Oh, yes, our children are fighters

We found out this weekend that a young man with medical complexities who we've known for years  passed away on Friday. Josh's parents, Erica and Steven, had filled his life with family fun, activities, Friendship Circle events, trips to Disney World and all the love and devotion. 

During the virtual funeral service, Steven asked people to picture what a fighter would look like. He noted that he imagined we might have been thinking of someone who likes to shout and argue. But, no: Josh was a fighter. He had endured many, many surgeries in his 21 years, persevering with spirit and tenacity.

I've been thinking about Josh a lot these last few days, once when Max was climbing up our front porch stairs. He was grasping the hand rail with all his might, and struggling to find his footing on that first step. He'd put his weight down on it, get wobbly, then step back. Start, then step back. Start, then step back. Just as I was about to lend a hand, he lifted himself onto the step and motored on up. 

Obviously, people with disabilities navigate life the best that they can—they aren't heroic or inspirational for doing that. But it takes a certain inner force to constantly surmount obstacles, be they physical ones or 
the biases people have. To endure surgery after surgery and medical intervention after medical intervention, as Josh did. To maintain your sense of humor, as Josh did. I have a vivid memory of him from years ago. I'd taken Max to an event at a museum, and by the time we headed out, Max was grouchy. We found Josh waiting outside with his mother, his dad had gone to get the car. Max stood by Josh's wheelchair and I don't remember exactly what went on between the two of them but Max cracked up. In the car he said, "Josh is funny!"  

Our children are fighters isn't something that parents of children with disabilities say to reassure ourselves about the challenges they face. We know it. We see it. We live it with them. Our children have shown us strengths that we ourselves have never had and superpowers we never could have imagined. They are heavyweight champions of tenacity. They are everyday warriors. 

Rest in peace and power, Josh. Your strength and spirit will forever stay with us.