Last summer my husband and I drove with our two sons down to Los Angeles. That's a big drive with 2 kids, but we've done it six times before, and we can make it in two long-haul days. The first time we drove to L.A. was in 2006, to take our oldest son, now 10, for a pre-surgical consultation. He was born with untreatable epilepsy so severe that he was dying. He had failure to thrive, a gastric feeding tube, developmental and physical delays. He started services with Early Childhood CARES at age 8 months. He had seizures sometimes 50 times in a day. My husband and I, our pediatrician and our son's neurologist had all resisted the idea of brain surgery for two years, but ultimately, it was the only thing left to try. He had his first brain surgery at UCLA at age 2 � years to remove part of the left side of his brain, (a partial hemispherectomy). Even after that he still had seizures. His second surgery was at age 6 years and he hasn't had a seizure since then. The left side of his brain is now mostly gone, (a full hemispherectomy). We have spent years engaged in the intense medical care of our oldest son, but that's behind us. He still receives a great deal of support for all areas of development.

The L.A. trip this summer was non-medical. We went to Disneyland to meet with other families from around the country whose children have had hemispherectomies. We spent 3 days at the park and all the families stayed at the same hotel. Our kids looked oddly alike - one side of the face and body droops, one arm and leg are smaller on the weak side, the gate is distinctive... so distinctive we could see each other coming from a distance at the crowded Disney park, and we would walk toward each other like nomads in the desert eager for connection with another human. Families reached out to each other as if we were long-lost friends. We shared so much we never had to explain. Moms gave each other knowing looks full of pain, relief, fear and hope. Dads were brave and strong. All the kids and their siblings played together at the hotel pool. Everyone was happy to be around others who were experiencing such a bizarre and difficult thing as having a child with half a brain. Some kids are still struggling with seizures. Some kids are thriving. All of them experience significant learning disabilities, behavior and sensory challenges.

I learned something very important on this trip with our son. When you have a child with special needs, it feels like you can't do enough to help him or her. And yes, therapy is critical, and committed parenting makes a huge difference for successful outcomes. But there were 20- and 30-year olds at the L.A. gathering who had had hemispherectomies decades ago, and they gave a talk. They all had cognitive and physical disabilities, and they all said that loneliness and isolation were the worst things for them, and that the depression that comes from loneliness and isolation was a constant challenge. Social connectedness was what really mattered, more than anything else, and this has given me a new focus in the way I think about my son's future. Yes, I want him to read and write and have stronger problem-solving and self-care skills. But I also want him to have relationships that give him joy. I want him to feel a sense of community and connectedness with people: neuro-diverse peers, neuro-typical peers, bus drivers, teachers, waitresses, babysitters, family, our neighbors, all the people who make up his community. I want to support his emotional well-being the same way I support his IEP goals. We're all different...so what...as long as we're happy and connected to our world.