Weekends Present and Past

Well, yesterday, Jojo never left the bedroom. He played computer and watched a little TV. He refused to go out in the living room or ride his wheelchair because he said he was sick. Today, when he woke up, he said "Mommy, I'm not sick anymore." He sounded a little congested in the nose and I told him his voice still sounded different. He told his Dad on the phone that his voice changed, but he's still only 5. (He was very fascinated when Austin's voice changed and got deeper when he turned 15.)

Except for closely watching Jojo this weekend, nothing exciting or extraordinary happened. So, I'm posting some pictures of Jojo on the beach from past Labor Day weekends. These pictures are for Junior, an amazing guy, whose blog site featured all kinds of cool ideas about the beach last month.

Labor Day Weekend 2007, Pensacola

Jojo stayed on the beach just long enough

to take these pictures, then we had to rush

him back to the hotel. Very stressful.

The rest of the weekend, Jojo stayed in the hotel room.

Labor Day Weekend 2008, Galveston
Jojo stayed on the beach all of 20 minutes.
Then we went back to the hotel and packed up
to go home to get away from Hurricane Gustav.

I can honestly say from experience, that the beach is one inaccessible vacation for a child with SMA (one with type 1, at least). It's too hot, too humid, too far away from necessities (cough assist, etc) unless you're willing to take a huge wagon to put these things in. A beach wheelchair is seldom available, and if it were, it would not recline to accommodate the child. The water is so unpredictable, you don't know if the next wave will reach the child's face whether he's lying on the sand or in the arms of his Dad/Mom. I'm pretty sure other SMA families had better ideas or found a way for their children to enjoy the experience, including building a sand castle.

As for myself, I'd be fine if we never went back to the beach. But wait...We applied for the Kids' Wish recently. And we asked Jojo what was his wish and where he would like to go...oh, yes...the beach!