One of my sisters lives in Egypt. She’s the “fun” aunt. You know, the one who never says no and lets you do all of the things your parents do not allow? (Sorry to all of Zack’s other aunts, but we all know it’s true). She travels the world and does all kinds of scary and exciting things. The one thing it is hard for her to do is to stay up-to-date with the incredibly fun things we do here. The other day we actually got to talk on the phone and she asked me why I had not been updating my blog. How is she supposed to stay in the loop when I put off posting? So, Carie, this post is for you!
After the weather caused a switch in dates, the highly anticipated day finally arrived! It was a beautiful, sunny and HOT day. Perfect conditions for the Special Olympics. Zachary was very excited and thrilled that his homeroom class was coming to cheer for him.
One of my favorite things about the Special Olympics is how hard the organizers try to make each and every kid feel important and well, special. Zack loves getting off the bus to cheering fans. He was met by Storm Troopers again this year and, being a ten year-old boy, that was pretty much a whole lot of awesome! Zack met his coach, Mr. Tozer, and off they went to get ready for the opening ceremonies. Just like the real Olympics, all of the athletes get to parade around the field, there is a color guard, the singing of the National Anthem and the saying the Special Olympics motto. If you have never read it before, today is your lucky day. Here is what it says:
“Let me win. But if I cannot win, let me be brave in the attempt.”
A fitting motto indeed. One of the things we have been trying to teach Zack is to try hard and be brave even when things are difficult. Anything that reinforces that makes us happy.
This year Zack participated in the 100 yard dash, the standing long jump and the tennis ball throw. His events were pretty spread out time wise, so in between he was able to run around with his class and just enjoy the day.
Because it was so very hot and because Zack ran around like a maniac, Zack’s body decided he was done. When he finished his last event he went over to his teacher and sat down in his zombie like way that gets his parents immediate attention. He was not following our conversation and wanted to go home. I was surprised at how fast that change occurred. He was running around like crazy one second and then on the ground the next with absolutely nothing left.
Jim and I carried him to the car and got some fluid in him. We had his rescue dose of CeraLyte with us, but forgot his g-tube extender and syringe (I mean…come on…how long have we been doing this and we still forget important things), so we did the best we could until we got home. He spent the rest of the afternoon inside, resting quietly. It was a good reminder that we need to be extra vigilant in hot weather.
The week after the Special Olympics was standardized testing time here. We decided to have Zack opt out of taking these particular tests because his IEP accommodations are not allowed to be used. It’s dumb. There, I said it. Jim and I could not see putting him through the frustration of all of that testing only to end up with a result that did not show his true abilities. Instead, Zack and I decided a little vacation was in order.
Our very kind and generous neighbors offered to let us stay at their beautiful beach house in Ocean City, Delaware. Zack and I went to see the wild horses on Assateague Island and had the beach to ourselves. We also went to the Boardwalk in Ocean City, Maryland where we had front row parking, ate pizza and ice cream and made a pretty amazing sand castle.
It was a wonderful trip and Zack did not want to leave (neither did I). As we were getting ready to come home, Zack asked me to take a picture of us so that we would always remember how much fun we had. I’d say that our trip was a success!
Medically, Zack is still holding steady. His output is annoying. Super high many days and then randomly low. Consistently way above our target goal. His stoma made it through the month of April without a true prolapse. Woot! Currently, we are also having issues with his g-tube. It’s pretty painful and when we replaced it last night (we do this every 3 months), we had quite a hard time getting the old one out and the new one in place. I am a bit concerned there might be a bit of an infection brewing. Time will tell.
Finally, Zack and I had a talk the other night about belly pain. Zack told me (again) that his belly is still hurting everyday. I know it hurts often, but he does not always ask for pain medicine. In addition, Zack has been acting mostly fine and that makes me happy. However, when your ten year-old tells you that his belly hurts every single day, one should pay attention. I told him that we could tell his doctors about it and that they could probably help take his pain away. Here is his response. “Mom, I don’t want them to take all of my pain away! It’s how God made me and part of my body.” Yeah, I’m still pondering that one….
Hug your babies!