Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
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.
It's been nearly a month now since that Saturday we rushed to the hospital with Eloise. You'd think we would be back in the swing of regular life by now but, strangely, we aren't. It almost feels like Brian and I are starting over from scratch.
From time to time, someone says, "Hey, Mallory, you should make a book!" So, well. Here I am, telling you about the book I made. Although perhaps not the book some were expecting.
To say we’ve had a few rough patches over the last weeks may be an understatement. In case you missed recent events I posted about on Eloise's facebook group and the stories of Eloise's instagram page, I'll recap it. And then move on to those treasures I mentioned. The very short version On Saturday, November... Continue Reading →
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 →
At times, it feels like the “problems” never stop. We solve one problem, then another pops up that’s just as big. Or bigger. I guess that’s life with Eloise. No rest. Sigh.
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 →
It’s weeks like these that I am so enormously grateful that Brian is staying at home, too. Just last night as I was going to bed I looked over at him. “Brian, you staying at home with us has been a great decision.” “I completely agree. It was the right move.” Brian responded. “Can you imagine what it would be like if you were still working?” “It would be rough.” “I would not be okay mentally. I really wouldn’t. The amazing thing is that right now even in the midst of tough stuff, I actually feel like myself. I’m so grateful.”
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.
This last week we put half-full bottle after half-full bottle in the fridge feeding after feeding throughout each day. And, every night, as we gazed at a refrigerator shelf full of untouched milk, Brian and I looked at each other with knots in our stomachs and concern on our faces. Considering just a week before she had a day where she ate more than I pumped, it was extremely worrying that nearly half of her milk was uneaten now. Something had to be wrong. Really really wrong.
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 →
One thing that’s now become pretty clear is that being tired (due to her low muscle tone) is at the core of why she can't develop or do more. Not eating enough? It's because she gets too tired eating. Not developing enough physically? It's because she doesn't have the energy to practice more. Not sleeping longer than 33 minutes during the day? It's because she's so tired her body is flooded with stress hormones which won't let her sleep. And then the vicious cycle continues. So if we could just get her more rest then she’d improve in all three areas, right? Sigh. I wish.
Gosh this has been a week of extremes for us. Some massive victories and some frustrating setbacks. On the food front The great After last week’s post, a few people sent me to an Estonian website where you can order freshly prepared, puréed, and deep-frozen single ingredient organic baby food. It turns out that they... 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 →
We’ve got a few new problems. But they are ones I’m glad to have.
I still cannot for the life of me imagine why anyone who doesn't have a newly diagnosed baby with some sort of chromosome abnormality would want to read these insanely boring weekly updates about our lives. I feel almost guilty writing it all up, but it's become a helpful exercise for me to reflect on what went well, and what we may need to focus on a bit more.
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.)
Eloise turned 7 months old yesterday. Sadly, though, this past week has been a rougher one for her. We seemed to have moved backwards a little on the pain front. The good news, though, is that we moved forwards in a few other pretty great areas. Eloise through the months. ❤️ Steps back: Food and... Continue Reading →
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 last week, Brian and I just kept locking eyes, laughing and saying, "She is doing SO great!" Gosh it's been good for our souls. https://videopress.com/v/5DicIO1S?resizeToParent=true&preloadContent=metadata Brian has quickly noticed Eloise likes his beat-boxing. Those giggles -- we live for them. I have now seen that a number of kiddos with her deletion didn't laugh... Continue Reading →
I brought my nice camera to the hospital. Yet it sat inside my suitcase, untouched, for our entire 11 day stay. Why? Because I didn't want to remember
One major reason I write -- and include way too many details -- is to crowdsource help. We need a village, which means you! Whether you're young or old, whether you've got a special needs kid or not, whether you've ever birthed a kid and raised one or not, you can help us. How can... Continue Reading →
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 →
A week after we got Eloise's diagnosis, a wise fellow named Jeff sent Brian and I a podcast suggestion: Awesomeology (GRATITUDE) with Neil Pasricha. (Yes, for all of my [Transfer]Wise colleagues, THAT Jeff.) I was still in shock and in a deep, dark hole of grief when he sent us that fateful message. But, at... Continue Reading →
Last night, before I went in to feed Eloise for the final time of the day, I peeked in at Brian who was sitting in our office on the couch. With this current diet, things you normally celebrate with —like cakes — are out of the question. So I’d set my mind on the idea... 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 →
ere's this week's update about not feeling like a caged bird, a few of the many dilemmas we go through every day where there is no playbook (that I know of), and what a day in the life of caring for Eloise looks like.
Eloise The Tiny Fighter 