This week is a bit awkward for a newsletter, especially when mine goes out every Tuesday/Wednesday. Even though this is only my third one, I’ve gotten into a nice groove of working on a draft over the weekend and then refining it on Monday/Tuesday. In this agonizing limbo we are all in this week, I want to talk about something completely different than my usual “line of work”.
It’s about LOVE in impossibly tough times that I hope you find inspiring and grounding (and a break from the polling results). It’s about my son, Kubi (short for Kublai).
Kubi was born with a rare chromosome disorder. He is six year old, but is non-verbal and doesn’t crawl or walk. He also has vision and hearing loss, in addition to a rare form of epilepsy resulting in multiple seizures daily. But these physical conditions don’t define him (though doctors, schools and many others do). He is the most beautiful, resilient and patient child with a smile that makes my knees go weak and heart leap.
I was in church a while back, where I always stay in the “lobby” (I’m a terrible Catholic and I don’t know what the proper name for this area is) where rambunctious children and crying babies hangout waiting for the interminable service to finish. I walk around the hall with Kubi because he often makes sounds that would disturb others around him during mass. Across the hall, I saw a mother with her son in his 20s, who was in a wheelchair and had similar physical challenges as Kubi. As I rudely stared at them, I saw the son make unintelligible gestures and sounds to his mom, who then hugged him in the most intimate and loving way. Watching this, I was taken back by own reaction because I could not stop crying for a long time after that mass.
It wasn’t that I was sad or felt sorry for that mother or for me. (Maybe there was some of that too, now that I think about it in hindsight.) But what I realized at that moment was that I was one of the few “lucky” people in the world who knew the love she felt for her son. That special, powerful and unique love that obliterates all the uncertainties, fear, hurtful words, pitiful stares and heartbreaks that come with having a child with rare disease and medial complexities.
Under a normal circumstance, I would never dream of talking about something this private and intimate. But, I feel that this election time and the pandemic have been so tough for everyone in their own way, I wanted to share my little story with you in the hopes that it brings you perspective and gratitude.
Trying to see the world through my son’s eyes and hear through his ears keep me grounded and inspire me to be strong, authentic and grateful as Kubi charges on everyday despite all his obtacles and naysayers. See you next week.
(I’ll resume What’s Your Wonder next week.)