Category: revelations

How darkness leads to happiness

In 2012 we moved to Estonia, a northern country with only a few hours of daylight during the winter. And it was that first year we learned that darkness, even in all its loneliness and pain, can be a gift. Because when you experience darkness that lasts for a long time, when the light finally... Continue Reading →

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Accidentally Estonian

Many of our Estonian friends and acquaintances have a (mostly) unspoken life mantra — always expect the worst to happen, that way if it does, you weren’t disappointed, and if it doesn’t, then you will feel surprisingly happy. As humans who grew up in the USA, our mantra is a bit different. Unconsciously, we always... Continue Reading →

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Lipstick, pie, and IKEA

Eloise's first 3-4 months were dark for Brian and I. Very dark. Very very very dark. Eloise was struggling with severe reflux provoked by extreme food intolerances. It meant she screamed for hours and hours and hours every day. Every moment she was awake and not crying, we were focused on getting her enough milk.... Continue Reading →

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Part 6: Self-care survival plans

Will this baby be as hard as Eloise? Will we be as exhausted? We have no way of knowing until he arrives. But we decided that, this time, knowing roughly some of the worst case scenarios that we experienced last time, we'd rather be overprepared than try to wing it when baby arrives.

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Part 4: The results are in

I didn't realize how unprepared I was for the news that came. Estonia is a very tiny nation. It's got 1.3 million people which means everyone knows everyone. Options of many kinds can be limited.

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Defying the odds

There's a common narrative I hear nearly every single day from kind hearted strangers or people we know. "She'll defy the odds, just you wait." The narrative, at the core, is the same. "Don't think negative, think positive!" I think the intent is to encourage us, to bring us out of a place of darkness and sorrow and re-direct us to some more light and happy place. Because, without realizing it, as a society we equate disability with sadness and darkness, but "normal development" with achievement and positivity.

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Send help. She will only eat my food.

One of the things I was strangely looking forward to in parenthood was our future child stealing food off of my plate. Then when we got Eloise’s diagnosis and saw many kids on feeding tubes, we realized it might not ever happen. Then when we discovered Eloise had severe food intolerances at the beginning of... Continue Reading →

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Finding Eloise’s puppy

For most “normal” kids, the most interesting things around them seem to be other humans. But not Eloise. As her vision improved earlier this year, we noticed that in addition to being attracted to lights, Eloise was also attracted to something new — our cat. Who did not exactly return the affection. Soon, though, to... Continue Reading →

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Apparently it’s time for a dog

I grew up with dogs, but always thought of myself as more of a cat person. Brian is more extreme. He’s told almost everyone we know for as long as I’ve known him that he doesn’t like dogs. Eloise, unlike her parents, doesn’t discriminate — she seems to like all furry animals.

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The day after a big seizure

Tuesday night in our chaos from returning home from our vacation turned hospital stay, Brian and I both forgot to give Eloise her anti-seizure medication. The next morning, as we both realized it, we held our breath and hoped it wouldn’t have any consequences. But, sadly, 12 hours later Eloise had the worst seizure we’ve... Continue Reading →

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Off to the hospital we go. Again.

Friday I got a video message from Brian while I was working from my company's Tartu office, "Hey, I'm gonna try to capture this. She's doin' something weird -- like you almost just saw it there for a second. Like she's trying to bite her fingers and then just starts shaking." I watched the video of this new thing happening with Eloise and my stomach dropped. Something was wrong. Very very wrong.

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Attending our first birthday party

Eloise and I went to our first birthday party together yesterday. Sweet little Lilli turned 2, and her mom is a fierce advocate of taking care of your mental health while parenting little humans. The party was a 45 minute drive from our home but I realized last minute that it was at a petting... 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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Project: Take a family vacation someday

I don’t know what it’s like to raise a “normal” kid but, gosh, sometimes it seems like something should be so simple but it’s really really not. In Estonia, the symbol of motherhood is a stroller (preferably a good stroller of the right brand or color) you use every single day — rain or shine... Continue Reading →

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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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“What would make you leave?” Facing ourselves.

It had been a tough few weeks and Eloise was finally napping, so Brian and I were scurrying around the house to do a quick cleanup. As I was loading the dishwasher, Brian paused what he was doing, looked at me, and casually threw out a question. "What is our own trigger point? When would we consider fleeing Estonia if Russia invaded?"

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Strategies to thrive for when life sucks

Life with Eloise is an absolute and utter joy. Until it isn't. We will find a way to take care of this kid and take care of ourselves and take care of our relationship. And we won't accept a life of merely existing in pain as an option. We will thrive while we do it. We're not there yet, but we've made a lot of progress. This is that progress. Part 2 of "Time to re-learn Teamwork".

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Hospital miracles and redemption

We returned last night from our planned Tartu inpatient hospital stay. So. 👏 Much. 👏 Good. 👏 News. 👏 There's no way to easily explain it all in an instagram story or a tiny facebook post, so blogpost here we go!

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What syndrome does Eloise have?

I've meant to write this up for awhile, because friends, family members, therapists, social workers, and medical professionals all ask the same thing when they first find out something is wrong. "What syndrome does Eloise have?"

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Operation: Keep Eloise (Well)

If you're new to our blog, in addition to a bunch of other issues related to her chromosome deletion, Eloise started having regular seizures right after she turned 9 months old. As best as we can tell, not only will it (likely) be hard to control her seizures, but we are going to need to do far more than just keep trying various medications on her. So that's why Brian and I sat down this week to come up with this: Operation Keep Eloise (well).

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Our 2022 word just might change our lives

I can’t remember the last time I made a New Year’s resolution. And I never really understood that trend to pick a “word” for the next year. Yet here we are. With a word to help guide our lives in 2022. But it means way more than I’d ever imagined. And I think it has the potential to change our lives.

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Time to re-learn teamwork

I was going to write our 45 weeks update but this became something else. Back when Brian and I got married 14 years ago (yes, we're old) we had this thing. If there was a chore neither of us wanted to do, then we did it together. Dishes? Together. Laundry in the dark smelly basement?... Continue Reading →

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44 weeks: The seizure marathon

At times, I swear our life is a soap opera. It's like a strange telenovela written in a mold-infested basement by an author who lives off caffeine and cigarettes. So many unexpected twists and turns -- not all of them pleasant.

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Surviving one of our nightmares

Another seizure. This time longer. 40 minutes. In those moments, especially when Eloise gets a sudden breather for a half second before the seizures return and freeze her little body over and over, it’s heartbreaking. It feels like pain is all there is, and pain is all there will ever be. But I know tomorrow... Continue Reading →

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I want to choose her

At least once each day, as Brian holds Eloise, he pauses and turns his full attention to me. Then, with his voice breaking from the emotion of it, he says, "I know our baby girl has so many problems, but I wouldn't give this up. I would still choose this life with her even knowing... Continue Reading →

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