TOO MANY TEARS TODAY

I know we have great things going on in our lives right now. Colby has started a wonderful new adventure at school - Skyping! I'm so excited about this I can hardly stand it. Colby's speech therapist and I have been kicking around this idea for a long time now. We finally found a school/teacher/class willing to participate. Actually it's my niece's school up in Indiana. Last week they tested it on Tuesday, and on Thursday Colby was having social studies class with another school 100 miles away! I want Colby to have exposure to a more "typical" classroom setting. Hopefully we'll be able to build on this. First, let's just get the technology working properly. Next, I want Colby to work on communicating more appropriately on eye gaze - talking with peers, asking and answering questions, etc. Then eventually we can work on getting the assignments from the other school and incorporating them into Colby's curriculum and eye gaze. We have other good stuff going on, too. We were able to spend time with family over the weekend. My brother and his family came down Sunday so we could celebrate the February birthdays. I'd like to meet the person who invented red velvet cake. First I would give them a hug because it's so incredibly yummy delicious. Then I'd slap the piss right out of him/her. It's a hard cake to make! More like a science fair project than a recipe. Buttermilk, cocoa and food coloring paste, vinegar and soda fizzing. Ridiculous. Next year I'm going to buy a bag of Oreos, throw them on the table, sing Happy Birthday, and be done with it. Who am I kidding? No I won't, I'll make another red velvet cake I'm sure. And how about this weather, huh? Mr. Sunshine has shown his beautiful face. The yucky, slushy snow is gone. Warmer weather after a freezing, long winter, that's a good thing. I've had dinner with a couple of my gal pals this week. Good food, great drinks, wonderful fun and conversation. I always look forward to a girls' night out. My diet is blown completely out of the water for the week, but oh well. I must say the Texas Roadhouse and Beef O'Bradys was well worth it.

But honestly, I'm in a crappy mood. Haven't been able to shake it the last couple of days. I think SMA is just too all-consuming at times. I'm sure it's the same with diabetes, Crohn's, cancer or any other chronic illness, but of course SMA is the one I deal with most. And it's certainly the illness that pulls on my heartstrings the most. There are a lot of really sick SMA kiddos out there right now. I don't like getting on Facebook and seeing words from SMA parents like fever, x-rays, not feeling well, heading to the hospital, collapsed lung, intubation, etc. Some of these families I'm close to, some I don't know too well. But I hate it for all these families. I know how hard they work to keep their kids healthy and how stressful and exhausting it is to have a sick SMA child. It sucks, period! I'm thinking of and praying very hard for these kiddos to get better soon. Plus we've noticed that Colby has lost significant strength and motion in his right hand and wrist lately. You know, his driving hand. He's been having trouble driving his power chair because of this, and it absolutely breaks my heart. And it pisses me off. And it frustrates me to no end. But what can I do? Not much, and I fucking hate that I can't just fix it for him! I've talked to his PT about it. All we can do is regroup and figure out another way for him to drive. How many times have we had to regroup and rethink his driving due to muscle weakness and decreased motion?! Too many to count! I know that Colby's hand weakness is far less critical or life threatening than what these other families are going through. But I'm devastated at the recent weakness in Colby's hand. I  can't help it. Nothing that anyone says is going to make me feel better about it. Not right now. I just need some time to be sad, mad, discouraged and upset. Then I'll pick myself up, put on my big girl panties, and we'll figure out a new plan. Just not tonight. Luckily for me there's a big tub of 3-flavor ice cream in the freezer. Time to pop the lid, grab a spoon, and get busy.