A year and change
At least once a week I feel guilty about not writing here more often anymore. I should be telling his story better – for therapy, for our memories, for him, for other families going through the same. The pangs don’t last long, thankfully.
Just a year ago was a brutally hard time – one of several over the previous two months, and with so many more to come. Wesley’s bad reaction to PEG-Asparaginase was an apparently huge hurdle both immediately and for his long-term care, but one which ultimately we got through. He was beginning to lose his hair, and almost every day suffered so many indignities that it was often hard to see how he’d survive in both body and spirit. As important as his basic survival is, it was almost as heartbreaking to even consider that the twinkle might go out – that wry humor, the trust and love he put on display, his indomitability at all things – long before he had the chance I dreamed for him to have, to get through adolescence with it.
A year on and things have changed so much. Ruth has brightened up our lives, giving Wes the constant companion he needs during the good and the hard times. He’s still in treatment regularly, but it no longer feels like it defines his every day. Most days he’s just a 3-and-a-half-year-old, for all the good, the bad, and the crazy that brings with it. He’s potty trained, and takes great pride in it – his toilet escapades are more definitive of his experience these days than leukemia, a trade-off I’m happy with. He’s far too mature about taking his medications, but the occasional tantrum about it reminds me that the natural spirit of a kid his age is still intact and kicking. We limit his material spoiling to moments where he’s had to endure a lot – a quick trip to Target for a new toy after a terrible visit to a hospital is a small cost and a huge deal for a kid who needs a little boost.
He’s not out of the blue, but we are happy to live like he is most of the time. We know the reality, the data, the anecdotes, and we do everything we can to protect him without sacrificing his childhood – it’s a tricky balance, but I think we have found ours. He can’t live in a bubble, and – thankfully – doesn’t need to. He’s strong, his numbers remain good, so we have to move on as much as we can, to let him have the life he deserves.
We still have scares, unplanned ER visits, days where we hover with a thermometer, but we have a lot more normal days. He still doesn’t eat great – in variety or quantity – but he’s growing, and all his tests come back good. His physical condition is good – he still struggles with balance and walking but it rarely ever slows him down – and mentally and emotionally he seems as good as we could hope. He’s bright, funny, and curious, and trusts both of us. He struggles with enunciation, likely thanks to chemo side-effects, but has an excellent vocabulary and we’ve been told not to worry, so we don’t. He doesn’t have to be perfect, just as long as he’s still with us.
Over the past few months I’ve shared a bed with him nearly every night, which has been an extraordinary comfort for me – it’s given us a chance to bond a lot, and to work together through the nightmares, the late-night potty runs, the steroid hunger and restlessness. He’s in his mom’s hands most days, but I wouldn’t trade these nights for anything.
Wes still has more than a year of treatment to go, and it’s really hard to see what it’ll mean to be done. He’ll have a lifetime of monitoring ahead, there will be therapy for the side-effects he’s accumulated, but mostly we hope he can move on. Someday he can tell this story himself, about something deep in his past, with nothing but second-hand memories and a constant sense of annoyance at his overly-concerned parents. If he has kids someday, maybe then he’ll finally understand.
