This weekend was a busy one once again! It started Saturday with the Fall Festival at Tyler’s school. Tyler talked about this for days leading up to it! He was so excited to see his friends there, and told Caleb he would introduce him to everyone. Tyler did see many of his classmates! They played on the bouncy houses, enjoyed all the little games, and played on the playground too. They had a wonderful time and the weather was amazing. It finally feels like Fall! The funny thing is in Florida we don’t really experience much of a “Fall”, so Tyler is very amused by the leaves changing colors. He points it out everywhere we go. This is his first real “Fall” and probably my first real one too!
After the Festival Saturday we ran some errands. Just as we were discussing where to go to dinner… maybe Chili’s, Outback, Texas Roadhouse… Caleb chimes in and says “Hey, I don’t have my buddy in so I can go play at Chick-Fil-A!” By his “Buddy” he is talking about the needle he has in his port all week long, and when it’s in we don’t let him play on the playground because we are afraid he’ll bump it. So even though James and I had our minds on a “real” dinner, his sweet little voice being excited about going to Chick-Fil-A was too much. Chick-Fil-A for dinner it was! And Caleb was soooo happy!!!
On Sunday there was something called “The Big Bounce America” that came to town. We bought tickets and I wasn’t sure how great it would be but I knew the boys would have fun. Actually, it turned out to be REALLY fun!!! It was a whole bunch of bouncy houses, slides, ball pits, and obstacle courses including one GIANT bouncy house. You got to go in the big bouncy house for a 1 hour time period and there was a DJ (Yes, a DJ in a bouncy house HA HA!) and more obstacle courses, slides, etc. Even James and I felt like big kids running and jumping around. It was fun for all of us to let loose, and as we tend to do on the weekends, forget about everything in our lives going on. We just had fun and made great memories!
One thing that has been amazing all weekend once again is how close the boys are! Even though Tyler doesn’t fully understand everything that is going on, he takes care of Caleb. He asks him to watch his iPad with him and puts on things that Caleb will want to watch. They share toys nicely now. Something has changed and I can’t put my finger on it. Maybe Tyler is getting older, maybe he is learning more responsibility at school, but overall I think it’s just his 5th sense about what is happening. He doesn’t understand it all but he just knows that as Caleb’s big brother he is going to take care of him. I woke up to find them playing together by the window. They always like to pretend they are in little “fort” like places so I guess the window shade was enough to make them feel like they were in their own private space!
Last Thursday evening Caleb’s hair began falling out. As the weekend progressed it seemed to be coming out at a more rapid rate. In fact Caleb thought it was funny that he could just reach up and pull a chunk of hair out whenever he wanted. Once he saw how much this freaked me out he did it more and more and laughed as I panicked! But by the end of the weekend his hair was everywhere… his bed, his pillow, our couch, everywhere!! Up until now Caleb has said no every time we ask him if we can shave his head. So we didn’t push the issue and just let things happen naturally. But tonight even Caleb had enough of all the loose hair (mostly because it kept getting in his mouth)! James asked if he would like to shave it and he finally said yes!! So as a family we went outside our apartment door and shaved his head. I only cried for a minute, until Caleb started laughing and I realized everything was going to be ok. Tyler was a little scared at first too, mostly because he started to think he was going to lose his own hair. So I told him that would not happen. I explained to him that hair doesn’t make you a different person, and Caleb is still Caleb whether he has hair or not. Once he saw Caleb laughing he was all right with everything. I knew the hair loss was coming and I knew how hard it would be so I almost feel like a weight has been lifted now that it is done. It actually all happened faster than I imagined it would!
The funniest part about the hair talk is James kept telling Caleb he would look like daddy. We also told Caleb that some day his hair will grow back, so this is just for a little while. So he looked at James and said “well then why won’t your hair grow back Daddy?” Let me tell you, you can’t get anything by this kid. He put two and two together and realized that if his hair was going to grow back why won’t daddy’s? So we had a good laugh and we said well, Daddy lost his hair for a different reason so don’t worry about it HA HA!!!
As I go to sleep tonight I could not be more proud of these 2 kids. Tyler continues to make friends and get comfortable in a different place. He also continues to step up to more to protect his brother and take care of him. Caleb is the most brave little boy I’ve ever seen. Instead of being scared of the unknown he has a huge curiosity for it. James took pictures of his head because he wanted to see what he looked like. And when he saw himself he had a huge smile, and his big brown eyes lit up, and he thought he looked really cool! I’m so proud of him, because I think he looks pretty cool too.
As I look at him with his scar from his port surgery, his scar from his brain surgery, and now his cute little bald head, I think about all the stories he will tell some day about his battle scars. Before this I would have looked at a child with cancer and thought of them as sickly and weak, but I look at Caleb and think about how strong he is. He’s so incredibly tough and I hope that all of you will see him that way as well. Don’t feel sorry for him, feel proud of him, because he is one amazing little super hero!
This was a beautiful “read”. Tyler sounds so mature for his age, and very empathetic. You two are wonderful parents.
Thank you for sharing Caleb’s story with us. All of you are SUPER HERO’S.
He is such a brave little soul. And so are you mom and dad and Big brother. You guys keep fighting and we at home will keep praying…..