Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
Once upon a time, any trip outside our home ended in a complete Eloise meltdown. It didn’t matter if it was quiet or loud, light or dark, inside or outside, cold or hot, or she was carried or pushed — Eloise couldn’t handle it. As she grew older, however, things changed and it became the... Continue Reading →
Eloise WILL walk one day. Did we ever have a doubt? Yes. But here is why we don’t anymore.
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 →
Welcome to our newest construction project. We call it “make our house year-round livable”😅 In Estonia, it’s pretty normal for families to have what they call “summer homes” or “garden cottages”. These are often tiny places (think 20-30m2 / 200-300ft2) with maybe a sauna and a front room and a wood burning stove. No running... Continue Reading →
This last year has been a tough one for sweet Eloise and us as her caregivers. But there were still joyful times even amidst all of the pain and tears. So I decided to find a few videos from every month, to help us remember some of those good times. But also write a little... Continue Reading →
This is part 2 to the story of Eloise's baby brother K entering our lives. You can read Making his entrance -- Part 1 here. Over the last few years, I've noticed many posts in local facebook mom groups asking some form of the question "What kinds of local playgroups or activities do you recommend... Continue Reading →
It’s crazy how much guilt one simple thing — like when and how the baby comes — can bring with it. Originally, baby boy’s due date was September 3. Then the doctor told me at some point September 1 was more accurate, but it never got changed in the computer — so September 3 it... Continue Reading →
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.
Two steps forward. One big step back.
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.
My fifth pregnancy had just passed 13 weeks and it was the night before the genetic bloodtest was supposed to come back. If you asked me that night what we'd do if the results showed some sort of genetic abnormality, I still wasn't sure.
Brian and I have spent 16 Christmases together and I can’t remember a single one where we gave one another gifts. I’m also pretty certain we’ve had a home with no tree more often than we’ve had one. You see, I love the concept of Christmas — being close to your loved ones during the... Continue Reading →
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.
Back in May, the idea of a taking a holiday together as a family seemed impossible. At the time, Eloise still hated being in a stroller or carrier (all 5 carriers we tried) for more than just a few minutes. Not to mention any time we tried to bring her to a place outside our home — like the grocery store — she’d show her displeasure quickly by screaming and arching herself backwards over and over. So the thought of going on a nature walk on a trail or even to a restaurant seemed like a distant dream.
Eloise The Tiny Fighter 