BLOGGING EARLY WHILE MY BRAIN IS STILL WORKING

August is designated as SMA Awareness Month, and I feel like I've done a big fat zero nothing in helping to spread the word. But then again, hopefully my blog continually helps to educate others on the everyday triumphs and heartbreaks that come along with this disorder. There's no way I could blog about SMA and simply give the facts and statistics associated with it - too emotionally tied to it for that. For now, let me just say this. SMA is a horrible, devastating diagnosis. However, I refuse to let my mind "go there" in relation to what SMA has taken from my son. I simply can't do that, or I would have given up and had a breakdown years ago. Instead, I choose to focus on any good or positive I can find. Not only is Colby alive and beating the odds, he is thriving, and that's more than I could ever ask. I'll work on some awareness stuff on the rest of my blogs this month.

 For now, I'll update you on what we've been up to lately. Our weekend was good. I watched a lot of golf. And yes, it was by choice. The PGA tournament was here in Louisville, so that was an extra incentive to watch. Plus I'm slightly weird, I just like to watch golf. Saturday we had no nurse, and that was fine with us. After doing the Cincinnati trip on Friday, Colby and I needed some down/chill out time. I did manage to give him a bed bath. Really just wanted to get his hair washed. It can get pretty funky after a couple of days. I think the only other time I left the apartment was to go to Mass on Sunday. Colby didn't leave the apartment all weekend, too hot and muggy to get him outside. But again, needed some down time and needed to get stuff done around the apartment, so that was fine, too.

We did light our candle for SMA Awareness on Saturday night. There is one Saturday night designated for this in August. Anyone who wants can light a candle as a way to remember all the angels who have passed from SMA, and also to honor those who continue to fight the SMA battle. And trust me, it is a battle/war. It was emotional and powerful seeing on Facebook all the candles lit from different families. I want to thank my friends who took the time to light a candle. It means a lot to me that you cared enough to do that. Maybe next year I could get my act in gear and arrange a group candle lighting. Note to self for next August.   

My mom came over Tuesday. We took Colby's wheelchair outside and cleaned it. I'm talking take an old toothbrush and clean every nook and cranny clean. Amazing how filthy that chair gets. It was nasty gross, with what I assume was a combination of food, dirt, slobber and various other unpleasantness that has collected on it over the last year or so. Looks fantastic now, though.

School in Colby's school district started yesterday, but of course he didn't go. I'd estimate Colby to be 80% recovered from surgery. He has done amazingly well, but not quite ready for bumpy bus rides, sitting up all that time in class, etc. I'm thinking I'll send him the last week of August or right after Labor Day. He is able to sit up 1.5 hours easily, sometimes up to 2 hours. Obviously he needs a little more time to heal and build up his sitting tolerance again.

Okay, that's it for now. I need to get a shower before the nurse gets here at 8:00. Not sure what we have planned for today. If the weather is decent we'll get Colby outside to practice driving his chair. Or in his case, practice spinning in 1000 circles. Kid drives me nuts. Why in the world doesn't he want to drive forward, explore his surroundings, decide for himself where he wants to go?! He obviously doesn't wish to do those things. So if spinning in circles makes him happy, I guess I'll let him do it. Lord, give me patience, and please hurry!