of syphilis, an age of paralysis, an age of air raids, an age of railway accidents, an age of motor accidents.’
In other words, do not let us begin by exaggerating the novelty of our situation. Believe me, dear sir or madam, you and all whom you love were already sentenced to death before the atomic bomb was invented: and quite a high percentage of us were going to die in unpleasant ways. We had, indeed, one very great advantage over our ancestors—anesthetics; but we have that still. It is perfectly ridiculous to go about whimpering and drawing long faces because the scientists have added one more chance of painful and premature death to a world which already bristled with such chances and in which death itself was not a chance at all, but a certainty.
This is the first point to be made: and the first action to be taken is to pull ourselves together. If we are all going to be destroyed by an atomic bomb, let that bomb when it comes find us doing sensible and human things—praying, working, teaching, reading, listening to music, bathing the children, playing tennis, chatting to our friends over a pint and a game of darts—not huddled together like frightened sheep and thinking about bombs. They may break our bodies (a microbe can do that) but they need not dominate our minds.”
C.S. Lewis, author of The Lion, the Witch, and the Wardrobe
There’s something simple and almost defiant about living our lives despite possible danger. Which falls quite in line with how we decided to handle things after we did some soul-searching about our role in the crisis in Ukraine. We came to the conclusion that the best thing we can do for little Eloise is to carry on like she is the center of our world — because that is all her precious little brain can comprehend.
So, for now, we help as we can from here — donating stuff, money, or time — but our ultimate goal is to be present enough mentally that we can still rejoice in all her victories and weep alongside all her sorrows.
So, speaking of Eloise
This week was a much-needed breath of fresh air for us in regards to Eloise.
It is now clear that she definitely has two molars coming in so it’s no wonder it’s still an exhausting struggle to get her to eat. BUT. She is happy again. Happy and content and taking 2 naps on most (not all) days.
This was also my first week doing the virtual minimalism challenge I’m taking a part of and I got so much stuff done. I’ve never seen my “to-do” list so full or so checked off as I have this week, so I’m feeling more energized than ever.
Brian, on the other hand, is not feeling that same way. Clutter or things left undone or times when Eloise is a little hard to handle are just a lot more difficult for him than usual. We say he’s got “lowered capacity” due to the weeks of mental struggle of taking care of an upset kid who wasn’t really able to eat or sleep normally on top of that. But Brian has been at lower capacity for a fewer weeks now. Though having a happier little kid did make it a little easier for him this week specifically, we agreed awhile ago that he will need to unplug from us completely for a little bit to really get the rest he needs to recharge.
Which is why it’s great that we’d already planned for him to get that. Today, Brian will be heading out of town to stay in the same cabin I did for my birthday. And, though we won’t get to share the experience together at the same time, there’s something comforting about the fact that he’ll get to experience the exact same nature and space I did just 1.5 months ago.
Otherwise, this week was just really wonderful for little Miss Eloise. Other than a few seizures on Monday that had us scared for a minute we might be headed back to the hospital, things just keep getting better and better for her.
I’ll let the pictures do the rest of the talking.
I am washing my face before bed while a country is on fire.
It feels dumb to wash my face and dumb not to.
It has never been this way and it has always been this way.
Someone has always clinked a cocktail glass in one hemisphere as someone loses a home in another, while someoen falls in love in the same apartment building where someone grieves. The fact that suffering, mundanity, and beauty coincide is unbearable and remarkable.
At the moment, every week she’s getting better and better at putting weight on her legs. Brian remarked afterwards “I think she will likely walk.”
Then he paused. I paused. And we looked at each other.
“I mean, unless she has a big seizure or starts regressing because of them.”
We both nodded solemnly.
That’s the thing with her SCN1A related seizures (hello #dravetsyndrome 🥺). She might do a ton of therapy then one little cold could send her into a seizure that lasts over 5 minutes and 💣💥 — small skills gone, big skills gone, or even her little personality.
Her last “big” seizure was January 11. Over 70 minutes long. (We later learned we could have used 2 doses of her rescue medication diazepam — I wish we’d known that day).
Before it, she’d been consistently grabbing the spoon during feeding time, trying somehow to use it herself. But after that big seizure, she didn’t do it again.
Until yesterday. 🥳
So it took her little brain 2 months to grow back the pathways it had back then in this area. But at least they are back. 🥲
And I’m afraid that might just be the reality of her life. Gain some skills. Have a bad seizure. Lose some skills. Take many months to gain them back — if they ever come back.
Since we can’t predict the future, we will just savor the Eloise of today. And rejoice no matter what she can — or can’t — do at the moment. ❤️❤️❤️
Brian remarked, “Oh, now I can see the path you go down so that you have a four year old who only eats one food.”
Parents of the year award, here.
All our love,
Mallory, Brian, and Eloise
Eloise The Tiny Fighter 
❤️❤️❤️
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