There were airplanes in primary colors on the walls of the developmental clinic. Red and yellow and blue and green planes that seemed to move the longer I looked at them. That’s what I remember from the day my son Charlie was diagnosed with cerebral palsy. It’s a trippy thing to process that kind of information when the room looks like the inside of a Chuck E. Cheese.
“This is a good thing,” the doctor said. “Now that he has an official diagnosis insurance can cover the essential resources.”
I left woozy with the overload of information and referrals. Still, I clung to that one thing: we could get Charlie whatever he needed.
And the doctor was right, up to a point. In his first three years of life, Charlie had access to everything the state could provide – home nurse visits and developmental, feeding, occupational and physical therapists. We said yes to everything, because of course we did. Charlie was the happiest baby you’d ever met and we were going to do everything in our power to help him continue to thrive with all the resources we could wrangle.
Insurance was also kind to us at first. With a tracheotomy and a g-tube, it was clear Charlie required certain medical equipment – feeding pumps and trach kits and pulse oximeters. But after several surgeries, which made it possible for Charlie to breathe and eat on his own, we found ourselves in a bizarre no-man’s land. Hooray, Charlie was more independent! Oh no, now that Charlie more was independent – insurance would cover less, do less, offer less for our boy who now wanted more.
When he outgrew his gait trainer and his stander, insurance decided not to cover the cost of new ones. I applied for grants and supplemental insurance. Sometimes we got it. Oftentimes, not. The one thing that was constant: it was always a battle.
And then one chilly March morning right before Charlie turned six, I stood in the parking lot of Charlie’s special needs preschool chatting with another mom who passed on a gemstone of information that would change our lives: The United Cerebral Palsy Foundation. UCP. They had an office downtown and much like the library, you could check out equipment for free. Free!
The next day, I pulled into a pothole-riddled parking lot and rang the doorbell of a nondescript brick building that was in serious need of an overhaul. An elderly woman with glasses on a chain answered. She showed me to a warehouse at the back of the building where medical equipment sat waiting, tagged and coded, like the world’s best consignment sale, except it was free. I found an adaptive tricycle, assisted bathing chair and foldable wheelchair all perfect for Charlie.
“When do I need to bring these back?” I asked.
The woman waved her hand, knocking into her glasses. “Oh, whenever he outgrows it, honey. No rush.”
I have visited the United Cerebral Palsy Foundation several times over the years, but the last visit was the best one yet. Our request for a new stander had just been denied for the fourth time and I was desperate to get Charlie back on his own two feet. Two days before Christmas, hidden in the corner of the UCP warehouse, we found a brand new, unused stander the exact size Charlie needed plus room to grow and brought it home that day.
When the world says no to you so often, you begin to expect it. You resign yourself to the fact that the battle is uphill, both ways, and you curl your shoulders against the wind that is against you. So, when these freebies come your way, it feels like magic. It’s the intermission you desperately needed to rest, breathe and remember that there are good things and good people in the world.
It’s doesn’t always have to be a fight. Sometimes it is a gift.
Jamie Sumner is a special needs mom and author.
Jamie-Sumner.com
Author of the middle-grade novels:
