Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
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 →
I’ve been working on this post about hope for many weeks, sorting through my feelings. At first, when Eloise was born, I felt sure she’d be okay. But then we got the diagnosis and our worlds fell apart. I stopped hoping for a long while. Yet that whisper of hope has been creeping back in. But so has another voice, which might even be better in the end.
I’ve been realizing that everything I do with Eloise comes with a cost. If I’m rocking one thing, I’m failing at three others.
This is not your normal birth announcement. It’s because our first baby, after 13 years of hoping, will never ever be “normal.” Because she’s missing 19 million base lines of DNA
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.
After 1.5 years of miraculous seizure freedom, one finally broke through again. I hate epilepsy. Early in the morning I woke up and could swear I heard Eloise crying from her bedroom. As I listened again, though, I heard nothing. But I checked Eloise’s Owlet camera and, indeed, she was crying. She’d pulled a blanket... Continue Reading →
I cannot count the amount of times the last two years Eloise and Baby K were screaming at the same time when, in the midst of that chaos, Brian and I would look at one another, laugh, and say, "You know what would be a great idea? If we had another kid." Well, SURPRISE! If... Continue Reading →
Many have noticed over the last two years and, some have written us directly asking, “Why don’t you show Baby K’s face?” Here is why.
Eloise will turn 4 this week. And we need your ideas. Because we still have no idea how to celebrate her birthdays. Or, well any of our birthdays. 🙈 Brian and I have always been rubbish at celebrations any sort of holiday or birthday— we have never given gifts or really even decorated. So we... Continue Reading →
This is a post especially for our friends in Estonia, to help us find someone to be a full-time caregiver for Eloise. If you want more information, this post tells you what you need to know.
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 →
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 →
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 →
Back in January, before Eloise's seizures or GI issues or constant emergency hospital visits even began, we were barely making it. Specifically, Brian was on the verge of a mental breakdown with all of Eloise's constant needs and pain and issues. Back then, we had some long, tearful discussions and made some big changes. Our... Continue Reading →
I imagined Eloise's first intensive therapy program would be 2-3 weeks and, well, intensive. Surprisingly, we decided yesterday to end Eloise's first intensive after just 2 days. Why? Basically, this program didn't make sense for Eloise. Even if we'd been able to stay there overnight (gosh lodging in Haapsalu is EXPENSIVE in the summer!), I'm... Continue Reading →
Eloise started her first intensive with blood, sweat, and tears — literally. Even before the therapies started for the day. 😝 However this intensive won’t be so intensive this week for a few reasons Some therapists are on holiday They don’t allow kids with feeding tubes to participate in swim therapy Eloise is still too... Continue Reading →
Today Eloise was on the floor, fussing in pain and moving around — typical behavior in this season. Often, we pick her up and try to find and treat the source of pain (usually we can’t 😐). But today I watched instead of intervening right away. And then… Eloise got into a sitting position herself... Continue Reading →
“It’s been nice to have a little bit of a break from Eloise problems.” I said to Brian Sunday. We both paused, looked at each other, and started laughing. If a week with 2 hospital visits (one planned, one emergency), Eloise’s head covered in mosquito bites, 4am wake-ups every day, diarrhea still continuing into its... Continue Reading →
Today is Easter Sunday -- a day where many all over the world celebrate hope. The year Eloise was born, I made her birth announcement on Good Friday, with the faith that, someday, her life would be a story of great joy rather than of grief and sorrow. As I type, however, that day has... Continue Reading →
For the third time since we came home less than a month ago, Eloise has a virus. Which now means days of almost constant seizures. Considering she just had 5 days in a row of only 1-2 seizures per day and was beginning to act like herself again, this super sucks. So yesterday, as Baby... Continue Reading →
The short story. Eloise’s seizures have returned. We thought it was just an indication she was getting sick and they’d go away again, but they might be here to stay. And treatment options are complicated. What kind of epilepsy does Eloise have? Eloise’s seizures are related to a single gene she’s missing — SCN1A. This... Continue Reading →
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 →
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 →
If you’re thriving in this season I am honestly so happy for you. However, if you’re barely making it day to day, know that you are not alone — we're there, too. For many weeks I’d brainstormed ways to get Brian time off. But he’d always refuse any suggestion of rest, saying he wanted to... 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 did some soul searching Fall 2022. We'd lost 5 babies in 4 pregnancies and had a profoundly disabled daughter. Yet still, our hearts didn't seem to be hardened, even after all we'd been through. We decided it was a sign we should keep going -- we'd handle whatever came our way, just like we always did. Instead, we waited. And waited. And waited.
When Brian and I were going through premarital counseling many moons ago, we were in agreement -- we wanted 3-4 kids. Funny enough, because we were getting married so young, one of my fears was that we'd accidentally end up with far more than 4 kiddos. Yet, within 6 months of our wedding date, we had a long discussion, took a deep breath, and decided it was time to leave babies up to fate. We assumed it would only be a matter of months until we'd be posting our creative pregnancy announcement on social media. Instead, we waited. And waited. And waited.
Tired parent alert. The sun rising earlier means puppy has also been rising earlier. Which means he also wants his morning walks earlier, too. Brian takes him in the evenings. I take him in the mornings. So. Between constant teething for months, Eloise’s newly broken leg, even more interrupted sleep for many weeks in a... Continue Reading →
Eloise The Tiny Fighter 