At the beach.. Fighting Muscular dystrophy for Riah

Out on the beach, that magical place of seashells and sandcastles, the place where you relax and think all is well with the world and nothing bad will ever happen, something did.

Riah was happily building a sandcastle and needed some water from the ocean so he grabbed his bucket and tried to get up.  He couldn't. His legs would not hold his body weight. He couldn't even straighten them out.

This time it was both legs, not just one like the time before. This time his ankles and calves were fine. It was his thighs. He literally could not straighten them and they could not support his weight.

He brushed off our questions about where it hurts and complained bitterly about how he needs water. I wanted to laugh and cry at the same time. That's definitely living for the moment- never mind that one minute your legs work and the next they don't. Lets finish the sandcastle, then we'll check it out.

So that's what we did. I got him one bucket of  water but after that he got his own. Busily crawling around on his hands and knees, wincing with pain, he finished his project.

Riah hates when we make a big deal out of anything concerning him, especially in a crowd of people, so we kept quiet and let him go. There wasn't a whole lot I could do since we were out on the beach. We could have gone back to our house, but he would've been furious and it wouldn't have changed anything. I happened to have some essential oils in my purse so I massaged his legs with them, then immediately emailed his Drs., not bothering to call since obviously we're far from home and couldn't rush him to the hospital anyway.

We sat back in our beach chairs and pretended all was normal. Riah got around so fast that the other kids and friends who were with us never noticed he wasn't walking. They were taking turns burying each other in the sand and when it was Riah's turn all that was visible was his beaming face. He looked perfectly healthy and happy. No one would ever have guessed that buried under the sand were crippled legs. 


Sweet Relief. Three hours later Riah was back to normal. His daddy took him away from everyone else and they chatted and played in the play ground and his legs gradually started working again. This time it did not take three days. Only three hours.

Three days or three hours... Either way I really want to know what's going on. Riah's  Drs. didn't seem to think the first episode was connected with his MD. But now it's happened again and its too much of a coincidence not to be connected to his muscular dystrophy.

So far Riah's muscular dystrophy is different then most cases. I like it. Good things can come from the unexpected. Bad things too maybe, but we don't know that, so we continue on in faith and hope. As weird as it may sound, these episodes are giving me a little bit of new hope because it may mean he has a different type of MD then what we think, perhaps one that has a longer life expectancy, or better life quality or one that can be better helped.

That night Riah didn't sleep for a long, long time and he had behavior issues he hadn't had in months. Showing his anxiety and fear.

He's all back to normal though, happy as ever, loving the warmth and sunshine.

Just another day in Paradise.:)