My son had his 3 year visit with his pediatrician this morning. The appointments that, for typical kids, might last 15 or 20 minutes, takes us an hour to complete. I hate these yearly visits. It’s a brutal reminder of just how….abnormal my life is. When I always seem to convince myself to forget. I […]
A gentle reminder that my life isn’t “normal” Read More »
Today was most of what I hoped it would be. A perfectly overcast, gloomy, quiet day (mostly) to myself. A day I wish I could repeat over and over again. The hours went quickly and the day ended as fast as it began. That isn’t usually how my days go. They are usually filled with
The dark side of a “good day” Read More »
My son is still struggling with being pretty sick. His genetic disorder causes him to be extremely weak, so he isn’t able to cough effectively enough to clear his own airway, which puts him at a huge risk for aspiration pneumonia. My days have been filled with smacking him on the back and helping him
Saturday can’t come fast enough Read More »
My son is sick. His birthday is in exactly 2 weeks. He’ll be 3 years old. (And no, I’m not okay with it.) He is the unfortunate recipient of a horrible genetic disorder, along with his older brother, gifted by none other than myself. The way genetic disorders work in families, each member can experience
When your irrational worry is justified. Read More »
I don’t want the weekend to end, I don’t want my role as the (only) caretaker, as shit taker, as nurse, as mom, as therapist…to begin again. On the weekends, I can stop. If even just for a few hours…my husband willingly takes them for just a little while. On a run in the stroller,
Sunday night anxieties Read More »
Step 1: Realize that you’re actually about to lose it. Step 2: Provide children with food. Full hands and full mouths will improve the situation. Step 3: Walk away. Don’t worry, they’ll follow you. They always do. But remember, their hands and mouths are busy. Step 4: Retreat into your own head, just for a
A How To guide on not breaking down in front of your kids: Read More »
I don’t like this picture. But it’s also my favorite. It’s a telling picture, to say the least. It’s not an attractive photo of me by any means, I look exhausted at best. But it’s one that means the most to me. What you can’t see from this angle is his little hand. He’s reaching
Love is the most healing force on the planet. Read More »
Earlier this week my (almost) 5 year old said something really meaningful to me. It was nearing bedtime, by far the most stressful part of the day for me. Neither him nor my (almost) 3 year old were listening particularly well, and I was definitely starting to get frustrated with them. My son recognized that
Sometimes we all need to pause and take a breath Read More »
un·be·com·ingadjective1. (of behavior) not fitting or appropriate; unseemly Oh, goodness. Guys, I’ll be the first one to tell you. My (almost) 5 year old is actually a hot mess. His IQ is somewhere between “I get it, you’re smarter than me” and “shut the heck up already”…. 🙃 But seriously. This child has a very
Don’t you just love when you think the “hard part” of your day is over, only to realize it’s actually just begun? Yeah. That’s me today. I got the kids in bed, relieved because it was a looooong day. And I have not eaten all day, so I’m pretty hungry. But then I get a
So my day isn’t going well Read More »
