Last night, we had some crazy storms come through. Like, hurricane force winds type of thing. So, that was fun. It didn’t end up hitting our area until around 12:30am, so I pretty much stayed up most of the night. It was a night full of emergency alerts and stress, and I woke up today […]
The storm after the storm Read More »
Things have been…ugly bad lately. Summer home with all 3 kids has been impossible. And it’s only been 2 weeks. It’s my oldest in particular that’s challenging me the most. He’s struggling with the transition between school and summer, and he’s reflecting in his behavior. I’m doing the best I can with it, but I’m
An unwanted struggle Read More »
Things have gone from bad to worse, and I’m absolutely exhausted. Yesterday was a day that must’ve come straight from the brains of hell, delivered just for me. On Monday night (but really Tuesday morning), Phoenix, my 6 year old, who has been struggling with an ongoing GI issue, decided to throw up a ton
Yes, it did get worse. Read More »
Do you ever have a day so bad that you just know it isn’t going to get better? Not because you’re being negative or in a bad mindset, just because…it is what it is. But it’s bad anyway, so you figure…might as well do everything unpleasant right now and double down on it because it’s
There’s a certain desperate loneliness that being in the hospital has to offer. It feels so dark and gloomy and isolating. It seems like I hit this wall with every hospital stay. Around the third day I just feel so…alone. It feels like the entire world suddenly weighs a billion pounds more, and it’s all
A heavy, lonely burden Read More »
Remember that bad day I wrote about? Well, worst fears have in fact been confirmed. Unfortunately, I write this blog post from the (un)comfort of a hospital room, once again. My 7 year old has been admitted for left lower lobe pneumonia as well as aspiration pneumonia. Not exactly how I wanted to spend my
Another hospital saga Read More »
Yesterday was a long, long day. We had our regularly scheduled visit with our favorite doctor. Every few months, we go to see the neuromuscular doctor who has been basically in charge of our care for years now and was the one who initiated sending us to the NIH. These visits are always intense, as
It doesn’t matter why. It just is. Read More »
My littlest of loves just got taken back to the OR. We left the house at 4am to get to the hospital by 6. It’s 7:30 now, and they just took him back. It was a smooth and easy morning. The easy part is the before. The rest of our day isn’t promised to be
Surgery days and helpless hearts Read More »
This whole summer break thing is just so not it. It’s been a week. And we’re all going insane. Having 3 kids not only just with physical disabilities…but also with 2 of them having pretty severe ADHD amongst other things…phew. It’s kicking my ass. Last night at like 8:55pm, I half jokingly, but half not,
Burnout, but no breaks in sight. Read More »
Completely unfazed and blissfully happy, my 5 year old son just got taken back for his 3rd surgery of his short life. He knows what’s about to happen, we’ve talked through it all, and he’s ready for it. An hour and a half procedure to close 2, possibly 3 hernias. He doesn’t handle anesthesia well,
When you wish you didn’t have to be so strong Read More »
