Orion turns 26 years old this week. I can’t even wrap my head around that. He’s approaching this birthday with typical enthusiasm. He’s excited to have a theme to use in his interactions with people, especially when he knows they’ll all wish him well. He’s excited about going out to a new restaurant he learned about from the guy who delivered his new wheelchair last month. In fact Orion invited the guy and his wife to his birthday dinner and still holds hope they’ll be there.
For me every one of Orion’s birthday’s is a little bittersweet. I love seeing him so happy. I love watching him shift and grow as he explores new ways of being in the world. I love that he doesn’t care at all about presents, he just wants attention and hugs. His upbeat attitude is contagious. I don’t know what I’d do without him.
But I also understand the limits of his independence, which become more obvious, more pronounced as he ages. He doesn’t have aspirations for a career, or even a job. He’s happy to help out when he’s asked and able, but even his day program hasn’t found a part-time volunteer placement for him in the last 2 years. His future possibilities get smaller and smaller with each passing year.
There’s also my part in all of it. I’m not sure that it’s still the best option for either of us to be “tied at the hip”. As his primary caregiver I’m very much aware of how little I’m able to do to move him forward. That’s been particularly obvious these last few months when our mobility has been additionally limited by my recovery from the surgery. Caregivers are hard to come by. Orion needs stimulation and he’s become too comfortable with the status quo to be motivated to move forward.
When Orion was born we were told that he’d probably be a vegetable and would be dead before he was 5 years old. I didn’t think that the evidence supported that conclusion then, and clearly rejecting that comment was a good decision. I have an enormous amount to be grateful for. Orion has been such a blessing in my life. He’s an inspiration, a delight, and a wonder.
Orion, may you continue to take joy in the world around you. May you continue to work at developing social interactions and the skills to build relationships. May you find ways to do the things you enjoy that are also productive and sustaining. May you always be open to new experiences, new people, and new possibilities for your future.