As I sat down to write tonight’s blog post, I thought about our day and felt like we had a really good one. As I looked back through our pictures from the day I thought surely I would find something important to write about. But the truth is there wasn’t anything that stood out. It was just a day of ordinary moments that for some reason at the end of the day made me feel very happy. So I’ll share some of them with you.
James joined us today. Some days he stays back at the apartment to work, and some days he is able to come with us and work from St. Jude. So it was nice to have his company today. Caleb is getting SUPER excited about Halloween coming up, so I downloaded some new games for him on his iPad.
When we get to the induction room (room where they give Caleb his Anesthesia) the nurses know to have his Play-doh and little cars ready for him to play with. The nurses make notes on what the kids like, and St. Jude has made Play-doh Caleb’s favorite thing. I love watching his creativity come to life as we sculpt things. He also just gets silly sometimes!
Just as the nurses have notes for what Caleb likes before Anesthesia, they also have notes for what he likes after. This includes what he would like to eat and drink in the recovery room. From what I gather most kids ask for pretty much the same thing every day, but not Caleb. He changes his mind and keeps the nurses guessing all the time! A favorite choice of his is Apple Juice and Goldfish crackers. Many days I bring him snacks from home that he picks out in the morning. But today he chose Oreos and Chocolate milk!
We have given Caleb many nicknames during this process. Right after brain surgery we called him “TT” (short for Tiny Tyrant) because he ran us all over his hospital room with his demands for food, toys, etc. It made us laugh that this little kid had us running all over the place. Most recently we started calling him “King Caleb” because we come home from St. Jude and he rests in my bed with a full tray of food. It’s his favorite thing to do now. We call him these names affectionately of course, because spoiling him is the least of our worries right now. And he knows when he can get away with things and when he can’t. HA HA!
It rained all day today and we were not able to go outside, so of course we played with more Play-doh. But I am sneaky and I try to get in some “learning activities” whenever I can. Today that included learning with Play-Doh!
I told Caleb I had to stop playing to make dinner and he asked if he could help. So I said sure! We made spaghetti sauce in the Instant Pot together and he actually did a great job. It took me 3 times as long to let him help, but we had a great time and he enjoyed learning how to measure, dump in the ingredients, and stir the sauce.
Right before dinner it was time to pick up Tyler from school. Caleb gets very excited when it’s time to pick up Tyler, and Tyler loves to see Caleb too! In fact Tyler got mad one day because Caleb didn’t come with me and he really missed him. I love that these two are inseperable.
The boys ended their night with some treats from Grandma (for Tyler’s good report card he got last week).
Caleb also took some time to draw art work for Thank You cards. James and I are slowly but surely getting to thank some of the people in our lives who have been so kind to us. We have a long list of all the generous gifts people have sent, but it’s our goal to eventually get Thank You cards to everyone. It still seems impossible to express our gratittude in words, but little but little we are trying.
So, that was our day. And although ordinary it was a pretty darn good one. Why does it sometimes take a tragedy, a death, or in our case a bad diagnosis to make us really appreciate the life we have? I’m trying to find some positive in this situation so if anything, it’s that. I am thankful for every moment, every laugh, and every memory. I feel like I’m “banking” all these moments in my mind for the hard days ahead. I know remembering all of these happy moments will be what carries me through.