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 →
“Do you think it’s all the people who have been praying? Because this almost happened right after you put up that post.” - Brian
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 →
This kid takes forever to grow a new tooth -- does anyone else have a kid who takes a month to grow one? But when we got such incredibly great news this week, it's hard to really complain.
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!
Between Eloise's tooth still coming in and her practicing all kinds of new skills, we have been so encouraged this week. Yet like most parents, we've still been pretty worn out by all of her crying and not sleeping. Thankfully, though, her fussy period shouldn't last much longer. At least we hope. 🤞🏾🤞🏾🤞🏾
1 new tooth, 1 stuffy nose, 1 pair of shoes, 1 scheduled hospital visit, 1 struggling-to-nap baby, 8 appointments, and 10 days of no seizures = a set of exhausted yet hopeful parents.
Overall, really, this has just been a fantastic week. We don't get to say that often, so I'll savor this time while it lasts.
Unlike probably many parents in similar positions, you could say this statement is true of us, "As the parent of adorable Eloise -- who is definitely very disabled -- I am so thankful every time I hear, 'Have you tried [insert unsolicited advice here]? It has saved us so much heartache and pain, and I think it will continue to. We wouldn't have made it without our virtual village." At least at this stage in Eloise's life. So many many many many things we have learned and been able to help Eloise with so far have all come from suggestions from those who read this blog -- many of whom began as total strangers to us. So let me just say a huge thank you from the bottom of our hearts.
I feel so much lighter than last week -- for so many reasons. Even though we had a short setback, we really had a lot to be encouraged about.
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.
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 Friday, February 5th. And it looks like no one will be coming home today.
Eloise The Tiny Fighter 