We had our church fair this weekend. That meant...
candied apples, crawfish pistolette and egg rolls. Yummy!
Watching Daddy play a game
Collecting prizes
Time for some hair spray to color Joseph's hair orange
This year there was even a petting zoo.
The mule, however, freaked Joseph out because "his mouth was so big,"
that Joseph did not want to be close to the animals anymore.
Joseph said "No" to the camel's attempt to give him a kiss.
This year, Joseph is old enough to understand the relevance of 9/11. He actually learned about it himself as he watched a level on LBP2 yesterday that played a tribute to 9/11. He didn't have a lot to say about it. He was a little sad, I guess. And then he went on to play LBP2 for 10+ hours.
This weekend, Joseph mentioned SMA two times. I don't recall anymore what we were talking about yesterday; I just remember him making a remark, "Why do I have to have SMA?" And I said, "I don't know, but, don't let having SMA define you and your life." Then I went on to remind him of all the good things and blessings he has in his life and all the wonderful things that he is able to do.
Watching Nickelodeon this morning, and seeing those young people promoting the Worldwide Playing Day, Joseph exclaimed, "Now what am I supposed to do on that day? I have SMA." We then thought about things he could do like ramming his wheelchair against some cans, having a race and an obstacle course. I hope we really get to do those things on September 24, knock on wood. I am so forgetful that it's unreal.
Joseph took a day-off from playing LBP today. He watched some Nickelodeon shows, checked out
the new island in Poptropica and visited the Moshi Monsters, Webkinz and Club Penguin websites.
He saw a couple of fun ideas in Webkinz that we ended up doing this afternoon.
The blueberry bumper car idea that one of the Webkinz members submitted:
He insisted on shooting a video of his bumper car, so here it is:
We also made a Webkinz hockey game, another idea from a Webkinz member.
Platypus versus polar bear, with camel officiating the game.
Joseph also played stuff toys with Nana, which he really enjoyed. Then the three of us, Joseph, Nana and I, played a card game - Old Maid. Joseph ended up with the Old Maid card 2 out of 3x. He was not thrilled about that. And that's our Sunday. Now we're just waiting on his Daddy to get home and watch the Cowboys play.
It seemed like in a blink of an eye, summer came and went. Joseph spent most of the summer cooped up in the house, safe from the heat and the humidity. He did go out on a few outings like a couple of visits to the library for their Summer Reading series...
He saw a couple of movies: Kung Fu Panda 2 and Cars 2.
He went to the Circus for the second time in his life and actually sat through the whole show.
We made sure that we got floor seats so that he could SEE the show.
The first time we took him to the circus, three years ago, we only stayed for 20 minutes. It took us an hour and a half to get there, and Joseph decided he wanted to go home as soon as we got to our seats. We convinced him to stay a few minutes just to see the elephants. We couldn't blame him really; the accessible seats were up on the middle level and with him reclined on his wheelchair, he could not see the show very well.
This time, though, he had an optimal view of the performers and the circus animals.
Motorcycle up in the air
Tight-rope walkers
Hanging by the hair
My personal favorite
This summer, we finally managed to take Joseph to the dentist. I felt bad for waiting until this time for him to see a dentist, but somehow it was never a good time for us to go before. Add the fact that I wanted to take Joseph to a pediatric dentist who has experience with kids with special needs. Such dentists are two hours away, meaning, both Brady and I have to take off from work to make the visit. Anyway, we had a good visit and Joseph did wonderful. He was very nervous and unsure of what to expect in the beginning, but he handled the tooth-cleaning well and even when the dentist opened his mouth wide.
For most of the summer, at least the last two months, Joseph was consumed with Little Big Planet. He started by watching Youtube videos of the levels, then playing vicariously through us. It has only been three weeks or so that he's finally able to play the game himself. We are all very happy to be "free" again. For Joseph to be able to play the game when he wants to, without waiting for us to be ready. Now, we can actually do other things while sitting with him as he played. Brady is now able to watch old episodes of Western shows. I am able to surf the 'Net again or read a book while sitting by Joseph. And while the Versatility device is awesome, it is still not sufficient for Joseph to play the game 100% by himself. I never knew how much coordination and dexterity and quick thinking it takes to play a video game until I played PS3 two months ago. There are so many buttons to press and sticks to move around. With the Versatility and the adapted switches, Joseph can control the buttons for X, circle, triangle, square and left stick. Sometimes he can also control the up or down or start button using additional switches. Most of the time, though, one of us presses the up or down or start button, or the L1, L2, R2, or press down the right or left sticks, or move up the left or right sticks to make things smaller or bigger. THERE ARE SO MANY BUTTONS TO OPERATE. Thankfully now that Joseph is controlling most of the buttons, Nana and Ms. Frances are now able to help with the other buttons, therefore giving Joseph more game time without having to rely on Brady or me. And we all type the text for him to make it faster and easier for him when he is playing. Believe me when I say that whatever text/chat appears on the screen, it is all from Joseph. We only type for him.
It has been raining here since Saturday morning. Everybody is happy to finally get some rain. The ground was so dry that it absorbed much of the rain up until 3pm today. I took these pictures at 12:30 this afternoon.
Last night, Joseph said good-bye to a friend. It was sweet and sad. I imagined that it was like making a friend at a summer camp and then saying good-bye as the camp ended. Maybe they will meet again next year or maybe never.
Except this friend was one that Joseph met during our first week of playing LBP2. Somehow they began seeking each other out whenever they're online, hanging out together in each other's moon or pod: Taz making levels while Joseph patiently watched and then playing the level over and over until it was perfect; Taz creating an object for Joseph to use; or the two of them playing levels together then returning to their moon to fight each other with weapons they created or copied from others.
Taz was the very first friend that Joseph made on his own, granting that I typed his words for him. And Taz was the one he told his secret to: that he couldn't play the game himself and that he needed his Dad or Mom or brother to play for him. And so Taz would ask him, "Who's playing now?" We knew that after Tuesday, Taz wouldn't be able to play LBP2 for awhile. So as the time came to say goodbye, they took pictures of their sackpersons together, made sticker of the picture, and took some more pictures.
I was very sad to say good-bye. But that's just me being sentimental. And Joseph, he's already moved on. Today, his Daddy said that he started playing at 10AM and had to be talked to quit at 8PM. He played with Sky and other kids and just before he took his shower tonight, he was playing with some French-speaking (writing) kids. Can I say it again, how absolutely glad his Daddy and I that it became possible for Joseph to play Little Big Planet on his own?
This is a snap shot of our life with Spinal Muscular Atrophy. After we found out that our son Joseph (Jojo) had SMA, we grieved. We grieved for all the motor milestones that he would never meet, and for the life that we dreamed and visualized for him. It is tragic to see our child not being able to move much, and then to watch as he progressively loses even those minimal movements and skills that he was born with. But we learn to adjust and keep the focus away from our grief. Because really, he is not fundamentally different from kids his own age: he learns stuff, he knows what he wants, he rationalizes, he whines and occasionally throws a tantrum, and he knows how to wrap his Mom and especially his Dad around his little finger.
