Posts
Semi-Wordless Wednesday: Toddler Expressions
She never ceases to make me laugh. Here are some of today’s expressions, caught on camera. I really wish I had captured her face as she peed on the floor by her play kitchen after escaping from me after her shower. Priceless. In the waiting room at her 18 month (gasp!) appointment, giving side-eyes to…
Unexpected Grief
When Grayson was a baby, Ryan and I used to do this silly little thing where we would name his pajamas and make a big deal about which ones he was going to wear that night. These were his “Emergency Transportation Jammies” and were one of our favorite pairs. We have been passing around G’s clothes…
Thank You
Last Thursday, Grayson’s nurse was with him all day and they went out for a few hours, as they often do. They went to her apartment for a few minutes, and when they got back to the car, Grayson’s iPad and headphones had been stolen. His nurse was of course stunned and horrified, so she…
Learning How to Float
My heart is heavy tonight for a friend whose baby was just diagnosed with a fatal neurological disease. I feel like I should know what to say to her- that the words should come easily and confidently, because I’ve been in her shoes. I know how this blow feels. But they don’t come easily, and I…
Bullet Points
I’ve been struggling with writing lately- I often find myself rehashing the same topics over and over in my head, but then I try to get them down in a post and nothing new or meaningful comes out. I’ve also been occupying my kid-free time with other things- ordering pictures to (finally) hang on the…
Letters to Charlotte: 17 Months
Dear Charlotte, Another month has passed, and I can’t believe you are nearly a year and a half old! I am absolutely loving the stage you are in right now, and am trying to soak up the tiny pieces that are left of your babyhood as well as your new, larger than life toddler antics…
I'm Glad Today is Over
Today just sucked. Truly sucked. Grayson’s tube got pulled at school yesterday (totally accidentally- these things happen) and even though I was able to push it back into his stoma enough so that it was functioning properly, I knew we needed to take him to the ER to get it checked out, and more than likely…
UMDF Symposium
This past weekend, I had the opportunity to attend the United Mitochondrial Disease Foundation Symposium in Pittsburgh. Since Grayson was diagnosed, I have wanted to attend Symposium, and I am so thankful that the stars aligned and I was able to go. One of the major reasons I especially wanted to go this year was…
How Much to Say
This weekend, I attended two social events where I didn’t know the majority of the people who were there. One was a Bunco night fundraiser for a friend’s son’s baseball team and one was actually an essential oils class that I was teaching. At both events, there was a large amount of time to chat…
GI Update
I just read over some of my early posts from Grayson’s first year. Over and over again, I was worried about his weight. Until he got his feeding tube, he was less than the 1st percentile and was considered “failure to thrive” at a year old. Putting weight on him was a constant, frustrating pursuit.…