Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
I wish I could say I am completely immune to looking for -- and preparing for -- danger in all the wrong places. That I'm somehow more mature and more wise and can magically predict the future. But, regardless how much I've tried to neutralize known threats when it comes to Eloise's health, it seems I have fallen into the same trap as mankind.
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 →
There are fleeting moments where I think, “Mallory, all new parents struggle. What the heck is so hard that it takes two of you (plus asking for even more help) to take care of her? I mean, she’s just a baby. Babies have high needs, you knew that. Why do both of you need to... 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."
"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.
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.
KNOWING VS NOT KNOWING One Mom of a 17-year-old boy who has the same deletion as Eloise recently said, “Wow, reading your birth announcement made me realize how much more information you have at this point than we did years ago. Back then there was almost no information out there. I’m not sure if I would... Continue Reading →
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
Originally posted on facebook in 2021, a few weeks after we got Eloise's diagnosis. Brian and I’s genetic test results came back. Neither of us are carriers of any sort of transmuted or mosaic or damaged or missing genes. We are, somehow, completely normal -- genetically speaking, at least. We were both shocked. We were... Continue Reading →
Picture of a freshly-showered, hope-filled Mallory from earlier today. And a cute baby Eloise who had a wonderful, fairly calm and happy morning. Because we had no idea what was to come. Maybe we were in denial, but we never expected this.
Somehow, just seeing Eloise in this way too big outfit feels like a perfect visual analogy for where we're at.
Years ago, right before we moved to Estonia, I became an aunt for the first time. When Brian was growing up, his favorite toy was a little stuffed penguin he called "Pengie." I decided my new little niece, Mia, needed a stuffed penguin of her own from her Uncle Brian and Aunt Marsh-mallow.
Eloise The Tiny Fighter 