It’s totally normal to cry on your way to work, right? I didn’t set out to cry on my way to work, and the song that set me off is totally not a make you cry song for anyone else on earth but me. But–surprise!–I couldn’t help but shed a tear. This afternoon is my son’s semi-annual neurology status appointment. I just don’t think I’ll ever not be pukey on these days, but the good news is that I can’t eat, so hey, maybe I’ll lose a pound or two. The purpose of these appointments is to determine what has become more difficult for my son, and it’s heartbreaking to watch him get set up to fail. Remember that awful word declination? Today is the day they assess and measure declination. Crap.
The first day, DAY ONE, I drove to Children’s Hospital and listened to Odds Are by (who else?) Barenaked Ladies all the way to the hospital. All the way there on mantra. I listened hard, as if the lyrics were going to save me, willing the lyrics save him from what was on the table.
Struck by lightning, sounds pretty frightening, but you know the chances are so small. . .
Tell the bookie put a bet on “not a damn thing will go wrong. . .”
Sure things go wrong, but I’ll take my chances odds are long. . .
Lies. All lies for us on this one. Yes, the odds are long–1 in 123,000 people inherit my son’s disease, but this time, the odds aren’t in his favor. But I do hope that the odds are on his side in the way of measured loss of skills today. I remind you that skills for him are not skills in the “I can pitch a change-up” or “I can tie a cherry stem with my tongue” skills; skills for my kid are walking, tying his shoes, writing. My boy. *sigh*