On Friday I was scheduled at 1:00 PM to deliver a power wheelchair to a kid I have known since he was 6. He is now 22 and enduring the things that end-stage Duchenne Muscular Dystrophy has delivered him. When I got to the store Friday morning the wheelchair was still unassembled. It took our assembly crew until 5:00 PM to finish the assembly. Just what I wanted to do on my Friday evening! Well I loaded up the chair and headed out for my one hour drive to Justin’s home. About 5 minutes into the trip, in Friday evening traffic, I remembered not seeing the wheelchair’s charger. I called the assembly department and was told that they had forgotten to load it. SOOOO, I turned around and headed back to get it. Again I head for Justin’s house, now at 5:30 pm. On the drive I kept wishing I hadn’t agreed to do this on a Friday night but sucked it up and went along my way. When I got to Justin’s house (his family has had one tragedy after the other, very poor and have little food in their house) I unloaded his very complex new wheelchair and the 2 boxes of accessory parts that I still had to install. Again I thought how much I wanted to be home.
Well I went inside and saw Justin and totally let go of all selfishness. This kid, now 22, can’t move much more than a finger, breathes with a ventilator, and totally relies on his mother and nurses to manage all of his needs, even simple ones like scratching his nose. I spent several hours working with Justin and his chair. When his father got home he asked Justin’s mom if they had hot water. She said no so he excused himself. He came back about 40 minutes later all sweaty and dirty. I asked him what he was doing and he told me how they heat their water with a wood stove/copper coil contraption that he had built. He had been cutting and splitting wood for the fire. I was amazed!
So as I work on Justin’s chair, breaking many times for him to get assistance from his nurse to pee, we chat about life, his life and mine. He is still concerned for others even though he is in the condition he is in. At 9:30 his father asked me if I wanted to call it a night and I said I would work as long as it would take to get the chair completed. But he said Justin was tired and wanted to get into the bed. Just before getting into bed Justin begins to get sick and throw up. He is hanging from his hoyer lift sling, over top a bed pan and throwing up. Mom is helping him with this; both she and Justin stay calm. So I started packing things up when his dad asked me if I’d join them for a beer and some homemade sausage balls. I said yes and we went out to sit on the porch. His father looked into the sky and said “what a great night”.
WOW, here was this man that has his oldest child dying from a horrible disease, he drove a truck for the past 5 days from NC to Michigan, to California and back, hoping the entire time he would return to find his son still alive. He gets home to a house with little food and has to chop and slit wood in order to heat their water. All this and he still sees this as a great night.
I felt the need to share this as it moved me beyond anything I could write or read. Those of us who are selfish at times need to be thankful for many things including but not limited to: healthy families, food in our house, the ability to scratch our noses when we feel the need, the ability to use the bathroom on our own without an audience from a complete stranger/new nurse, hot water on demand…
Have a safe trip home and have a great day.