Hearing my husband utter these words was almost more devastating to me than the experience of feeling and living them myself. The phrase “shit’s gettin’ real” always makes me giggle because, hi, I’m 12, but this time and in this context, it’s not so cute.
Monday’s neurology appointment wasn’t the worst ninety minutes of my entire life. I even made it all the way home before ugly crying, which is some kind of fucking victory right there, people. It’s possible I misted up a time or two during my son’s functional assessment, but I covered my tears like a boss because I am the mom. The for reals tears didn’t come until I relayed the information to my husband later that evening. Watching his face soften visibly as the wheels of acceptance turned inside his head kinda broke my heart. It’s been obvious to me that I’ve been more the realist, the pragmatist about our son’s diagnosis. Not that my husband is in denial, not that, no. He’s just been less diagnosis-focused than I. We cope with things very differently, Tom and I do. Generally speaking we complement one another well. Match.com or eHarmony would NEVER have connected us, I mean really, we had but one single CD in common when we met (Cheap Trick’s Greatest Hits for those of you with inquiring minds), but we make a darn good team. I’m the fly-off-the-handle one–I know, right? shut up!–and he’s the guy on simmer. My husband is super-cool until he’s not, and then he’s Pissed with a capital P right now, no lead-up. That unpredictability can be challenging, but it’s so infrequent it’s almost not a thing. My periodic explosive nature is of more routine consequence. Hearing him say “It’s starting to sink in now” stabbed my already breaking heart, and there ain’t duct tape long or strong enough to repair it.
Neurology is concerned about gait. Because his hips are already compromised, my son’s gait is lumbering, atypical–he looks a little different already as he walks. The DNA test results haven’t been returned yet, so his team of docs hasn’t formally announced which subtype of LGMD he’s got. I am certain they know, but aren’t yet spilling the beans to us until they can unequivocally label it Axis Whatever The Hell It Is He Has. As I observe them observe my son and ask him to execute very specific tasks in these functional assessments, I know they know. That’s what made this appointment hard–the look ahead. It’s already ahead. *sigh* Shit. We started the impossible conversations, the would ya rather? conversations, the “is it better never to have had something at all or better to lose it?” As I age, I am fucking irate at things that have become more difficult for me. I fume when I can’t recall labels of things, you know, super hard and rare words like cabinet or tomato. It’s aggravating not to be able to run as hard or as long as I would like because my hip pain is blinding. These insufficiencies are typical of plain old getting older and I can’t stand it. I’m imagining my son’s ahead. . . looking ahead, among other losses, he will lose his ability to walk. The frustration I can’t bear after forty-eight relatively good years health-wise will pale in comparison. We didn’t spend much time on the impossible conversations. It’s a futile, foolhardy exercise. And I KNOW he can still walk right now and we just need to celebrate that and we need to just be positive and we just need to be grateful for that and we just need to help him understand his disease and I swear to the stars that anyone directing me to just do anything is in line for a sternly-worded email! I KNOW.
In other news, it’s my big kid’s birthday today, and he is so, so excited! His class went on a canoeing field trip today. I’m borderline terrified, but to this hour I’ve not gotten the “come get your kid, he’s capsized his canoe” phone call from his teacher, so I’m pretty sure he is still among the living and with any luck, among the dry. Happy birthday to my dear, dear boy. How do I love you? It’s greater than gravity, kid. 2015 made you taller than me. 2015 handed you a burden most people, your own mother included, can never understand. 2015 forced you to search within and find strength you never knew you’d need. You’ve made me a better person through all this, and for that I can say I am grateful. I love you, big kid.