I believe the only person that can make anticipation enjoyable is none other than our friend Barney, and we’re not talking about Joshua’s favorite purple dinosaur.
Other than HIMYM marathons, all other types of waiting in life is a drag. Waiting to play the big game. Waiting to hear back from a school/job. Waiting to see where you and yours are moving on to….
However, in the world of Cerebral Palsy—or any type of life long medical condition for that matter— waiting can be an all too familiar way of life. But it’s not just waiting for “normal” things like the premiere of Mocking Jay Part 2 (pre-show tickets anyone?). For my brother Josh, the waiting game has much bigger stakes at hand.
Josh is constantly subjected to delays. Inevitably, there will be a time when he has to patiently await for repairs on his communication device, motorized wheelchair, and other equipment; approved Speech/PT/OT/doctor referrals; triennial dental visits, food supply/equipment shipment, and much more—usually these things take months to see through.
His stakes are bigger than yours or mines.
You see, what Josh waits for is the access to basic necessities of living—theaccess to, we’re not even talking about receiving them. When his ECO 2 communication device malfunctions and ships to repair (every so often), Josh is limited to communicating bysome hand signs for the following months. When his motor wheelchair started slowing down, it took insurance a loooonnnggg time to approve the ordered parts, leaving Joshua’s mobility at the control of someone else. Recently he started receiving speech pathology services to assess a faster switch method for his communication device. That too took several months to approve.
He waits and waits for the ability to do life’s simplest things time and again: talk, move, be an independent and proficient adult.
I am wrong to attribute the hold ups specifically to his CP diagnosis. By nature of our physical isolation living on Kauai along with systematic processes, Josh must wait longer periods for orders to ship, outsourced and outer-island services to be arranged, insurance approval from abroad, and so forth. I am also wrong to say that he has it “bad”. Surely there are those whose conditions require 10x the care and equipment. For any and all who live with a condition, the waiting game makes navigating life slower and harder.
However, there is one thing to be grateful for. No, I’m not talking about the P-word you’ve been thinking about reading this; though it is definitely a blessing, “Patience" is reserved for another future post. You’ll just have to wait for it.
I’m talking about “Possibilities”. To have to bathe in anticipation of equipment, services, or needs means that technology is advancing, giving people like Josh reasons to wait. These reasons lead to opportunities of independence, possibilities that expand their potential. I mean, he didn’t wait for any computer repairs in elementary school because such communication device was not available for him then. We can’t wait for something that does not exist. What companies like Prentke Romich Company (PRC)—that’s Josh’s communication device manufacturers—do is invent technology to literally and figuratively give voice to the voiceless. Time may separate him from things he needs, but we are so grateful that he has these resources available to him. They have opened up so many doors for Josh.
Check out these cool organizations that are blazing the trails in providing people with special needs access to their phones, jobs, competitive racing:
Josh may have to endure the waiting game a lot, and his stakes at times means he’s without his ability to fully live. But, when he’s got his computer and chair working together, he’s a man on a mission. Speaking of waiting, here's the video you've all been anticipating.