Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
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 →
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 →
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 →
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.
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?
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 →
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".
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!
We always expected that Eloise's 16 day seizure-free streak was only temporary. What we did not expect, however, is that her seizures would come back and almost immediately send us back to the hospital. All seizures suck. But SCN1A-related seizures are especially brutal.
With a 16-day pause from seizures (although today they came back 😥), it gave Brian and I some time to start thinking about our own needs, planning for her future, and enjoying the fact that she is still developing.
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).
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.
Even though I feel hesitant to write it out in case I jinx it, I can't help but celebrate. Y'all, 4 out of 7 days this week were seizure-free. Hip, hip hooray! That has felt so hopeful. But I feel way more hope this week, especially around seizures.
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.
I've noticed that, as a parent, when your kid is in pain you want to rush in and take it away somehow -- to wave some magic wand that removes the root of what's making your baby hurt. If I'm not mistaken, it's starting to look like that's an impossible wish.
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 →
I've been kinda freaking out. In the best way possible. I was fully preparing myself for a lifetime of Eloise struggling with food intolerances. Not only that, I was mentally making peace with the fact that not only would I also have to stay on a limited diet for quite some time as I continued... Continue Reading →
Brian here. I don't often write blogs, partially because I'm so impressed with Mallory's ability to communicate through them, and partially because I never really feel like what I have to say would be meaningful or useful to anyone. But I thought hey, I could give Mallory a bit of break so she could spend... Continue Reading →
She's mostly not eating. Again. These last few days, increasingly it's felt like we've moved backwards in time to a few months ago when it was a constant struggle to get her to eat. When we needed to try every trick in the book to coax her to get close to enough milk in her... Continue Reading →
As far as I could tell, the only areas I had Brian beat in the parenting department were milk production and the uncanny ability to hear Eloise waking up in the middle of the night. (Brian can sleep through anything.)
For a mom of a special needs baby who still relies wholly on breastmilk for sustenance, the COVID vaccine debate hasn't been as simple as "trusting science."
This week has been an odd one. So many highs but also so many strange not-quite-lows. It was almost like a roller coaster of "OH MY GOSH THIS IS SO EXCITING!" to "Man this sucks -- I hope this is just temporary." This photo kinda sums up our week. I’m happy to be on a... Continue Reading →
"But she'll never be normal." - said me "Well, who is really normal these days anyway?" - said a bunch of people It's a snippet that's been on repeat in conversations over these last few months. However, I didn't think much about the concept until I read, "Raising a Rare Girl" by Heather Lanier. I’ll... Continue Reading →
"Your job is to find the biggest, most important problems. And solve them." I'm Brian. Eloise's dad. I work as a product manager at a pretty great company. I often get asked what that actually means and, to be fair, I didn't have a clue until I started working at my last company that had... 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.
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
Eloise The Tiny Fighter 