The fact Grant was different might had captured more attention but it was about the time the genetic testing was back that my siblings and I converged together to care for my father. My dad was diagnosed with terminal brain cancer with weeks, if not days left to live. Priorities fell into place. This great man needed his kids to be more than we'd ever imagined being. That was the first lesson. It didn't matter this sweet baby was different or what the official tests said. Seeing him, holding him, just knowing him helped make us all a little bit stronger and it came at a time we needed it most.
He loved to be held and rocked and cuddled. He rarely cried. It didn't matter who was holding him, this child has always radiated love and patience and kindness. His mom would say, "Watch out, he's grabbing hair now," and I'm sure her warnings were not without reason but most of the time, when he reached for hair, it was with a gentle brushing touch, as if he was amazed that something could ever be so soft and shiny.
I don't know when he started hugging back but I can't remember a time that he didn't so it must have been from the beginning. The kid is an Ahhhh-MAZING hugger. This was the next lesson. He doesn't hold back. He doesn't cling to the past. He doesn't fear the future. He doesn't calculate the appropriate level of love he should emit, he simply loves and you feel it in his hugs. He grips you with both arms, pulls you in close and then melts into you until his little body is limp but his arms and legs have you completely wrapped. It's pure. It's genuine. It's raw love. Why don't we all hug like that? Why don't we all love like that? Why do we complicate the simple things? Love is boundless. Why do we protect it, limit it and hide it? Jesus. Let that sh -- stuff -- flow!
His hugs changed me. His capacity for love changed me. His patience changed me. His simple goodness changed me. I'd been an empathetic caregiver, nurse even, for years but just being near him changed me into someone better. I worry less. I let go of little things more readily. I don't care if I don't fit in. It's okay to be different. It's okay to stand out. It's okay to not hit landmarks and to have my own learning curve. I love more openly. I give more frequently. I invest less materialistically and much more spiritually. I don't hold onto anger as long and have learned that hate is truly a toxic waste of energy.
Grant is full of love and joy and discovery. He has his own developmental timetable and schedule that is defined only by his own growth. I love it. We aren't rushed to meet the next landmark or disappointed when he doesn't, we just celebrate when he does. It's a different way of looking at things and sooooo much more enjoyable. It makes us all just a little more present in the moment. I'm not going to lie, living in the present is the most altruistic feeling I've ever experienced. You want to feel connected to something bigger than yourself? Live in the present, if only for an instant, and you'll understand what I'm saying right here.
He's learning sign language because 90% of Down Syndrome kids have some sort of hearing impairment and his parents wanted to give him his best shot at keeping life long communication skills. (Did I mention his parent's are incredible?) An afternoon with Grant is a bit like watching the visiting team call plays from the sideline, but I've also learned that most communication is non-verbal, non-sign, and all we have to really do is pay attention. That means putting down the "To Do" list, looking away from electronics and really making a human connection with each other. We have never needed words - or signs - to have an amazing day or communicate about what's going on, though I have to admit, we are both working on each other's language. He is amazingly patient with me and we laugh a lot about sounds and signs and what it all means when it's mushed up together.
My nephew has a different perspective than mine. His is more true, untainted and real. He calls it like he sees it. He likes what he likes, which is nearly everything, but if he doesn't like it, he doesn't pretend to like it. There is no drama, no emotional screen play; he simply lugs it over his shoulder and moves on. Like pumpkins. One of my best days with him was on his class field trip to the pumpkin patch. It turns out, he's not really a pumpkin fan. Instead of throwing a fit or ruining the fun of the day, he just threw his pumpkin somewhere behind him and kept pushing forward. Goats were at the pumpkin patch, too, and he loves goats. Wow, if we could all understand everything that just happened right there I think we'd live in a pretty amazing world, wouldn't we?