Strong to the finish…

In the summer of 2013, a dear friend ran across Mongolia. Yes, he ran, one foot in front of the other, across old grisly Ghengis Khan’s stompin’ grounds, from the Western steppe, 1,500 miles to the Eastern exit into China. 30 miles a day, 6 days a week, 8 grueling weeks. To this day, I marvel at his phenomenal feet (intentional spelling)! I’ve got nothing but props for my brother and his amazing support team. His lovely wife, 2 awesome kids, and a few local and international accomplices, rallied around him and helped make the journey a destination and success. The pictures he shared that summer were inspiring, gut wrenching, and epic. It was, no doubt, an insane and forever memorable summer. Strong to the finish!

In the summer of 2014, my son was born with Down syndrome. Months before his birth, perhaps wanting to be more like my buddy, I was training for my first half marathon. Yeah, a measly 13.1 miles. And guess what, I didn’t make it. On my longest run before the race, a 10 mile run, on the last 1/4 mile of the run, I suffered a significant stress fracture to my left tibia. I ended up on crutches and a cane for months. My son was born just as I was graduating from crutches to cane. Strong to the finish? Not in the way I had hoped.

I was feeling quite puny and pathetic as his birthday arrived, and the summer storm was just beginning. As I hobbled back and forth between my wife’s recovery room in the maternity ward and the neonatal intensive care unit, my son struggled to survive. Along with Down syndrome, he was born with duodenal atresia. Basically where his stomach connected to his intestines, there was a cul-de-sac, a dead end. In order for him to survive and be able to eat and do his business, the dead end had to be turned into a through street. Two days after he was born, a surgery connected the two roads to allow the necessaries to pass through. The procedure was called a duodenoduodenostomy. Try saying that out loud a few times fast.

The surgery was a success in terms of clearing a way and connecting all the parts. Yet shortly after surgery, his whole abdomen began to swell up like a balloon. He developed what they call ascites, where basically all the extra space in your abdomen, the interstitial space, begins to fill with fluid. It looked like any minute my poor son’s belly would pop. And so I prayed and prayed and prayed, and honestly felt punier and punier and punier. I hate even typing that word puny, it feels so emasculating.

But my son, he was a trooper, a silent giant, no cries or complaints. He patiently endured. He had IVs and tubes, wires and lines, gizmos and gadgets, connected all over the place. His days and nights were filled with pokes and prods, beeps and bleeps, test after test after test after test. As his dad, I was overwhelmed. I felt like Christian from Pilgrim’s Progress, a burden on my back that I could barely stand up under. But I had to stand, even with that bum leg. My wife and two other kids depended on me. I had to be strong, captain my ship, weather the storm, trim the sails, and tell all aboard that all would be well, this dark dreadful night would pass, and the calm of dawn would eventually arrive as the blessed sun crested the horizon. Or at least I hoped it would.

If you’re a dad and have a child with a disability, I hope you can relate to how I felt that summer. Summer time is supposed to be epic, like my buddy’s run across majestic Mongolia. And here I was, a puny, pathetic who couldn’t even run a half marathon and was now welcoming a disabled son into the world, while hobbling around the hospital with a cane. I write with these stark strokes because this is reality brothers. The pain is real, the kick between the legs hits us hard and we drop to our knees, incapacitated, wondering what just happened, where’d we go wrong, how did we get on this crazy train. Why am I the one left with a limp?

I write today for you brother. Don’t give up…put one foot in front of the other…strong to the finish.