D DAY

For us, this means Diagnosis Day in that 9 years ago today, we were told Colby had Spinal Muscular Atrophy. Huh, spinal what? Never heard of it. (Still wish I'd never heard of it if you know what I mean.) By the time the neurologist finished telling us Colby's prognosis, I was numb. I'll never forget the cold, blunt and matter of fact way he told us what he thought Colby had. Louisville hasn't exactly been blessed with an excellent crop of winner pediatric neurologist over the last couple of decades, just sayin'. Also, the "we" I'm referring to is Colby, my sister-in-law and myself. The ex was too much of a scared weenie face to go to Colby's appointment that day. The next few days after that are a bit of a blur. I do remember thinking, this couldn't be happening, no, not Colby. Not my kid. This kind of crap happens to other families, not mine. The neurologist said there was very little that could be done for Colby and that more than likely he would die from a respiratory infection by the time he was 12 or 18 months old. Oh really? I didn't know how, but I was hell bent and determined that Colby would live to be 2 years old. That goal seemed to be out of our reach based on what we were learning at the time about SMA. But thanks to God, or karma, or the universe or dumb luck or whatever force it was that put us in touch with Cincinnati Children's Hospital and other SMA families who were also beating the odds, here we are, 9 years later. I'd love to wheel Colby into that neurologist's office and say hey pal, check out this 9-year-old SMA Type I kid here. And oh by the way, screw your statistics, you ignorant jerkoff. I do believe faith, love, knowledge, support and sheer determination have been kicking your stat's ass for years now. Furthermore, through the good days, great days, horrible days, and really horrible days, I wouldn't change a thing. I don't look at Colby and see what he can't do. I only see what he has done, beating the odds every day, every month, every year he continues not only to survive, but thrive. I'm so very proud of my sweet boy Colby Michael Russ. Can't wait to see what else he accomplishes in the next 9 years!

Colby had his 1st "real" day back to school today. The bus was supposed to pick him up at 9:15 but somehow that didn't happen. So glad I called last week and got that all lined up with Transportation (grrrrr.) So I took the nurse and Colby to school in the van. I only stayed a few minutes, just long enough to make sure Colby was settled in class and that the nurse was comfortable. The bus did pick them up at school and yes, I was there and followed behind the bus in the terdmobile. Well, it was the nurse's 1st time being on the bus with Colby. She may have needed something. Colby had a great day at school. Thank goodness. I was kind of worried since he didn't go to school at all last week. Sometimes it's hard getting back in the school groove. So tomorrow, if all goes as planned, the bus will pick up Colby and the nurse for school at 9:15 here at the apartment. Then the bus will be at school and pick them up at 1:15. So I'll have some time to myself to run errands or get stuff around here done. Woo hoo, gonna party like crazy for a whole 3 hours on a Tuesday morning.

Did you watch Diane Sawyer's interview with Gabrielle Gibbons and Mark Kelly? It was amazing. I cried tears of joy. I cried tears of heartache. I try very hard not to be a jealous person. First of all, it's a very ugly, petty emotion and I don't think time should be wasted on it. Secondly, I think I've actually been pretty darn blessed in my life. I could have it so much worse. However, as I watched the Gibbons/Kelly interviews, I realized I was jealous of their relationship. I was thinking, how and where do you get that kind of love? Based on my past relationships, I obviously don't have a clue. I'd like to one day find someone who would love me as unconditionally as Mark Kelly does his bride. He takes that "in sickness and in health" thing really seriously. You can tell he's very proud of his wife, as he should be. He has always believed in her, always kept a positive attitude that she would get better, and I believe his attitude has helped her in her recovery a great deal. That's what I want. Someone who, if life were to throw us an unexpected, unbearable situation, would love me and have faith in me through it no matter what. I can see it now, Dear Santa, you'll never guess what I'm asking for this year…besides a hubcap for the van, of course.