3rd Week at Camp: TIBET

Wow! This was a very hectic week with action, adventure and drama. At home, the week was filled with activity and wonder. This week the theme at school was Amusement Parks! My teacher brought in some books, images, and created an interactive multimedia experience! I went into a ride through the Six Flags demos, and loved the Green Lantern experience! I don't know if I would REALLY get on it (it looked a bit high...) but the speed and the wind would be something!

My therapists came in and I am showing off how I select colors with my Tobii. I also make certain that the new SLP gets acquainted with my family by watching the slideshow. After he does, then we can do whatever he has on schedule. I was a bit disappointed that the PT did not have my new wheelchair headrest this week, but she made it certain that next week she will have it on Friday as the assistive technology guy will come with it.

At camp, I discovered Tibet. I found out where Tibet is, explored a Tibet exhibit at the museum, and created some Tibet-oriented crafts. I discovered the importance of tea, the traditional festival, Tibetan attire and colors (red, yellow and deep blue), and their spirituality through meditation. It was an "enlightened experience". This week was sponsored by my friends in Tampa: Lynnette and her father Antonio. Thank you guys! This was a virtual far away experience!

Monday was a laid back chaotic day. The theme established at school was amusement parks, since that's one of the places people like to go to when they are in vacation time. It all seems interesting... At camp, they began the Tibetan week explaining about Tibet's location, high in the mountains, the people, and their use of bells. When I arrived we went to a gallery walk and we explored a Tibetan tent, clothing, and teapots. While the kids napped, I painted a bell in copper color and the teacher's assistant gave me a briefing about what they discussed of Tibet in the morning. She read me a book, too. After that I just wanted to watch the kids and rest a bit. When I went home I fall asleep quite fast.

Tuesday was a day of running here and there. In the morning my class went on without any drama, but upon heading to the museum it was obvious we were late and we did not arrive on time so we missed the Planetarium... So we waited in the classroom until the class arrived. Turns out we would have missed it anyway because they went in earlier than usual, and they had also walked the gallery. I tried to start the day's project but I just settled for watching the other kids nap. I was mad and frustrated and cried for a bit... Mommy gave me the "big girl" speech again... and eventually I stopped. The new project is creating an offerings box, so I had to paint a box and decorate it, so then I can put something I really value inside. Tibetans leave these offerings at the temples. I was about to start painting but I changed my mind. I let Mommy know I wanted to do that at night. She scolded me for that, but I did not care. Besides, I prefer to watch what the other kids do... I can paint and decorate the box later when I'm alone in my room... And so I did. Nurse Carol did not come for the whole week, so Mommy helped me with the crafts. That was an added plus... I always treasure spending time with Mommy.

Wednesday was an interesting day... Something happened and everything got late during the morning. My nurse could not arrive, Daddy did the respiratory therapy and bathed me, my teacher had to wait a bit until that was all finished... But in the end the day was not so bad after all. We kept discussing rides at class, and I experienced some thrill rides through videos and demos. After that, Mommy and Daddy prepared Kali and me and we all went on to the museum. I stayed inside with Mommy while Daddy was outside the classroom with Kali (although he came in and out to check just in case). When I arrived I went to my Planetarium special appointment. That was a blast! I enjoy so much watching the stars! And I keep learning more about them! Mommy was just happy because she says the voice of the narrator was that guy, Ewan McGregor, and she loves him. That was a long show, and when I arrived to be with my classmates they were ready for a nap. I just watched over them, Daddy gave me food, and then Mommy read the Tibetan exploration book to me. That took care of my doubts about the costumes and I learned about the crops and animals they use for trade. Soon the day ended, and I went home. I had a long nap upon arrival! The heat outside has been unbearable! Mommy has not been able to take me for a stroll around the garden of the museum just because of it.

Thursday was a tiresome day. My new SLP came early and we worked on my use of the screens... Commands, commands, commands... When will people get I do what I want when I want? Well, after a bit of fooling around I comply to work some, and showed him I know how to use my colors screen. After that I took a small nap, and was ready to go to camp. Over there, we practiced our play in the Auditorium. I found out I would be the dragon! So my craft for the afternoon was to my dragon headpiece. I gave my nurse and mommy a small scare as my numbers went down because of a piece on my vent that broke... but I never feared with my team around nothing bad would happen to me. Nurse Mashaela found the piece in my bags, mommy made my numbers go back to normal with swift ambubag action. Since it was all hardware issues, I had no issues. Life goes on. After THAT show was over, I gathered all the stuff needed to complete my projects, waited a bit until nap time was over, and went home.

On Friday morning, my SLP came in early and gave mom a briefing on what we have done so far. I overheard that mommy may be adding some screens to my communication device soon... and that I will get to know verbs close and personal! My PT came in and we did our usual exercises. I got ready for action and headed to the museum. When we arrived we went straight to our classroom, but then discovered that two kids were sick, so we had a slight change of plans. Mommy took me down to the Auditorium and I enjoyed the "serious" Tibetan show while the kids upstairs finished some crafts and prepared for our show. Daddy and my sister Kali met me at the Auditorium, and all were very surprised at my keen interest in Tibetan music. While I watched the performance I was paying keen attention to the guy and his song... Nurse Mashaela found it funny and got sleepy in the way, but I loved the show. I didn't fall asleep at all! Some of the kids from another class got to know about me, and they will be praying so there is a cure for SMA soon! They want to see me standing and running! And you know what... I am happy with what I have, but my deepest secret wish is to stand and run too.

By 2:30 my classmates came down, I dressed up as the Rainbow Dragon and went on to meet the on stage. The power ramp was misbehaving a bit, but finally cooperated to let me through. I went on and met my peers on time. That was so cool! I crossed the stage side to side three times, and each time I crossed they would change positions... I think they were doing some yoga demonstrations for meditations... After the third stance, it was a wrap! I faced again the wrath of the power ramp (and won the battle), and went back to my favorite place in the back of the Auditorium (I can see everything very comfortably from there).

I kept on watching the whole show until the end. No sleep this time! I certainly loved the Tibetan theme. At the end of the show, we went up to see the exhibition of our artwork, but the hallway was completely packed. Since I could not go into the classroom because of my nemesis (germs) I had to stay in front of the Buffalo until my emissary brought back my crafts so I could take them home. With that, I said goodbye to everyone and went home.

So, the week ended and the weekend arrived. I am beat! A two-day weekend is not enough to gather strength! What were they thinking when they created weekends? Saturday went away in a blink, and now Sunday is almost over... At least I can't say I am sad or bored... I have met new friends, and I keep on experiencing the love of so much people! The biggest blessings are indeed the simplest things in life!

Next week I have an appointment with the new endocrinologist on Monday, and on Tuesday I'll be back on camp to learn about CUBA!

God: Thank you for taking care of me and of those who are around me. Thanks for so many good things! Grant me strength and courage, so I can go on as I have so far, and use me as You will. This time I ask you to take care of so many kids around the world that don't even have a mom or dad, and that fight for living on their own... Take care of them as you have taken care of me. Let them find shelter and food and love. Open the eyes and the hearts of so many to make it so... Amen.