Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
In September, Brian casually plopped down on the couch next to me. It was a really stressful season for us. Brian started. "Hey. I just wanted to get your permission before I bought this thing." Over our 15+ years of marriage, we've always "asked permission" from the other before we buy a large ticket item.... Continue Reading →
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.
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 →
I had been pretty good about writing weekly updates about Eloise, then they became biweekly updates, then monthly updates. Then I went back to work and they disappeared altogether. But I hope to begin them again because it always helps me celebrate and savor all her gains. If you haven't been following, gosh it's been... Continue Reading →
“Do you think it’s all the people who have been praying? Because this almost happened right after you put up that post.” - Brian
They sent us home from the hospital on Tuesday the 7th, a little over 2 weeks after we first arrived -- far earlier than I'd expected. I was hoping to write a post about how after speaking to a psychologist I now have a much better undrstanding of my feelings around the feeding tube. I was hoping to write a post about how it's now been nearly 3 weeks with no visible seizures. I was hoping to write a post about how glad I am that we're home. And all that is true.
I should be jumping for joy. I should be writing a post about how incredible this is after weeks of seizure after seizure after seizure -- because it is. It really does feel like a miracle. Eloise's doctor even shed a few tears when she found out. Because we were all shocked. That's what I want to want to write about. But I'm not. (Okay, well, we did start with that.) Really, instead, I've been crying.
Back when we learned about Eloise's deletion and what it would mean, I was devastated. There was almost no literature out there because Eloise's syndrome was so rare. From what I could tell, Eloise would never be able to speak, read, write, or just do normal "stuff." My heart was broken. Eloise would never say... Continue Reading →
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 →
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 →
Thankfully, most days with Eloise are great — fantastic, even. But not all days are all good. Today Eloise went to bed not having had supper. And, spoiler alert, it wasn't because she being punished.
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.
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 →
July was our first month where both Brian and I were back at work. It was also a big month for so many other reasons. It was the month we took our first big family trip (a work-cation to the southern Estonian city of Tartu)the month Eloise developed some strange movements that took us to... Continue Reading →
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.
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 →
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.
I swear I remember reading long ago that parents were supposed to look forward to a golden period -- a few months after your baby was born but before they learned to crawl. Because your baby would laugh and smile and coo but weren't yet at a place where they were mobile and constantly destroyed your house. Well, I think we’ve finally made it to that golden period in Eloise’s life. And there are so many things to celebrate in its midst.
Why pumping did not work for me -- until I learned a secret. When I started pumping, it was painful. So painful that I was close to tears during pumping and, afterwards, any time even a soft shirt would touch my nipples, I’d wince in pain. A bunch of pumping moms said, “It gets better over time.” But that was not true for me.
What I wish I’d known about exclusive pumping from the start
Before you commit, you'll wanna know WHY you're pumping
I pumped for 16+ months -- I didn't think I'd make it past 1 week
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 →
Thursday was a sacred day. As I made scrambled eggs for breakfast, Eloise happily rolled around on the floor -- entertaining herself with whatever objects she found nearby. She seemed so happy that even once the eggs were done, I decided to take a few minutes to empty and re-load the dishwasher. Then I sat... Continue Reading →
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?
It feels like Eloise's development has slowed down a little this last week. Other than the fact that we can now cut several of her finger nails without screaming (thanks in large part to her beginning to touch different textures with her hands, which helps her get used to something touching them). And the fact that she hasn't had a seizure for over a month now -- the longest she's gone without them since they started. Regardless of it seeming like her development is slowing down, though, there's a lot more stuff that IS speeding up.
If you know our story, you know we bought a fixer-upper home while we still didn't know if any of our fertility treatments would work. Our house was a project Brian and I could work on together whether or not our dream of having kids ever came true.
These last few weeks, something magic seems to be happening. It's like Eloise has suddenly realized there is a world beyond her and she wants to explore it. She's reaching for things, transferring objects from one hand to another, exploring textures and lights and environments.
A post with practical information about things we are selling and how to get in touch.
Eloise The Tiny Fighter 