“Hey Rai,” I said, “pack your bags! We’re going to head over to Wrightsville for a few days.” And I was startled when he hesitated. He looked deep in thought for a moment, and then looked at me and said, “Well…. I hope you have fun on your vacation. I’ll be having dinner with Sayde and Jacob and some friends Friday night, and we’re going to the farmer’s market on Saturday morning. Saturday night we have a birthday party to go to, and on Sunday, we’ll be going to church. So… I guess I’ll just go with you to the beach some other time.”
I vaguely remembered smiling and saying “Okay” but the reality is that that part is a blur. What I honestly recall is running back to my house, closing the door behind me, and bursting into tears. Not tears of sadness, not at all. These were literal sobs of joy; because here was my son living his own life, and it did not require me to be a part of it. He was claiming his young adult space in the world, with all the supports in place to do it beautifully. It was everything our family had been working towards for years- but I had become so caught up in the day-to-day effort of pulling all the pieces together that I did not actually see that it was happening, in real time, right in front of me.
It’s easy to lose sight of the objective when we become so deeply embedded in the process; and waiting for an idea to catch hold and move in some kind of tangible direction can feel endless and impossible. I recently read an article that stated that the average American will have spent between 3-6 months of their lifetime waiting. And if you’re an average American who has a child with a disability, that estimate shifts to 1.5-3 years of waiting. This is “waiting” in ways that are semi-quantifiable, and does not account for the type of drawn out and invisible standstills that are an inherent part of moving towards systems change, perspective adjustment, and the hope that something meaningful will emerge out of efforts to build a sustainable life for a son.
But there is power in perseverance. And if I’ve forgotten that recently, I was reminded again two Sundays ago when Raimee was asked to perform a few songs and recite some poetry on the Haw River Ballroom stage during the annual holiday market in Saxapahaw. He was not asked to do this because this was a time or space set apart to acknowledge individuals with disabilities; he was asked because he has a talent for music and spoken word; and someone in the community noticed.
Like every parent of a child with a significant disability, I have spent countless hours of my life worrying about my son’s future, how his carefully constructed program will work after I’m gone, and what I can do in the days I have left to ensure the continuity of his happiness and overall quality of life. As we well know, federal dollars and access to healthcare and direct supports are volatile, group home experiences are unreliable, and the ability to participate in social activities (for Raimee) is largely dependent upon the availability of others to provide transportation and organization.
What has always made the most sense to me, and what has also felt the most intimidating, is creating community for Raimee where he is known, loved, and cared about by those who may not run in the traditional disability circles. And while I have felt ourselves making slow strides towards that goal, it was a precious moment on that particular Sunday to be able to watch my son step into a reality where he is recognized and celebrated as a fellow friend and neighbor.
The psychological impacts of long-term waiting can be devastating, and can often lead to hyper vigilance, neurological overload, and cynicism; traits that further exacerbate hope, alienate connection, and promote burnout. I think it’s fair to say that we see this happening on a regular basis across the current cultural landscape.
It’s hard to keep the faith. But I believe that now more than ever, we need to hold steady, keep doing our work, sharing our stories, and shining our light. The greatest gift we can give to ourselves, to each other, and to our world is our unwavering love, our tenacious spirits, and our expectation that, in time, we may be given a moment to see that all the energy we have been putting out into the Universe has suddenly come together to create one more chapter in the narrative we have all been dreaming about.
My prayer is that we can open ourselves up to noticing each small step, each precious moment, and lean into the words of the late and extraordinary poet, Andrea Gibson, who said, “I had no idea how much would change when all that mattered became all that mattered."
Wishing you all a holiday season filled with inspiration, motivation, poetry, and love in abundance.